Is electric stimulation for dysphagia worth the cost?

[david42]

This is my first thread. I was diagnosed 5 weeks ago, but my symptoms started 6 months ago. I have significant dysphagia (my speech isn't very understandable) and i have swallowing problems.
I saw a speech therapist today who recommended electrical stimulation therapy but i don't know if i think it will really work.... Any comments or opinions?

 

[BethU]

Hi, David ... I'm so sorry you have been diagnosed with this, but glad you found this forum.

I haven't heard of electrical stimulation therapy before. Is this for your speech or your swallowing problems? Is your speech slurred (disarthria) or garbled? Have they done swallowing studies?

I'd like to hear more about the procedure, as it sounds counter intuitive to me. Generally, with ALS, you try to conserve your muscle strength as long as possible. I've been told by my neurologist that the important thing is to not stress muscles, as they don't recover the way healthy muscle fibers do, so "electrical stimulation" sounds a little off-key.

I would check with the neurologist who diagnosed you before starting any therapy and get his or her feedback.

Take care.

 

[Al]

Geo uses a TENS unit for electrical stimulation. Not sure if it's for bulbar symptoms though.

AL.

 

[BarryG]

Hi David, sorry about your diagnosis. I haven't heard of electrical stimulation in ALS and like Beth said, it sounds like something that would only tire out the muscles. Did your speech therapist say exactly what this would do or how it would help? I have both disarthria (speech problems) and disphagia (swallowing problems) and would be interested in knowing how it is supposed to help.

 

[gbrown]

There is a thread on the "Patients Like Me" forum about electronic stimulation for bulbar problems. Here is a quote from that thread:


I am getting E Vital Stim 3 times a week just had it 6 days in a row and it has been helping my swallow, choking, plem, speech strength. Medicare pays for it 100 [percent

They use it for ALS, Strokes, Parkinson and more

This is the website for the procedure:
http://www.vitalstim.com/



Gordon

 

[joelc]

I am not sure what to think?
I can almost get excited about this kind of treatment if they would realize our neurons are dead and develop a system to replace the impulses lost by the dead motor neurons.

One day maybe! They are not quite going about it the right way yet,

 

[BethU]

I checked out the VitaStim providers near me on the web site, and it is offered at quite reputable medical centers, including Glendale Adventist Hospital, so it's not in the "quack" category at all.

I assume if Medicare pays for it 100%, that is also a sign that it is not an experimental procedure. And it is FDA approved.

David ... I don't know if it's worth it or not, but it sounds like it's worth checking out. It also sounds like they have diagnosed you pretty early in the disease process, so that might be an advantage for something like this. I assume results would be apparent very quickly. If it doesn't help, you'd know it.

I think I'll check it out for myself at my next clinic appointment in a couple weeks. Personally, I'd rather have my speech back than my swallowing, but I'll take anything I can get.

Gordon: Thanks for posting that link. I'll check out the Patients Like Me thread.

 

[DgtofTNfan]

I found this thread on the ALSTDI forum ..
https://www.als.net/forum/default.aspx?g=posts&t=44916
Pros and cons are noted.

Our SLPs at our hospital do not do VitaStim. It is my understanding the results are mixed and it is used primarily with stroke patients who have had neurological injury. The brain responds and adjusts along with neuro re-education of muscles through therapy. The protocol is usually time limited for VitaStim such as 3 x wk for 4 wks so I am not sure how this is factored in for PALS who have progressive neurological changes.

I would also be interested in learning more from people who are using it.

 

[donarden]

My husband had 14 VitalStim treatments. At first they helped, then towards the end he didn't improve any so the therapist stopped the treatments.
Donna

 

[BethU]

This is an old thread, but there are some recent posts on PLM from patiennts with advanced ALS who are experiencing an improvement in their throats and lessening of secretions. I think it's definitely worth a try. The successful ones are getting very frequent treatments.

I don't know what gives with these secretions, but sometimes I feel like I'm drowning.

I think I'll start with my speech therapist at the clinic and work my way up the food chain.

 

[Alley_FL]

Hi
I have received Vital Stim treatments by my ST with great results ! Before my diet was mostly boost or ensure , and thicken was part of my life and I did not like drinks that were thickened. I ate at times some mashed food but still choking and the energy and fear it took was not enjoyable. I did not know anything could help until my Doctor recommended Vital Stim !
it has changed my days ! I had treatments there times a weak sometimes 6 days in a row for half hour up to over an hour. Now I eat and drink everything. My voice strength is stronger though I could still talk if I tried to talk get my husband rooms away I had to call him on cell phone with speech activation when I needed him. The Vital Stim treatments each one made me feel good ! I could feel the difference and was liking it ! Now I have been eating everything. If I start having problems again I will call her and get more treatments . She had helped other Pals one that lived a few streets away from me that was a Bulba onset she could still walk I can not. I have sense then done a lot of reading on it and it is recommended for ALS. Not everyone takes to the treatments Werther you have ALS or not . I feel it is worth trying. Medicare paid for my treatments done in my home 100 percent !

 

[joelc]

I am glad it helped you Alley. I wish you all the best!

 

[pat-in-fl]

Hi - My mom has bulbar onset ALS. She presented with slurred speech and dysphagia. She had routine speech therapy for months without improvement; then vitalstim for months also without any significant improvement either. Believe vitalstim has more success with stroke patients (per the therapist)

 

[Big Mike]

I don't know anything about the swallowing muscles, but I have heard that electrical stimulation of the diaphragm muscles (diaphragm pacing stimulator--see other threads) can help them function longer. You certanly don't want to overtax your muscles, but I am a believer in working them out to some extent or they will wither away that much faster.