Folks I've been heartbroken and sick since Don's swallow therapist told me on the phone last Wednesday that she didn't expect that he would EVER eat a steak again! (Unless it was blended with gravy) And she said it as if she thought we realized that! He had radical right side and partial 2/3 tongue base glossectomy April 12,2004 Talk about a kick in the stomach. Don in no way has that impression and I didn't either when I compare his story with many of yours. Now here I am again being the bearer of bad news. I asked that she call him the next day and she missed him. Friday she didn't try. Since then I've been desperatly trying to find SOMETHING out there with more hope before I break this to him. You know, something to go on. Something to say he wont have to choke after every bite. Well this is what I stumbled on. I'm so excited right now I can't see straight. I did a search for "success swallow therapy" and came across this FDA approved treatment. It's relativly new, electric stimulation of the muscles of the throat that re-train them and it's PAINLESS! They are using it for all causes of dysphagia... even HEAD AND NECK cancers! Hospitals are starting to use it. I found out when I did a search on the therapy "VitalStim" itself. So I came back here and figured someone here MUST have posted about it before but I did a search on the term and got 0 results. Brian, Ed, Danny, anyone please tell me I really have stumbled on some hope FOR ALL of us.

Here's a link to the FDA clearance to market for it - unfortunately they didn't file a 510(k) "summary statment of safety and effectiveness" so there isn't much information (other than the brief "indications for use" statement). There are links to the manufacturer. It was cleared to market in Dec. 2002 and was found to be "substantially equivalent" to existing devices on the market at that time. It is similar to a TENS unit.
http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfPMN/pmn.cfm?ID=9690

Jeepster,

I emailed you an article "Independent review and studies report remarkable success using VitalStim therapy. In these studies, more than 70% of patients with chronic dysphagia resumed normal oral feeding after an average of 12 treatment sessions." (Electrical stimulation for swallowing disorders caused by stroke. Freed, et al., RespirCare 2001 May;46(5):466-74). These studies focused on dyphagia related to stroke victims. There is more information available on www.vitalstimtherapy.com.

It may not be the silver bullet that cures all but it would be worth investigating. I didn't have the partial glossectomy or neck dissection and I sometimes choke on even swallowing water so I can imagine how difficult it would be to have 2/3 of the tongue removed. I hope e-stim is a viable option.

Ed

Thanks Gary & Ed,
I'll investigate a little more now. Wonder why this stuff never gets mention from the Dr.??? What's the big secret? I hope it's just their "ego" and not that it wouldn't work in Don's case. They know I'm a ferret about this. If it's out there I'll find it! I never heard of a tens unit either.
Anymore info is GREATLY appreciated, and if anyone out there has any experiance with this or any other methods, I'd sure like to hear about it. Thanks!
Karen

Hi, At the present time my husband who had nasopharynx cancer and radiation from November to December 2003 can not eat anything that is not thick liquid. He had 8 sessions of Vital Stim on home care and is presently scheduled for three weeks, 5 days a week of Vital Stim. He has had 2 sessions this week. After the 3 weeks, they will then do another swallowing test to see if anything changed. We are hopeful that this will get his swallowing muscles stronger and working. I can let you know how it is going. Eileen

I would venture to say that maybe the doctor hasn't heard of it. I had to educate my doctor on the benefits of IMRT. That's why we are here - to pool our knowledge and give you more tools to be your pwn patient advocate. Lately I had an oncologist and a nurse asking ME for advice - now there's a twist.

It might depend on what doctor also - you may need to consult with a swallowing specialist.

The muscle simulator makes sense since many of us have pretty severe muscle damage and/or atrophy.

TENS stands for "Transcutaneous Electrical Nerve Stimulator". It actually mainly used for pain management.

With the procedure that Don had, especially if they did a pectoral flap, swallowing will never be the same as it was. The pectoral muscle is used to add bulk only and is not a replacement for the functionality of the original muscle. This is not to say that some improvement cannot be made however but some adjustments may be neccessary. Even those of us having only radiation have permanent muscle damage of varying degrees.

I have a friend that receives vital-stim for facial muscle paralysis due to brain trauma. It has been miraculous for her. She goes daily for therapy. Today she called me and stated that she moved her eyebrow, a major milestone.
Darrell

WOW, Thanks everyone! I may have misled you about Don's tongue, 2/3 of his tongue BASE was removed and it didn't cross the midline (though it came pretty close)That probably makes a differance in prognosis for swallowing. Tongue Base is probably worse than surface but only one side should be good in that one side is normal? Eileen and Darrell PLEASE keep me posted as to how things are going. It's so encouraging to hear your stories. Eileen, I'm inclined to judge for ourselves if there's an improvement rather that put faith in the numbers on the machine. Can he really swallow better? Gary, I know what you mean about this board being so informative and I believe we really do have an edge on what is new and whats working with this damn disease. Our "diagosing" ENT never mentioned IMRT. Our second opinion did ... but didn't mention a PET scan but third opinion did... and no one mentioned IMPT (Proton therapy) but OCF did! It'll be curious to see if his swallow therapist "pooh-poos" it. Then what? I have info coming on it but can anyone tell me about price? Don is fortunate to have very good insurance but this could be considered expermental (Isn't all medicine? Thats why they call it a practice.) Darrell your personal story almost parallels Don's except he was N2b. And threatment was identical except he had cisplatin. But the biopsy on his tongue was still positive 2 1/2 months after rad and we had to have the big surgery instead of just nodes. Strange how differant everything can be from one to the next. I pray for all of us dealing with this cruel cruel disease.
Karen

Hi, Vital Stim is being paid by my insurance company without any problems. After 8 sessions they did a swallowing test where they could see with an X ray how well the muscles were working and we were told their was no significant difference from the last test. As a result Bob my husband has to eat nectar thick food. He appears to be eating much better every day and we were all quite surprised by the results of the test as we have seen a big change but he is still at risk for aspirating food. They want to do another test in two weeks. I will keep my fingers crossed. He has also gained 15 pounds in 12 weeks
He is able to eat about 3000-3500 calories a day. That has also been a big change. I will keep you posted. Eileen

Eileen that is wonderful! Did Bob have any surgery? Don is just BARELY eating one 6oz cup of yogert per day. No water, no nothing. He coughs after every bite. Actually part of his therapy is to "clear his throat" twice after each swallow. Then he coughs a lot for about an hour after too. He hates coughing.. he's getting so discouraged. He and 2 of his buddies had tickets for one day at the masters golf tournament in Wisconsin next week. To watch Tiger Woods and all the others in our home state! They got the tickets way last fall... before we knew..He canceled on them today. No way he says, he can't stand out there for 10 hours. How could he eat? The guys will be going out to eat (and drink) He can't hardly hang a bag in a tree. Two hours from home, he'd have to stay in a motel and it's just too much to juggle. This is just breaking my heart and I don't know what to do anymore. He use to walk 18 holes pulling his clubs, now he rides for 9 and is exausted. He gets dry, but he buys everyone else a drink off the beverage cart and tips the service. That's just how he is. I do everything I can for him but I can't even buy him a damn drink. I have to find something that works for him, wherever that might be. I worry that he's not getting enough calories for his usual active lifestyle. He has 9 cans of 237 calorie Protain XL per day. That's barely over 2100 calories per day. He use to be a "bit" overweight at 204,(beer belly - gone with the beer) now has been within 5 lbs of 167 since surgery in April. He weights in every day and on golf days he can be 2 - 3 lbs lighter. Then he's wiped out for a day and gains a little back. He spends most of his day in the recliner. Do I let him rest or push him? He's only 5'8" but I wonder if he's getting enough nutrition, but he gets upset when I mention having any more because he doesn't want to be attached to the bag anymore than he ABSOLUTLY has to.(Who can blame him) I once learned that it takes 2500 calories to support 150 lbs. So I don't know what their doing but it sure seems like they're shorting him. Is Bob on a PEG also? It's awesome that insurance is covering it for you. It's about $170 per treatment I hear. Don's should if the Dr. refers him for it but I fear that might be a roadblock. What if the Dr. doesn't? Sometimes, (a lot) when you suggest something, they blow it off.. of coarse because THEY have the education, right? And they seem threatened somehow. DUMB. Well I've done my venting for the night. Sorry for rambling. Thanks again for any info and suggestions you can provide. Thank You so much,
Karen