Another post to see opinions on vital stim. My dads speech therapist thinks they might go that route next. Does anyone know if insurance companies pay for treatments? He has been on a peg tube for a little over a year now. Do you know if the therapy helps with regaining epiglotis function? His vocal cords still work amazingly and he has fibrosis of neck I guess, but isn't able to swallow even water without aspirating due to his epiglotis not working. Just hoping to hear someones success story with vital stim!

Its only necessary to write one post per question. Members will respond if they are able to help you. There are only a very few members who have the after effects your father suffers from. Charm is one and has answered on your other post.

I did Vital Stim therapy and would consider mine a success story. After my treatment of radiation and chemo, and living 100% on my feeding tube for about 6 months, when I did finally attempt to start eating by mouth I found myself having trouble swallowing anything, and when I did attempt to get something down I would end up getting fevers. After about 8 weeks of the standard swallowing exercises prescribed by the Speech therapist at the cancer center, and a 2nd failed swallowing test,the therapist eventually said there was not much more they could do but mentioned Vital Stim therapy as a possible last option. There was literally only 1 place that offered it in the whole area, at a retirement home. I started the therapy about twice per week for about 30-45 mins and it was not covered by insurance.
I really started to notice improvement right away and after a couple months I was eating lots of different foods. Eventually I was able to get my feeding tube removed and have been eating and drinking pretty much whatever I want(as long as its very moist or I have water to wash it down with) for about a year and a half now. I have no way to know for sure if my success was completely due to the Vital Stim, but I can tell you I did not do nearly as much excercise while doing Vital Stim as I had been doing prior to beginning Vital Stim with minimal results.

Let me know if you have any other questions.

Thank you kevin for your response about your vital stim experience....it is just nice to know that there is some hope when the speech pathologisr has told my dad that they are out of " conventional" ways to help him and now they need to think out of the box. I'm praying it will work. Can you tell me about how expensive the treatments were? My mom is nervous knowing they aren't covered by insurance....guess the insurance company must think feeding tubes are less expensive than other options huh? Also....when you said you failed 2 swallowing tests.....could you explain more? Did you get anything down? Did you do the barium test? Did they give you any more detailed info from it? They told my dad they he had some stricture, but his vocal cords were working and the good news is that there was no sign of reoccurrence of any cancer or anything. They also told me that he has some fibrosis from the radiation he's had. I will try to get all of his history and post that on a signature...he has been through soooo much it is hard to remember. Thank you!!!!!!!

Christine...sorry if I did something wrong by posting 2 DIFFERENT questions....I am just trying to get some advice i can pass on to my dad. I am new to this so I would appreciate your patience.

I have no problem with your posting and hope that this would work for your Dad as it has worked for others here at OCF. In fact it was posts like Kevin's that I found out about vitastim. I have Blue Cross Blue Shield and all my VitaStim treatments (30 of them) were covered as they were billed by the Speech Therapy department at my CCC. I had explored using the local retirement homes as they are often the only ones using VitaStim but they wanted me to pay upfront and get reimbursement from my insurance since I was not a patient at their retirement home.

I had posted last year a link to a NIH clinical trial that explains the principle behind VitaStim which is simply one brand name for E-stim. Here is the link which should answer other questions you may have NIH E-stim

My surgeon pointed out that I did not qualify for this trial since they excluded people like me who had extensive surgery
I cut and pasted those restrictions as it seems they set the parameters for a good chance of VitaStim to work. Unfortunately my surgery was too extensive
#

[quote]Surgery for their cancer, if done, must meet these criteria:

* diagnostic biopsy
* less than � of oral tongue resected
* less than � of tongue base resected
* no floor of mouth muscles resected
* less than 50% of any other part of the oral cavity, pharynx or larynx resected
* no resection of hyoid
* Neck dissection, unilateral or bilateral neck dissections may have been completed prior to or after radiation therapy.[/quote]

Charm

Thanks Charm - I really appreciate the information that you posted. I know my mom is really nervous because their insurance hasn't denied, but has questioned so far, every time that they have even seen the speech pathologist. So it is discouraging to think that Vital Stim might not be covered???? I just pray all of the time that something will help my dad learn to swallow again and eat normal food. He's ok most of the time and is such a positive man, but not being able to eat is really wearing on him.

Dabbjjesse-

Just wanted to note that although I paid 100% out of pocket. The total cost was only about $1800.00 for about 2 mos of treatment twice/week. Even though it would have been a challenge, I would have been willing to pay quite a bit more than that especially after I noticed the initial improvement. Also, without even asking, I was billed in 2 separate installments and didn't even receive the first bill until a month or so after treatment was completed.

Dabbjjesse-

Sorry..just saw your add'l questions...after the initial Barium test, I was told not to eat or drink anything by mouth. They said I had silent aspiration even with thickened liquids, which was no suprise as I was having trouble and coughing even with soup. After about 6 or 8 weeks of the standard exercise regiment, I repeated the test. This time I was feelling good and confident I would pass with everything, but it turned out I was still silently aspirating. At that point, I was told that I should only drink nectar thickened liquids and continue with a few pleasure foods, but also continue to supplement my diet with the feeding tube. I was also told that I should continue with the exercises, but that I may not see much more improvement. Thats when they mentioned Vital Stim therapy as a last opion, although it is still unproven, not covered by insurance, and not offered at Moffitt Cancer Center.

Thanks Kevin! Sorry if i am bothering you with so many questions, just trying to help my dad. It is nice to hear others stories. I'm curious if you could share some of your swallowing exercises that you were told to do......sometimes i question my dads speech pathologist.......he can't swallow and the only things she has given him to do involve actually swallowing. From the research I've done online, it seems there are tons of exercises to strengthen the neck muscles, etc....in hopes of helping one to swallow again in the future. Even have read about massages that help with the fibrosis, or hardening of the neck. I saw the shaker technique and dads therapist hasn't even mentioned those two words. Do you mind sharing what you did when your pathologist told you they orettt much couldn't do anything more before you tried vitalstim? I just don't want dad doing nothing......I want him to try to strengthen things and keep stetching his mouth....which he cant oooen very far by the way due to past skin cancers and radiation. Any advice would be appreciated. Oh....and i keep seeing hints about thickening liquid....why is that? No one has ever told my ads to try anything besides water or ice chips? Thank you sooooo much!!!!!

It's no bother at all. The exercises prescribed by the speech therapy department were: Shaker exercise, Mendelsohn Maneuver, Effortful swallow, Laryngeal Elevation exercise(make a high-pitch 'E' sound). I only had a few sessions with the therapist, where she taught me exactly how to do the exercises correctly. On a couple occasions, they hooked up some electrical diodes to my neck connected to a small machine that could measure the amount of force I was exerting during the swallow. That was helpful in quantifying the actual improvement I had been making. Most of the actual leg work was done on my own though. I did all of the exercises religiously, about 5 times a day, over time gradually increasing the reps or the exertion, much like if you were weight training at the gym.

During the same period, I was also prescribed neck and lymph massages which were done in the physical therapy department at the cancer center. Now that I think about it, I do think the massages got rid rid of alot of the excess lymph fluid that was around my throat area, which did make swallowing a bit easier.

I also had and still have problems opening mymouth past a certain point. For that I purchased a device called Orastretch. Its pricey(about $450) and the doctor said it would serve the same purpose as a stack of tongue depressors, but I tried the tongue depressors and it just seemed like kind of a pain to me.

As for your question about thickened liquids, I would check with the therapist on that. There may be a specific reason they did not mention that to you. And one other thing...although I eat everything I want at this point, I don't think my swallowing is back to being perfect by any means. I am fairly certain there is probably some amount of silent aspiration going on. I am otherwise fairly healthy and active, so at this point my body may be able to compensate for any food particles or liquid that does make it into my lungs. If I were bed-ridden, or as I age, that may change.

Hi Guys,
I started Vital Stim 1.5 weeks ago at 3x per week. I have had a modified radical neck dissection 1x and radiation 2x. So far not a lot of difference. The machine has been maxed out at 25 on my neck and still almost no sensation for me also no damage to flesh. My insurance looks good to cover up to 100 visits per year - BCBS of Mass. I plan on trying this layered with Physical Therapy for the next 6 weeks or so. I'm having an esophageal dilation and mouth stretch (15mm current - trying for 35 to 40mm)on the third of August. I don't know how this is going to turn out but I'm hopeful. Good luck to you.