NeuroTalk Support Groups - I can feel my fingertips for the first time in ten years

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Thoracic Outlet Syndrome (https://www.neurotalk.org/thoracic-outlet-syndrome/)

- - I can feel my fingertips for the first time in ten years - Botox, Dr. Donahue (https://www.neurotalk.org/thoracic-outlet-syndrome/204285-feel-fingertips-time-ten-botox-dr-donahue.html)

Hi Eight
I hope your sx get better soon! I know the tos surgery flare the nerves up for least 4 wks. Its been 1 1/2 yrs postop my rt tos surgery w Dr D. and I still have the new burning sensation in my ring and middle fingers. Numbness in pinky &ring fingers is number than it was bf surgery. I ended up w permanent chest numbness on my lt side, but the pain is much better on Lt. So guess its a trade off! I'm scheduled for Pec M. Tenotomy 3/26 and getting nervous cuz I dont know what to expect as far as not being able to lift your arm take a shower, drive. What was your recovery like for the Pec minor? Did the surgery cause u any new numbness? Having my Rt side done & I'm Rt handed. I take it Dr D doesn't do a lot of these, cuz he says Pec m is rare only 8% of people who have tos also get Pec m. Did u have a piece of the Pec m muscle taken out?
Keep us posted on you recovery!

Quote:

Originally Posted by Eight (Post 1128026)

Hello, everyone! Turning this thread into my personal blog I guess. When I was deciding on a doctor/treatment, I was following people's posts on here, but their posts were all spread out. Hopefully, keeping some of my updates here will be helpful.

Okay, Thursday was 4 weeks post my right side first rib resection, anterior and middle scalenectomy and removal of scar tissue from the brachial plexus. (Dr. Donahue)

I am 7 months post surgery on my left side first rib resection, anterior and middle scalenectomy and removal of scar tissue from the brachial plexus. (Dr. Donahue)

I am 15 months post surgery for a bilateral pec minor release. (Drs. Annest/Sanders).

So my right side surgery went smoothly. I have numbness a the end of all of my fingertips and the 4th and 5th digits. It is slowly getting better since surgery. However, being able to compare the two sides has been an great thing, because I can tell that the left side usually feels better than the right.

My left side is more cordinated than my right side at this point with all gross motor skill. I am right handed.

I currently that whole, "they took a bone saw to me" feeling in the rib (which a lidocaine patch to the back seems to help alot - along with hydrocodone and advil). I know from my previous surgery that this feeling really starts to go away at 6-8 weeks when the rib bone has capped itself off. I was also given Soma, by the neurologist, I think mostly so that I would sleep and recover.

However, nerve pain is definately going to be a lingering problem for me. Nerves regenerate at 1 inch per month. I am guessing that it will take about 3 years for my nerves to regenerate and I won't have the nerve pain anymore. My left side is already less painful than my right as far as nerve pain goes, but it is still pretty intense.

I quit taking gabapentin because I gained 60 pounds on it (stopped this sometime in November 2014 and have already lost 15 pounds just laying around, so that's happy). Tried Keppra, but it made me dizzy, now trying Tegrital.

I also take r-lipoic acid, b-12, multivitamin and use a TENS Unit with gloves every day for at least 20 minutes.

Typing sucks - my fingers are all confused - 4th digit is about two letters behind all the other fingers on both hands.

Hope your recovery is going well
Are your nerves still flaired up? I'm having a Pec m tenotomy next week. Was wondering what your Pec m recovery was like? Must of been tough having both sides done at once.
Take Care

Quote:

Originally Posted by Eight (Post 1128026)

Nerves are on fire still - especially on the left side. Right side is still clumsy, obviously nerves are still healing.

I was diagnosed with Hyperflexibility Ehlers Danlos Syndrome now...probably a factor in getting TOS.

Quote:

Originally Posted by Eight (Post 1135869)

Hey Eight, sorry to hear about the EDS, and thanks for coming back w/ an update to let us know how you are doing.

It seems you're 8 months post-op on left-side - does Dr D say when the fire should stop? Is he concerned with this, or is this the usual course?? Has all the numbness gone away by now on the left?

And, any chance you've noticed some improvements?

thanks again -

Quote:

Originally Posted by Eight (Post 1135869)

Hi Eight,

Thanks for the update. I too would like to know if the left side nerve pain and clumsiness 8 months post-surgery is to be expected, if Dr. Donahue offered any feedback on this. Also, is there any improvement of symptoms since the surgeries?

Also now diagnosed with Complex Regional Pain Syndrome....was given memantine today, will give an update on this new medication once I've started and have an opinion.

Quote:

Originally Posted by Eight (Post 1139421)

Also now diagnosed with Complex Regional Pain Syndrome....was given memantine today, will give an update on this new medication once I've started and have an opinion.

Have you tried PEMF? iMRS or Bemer mats - many chiro offices carry them in the US. Go for a session or two. Dont purchase. They do help with Fibro/CRPS. I have been told I have Fibro/CRPS/TOS

Quote:

Originally Posted by Akash (Post 1140353)

Have you tried PEMF? iMRS or Bemer mats - many chiro offices carry them in the US. Go for a session or two. Dont purchase. They do help with Fibro/CRPS. I have been told I have Fibro/CRPS/TOS

What is pemf? And what type of pain does it treat?

Thanks for any info.

Pulsed Electro Magnetic Field Therapy.
Long story short - long history of using magnetic fields to influence body/physiological changes. Some evidence, but modern research shows human body reacts to quick changing, pulsed magnetic fields. They work in terms of inducing electrovoltaic potential changes at the cellular level & have been shown to a) reduce inflammation significantly b ) help with acute injuries c) reduce nerve induced pain symptoms.
Multiple mats/devices available (google for pawluk PEMF) - ranging from high power (and very expensive) to mats/full body equipment (low/high power, expensive). I'd go with a full body mat & try it at some chiro. Note, the mats are mostly made in Europe and are of Russian (QRS), German (BEMER) and Swiss (iMRS) origin. QRS is the simplest & has the most evidence. BEMER also has some studies behind it & is more expensive. iMRS claims to be the most modern etc and is equally expensive as BEMER.
I have tried iMRS and found it useful for general well being and some pain reduction. Again, try it for an extended period of time to see if it really works (to reduce impact of placebo effect) and see if its worth the effort.
Local devices include Somapulse (a variant of which I use & have found useful for localized pain).
In short, useful "adjunct therapy" if not the cure itself.

Another useful device which worked instantly for pain relief similar to TENS but much stronger and localized was InterX (this might be worth a shot, http://www.interxtherapycenter.com/) However, the device itself is very expensive (retail wise) and over time bodies do adapt to TENS. So it has to be continued, discontinued etc.

Okay, so I have been taking Namenda XR (for nerve pain) for almost four weeks and it seems to be helping quite a bit. I started out at 7mg and increased by 7mg a week up to 28 mg per day now. It is actually an alzheimers medication, but also helps with pain - in interrupts the pain signals in the brain in a different way than opioid medications do. But here is the really awesome thing about it, since opiod medications make you sort of stupid, out of it, groggy, sleepy, etc... this is NOT like that. In fact, because it is a "cognitive enhancer", rather that being dumber, I'm actually remembering more and getting smarter on top of having less pain. So really though, here is the catch, it is only approved for alzheimers, but is used off label for things such as phantom limb pain, neuropathic pain, and several other things. I was given a sample pack and am not sure if my insurance will pay for it, and when I looked it up on GoodRX.com, it was either $300 or $600 or something crazy like that per month. Anyway, this drug is awesome for the nerve pain, I will keep you guys updated as to how it goes with my insurance when I go back to the neurologist later this week. Feeling Human!!!!