Thursday, December 2, 2010

Swallowing Difficulties

The technical term for swallowing difficulties is dysphagia. My diagnosis, based on the results of a fluoroscope test interpreted by a highly trained speech therapist is severe dysphagia. I've written about this in my blog many times as it is the bane of my existence. I am continuing my quest to not just live with this issue, but to somehow fix it. This is partly due to wanting a better life for myself (who doesn't) and partly due to a case of OCD. I have trouble adjusting to things that are broken. In my case, my throat is broken and my ability to truly adapt to it wavers from partial acceptance to "just not going to take it anymore."

I came across an article yesterday (12/1/10) that caught my attention. A Uruguayan physician who is also a oral cancer survivor designed a small very simple implant which has allowed him to drink orally (versus a feeding tube) for the first time in 2 years. The operation was performed in a 45 minute procedure by two UC Davis physicians. Here's a link to the article.

What caught my attention was the simplicity of the solution. It is not a panacea for all swallowing issues, but it could help thousands of people quickly and at a low cost. This may allow the patient in this article to live without a feeding tube. The estimated cost (based on other articles I have read) of a feeding tube per patient is $31,000 annually in medical expenses.

For myself, there are four separate issues which have lead to my diagnosis of severe dysphagia.

1) A dime sized hole in my soft palate which prohibits the ability of my swallowing function to create a proper vacuum (or suction) during the swallowing process,

2) Removal of part of my epiglottis which, if it were all there, would protect my airway during swallowing,

3) Removal of tongue and throat nerves which, when intact, help control muscles that make swallowing possible, and

4) Scaring in my upper esophagus (a result of radiation, chemo, and surgery) which have fused parts of my anatomy together that would, under normal circumstances, be working synergisticly and independently.

Here's my plan. First, I'm looking at options for patching the hole in my soft palette (issue #1 above). The Mayo Clinic is doing some leading edge work with Transoral Robotic Surgery for Oral Cancer. I plan to contact them as well as my own cancer center to explore options in this area. Second, I'll be reaching out to the physicians noted in the above article to explore the appropriateness and possibility of a device and operation similar to the one described in the article. This could address above issues #3 and #4. Issue #2, patching my epiglottis, is very unique to my particular situation. For that, I'll consult with my network of health care providers.

Although I began focusing on this set of potentially corrective actions yesterday, I view the exploration of this taking place over a six month time frame. Hey, Rome wasn't built in a day and the same can be said for what it might take to address my swallowing disorder.

Take care everyone.



Dr. Swill said...

Hey Ed,

Fellow H&N cancer patient here. I spent over 2 years on a feeding tube and I'm not sure why you found such a high cost to maintain the tube unless you were including the nutritional supplies.

I've also experienced a rather bizarre problem with dysphasia almost 3 years after surgery and radiation. I've always had minor swallowing issues, but last month my throat locked up and I couldn't swallow at all. Out of no where and then I began to regurgitate foam from my stomach. My blood pressure shot up and I had a taste of iron in my mouth. I could not swallow for 4 mins or so and then it all when away. Doctors didn't seem too worried but it freaked me out!

I added your blog to my Head and Neck cancer blog roll on my site I hop you don't mind.

I hope you had a great Christmas and a very Happy and Healthy New Year!

Peace B

HN Cancer said...


I picked the annual cost of a PEG off of the following article (page 6 near the top)...

I'm sorry t hear about your rather bizarre experience. Every day is a new adventure for us.

Happy Holidays,