Hi-
My Mom is 10 months out from chemoradiation tx and her swallowing has progressively deteriorated. She has been using her Peg tube since last July when she started her tx. She was doing better with her swallowing in Sept (1 month out than she is now). Her 1st swallow test in Oct. looked good. Her 2nd swallow test was done after things seemed to prgressively worsen with her ability to swallow. (in April)They also did an esophogeal ct. This did show scar tissue. The swallow test showed that she was aspiriating on everything that she swallowed. They were surprised that her cough reflex was not working either when she was aspirating. At that point she was directed to take nothing by mouth not even water. At that time they referred her to a speech therapist. The speech therapist has seen her 1x a week and has her doing all sorts of exercises. Nothing has really improved. At her last visit this week they advised her to even spit out her saliva and not to try and swallow it. The speech patholigist brought in her supervisor who feels my Mom's problem is her cricopharyngeus. She said that there is a surgical procedure called a cricomyotomy to help with this problem. Has anyone heard of it? I have searched this site for info on it and can not find anything at all. Her ENT does not seem to be very versed on any of this either. Is there some type of a specialist who would have more experience in dealing with post treatment swallowing problems (especially knowledgeable on the cricopharyngeus or a cricomyotomy)

My Mom is a very patient person and is trying her best with all of these exercises. But I can tell that she is starting to get very frustrated. It just seems like there should be someone with experience who should be able to help her with this problem other than these speech therapists.
Any feed back would be appreciated.
Tami

Look into Vitalstim therapy. www.vitalstim.com
My husband had similar swallowing difficulties after his treatment ended 4/05 and is making real progress using this treatment. He has reduced his pegtube consumption by 50% and is gaining weight!!!! He started this therapy in late March, and for the first time we have hope for some normalcy. We are realistic, if he doesn't progress any further we will be greatful for what we have.

Tami

OCF is curently in the middle of producing a multi-page section on this topic. As with all things on the site, it comes down to getting qualaified doctors and support people to create the content, and then the obtaining the money to build a new section of the site. We hope to have this very large new addition to the OCF site up in the middle of July. It is cetainly a topic of great importance and one that has many facets to it, all needing to be explored in this new OCF web site material.

Without being completely familiar with the Vitalstim device, but having looked at their web site, I can't comment or recommend the product, but will have the device in front of our doctors for their opinions this comming week. The FDA clearance that they have is a 510k, and as Gary and I have mentioned in other posts, this is the easiest of the approvals to get, only requiring that it shows that it is equivalent to something that already exists in the market. They have on their web site stated something that is not true, and that is that "The FDA has concluded that VitalStim Therapy is safe and effective." The FDA does not make statements like this in a 510k, it is only a premarket approval and no such statements are made by the agency. That does not mean that it does not work, just that they have over stepped the FDA protocols for labeling and statements.

Certainly the testimonial above is worth considering if someone has not made progress with conventional physical therapy for dysphagia.

Thanks for the feedback Brian and Del. I have checked out the site and sent it to my Mom. What type of doctor would recommend a procedure such as this? The ent, oncologist, speech pathologist or should she be seeing a different specialist?
Tami

There are nurses and physical therapy specialists for whom dsyphagia is their sole area of concern. Most of these people are located at cancer centers, and it will be a multi appointment and practice at home kind of thing - maybe over months. There is no quick fix for this situation, and it requires relearning special techniques that prevent aspiration and enhance moving of food to the back of the mouth, and learning to contract certain muscle groups to control what is going where. This is all conbined with head and neck positionoing to optomize what is going on. It is a slow process, but with proper practice significant progress can be made. Again, as to this device I don't have a clue if it is really useful or not, as I have only heard the one opinion expressed on the borad. They have not returned my phone calls to date.

As Brian mentioned it is actually illegal to infer that the FDA has "approved" of a medical device for any purpose (or in some way construed that it has FDA approval or endorsement). One may only claim that a device has been "cleared for market" by the agency. The FDA routinely issues warning letters for this violation and it is considered "misbranding". They are VERY strict on this. Typically they issue a form letter with the FDA "clearance to market" (or SE "substantial equivalence" letter) letter detailing the exact labeling that a company may use. If I was at Vitalstim I would have fired the regulatory person(s) who allowed this to slip through. ALL marketing literature, including printed, web sites and even verbal claims made, are subject to this regulation.

(and it is actually a "premarket notification" not "approval")

ONLY drugs are "approved" by the FDA.

Seems like they are recommending her for a surgical procedure called a cricomyotomy. According to her speech pathologist this was a very common procedure many years ago. She has been doing therapy and daily exercises for almost 12 weeks now with no improvement so it looks like they are leaning towards surgery. From what I understand operating on radiated skin is very difficult. So I would feel most comfortable with some one very versed in this area (if an operation is indeed required.) Any recommendations?
Tami

After emailing with Brian I did convince my Mom to go to MD ANderson to have an evaluation and further treatment on her post chemorad swallowing damage. Unfortunately no one in the department that she needs to see is accepted by her insurance (Aetna). They want $15,000 upfront to start any treatments. Obviously that is not going to work. Therefore another option that was presented to me is a Dysphagia Specialist in Sacrament/Univeristy of California Davis http://www.ucdmc.ucdavis.edu/otolaryngology/faculty/belafsky.htm

Her insurance does cover this doctor and I was wondering if anyone is familiar with him. She lives in Texas so this would be quite a trip for her.
Thanks
Tami