JUST IN!

Received two new interpretations of NED or "No Evidence of Disease" in the mail:

1. NED - "Not Expecting Death"
2. NED - "New Experiences Desired"

These are COOL and so much more entertaining than the original.

I wonder if we could come up with alternates that are even more useful?

e.g.

Never Envisaged Dying
New Energy Discovered
Novel Expectations Delivered

Christmas News

I am delighted to report to all my readers that the latest CT scan results have arrived. Within them there is a line that is possibly the best present on which one can end a year.

The following was stated:

"No evidence of metastatic disease within the neck, chest or upper abdomen."

I know that this leaves a lot of the body unexplored.

Given the history of migratory cancer cells, I know this does not mean that the little buggers are not lurking somewhere else.

Nor does it mean that they actually do not exist within the areas that have been looked at, but are so small that they cannot be detected by the process as yet.

Regardless of the shortcomings of the information I choose to look at the data with some relief and take heart. So you might as well adopt the glass is half full approach with me and BE HAPPY!

I don't know about all of you, but I am going to try and enjoy my Christmas and New Year break.

You all take care and BE CAREFUL out there.

The very last thing I want to do in the near future is to have to attend someone else's funeral!

GRUESOME - The immediate effects of surgery to remove a tumour

Some people have written to ask what it is like to have a recurrence of a cancer just under the collar bone and what it takes to deal with it.

In my case it required surgery and some follow up chemo and radio therapy.

For those people who have always wanted to see me with my throat cut and still find it unbelievable that I would actually PAY to have this done to myself, this image of the aftermath of the removal of yet another tumour and half a thyroid will provide the evidence that they need that it's true I DID pay to have my throat cut.

To those who faint at the sight of blood - oops - too late!

For those who have my well being uppermost in their minds, some clarification.

This pitcture was snapped in May and since then of course the scar tissue has healed, and thanks to the very clever doctor who performed the operation, the line of the scar is actually at the same level as a natural fold in the neck and so is now almost invisible.

If anyone finds this image offensive please let me know and I will remove it from the site.

Update 15/11/2006

Since the last time that I wrote to this Blog I have had a few more days to recover from the surgery.

Most of the pain is now residual and I actually have been able to 'massage' the area around the implant as recommended by my surgeon so that the swelling is somewhat reduced and the 'shelf' like appearance of the implant is also reduced. I have to say that it feels weird to have something 'extra' in one's throat however since it is better to have it in that to be without it I am not complaining.

In the next few weeks I will be able to go back to the ENT specialist who
has made all of this possible and get a check up and so see whether or not in his professional opinion all is well or not. This will then be followed up by some consultation with the speech therapist who has been kind enough to offer to see what she can do with the new reality that I am faced with.

For anyone who is actually interested in what all this 'feels like' let me assure them that it is quite strange.

In my case since I have now had at least three operations which have resulted in some cutting of the flesh on the right hand side of my body there is I think an incidental and unintended side effect - namely that when I stretch one set of scar tissue in the front of the body for example and it is painful I can immediately reduce the extent of the stretch (and pain) by bending in the opposite direction. However since there is also a cut on the other side which has formed scar tissue, this manoeuvre actually results in an excessive stretch on the other side. Finding that median position where all is well with both the front and back of the body is an interesting exercise.

I have been off line for some days as I have had another one of those complications that one has from time to time. Apparently I did not agree with something I ate and it managed to get its revenge by causing distress.

Let's just say that many years ago when I had some similar distress I was advised that apart from keeping up my fluids and electrolytes it was important to eat a simple diet. My then doctor advised boiled rice and bananas (to replace potassium). On this occasion I have to say that modern medicine was indicated and I have been taking some pills that I hope will settle whatever has been annoyed with me.

Nothing else of great import to report at this point.

I'm BACK!

For all those who may be interested, I am back from the hospital and have had the insertion of a GoreTextm strip into my vocal fold. While I cannot claim to have had my silky voice quality fully restored I do now at least have some ability to vocalise and feel fortunate that the breathing issues and the aspiration of food issues that were previously present seem to have been eliminated by the procedure.

I suspect that I will require some speech therapy to ensure that the voice is restored as fully as possible to what it was before my various operations however apart from the occasional croaking sound I am back!

Meanwhile as operations go this was one of the most unusual.

My anesthetist was a charming female doctor who could not have been more friendly and helpful. She explained in full what was likely to happen even in the event that something went wrong. I was to be given some local anesthetic and some drugs that would relax me, but I would be fully awake during the operation albeit sedated. This was so that the doctor could check how far in the GoreTextm strip needed to be inserted and what effect it was having while being inserted. I would need to respond to verbal commands and say things as requested so that this could all be checked.

Suffice it to say that during the operation my head was covered with something and only my eyes were open, but I felt as though I was alert and was able to respond to the doctors commands. I actually saw him cutting the strip of GoreTextm from a rectangular sheet of the stuff and then felt it going into the vocal fold and then had to make a sound and then some more insertion and then another sound and eventually when it was going in too far we knew because the sound that I produced was more akin to a soprano than anything else. So the GoreTextm was trimmed and the stitching began.

I have to tell you that this is NOT part of the process I was happy to be awake for. Feeling and hearing a needle being pushed through your own flesh is not something I want to experience again. Then again, there was an earlier part of the process in which a drill was used to drill through some cartilage and this while not painful in any way was, to say the least disconcerting to listen to.

Anyway, operation over and in the recovery room found myself being attended to by a nurse from Finland who remarked on my name and I was able to tell her (first time I could actually vocalise) about the relationship between he Finno-Ugri languages and how we actually have some words in common.

Eventually back to my room and then came the visitors.

I was of course delighted to see them and even more delighted to be able to actually speak with them. Meanwhile my neck area was swollen to the extent that it looked as though I had a goiter on my right hand side and of course as the local wore off there was the normal pain you would associate with the aftermath of an operation.

The next morning the doctor arrived and did a brief examination, told me that the steri-strips would peel off on their own accord over time and the stitches would dissolve in around five days time and that after about two weeks he wanted to see me again and if there were no problems then at the end of around three weeks I would back to being as normal as I was likely to be.

Following this interview the nursing staff made out the discharge papers, gave me my antibiotics a script for some Panadine Forte and an ice bag to hold against my neck to help to reduce the swelling.

Will all this it was back to Leanne's hotel room, an exit from there back to the car and then the long drive back to Canberra.

At present I am able to talk again although I am not yet able to move my head too much - especially to the right. I also have found it difficult to eat normally at present as there appears to be some considerable pain near the Adams Apple when I open my mouth and take in food.

Rang the doctor about this and he tells me that this is normal because he had cut a muscle and stitched it back up again and of course the body will require a little time to deal with this damage. So a little more pain for a while as yet, but at least I am assured that what I am feeling is normal and will only be temporary so overall I am now in the "just put up with it" mode.

That's all for the moment. However if anyone wants to chat or to write since I am once again home I am available.

Waiting for vocalisation

Well here I am again folks getting ready for yet another operation. This is supposed to be a small one and just for once they are actually putting something IN rather than taking something out!

Very soon I will have my own genuine piece of technology inserted into my corpus and if it works then the chances are that I will once again be able to speak. Much to the annoyance of all of those who are no doubt delighted that I have been silenced by my illness.

Wonderful stuff GoreTex - or at least so I am told. I remember reading all about it when it came into the market around thirty years ago. A great new material which could give you protection from the rain and YET was porous enough to enable the material to breathe. Thus air molecules could pass back and forth but water molecules could not.

Who would have thought at that time that I would actually be grateful to have my rainware implanted into my neck!

As usual at around these times, I am in a blue funk thinking of all the things that can go wrong and wondering whether or not it would be safer to just leave well enough alone.

I have to say that I have been looking for books about the SAS (either British or Australian versions will do) as a way of bolstering my courage. They have this motto which is something like "Who dares wins!"

I guess life is like a lottery - you have to be in it to win it.

Someone (who shall remain nameless) wished me luck with this operation. I have to say I would prefer a good surgeon with a steady hand and a fabulous track record with these sorts of operations rather than luck.

Or am I missing something?

Progress

For those people, who have been following, my personal struggle with oesophageal cancer there is further news which may be of interest.

In the recent past I have mentioned that as part of the process of repairing my body again from the latest onset of this insidious cancer I managed to lose my voice thanks to something called unilateral vocal cord paralysis.

Having investigated a number of options I have been convinced that perhaps the most useful approach to the problem is to undergo some day surgery where under a local anesthetic (and some application of a sedative) I will have an incision from outside the neck and the placement within the vocal fold a small amount of GoreTex which hopefully will bulk up the tissue and so bring the currently paralysed vocal cord back into the middle position so that the other cord can meet it and so enable the vibration necessary to produce a voice.

With any luck this is likely to happen next month and following an overnight stay in hospital (just in case there are complications) I will come back home hopefully with the ability to vocalise again. I have been advised of possible consequences and of course risks but at the end of the day I am willing to take the risks simply because not doing anything is currently a very risky business as well as the risk of pneumonia from aspirating food and/or drink is high and frankly not being able to make oneself well understood is also playing a depressing role in life.

So having explored injections of stuff and other options this is the one I am opting for.

If any one has some experience with this form of treatment let me know and then please share your experiences.

Hydrogen Peroxide, oesophageal cancer and the desire to be blonde

I wonder if anyone else has been tempted to look into the Web Log scene and see if there are others afflicted by Oesophageal cancer who have written a BLOG or have linked some sites where there is information to be had?

I have had a look at the various search engines and typed in what I think is the correct spelling for Oesophageal Cancer and got some results.

More than I expected to be perfectly honest.

However when I decided to try a variation on the spelling - either to find those who cannot spell in English or sites that use the American variant of the word namely "Esophageal" Cancer then I really started to get results.

A recent article called "How Acid Reflux Leads to Esophageal Cancer - Discovered by Researchers" is among the more fascinating finds.

The article states (inter alia)

A particular enzyme is significantly higher in cancer cells that have been exposed to acid, leading to the overproduction of hydrogen peroxide, and offering a possible explanation for how acid reflux may lead to cancer of the esophagus, according to a recent study in the Journal of Biological Chemistry.

The study found that the enzyme NOX5-S is affected by exposure to acid and that it produces stress on cells, activating genes that lead to DNA damage. For the first time, researchers have outlined the signaling pathway from cells damaged by acid, to the progression of esophageal cancer. They believe the same process may happen in the body when cells are exposed to acid reflux.

I don't know what you make of this, but from now on I am not going to read any more jokes about Blondes.

After all hydrogen peroxide used to be the weapon of choice for those teenagers who wanted to make a statement and become blond virtually overnight to join the "surfer" craze prevalent at the time.

Regardless of your ancestry, regardless of your skin and hair colour the trendy thing to do back in those days was to go out in the sun and get as brown as possible and then to dye your hair with hydrogen peroxide as a means of obtaining a blonde thatch.

I never succumbed to this teenage fascination for becoming what was known as a 'surfie', but apparently my body longed to be part of the crowd and if it was to be denied access to hydrogen peroxide on the outside then it decided to manufacture it from the inside!

Since staying out in the sun and getting brown is also an inducement for people to get skin cancer I suspect that those of us in the 1950's and 1960's who did take up the good old Aussie life style of sun, sand and surf may be exposed to greater risks of a painful death in our older age than others in the past.

Who would have thought back then that the 'healthy' life style advocated at the time would lead to something completely different?

Barretts Oesophagus

Information about this condition can be located at the following link:
Barretts Oesophagus

The result is a PDF file which of course requires a PDF reader at least.

On the same site there is even more information if you have progressed beyond Barretts Oesophagus to fully blown Oesophageal Cancer - check it out!

It is a shame that the site where I found this particular link (namely Health First a site published by the ACT Government) actually has to refer to an English source rather than Australian authorities on the subject.

Since both Barretts Oesophagus and Oesophageal Cancer are on the increase in this Territory AND that the Adenocarinoma is so deadly, it amazes me that the expertise in this community is not better harnessed nor made known to the people who live here. I guess the fact that there are less than 500,000 people in this place makes it small beer by comparison with other places in the world - but hey - this is where we live and we should be able to get advice about our local resources instead of having to traipse around the world. Even if do only do the walking with our fingers!

Did you know?

"Good health is simply the slowest possible form of death."

BRING IT ON!

(Health that is, not death!)

People with cancer need to have a sense of humour

I received this in the mail the other day and thought it would apply a dose of reality testing for all those who read this blog and actually find it a little on the dull side or lacking in humour.

Personally, since this is BLACK humour, I would have had this printed on a black T shirt, especially as green is usually a sign of growth and life (well at least among plants).

Still there is nothing like a little self reflection especially when things are really bad and it looks like there may well be no tomorrow.

Some interesting documentation on Cancer

What a treasure trove the Australian Government has proven to be when it comes to finding information which is likely to be of assistance to carers and people who are ill with cancer.

Take for example the site:

http://www.nhmrc.gov.au/publications/subjects/cancer.htm

At this site there is a list of some publications on the subject and it shows what policies, guidelines and documents are current, under review or rescinded.

Great site to visit even though some of the documents are long.

For example take Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer

It is 246 pages long but well worth the look or the download if you - as a consumer of health services for cancer want to know about what these guidelines are suggesting to the practitioners that will be providing services for you.

Don't you just wish researchers would confer!

From the ABC

Calcium supplements fail to prevent fractures: study

A healthy lifestyle and eating more fruit and vegetables could be better for preventing bone fractures than taking calcium supplements.

Researchers from the University of Tasmania's Menzies Research Institute have compared 19 international studies on calcium supplements for children and their effects on bone density.

They have found the wrist is the only area where supplements improved bone density, but not sufficiently to reduce the risk of fractures either in childhood or as an adult.

The study shows supplements have no impact on the common adult fracture zones of the hip and spine.

The study's spokeswoman, Tania Winzenberg, says more research needs to be done on whether more fruit and vegetables or vitamin D supplements could improve bone density in children.

"Maybe we should be starting to look at things like vitamin D supplementation in children or looking at the effect of increasing fruit and vegetable intake in children on bone health," she said.

Dr Winzenberg says in the meantime, having a healthy lifestyle is the best advice.

"Still maintain adequate calcium and a balanced diet, still maintain adequate physical activity and for bones, particularly weight-bearing physical activity, things like walking, jogging and playing sport, and avoid smoking," she said.

The research has been published in the British Medical Journal.

I sometimes wonder where all this research is going!

BBC NEWS | Health | Vitamin D 'slashes cancer risk': "
Last Updated: Friday, 15 September 2006, 23:17 GMT 00:17 UK

Vitamin D 'slashes cancer risk'

Taking vitamin D tablets could substantially reduce the risk of pancreatic cancer, research suggests.

For the new study, which was led by Northwestern University in Illinois and features in Cancer Epidemiology Biomarkers & Prevention, researchers examined data on more than 120,000 people from two large, long-term health surveys.

Taking the US Recommended Daily Allowance (RDA) of vitamin D (400 IU/day) was found to reduce the risk of pancreatic cancer by 43%.

They said further work was necessary to determine if consuming vitamin D in the diet, or through sun exposure might have even more of an effect than taking supplements.

Lead researcher Dr Hal Skinner said: "I would make no specific recommendation for vitamin D supplementation to prevent pancreatic cancer until we can carry out a trial to determine definitively who might benefit from such an intervention."

Henry Scowcroft, science information officer at the charity Cancer Research UK, said: "The results of this study don't mean that people should take vitamin D supplements to ward off pancreatic cancer, especially as vitamin D can be harmful in large quantities.

"As the authors themselves point out, this is the very first study to find any association between the disease and vitamin D intake.

Pete's Points

from http://www.nlm.nih.gov/medlineplus/ency/article/002405.htm

"Vitamin D is a fat-soluble vitamin that is used by the body in the absorption of calcium.

Vitamin D promotes the body's absorption of calcium, which is essential for the normal development and maintenance of healthy teeth and bones. Calcium is also important to nerve cells, including the brain.

Vitamin D also helps maintain adequate blood levels of calcium and phosphorus.

Vitamin D is found in the following foods:

• Dairy products
  • Cheese
  • Butter
  • Cream
  • Fortified milk (all milk in the U.S. is fortified with vitamin D)
• Fish
• Oysters
• Fortified cereals
• Margarine

A vitamin D deficiency can lead to osteoporosis in adults or rickets in children.

Excessive doses of vitamin D can result in increased calcium absorption from the intestinal tract. This may cause increased calcium resorption from the bones, leading to elevated levels of calcium in the blood. Elevated blood calcium may then cause calcium deposition in soft tissues such as the heart and lungs. This can reduce their ability to function.

Kidney stones, vomiting, and muscle weakness may also occur due to the ingestion of too much vitamin D.

The best way to get the daily requirement of essential vitamins is to eat a balanced diet that contains a variety of foods from the food guide pyramid.

Vitamin D is also known as the "sunshine vitamin" because the body manufactures the vitamin after being exposed to sunshine. Ten to 15 minutes of sunshine 3 times weekly is adequate to produce the body's requirement of vitamin D.

So as usual we are left with the best advice that has been around for millenia, namely "all things in moderation".

I sometimes wonder where all this research is going

Abbott under fire? Let's hope it gets hot enough for him to be forced out of office

Abbott under fire over 'radical' public hospital management plan. 13/09/2006. ABC News Online

Federal Health Minister Tony Abbott is continuing to push for public hospitals to be managed by the private sector.

You have to be kidding!

I am now certain that Australia is seeing the resurrection of the former comic duo, Abbott and Costello.

Business, Mr Abbott, is in the business of making money for its shareholders. It does not give a fig for the people to whom it sells its products, especially in a market where they have no choice about whether or not they will purchase the product.

Will someone please assist this person with his career development into a position where he can, as the doctors credo suggests, at least do no harm?

I wonder if it will work for things other than breast cancer?

Scans predict cancer treatments' effectiveness. 13/09/2006. ABC News Online

Cancer sufferers will soon be able to tell whether their chemotherapy course is going to rid them of the disease.

Research conducted at the Peter MacCallum Cancer Centre in East Melbourne will allow doctors to determine if patients are benefiting from a course of chemotherapy.

Some more information on Unilteral Vocal Cord Paralysis

Unilateral Vocal Cord Paralysis: When one of the vocal cords is paralyzed, the cords are not able to meet in the midline to initiate the glottic attack. This prevents development of the subglottic pressure needed to initiate speech. Also with the cords at such a distance, the mucosal wave cannot be adequately maintained. Hoarseness and breathiness are the most common complaints but vocal abnormalities may also include easy fatigability and voice or pitch change. It is important not to assume that the immobile cords are necessarily paralyzed. Arytenoid fixation can lead to an immobile cord and direct palpation of the arytenoid cartilage and/or laryngeal EMG can rule out this possibility. Potential return of function of an immobile cord can be determined if the underlying cause is known and with the aid of LEMG. This contributes significantly to the choice of surgical procedure to correct the problem. It is also important to remember that the larynx has a number of functions in the human and dysphonia may not be the primary compliant. Patients may be suffering from dysphagia, coughing, or choking episodes, or stridor.

There are a number of different causes of unilateral vocal cord paralysis. Any entity affecting the vagus nerve along its course may result in decrease in function. The most common cause is non-laryngeal cancer which includes neoplasms of the head, neck, chest, and skull base. Neuritis associated with upper respiratory infection, syphilis, or other infectious sources may cause nerve dysfunction. Neurologic conditions such as CVA, multiple sclerosis and myasthenia gravis may also effect vocal cord functioning. General medical conditions such as diabetes mellitus may cause an isolated neuropathy giving rise to vocal paralysis. Lesions of the vagal nerve occurring higher in the brain and may present with multiple cranial nerve abnormalities.

Vocal Fold Bowing: The inability of the folds to approximate at the midline decreases the ability to produce proper speech. Though it may be a normal change in the aging patient, it is also seen with muscular atrophy secondary to nerve sectioning or central neurologic conditions. With aging, changes in the lamina propria include a loss of elastic fibers, atrophy of submucous glands, increased fibrosis, and muscle atrophy. These changes result in an increased glottic gap and a number of perceptual changes. Geriatric patients may present with hoarseness, low pitch, imprecise articulation, or breathiness.

PATIENT EVALUATION AND SELECTION:

-History:

GENERAL: As always, obtaining a pertinent history is of utmost importance. One should determine the onset, duration, and severity of the dysphonia. As previously mentioned, the larynx is also crucial in protecting the lower respiratory tract and is a conduit of the upper respiratory tract. Therefore the patient may present with coughing and choking episodes, aspiration, stridor, dyspnea, dysphagia, or odynophagia (2). Intubation history and previous head and neck trauma are crucial pieces of information. It is important to know if the patient has had any previous laryngeal surgery or other head and neck surgery.

VOCAL: A specific vocal history is also important. Many patients who present with vocal complaints have a disease entity that does not warrant surgical treatment. Aside from onset, duration, variability, and past vocal problems, history should include pertinent medical questions such as presence of seasonal allergies, history of reflux disease, life stress, diabetes, and medications. Many patients who present for an initial evaluation of voice complaints are unfamiliar with questions of vocal use and hygiene. It is important for the physician to explain these concepts to the patient during the questioning to facilitate accurate responses and educate the patient. Questions should include voice demands at home and at work, recreational singing, and episodes of abuse i.e. sporting events. Smoking, water intake, caffeine intake, and environmental irritants are important questions about vocal hygiene.

-Physical:

It is important to do an entire exam with emphasis on palpation of the neck to assess for any neck mass or goiter and cranial nerve testing. An indirect laryngeal exam, as well as a flexible laryngoscopy or videostrobe should be performed. The patient should phonate a high pitched /ee/ sound. This causes elongation of the vocal folds and causes the larynx to move superiorly. These movements aid in obtaining a complete view of the larynx. In addition to assessing vocal fold position and mobility, it is crucial to rule out carcinoma of the larynx in a patient presenting with hoarseness. A direct laryngoscopy with palpation of the arytenoids to ensure joint fixation is absent should be done prior to any surgical procedure.

The manual compression test is an easy non-invasive office procedure to help evaluate a number of voice disorders. The lateral manual compression test is particularly useful in determining whether a patient with a wide glottic gap from unilateral vocal cord paralysis or vocal bowing will benefit from a medialization thyroplasty. To perform the test, the neck should be palpated to find the superior notch and the inferior margin of the thyroid ala. The vocal cords are located along a horizontal line drawn at the midpoint of these two landmarks. The patient is asked to sustain an /a/ phonation and pressure is applied to the lateral aspects of the thyroid cartilage. The concept is to approximate the vocal folds and decrease the glottic gap. A subjective improvement in voice quality is sufficient to state that the patient would benefit from a medialization thyroplasty though acoustic, aerodynamic, and videostroboscopic studies can be done to quantify improvement. The limitations to this test are older patients who have calcification of the thyroid cartilage, patients with obese necks, and patients with scarring of the vocal folds.

-Vocal Assessment:

Despite the recent outburst of technology used to measure and quantitatively assess voice, there is no substitute for the trained ear. Taking a history gives ample time for the physician to make a qualitative assessment of the patient’s voice. Qualities such glottic fry, hard glottal attacks, breathiness, diplophonia, pitch breaks, phonation breaks, and tense phonation can be assessed.

Acoustic evaluation is the quantitative measurement of various voice characteristics. Having the patient sustain a single tone, the fundamental frequency (Fo), variations in amplitude (shimmer), and variations in pitch (jitter) can be measured. Fo may be decreased in patients with vocal abuse or poor approximation of the vocal folds. Shimmer alteration is due to decreased stability of the vocal folds. Abnormal jitter correlates with the subjective quality of hoarseness.

Videostrobolaryngoscopy (VSL) should be performed whenever possible. It allows for dynamic assessment of the vocal folds. With this view, the physician is able to differentiate between functional voice problems and those caused by subtle structural abnormalities. Pulses of light allow us to watch various parts of successive cycles to obtain a complete picture of vocal cord activity. The physician is able to evaluate symmetry of movement, aperiodicity, glottic closure configuration, and horizontal excursion amongst other variables. If the cords are functioning symmetrically, they should essentially be mirror images of each other. The lateral excursion and timing of opening/closing should be identical. Aperiodicity is a measure of irregularities in vocal fold movement. If the frequency of the strobe light is equal to the fundamental frequency, no vocal fold movement should be seen. If movement is observed followed by a static period, aperiodicity is present. The glottis may also be assessed for gap, shape, and appropriate closure (11). The shape of the glottis may be characterized as complete, anterior chink, irregular, bowed, posterior chink, hourglass, or incomplete. Horizontal excursion is a measurement of the amplitude of the cords. Measurement both pre and post-operatively can provide objective data for evaluating improvement. An additional benefit is reviewing the results with the patient immediately after performing the examination. Giving the patient a visual image of the problem helps considerably in motivation for behavioral treatment and development of goals for improvement.

Electromyography (EMG), though not routinely performed, is an excellent evaluation of specific muscle functioning. By placing electrodes into laryngeal muscles (thyroarytenoid, cricothyroid), EMGs help elucidate whether there is any re-innervation of muscles which are thought to be paralyzed. It can also help to differentiate paralysis from arytenoid joint fixation. EMGs are also used to identify excessive muscle activity prior to the use of BOTOX for spasmodic dysphonia.

-Diagnostic Tests:

If indirect or stroboscopic exam demonstrates a unilateral vocal cord paralysis with no known etiology, a specific battery of tests should be considered. A CT scan from skull base to the mediastinum should be done to evaluate the entire length of the vagus and recurrent laryngeal nerves. If the patient is a child, pregnant, or suspected to have a generalized neurologic problem, an MRI is advised instead. A barium swallow may be done to evaluate swallowing mechanism and associated dysphagia. Radioactive thyroid uptake scan or ultrasound may be done to evaluate for the presence of a nodule or tumor. Chest x-ray is performed to rule out the presence of a bronchogenic carcinoma, mediastinal adenopathy/mass, or less likely, the presence of an enlarged heart compressing the recurrent laryngeal nerve, particularly on the left side. A FTA-Abs test should be done to rule out syphilis as a cause of vocal cord paralysis.

TREATMENT OPTIONS:

The most important aspect of rehabilitating voice is defining the patient's goals.

--VOICE THERAPY :

Assessment of patients by a speech pathologist allows for maximal medical treatment to be implemented before consideration is given to surgical treatment. Some patients develop hyperfunctional compensatory mechanisms which lead to the common complaints of voice strain, neck discomfort, and fatigue (16). Speech pathologists can help eliminate these habits and educate the patient on proper compensation techniques. Relaxation exercises, aerobic conditioning, voice exercises and other methods are all practiced by the patient to improve voice quality. Once vocal therapy has been maximized and further voice improvement is desired, surgical options may be considered. Utilizing voice therapy in treatment of unilateral vocal cord paralysis is crucial to ensuring the greatest improvement in voice.

--CORD INJECTION:

Teflon

• Indications:
  Teflon injections are most commonly used for unilateral vocal fold paralysis with no hope for return of function in terminal patients. To ensure that function will not return, a waiting period of one year is usually observed prior to performing the procedure.
  
  
• Contraindications:
  Experience has shown that Teflon injections are particularly poor when the voice complaint is secondary to vocal cord atrophy, or vocal fold bowing.
  
  
• Procedure:
  There are a number of different approaches to injecting the vocal folds. When performing the percutaneous injection, no sedation is required and local anesthetic is used. Fiberoptic laryngoscopy is used concurrently to assure proper placement and adequacy of the injection. The lateral percutaneous approach requires the surgeon to pierce the thyroid cartilage at the level of the vocal fold. An anterior approach may be used by placing the needle through the cricothyroid membrane and angling the needle superiolaterally under direct visualization. The Teflon should be placed lateral to the vocalis muscle with great care not to disturb the endolaryngeal mucosa. The first injection should be placed anterolateral to the vocal process of the arytenoid. Teflon is injected until appropriate medialization is seen with fiberoptic laryngoscopy. Another bolus of Teflon is placed anterior to the junction of the middle and anterior one third of the cord. A transoral injection may be done under local anesthesia using indirect mirror laryngoscopy. It is extremely important to bevel the needle away from the mucosal edge to avoid an intramucosal injection. If the procedure cannot be adequately performed under local anesthesia, it may be done during a direct laryngoscopy under general anesthesia with jet ventilation. It is important not to place excessive pressure on the anterior commissure to avoid distorting the vocal cords. The needle is placed lateral to the vocal fold, 2mm deep, at the level of the vocal process. The patient is asked to phonate and further injections depend upon voice quality. It is important to asses voice quality during the procedure. If too much Teflon is injected, the results may be disastrous. If overinjection does occur, it is imperative to incise the mucosa over the site of injection and suction out the excess.
  
  
• Advantages:
  The procedure is inexpensive and produces immediate results. It can also be done under local anesthesia and usually results in satisfactory voice. It is important to note that these advantages, once exclusive to Teflon injection, can be provided by other surgical procedures.
  
  
• Limitations:
  The irreversibility of the procedure is a major concern. Teflon may only be placed in a vocal cord which has no potential for return of function. As stated above, this requires one year of waiting after initial presentation to ensure complete paralysis. The only exceptions to this is the terminally ill patient with aphonia or aspiration. If vocal fold function does return after placement of Teflon, voice quality will be poor with increased likelihood of displacement, extrusion, and granuloma formation. Teflon injection into a mobile cord will cause hardening of the cord and disruption of the normal mucosal wave. Attempts to remove a Teflon implant usually result in destruction of the vocal fold. The inability to use Teflon in cases with absent soft tissue is another criticism. This automatically eliminates its use in patients with atrophy and bowing of the vocal folds, status post cordectomy, and status post blunt laryngeal trauma (9). The injection of Teflon is not sufficient to medialize the cord and enhance vocal function. Patients suffering from a central neurologic problem also receive no benefit from Teflon injection. Central lesions typically disrupt superior laryngeal and pharyngeal function and therefore a procedure which narrows the glottic gap may not be sufficient to prevent aspiration. Migration of the implant and extrusion through the vocal membrane are other possible complications. Granuloma formation is the most feared complication. It can result in poor voice quality and eventually airway compromise. Because of this, Teflon is now limited by most.

Gelfoam:

Gelfoam injection is a temporary measure for treatment of unilateral vocal cord immobility. The main indications for the use of Gelfoam are temporary paralysis with glottic incompetence, augmentation to a re-innervation procedure, contraindication to an open procedure, and as a test run before injecting a non-absorbable material.

The method involves mixing Gelfoam powder with saline immediately prior to vocal fold injection. Approximately 1g of powder can be mixed with 4cc of saline. The consistency is very important; the less viscous the solution, the quicker it will be reabsorbed. It is injected in the same manner as Teflon.

In a trial with Gelfoam, it was effective in decreasing aspiration and returning the ability to cough in all patients. Voice was improved in all patients and most patients were able to improve without the aid of speech therapy. The amount of Gelfoam present in the cord is constant for approximately one month and is fully absorbed in 8 to 10 weeks. The slow resorption allows for a gradual compensation in speech and swallowing. There is a mild mucosal edema and erythema that occurs in some patients and rare reported cases of airway compromise.

Collagen

Collagen injections are derived from bovine collagen which is modified to minimize host immune response. Collagen implants are assimilated into the surrounding tissues by an invasion of fibroblasts and deposition of new host collagen. Histologically, the collagen is similar to the deep layer of the lamina propria. Therefore, the collagen is placed within this layer of the vocal fold. Though there is some resorption of the collagen, this is offset by the deposition of host collagen thereby providing long term voice improvement. Resorption of the cartilage may be precipitated by an upper respiratory infection. There have been reports of hypersensitivity reactions with rare cases of airway compromise. Some authors still advocate the use of dermal skin tests to test for possible allergic reaction to the injections. In a series by Ford and Bless, 2 of 80 patients had a positive skin test which is consistent with the reported incidence of 3%. Recently, an increased used of Zyplast collagen ,a GAX collagen, has decreased the incidence of allergic reactions.

Autologous Fat

In 1987, Brandenburg et al. reported the first use of autologous fat injection for glottic insufficiency. Since then, fat injection for a variety of etiologies has become very popular.

• Indications: Fat injections have been used successfully in patients with vocal cord paralysis, vocal fold scarring, vocal fold atrophy, and intubation defect.
• Contraindications: There are no definitive contraindications to fat injection
• Technique: (as described by Hsiung et al. (12)). Under general anesthesia, fat is harvested from the lower abdominal pannus. The fat is cut into 1mm pieces separating it from connective tissue. The fat is then rinsed with lactated ringers followed by a methylprednisolone solution. It is then loaded into a syringe. The actual location of fat placement is dictated by the underlying pathology. For those patients with vocal cord atrophy and paralysis, the anterio- and posteriolateral areas of the middle third of the cord are injected. Injection is continued until a 50% overcorrection and convex bowing of the affected cord is seen.
• Outcome: Since its first use in 1987, fat injections have gained popularity. Autologous fat is well tolerated in the vocal cord and repeated injections can be done if necessary. Unlike Teflon where overinjection can be disastrous, placing too much fat in the vocal fold does not cause significant post-operative complications. Overinjection is recommended because a certain percentage of fat will atrophy over time. Postoperative analysis reveals an improvement in glottic closure and mucosal wave production. Though there is an improvement in the breathy quality in those patients with glottic insufficiency, vocal roughness persisted after the procedure. Anterior defects corrected with fat injection have a better postoperative outcome than posterior defects.

Hsiung et al. (12) divided failure into two categories, early and late. With early failure, it was believed that it was due to 1) a large glottal gap or 2) a posterior defect not corrected with fat injection. Late failure was attributed to absorption of the fat supported by an initial improvement in voice quality.

There are still a few concerns and questions about fat injection. Knowing that there will be some reabsorption of the fat, the cord needs to be overinjected. This leads to the question of exactly how much fat results in an optimal change in voice. It is also not known whether improved vocal function is due to the amount of fat injected or softening of the vocal cords. Another uncertainty is the rate of fat absorption by the vocal tissue. If initially effective, the benefits of fat injection may last anywhere from three months to several years. Some studies have shown that despite absorption of the fat, lipocytes and fibrous connective tissue retain the contour of the vocal cord and provide long term benefit. The exact method of harvesting and preparation of the fat and its relation to absorption is still unknown. Effort should be made to minimize that amount of trauma to the fat during extraction.

--TYPE I THRYOPLASTY

• Indications:
  A Type I thyroplasty was repopularized by Isshiki in 1974. The indications for a Type I thyroplasty are unilateral or bilateral vocal fold paralysis or paresis, vocal fold bowing, and incomplete glottic closure with aspirations.
• Contraindications:
  There are two contraindications for performing a Type I thyroplasty. The first is in patients with a previous hemilaryngectomy. Without the support of the thyroid cartilage, the silastic implant is ineffective in medializing the scarred side. Vocal fold injection is indicated in this case. The second contraindication is previous laryngeal irradiation due to extensive scarring.
• Technique:
  There are many variations in this procedure championed by several authors. Described below, is the technique performed by Netterville et al (6). A horizontal incision is made over the midportion of the thyroid cartilage and the cartilage exposed. A window is created in the thyroid ala approximately 8mm posterior to the anterior commissure and 3mm superior to the inferior border of the cartilage. This provides a sufficient strut inferiorly to support the implant. After the window is made, the cartilage is removed. Incisions are made in at the inferior, posterior and superior aspects of the inner perichondrium thereby creating a flap. The perichondrium is elevated from the medial aspect of the thyroid ala. While viewing the cords via fiberoptic laryngoscopy, a depth gauge is used to medialize the cords in the anterior, middle, and posterior aspects of the window and the measurements are recorded. These measurements are also taken at the superior and inferior aspects of the window to find the relation between the true and false vocal cords. Using measurements from the various areas of the windows, an implant can be fashioned from a silastic block. The point of maximal medialization is at the level of the vocal process. Very minimal medialization is designed at the anterior commissure to prevent a strained voice. The inferior aspect of the implant is placed in the window and rotated into place. The patient is asked to phonate and voice is assessed. If medialization is not optimal, the implant can be removed and modified. The time of intralaryngeal elevation and implant placement should be minimized to prevent vocal interference by intraoperative edema.

-Variations/Controversies:

Removal of the cartilage window: Some authors feel that the cartilage, if left in place can migrate superiorly and medialize the false vocal cord or ventricle. If the cartilage migrates inferiorly, it may cause overmedialization of the cord resulting in a persistently strained voice quality.

Inner perichondrium: Some authors prefer to leave the inner perichondrium intact stating that it decreases the incidence of graft extrusion. Netterville states that the reason for increased implant extrusion is injury to the ventricle. This occurs more frequently if a paramedian incision is used near the anterior commissure where the ventricle is located very close to the inner perichondrium. He argues that incising the inner perichondrium does not increase implant extrusion secondary to the development of a fibrous capsule around the implant.

Implant material: Though some authors feel that a carved implant allows for precise results, Montgomery et al. (10) reports certain benefits to a pre-made implant. The inner aspect, which medializes the cord, is made of a softer plastic closer to the consistency of the surrounding tissue. The outer half is made of a harder plastic which locks into the thyroid cartilage. This prevents displacement of the cords and eases revision. Hydroxylapatite is a pre-made implant which has minimal tissue reactivity and good biocompatibility with the surrounding tissue. Gore-tex (ePTFE) is another material reported to be of benefit in medializing a paralyzed vocal cord. This material has excellent biocompatibility and can be used to medialize the cord in an incremental fashion. This technique does not require extreme precision in creating the thyroid window or shaping the implant.

• Benefits:
  Type I thyroplasty has had excellent results in voice improvement. The procedure helps to re-establish the mucosal wave in the paralyzed vocal fold. By approximating the vocal membranes, normal anatomic position is re-established and the cords are able to produce sound. The return of an intact mucosal wave is a large reason that this procedure is so effective in improving voice. This improvement is illustrated by an increased Fo and maximum phonation time. Other objective variables such as glottic closure and cord symmetry are also improved. The improvement in aspiration symptoms is even more consistent than the improvement in voice quality. Additional benefits include the ability to monitor vocal improvement during the procedure if performed under local anesthesia. Using a nasopharyngoscope, the surgeon can ensure the implant is at the level of the true vocal cords and not medializing the false cords or the ventricle. It is both adjustable and potentially reversible. The reversibility of the procedure allows its use in a patient with potential return of vocal cord function. The implant can also be revised if the vocal cord continues to atrophy over time. When performing a Type I thyroplasty, it is important to council the patient on the expected voice changes post-operatively. Though initially strong in the operating room, perioperative edema will cause the patient to be hoarse for the first ten days after the procedure. Some have noted an additional period of voice difficulty occurs 4 to 6 weeks after surgery. This eventually improves and the patient’s voice may continue to improve for the next year.
  Primary medialization thyroplasty occurs at the time of extirpative surgery with known sacrifice of the recurrent laryngeal nerve in the neck. This procedure is done under general anesthesia and therefore negates the benefit of intraoperative voice evaluation. It is performed primarily in hope to eliminate the need for a tracheotomy and decrease the postoperative rehabilitation time (swallowing and speech) of patients with loss of multiple cranial nerves.
  
  
• Complications of a Type I thyroplasty include persistent dysphonia, airway obstruction, implant migration, extrusion, hematoma, and infection. Poor voice quality post-operatively may be due to inadequate medialization or over-medialization of the cords. Appropriate voice assessment can only take place 4 to 6 weeks after the operation when all edema has resolved. Despite various techniques to prevent migration, occasionally the implant may move superiorly and medialize the false cord and ventricle. This calls for removal of the implant and replacement with a larger prosthesis. Extrusion into the airway is a serious complication. Though it does not occur frequently, suspicion should warrant a fiberoptic laryngoscopy and subsequent endoscopic extraction if found. Extrusion laterally can be avoided by securing the prosthesis firmly in the thyroid cartilage. In general, complications can be reduced by careful handling of the tissues, limited operative time, and meticulous hemostasis. (2).
  
  Type I thyroplasty may not be sufficient to close a large posterior gap. It may difficult to know pre-operatively whether posterior approximation will be needed. One method proposed by Omori et al.(5) is to obtain videostroboscopic measurements prior to surgery. They assessed the posterior glottic gap as a percentage of the membranous vocal fold length. They found that is the posterior glottic gap was larger than 10% of the membranous vocal fold length, the post-operative outcome was worse and a posterior closure procedure may be warranted. If it is determined that the posterior gap is too large either pre or intra-operatively, the surgeon has the option of either creating an implant with a large posterior component or performing an arytenoid adduction (discussed later). Implants that were originally fashioned to medialize the posterior cord did so by pressing on the vocal process of the arytenoid cartilage. It has since been shown that it is more effective to fashion the implant to apply pressure to the muscular process of the arytenoid. Simply stated, the implant should have a large posterior flange, approximately 5mm in thickness to fit between the muscular process and the thyroid ala. The major advantage of this procedure is, unlike arytenoid adduction, that it does not hinder mobility of the vocal folds.

--ARYTENOID ADDUCTION:

There are two major indications for an arytenoid adduction. The first reason is to close a posterior glottic gap. Given that the cricoid overlaps the thyroid posteriorly, a posterior window is not effective in medializing the posterior vocal cord. The traditional Type I thyroplasty has been shown to be ineffective in medializing the posterior cord. A simple way to assess if an arytenoid adduction is necessary is to see if the vocal processes of the arytenoid cartilages touch in the midline when the patient phonates. The second reason is if the vocal folds are not at the same caudal-rostral level. The vocal process of the arytenoid cartilage moves inferior with adduction and superior with abduction. This is due to the cylindrical shape of the cricoarytenoid joint. Some surgeons advocate an intra-operative assessment of the vocal cord medialization. If after the silastic implant has been placed, there is a persistent posterior gap, an arytenoid adduction is performed.

The procedure is described as it is performed by Isshiki. Using a horizontal neck incision at the level of the vocal cords, the posterior border of the thyroid cartilage is exposed by transecting the strap muscles and detaching the inferior constrictor from the thyroid. It is important to identify the recurrent laryngeal nerve in this area to avoid any damage. The cricothyroid joint is then opened to allow access to the muscular process of the arytenoid cartilage. The piriform sinus mucosa is then elevated with great care to violating the piriform recess. Cricoarytenoid joint is then opened allow exposure of the muscular process. The posterior cricoarytenoid muscle is identified and ligated from the muscular process. Two 3-0 nylon sutures are placed around the muscular process and the surrounding soft tissue. The sutures are then pulled anteriorly through the thyroid ala. The patient is asked to phonate and the appropriate force is determined to provide optimum voice results.

The only significant variation is whether or not to open the thyroarytenoid joint. Some authors believe that opening the joint results in prolapse of the arytenoid cartilage into the laryngeal lumen with overadduction of the posterior commissure.

Arytenoid adduction can be used in conjunction with medialization thyroplasty and re-innervation surgery. Currently, no other procedure corrects for a discrepancy in vocal cord level and few other procedures effectively address a wide posterior chink.

--REINNERVATION SURGERY WITH ANSA CERVICALIS:

• Indications:
  In the past few decades, there has been a surge of interest in reinnervation surgery as a therapy for unilateral vocal cord paralysis. Given that the arytenoid cartilage is mobile and the ansa cervicalis has not been disrupted, reinnervation with a nerve-muscle pedicle or recurrent laryngeal nerve – ansa cervicalis anastomosis should be considered.
• Contraindications:
  If there is any fixation of the arytenoid cartilages, a nerve anastomosis should not be used. This procedure cannot be performed on a patient who has had disruption of the ansa cervicalis, either by surgery, trauma, or neurological process.
  
  
• Neuromuscular pedicle reinnervation: An incision is made in the lower half of the thyroid ala extending to the sternocleidomastoid muscle. The ansa cervicalis is identified overlying the jugular vein and is traced to its insertion to the anterior belly of the omohyoid muscle. Two stay sutures are placed 2-3mm proximal and distal from the insertion site. A window is made is similar to that used for a Type I thyroplasty. The inner perichondrium is opened and the thyroarytenoid is incised superficially. Using the stay sutures, the muscle pedicle is sown in place. It is crucial to avoid excessive tension on the pedicle.
• Ansa Cervicalis – Recurrent Laryngeal Anastomosis:The ansa cervicalis is exposed overlying the great vessels or within the carotid sheath. The ansa is traced to either the omohyoid or sternothyroid. The nerve is sectioned at its insertion to the muscle and transposed to the tracheoesophageal groove. The recurrent laryngeal nerve is identified by retracting the superior thyroid neurovascular bundle and followed to its insertion into the larynx. The nerve is ligated 7 –10mm from its insertion in the larynx to ensure a tension free anastomosis. The nerves are anastomosed with a neurorrhaphy (epineural repair) with 10-0 suture under magnification.
• Outcomes: Re-innervation surgery has recently gained popularity in those patients with unilateral vocal cord paralysis. Though cord injections, medialization thyroplasties, and arytenoid adduction are sufficient to medialize the cord and close the glottic gap, none of these procedures address vocal fold tone, another important component of speech production. Reinnervation surgery provides tone to the thyroarytenoid muscle and gives tension to the vocal fold. Another reason cited to perform reinnervation is to prevent vocal fold atrophy. If a medialization procedure is performed, it may need to be revised 2 to 3 years later because cord atrophy has resulted in an increased glottic gap. Laryngeal reinnervation maintains the bulk of the paralyzed fold. Currently it is not known as to the optimal time to perform reinnervation surgery and which patients it will benefit. It has been proposed that intraoperative EMG can distinguish those patients with no spontaneous reinnervation from those with inappropriate reinnervation (synkinesis). Those patients with no spontaneous reinnervation would be more likely to benefit from operative reinnervation.

A universal criticism of reinnervation is the 4 to 6 month period required for the procedure to be effective. Many authors advocate the concurrent use of a medialization procedure, either Gelfoam injection or thyroplasty. Tucker has described removing the posterior inferior aspect of the implant in order to allow room for the muscle-pedicle implant to be placed.

When comparing the two methods of reinnervation, it is currently unclear which procedure produces the best results. Preliminary work by Hall et al. indicates that the muscle pedicle allows for more rapid innervation and stronger contractile force. Current research is directed toward understanding the role of cell adhesion markers in the role of nerve regrowth. This research will likely have a significant impact on the methods of reinnervation surgery.

Recently a modification has been proposed to the recurrent laryngeal nerve – ansa recurrent laryngeal anastomosis procedure. Paniello (16) has proposed a recurrent laryngeal – hypoglossal nerve anastomosis. The theoretical advantage is that these are the only two nerves involved in swallowing and phonation. Other advantages are an abundance of axons in the hypoglossal nerve, use in patients in which ansa is unavailable, and low donor site morbidity. Initial work with the procedure suggests that it results in a stronger reinnervation and sphincter-like action on swallowing. Though there is denervation of the ipsilateral tongue, no increase in aspiration has been shown.

Some more news

The search for information about this substance called VOXTM is not over by a long shot.

Thanks to a range of really lovely people including my speech pathologist and people on a number of discussion boards I have managed to obtain some additional information and of course this is leading to a lot more questions.

In a document entitled ""Horizon Scanning Report Injectable Silicone Biomaterial Implants" December 2005 from the Department of Health and Ageing there are the following comments:

"Treatment with silicone-based products for this series of indications is at various stages of development in Australia. Uroplasty Ltd. (http://www.uroplasty.com) currently produces a range of silicone products specifically for the treatment of these indications, including Macroplastique®, Bioplastique® (or PTP®), PTQ® and VOX™ implants.

Each of these products consists of textured polydimethylsiloxane (PDMS) particles suspended in a bioexcretable carrier hydrogel of polyvinylpyrrolidone (PVP) (Malouf et al. 2001). Both Bioplastique® and Macroplastique® are listed in Australia by the Therapeutic Goods Administration (http://www.tga.gov.au/)" . . .

"In Australia, Macroplastique® and Bioplastique® implants (including PTQ® and VOX™) are both listed by the Therapeutic Goods Administration (TGA) as `tissue reconstructive materials' under the Australian Register of Therapeutic Goods (ARTG) numbers 53283 and 69960, respectively (TGA 2005)."

and

"Endoscopic vocal fold augmentation was first advanced in 1911 by otolaryngologist Brünings, who attempted to treat vocal fold paralysis with paraffin oil injections (Sittel et al. 2000).

The use of PDMS injections in laryngology was first documented in the literature in 1993. Long-term results on the use of Bioplastique® in vocal fold augmentation were not reported until recently, following the publication of two case series in Germany and the U.K. (Sittel et al. 2000; Alves et al. 2002).

No Australian studies have been published as yet. Bioplastique® injections appear to be at an experimental stage overseas, and may remain so while the optimum materials for vocal fold augmentation are still in question.

There is some thought among the medical community that the vibratory qualities of silicone implants may make it a more useful substance than hard plastics (such as those used in medialisation thyroplasty), although there is no clinical evidence to support this (G Rees, personal communication, 2005).

While the procedure has potential for wide diffusion in Australia (given its minimally invasive nature and its rapid recovery outcomes compared to conservative treatment)

[Note: my emphasis]

PDMS is not presently considered an ideal material in the treatment of UVFP, due to both the small risk of granuloma formation and implant migration, and the general lack of high quality evidence of its safety and effectiveness in treating this indication (Rees, personal communication, 2005)."

With this information to hand the questions that now need to be asked are:

1. what if any processes are in place in the ACT to assess the extent of the problem;
2. what if any processes or tests exist to determine the most appropriate treatment options; and
3. what if processes exist to provide a potential consumer (like me in this instance) with sufficient information to enable some really informed consent in selecting a treatment modality?

Frankly, I am at the stage of my life where I REALLY REALLY want to listen to a couple of experts who tell me what is good for me but being the horrible sceptic that I am I would also like to have some insight into how they arrive at their conclusions and recommendations especially when the 'official' advice is at it is above.

The advice seems to indicate that us of this substance is still relatively experimental and while it has been really successful on terminally ill patients - none of them have been around long enough to assess a longer term impact.

In my case I obviously do NOT want to be experimented on, but on the other hand what are my real prospects for surviving this illness?

If I only have a relatively brief time left - who cares? If on the other hand I have the possibility of hanging around for a few more years, then do I really want to take the risk of an experimental process that I may regret in a few years time, especially as there are at least four or five other options for treatment out there some of which are NOT experimental and which are actually reversible?

More inquiries are under way with both the company that sells this stuff in Australia and of course with my contacts elsewhere.

Keep watching this space - more news as I have it.

Update 6th September

Well part of the news is "IN" the surgeon who performed the operation on my throat has been contacted and he advises that my vocal chords will never recover on their own and that I would be well advised to have the day surgery and get the stuff injected into me so that I can be more comfortable and can get my voice back.

Meanwhile the speech pathologist has rung and advised that she will be asking her colleagues around the world for some more information about this VOX product and get back to me.

I have also left word for the oncologist to get back to me with her views about her views on the subject.

I have tried the new nasal spray and I have to say that at first glance it is not designed to be effective for people with a heart condition.

Bloody HECK! It costs A$52.50 for a tiny bottle of this stuff. With any luck SOME of the cost may be recoverable from my health insurer!

As usual it comes with all the warnings including my favourite, namely that it may not work fully for a while - the speech pathologist has suggested ten days!

Meanwhile of course there is a small matter to contend with, namely breathing!

It is beginning to look like I will have to book in for yet another round of treatment but all the votes are not yet in so stick around for the next exciting episode of this saga!

A brief update 6 Sept 2006

Pete's Points

As they used to say in the work place - "I have some good news and some bad news which do you want to hear first?"

The good news is that I went to an ENT specialist who had another look down my throat via the nose and after looking suggested that there was a treatment for my condition namely an implant of a thinggy called VOXtm a sort of plastic bulking agent that in a 20 minute day surgery can be inected into the vocal chord to 'bulk it up' and so that the other vocal chord which DOES move in and out is able to get within a sufficient distance to enable the voice box to make sounds again.

I don't know about any of you out there but the temptation to go in for 20 minutes of surgery, and walk out with my voice restored to full functioning is a really tempting suggestion. The question is what are the down sides.

Apparently when one breathes the vocal chords separate to enable air flow. If the chord is bulked up and cannot move then of course it impedes breathing. Apparently this would only be a problem if I engaged in really heavy exercise (not one of my favourite sports of course) but something to consider.

Implants in the past have not had a great reputation for being free of any negative downsides (just look at women's breast implants for example) er ... I mean look at how many disasters there have been with silicon implants!

Apparently Teflon and your own body fat have also been used in the past to enable this process and there appear to be some down sides to both of those.

I can find very little on the net about the clinical trials of this VOX stuff and so find myself in a slight quandry about whether to proceed or not. Obviously I will ask more questions and get some answers before I do anything drastic.

Meanwhile I am still voiceless.

Oh yes, that brief return to voice the other day - well it appears that by my hacking cough resulting from trying to clear some reflux debris I managed to inflame the vocal chord which is the equivalent of bulking it up and so got my voice back instantly. However as the inflammation
decreased I lost the voice again just as quickly.

Which means of course that the process of implanting this stuff is likely to work and work well.

The question is at what cost.

If the thing is likely to fail in a few years - should I care?

After all the prognosis of my cancer is not all that hot and I may as well enjoy the good times while I can have them.

On the other hand what if I am one of the lucky ones who does NOT die within the five years out from surgery and treatment - then what?

Life is a crap shoot anyway I guess, but somehow I still have this silly little voice that wants to know just a little more before rushing in.

In the meantime I will keep my anxiety levels high while you all enjoy life doing whatever you are doing!

HCCA Health Care Consumers Association

Garpets Goodies

Recently, having finished my treatment at TCH (otherwise known as The Canberra Hospital) I somehow managed to find some literature about an organisation called the HCCA.Being a health care consumer I have to say that I found the idea that there was an organisation which would actually represent people like me most interesting. In my inimitable fashion I made some 'discreet local inquiries' and found out that this organisation has its offices in Pearce and that some of the people who I have 'met' or at least communicated with during the period that I have been ill were not only members, but important members.

As there was a committee that was looking at management information pertaining to the LINAC (linear accellerators) and in need of a consumer representative I thought I would make further inquiries to see whether what I had to offer might meet some of the needs.

As you would expect from any community organisation I was immediately told that there was a process by means of which I could apply and that this would be considered in due course by the relevant committees that undertook such work. I was also advised that there was a series of training days that I would be required to attend and presumably pass in order to be even considered suitable for being a consumer representative.

I was impressed.

I undertook to apply for membership, pay my membership fees and lodge an application to become a member of this committee looking at LINAC related matters.

So far I have had the pleasure of meeting with three of the main movers and shakers in this organistion and some of the staff who have been more than cordial and welcoming.

In return for their generosity in putting up with someone who still is unable to talk I have also joined their discussion group on Yahoo and tried as hard as I could to be of some assistance with their web site and with looking at their computer related services.

I hope to be able to be even more useful over time. Meanwhile I have placed a number of issues on to the discussion group and have taken the liberty of posting a few files on to the site so that Oesophageal Cancer actually is given a heads up opportunity among all of the more well known cancers in the community.

Among other things I have suggested that perhaps a support group for people suffering from this form of cancer could be useful and have urged people who are members of the list to let me know if there was any interest in starting such a group.

It's early days so I am not too disappointed by the fact that so far I have not had a response to this matter.

I have however had some very positive responses to some suggestions I have made about paid parking at the hospital.

If there are others out there who are readers of my blog that want to know more about the HCCA either because they themselves are comsumers of health services in the ACT or are carers for someone who is a consumer, then I would be happy to assist them to make a call to the HCCA and consider becming a member. It seems to me that the more people in the ACT who join an organisation like this the more powerful its voice can become in providing feedback from a consumer perspective to the ACT government and to the management of the various health providers in this community.

If you want to know more just drop me a line or better yet look up:
http://www.hcca.org.au/

29th August

Pete's Points It's all very well to attend a speech therapist or pathologist as they are known over here but unless there is a very clear idea of exactly what is going on in the throat it is very difficult to prescribe treatment.

At my meeting with my therapist today we agreed that the best thing to do would be to have an ENT specialist look at what is going on in my throat and then on the basis of the information obtained look at options, risks and benefits.

There is a guess that has been made about why I suddenly managed to recover my voice for day and a half and this seems to involve some inflammation of tissues next to the immobile vocal chord that maneuvered it into a different position so that the vocal chord that was able to move was closer to it and so able to create normal sounds. As the inflammation ceased so the chords once again moved apart and voila no more clear speech again.

One of the possibilities that has been discussed with me might involve the injection of material next to the immobile chord such that it moves back into the parallel position again. While this would in all likelihood restore the voice it would have a major downside which is that when I was exerting myself with heavy exercise for example I would in all likelihood not be able to obtain sufficient oxygen and so would struggle for breath.

An interesting conundrum - so I want to breathe or would I prefer to talk. For someone who in the past has been accused of being able to talk underwater this is a whole new ball game.

There is no point in jumping the gun so let's just wait and see what the ENT specialist has to say on the subject. I have managed to get an appointment on September 5th which is really excellent going considering how full the schedules of these specialists are. So I expect that there will be an initial consultation followed by some more exhaustive examination and then consideration of options that arise from that.

I will of course keep people in touch with what is happening.

In the interim I have finally picked up a copy of my blood test and it seems that I am able to enter into the company of people again (albeit quietly) so for those who have wanted to have a coffee or "do lunch" now is the time to let me know when you are available and I will look at my extremely busy social calendar ;-) and make a time to meet.

Give me a call or alternately drop me an email.

While all of this is going on I can of course refer people to the HCCA web site and to the HCCA group on Yahoo where there is some activity about Cancer related issues happening. Not least of these concerns the pay parking at the various hospitals around here and of course another call to form a support group for people with Oesophageal Cancer and their carers.

Improved Prognosis of Resected Esophageal Cancer.

From Pub Med

Stein HJ, Siewert JR.
Chirurgische Klinik und Poliklinik, Klinikum Rechts der Isar, Technische Universitat,
Ismaningerstrasse 22, D-81675, Munchen, Germany.

Because of the perceived high risk of esophagectomy and the assumed poor long-term
results, the role of surgical resection as the mainstay of treatment for localized esophageal
cancer is currently being challenged. Early tumors are increasingly approached by
endoscopic mucosectomy or mucosal ablation techniques, whereas combined
radiochemotherapy without surgery has become the treatment of choice for locally advanced
tumors at many institutions. Several recent reports and our experience, however, indicate
that surgical resection of esophageal cancer has become a safe procedure and long-term
survival rates after surgical resection have improved markedly during the past two decades.
A number of factors have been associated with the marked reduction in postoperative
mortality and improved long-term survival after surgical resection. They include changes in
the epidemiology with an increased rate of adenocarcinoma mostly located distally, patient
selection for surgery, improvements in surgical technique and perioperative management,
and the use of neoadjuvant treatment protocols. The treatment strategy and extent of the
surgical procedure can now be tailored based on histologic tumor type, tumor location,
tumor stage, and the general condition of the patient. With an individualized approach,
surgical resection of esophageal cancer can predictably offer cure. Surgical resection thus
remains the major pillar in the successful treatment of esophageal cancer.

Do Canberrans need education and support?

Pete's Points

Oesophageal Cancer - Do Canberrans need education and support?

Twenty years ago almost all oesophageal cancers were "squamous cell carcinomas" arising in the upper third of oesophagus or gullet. The risk of squamous cell carcinoma is almost entirely explained by tobacco and alcohol consumption.

In the late 1980s it became apparent that many developed countries were experiencing an increase in "adenocarcinoma" of the oesophagus. These cancers arise in the lower third of the oesophagus, that is, near the stomach, and are not related to smoking or alcohol. Instead, they are related to obesity and gastro-oesophageal reflux (acids coming up the gullet).

Adenocarcinoma of the oesophagus is not a common cancer, but its sharp rate of increase, related to the increasing levels of obesity in our community may mean that this cancer becomes an ever more important and prevalent one in the next few years.

Oesophageal cancer is renowned for poor survival. Less than 20% of patients are alive five years after diagnosis.

In Canberra, we are fortunate to have some gastroenterologists, surgeons and oncologists who are very familiar with this disease and are expert in its treatment.

What we do not have, is a support group for the patients and for their carers.

Should there be one to help spread the message about this disease and its impacts and provide support for those people who are afflicted?

The sharp increase suggests that we should. Because of the small numbers of people afflicted, this group should then join up with support groups in Victoria and NSW and share information for the mutual benefit of all.