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!

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

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.

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 -

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.

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!!!!

namenda
 

My insurance quotes me a price of $229.80 for 90 days. Steep, but probably worth it if it as good as you say. Insurance also suggests donepezil hydrochloride as a lower cost alternative ($11.35 for 90 days). Any thoughts on donepezil's effectiveness?

Brilliant. Hope the good news continues!!

See if you can get somebody from India to get you a few.
http://www.medindia.net/drug-price/memantine.htm
http://www.medlineindia.com/CNS/memantine_hcl.htm

Works out very cost effective, since 1$ = 60 Rs.
Some of these firms, Sun pharma etc are Ok. You can check the firm website and Annual Reports etc to get an idea of the company etc.

Reason I say this is because antibiotics made by Dr Reddys which sell in India for a few$ cost 80$ in the US. Its a massive rip off from the customer point of view, if you pay out of pocket.

TOSlady and Akash, I will look into both of those options. My insurance won't pay for the NamendaXR for me, so I'm no longer on it, and that sucks.

Akash, do you need a prescription to get the Namenda from India? I looked it up and it is basically less than $2.00 for a month prescription if I looked at it correctly, shipping will cost more. I know the non-extended release kind is $60 and they will ship it to you from Canada....

TOSlady, I will ask my neurologist about that medication and see what he thinks.

My doctor had me up to 13,000 mg of Keppra and I ended up having auditory and visual hallucinations from it along with the Tegretal.... It was interacting with the Tegretal which I was at 600 mg daily, so it made the Tegretal stronger, causing Tegretal poisoning effectively and I lost my balance and would get very dizzy and became paranoid and extremely slow thinking, basically I became and idiot and increasingly so as the dose increased, but then I would grow a tolerance to the level and get better with the slow thinking up to about 8,000 mg was tolerable for all side effects so long as I increased those dose no more than once a week or once every two weeks by about 500-1000 mg. Soooo, I guess I tested the limits of those medications, lol. Anyway, I am off both of them now, though I did lose 45 lbs while on the Keppra and it did help with the nerve pain. I went off it really quick which was a bad idea and went through major withdrawal for about 5 days.

So I want to share my current medications, because I'm doing fairly well on them:

100 mg of Tramadol XR twice a day - once in the morning and once at bedtime
300 mg of Trileptal twice a day
Torodal 10 mg - up to 4 times daily, but that much would eat away my stomach and cause bleeding in the stomach on a regular basis, so I usually only take 1-2 pills per day.
Nexium 60-80 mg per day - to help prevent the stomach problems that Torodal ALWAYS causes if taken over long periods of time.
Lorazepam .5 mg - I usually take one at night because that is when my nerve pain is the worst and I get anxious when I start hurting so much which only makes my muscles tighten up and worsens the pain.
Savella - 50 mg twice a day

If I really want to not hurt one day I will take 40-80 mg dextromethorphan per day, because that is also an NMDA antagonist and it blocks the pain signals to the brain. However, I have to take this before 2pm or I won't sleep at night, and I can't do this every day or I will develop a tolerance and at higher levels it causes hallucinations and paranoia. At much higher levels people "Robotrip", but that's at crazy high levels and people die from doing that and stuff, so one should not use too much or very often I think. Since starting the Tramadol XR I haven't taken the dextromethorphan at all, so that says a lot for the Tramadol XR's effectiveness.

In the past I was prescribed Tramadol - not XR, and it didn't last long enough for me to feel like it was helping with my daily functioning....but I'm really happy with taking the XR twice a day - it's supposed to last 24 hours, but this way I don't have as much break through pain when it starts to wear off.

Most indian pharmacists do ask for prescriptions. You could however take a photocopy of a prescription and ask for it for somebody traveling from India (bound to be somebody).. they should be able to get it. Let me know if you cant get it, and i'll call up/mail the India firms and see if theres a way they can ship/get it to you.

Dr Reddys has launched Memanta (same med above) in US
http://www.drreddys.com/media/125015...13_july_15.pdf
http://www.pharmatutor.org/pharma-ne...nda-us-markets

Should be less expensive than the usual overinflated prices.

Why would your feet have anything to do with thoracic outlet syndrome?

It's odd for sure. THere's a few theories out there.

One is that the central nervous system gets stirred up and that it interprets pain more readily from sensations that will not normally produce pain. Look up "central sensitization"

Another could be that your blood flow is being restricted.

My massage therapist thinks its fascia. In my case, I agree with her. There are these little casings that slide over our muscles. THey group them up. For example, a single muscle in my calf might have a fascia, but all the mmuscles in that group would also be encased in another fascia. She says there's a long fascia that runs from the base of the skull down the back, leg, and into the heel. She often finds patients with tightness in the neck will also get heel pain. I stretch out my calves and back and everything running along the line of the fascia and it reduces my heel pain.

For me personally, the heel/sole of foot pain started at the same time as my TOS symptoms, and when my TOS symptoms flare, the heel pain gets worse.

Don't think of TOS as a single part in your body. TOS has more to do with vast structures that flow throughout your entire body. This is part of the reason why it is hard to diagnose. [You go to a hand doctor for hand numbness and they are stumped.]

When my physical therapist did manual work to lower my rib, my feet would kick out instinctively. I believe it is because the giant nervous system was gaining slack. My feet probably loaned everything it could to my shoulder. Your entire body gets 'tight' because of stress in one area pulling everything towards it.

Hi, My doctor recommended scalene nerve block to rule out neurogenic TOS. I cannot find any doctor around me to perform. I can travel to MA. Can you tell me who in MGH performs it? Does Dr Donahue provide the script? Does the doctor that performing it uses ultrasound to guide the needle?