Marc,

Many thanks for your encouragement. This has been really challenging for me, as I did not experience these symptoms at all following my first surgery. I certainly hope I have the same positive outcomes as you did.

I know Dr. Donahue removed two out of the three scalene muscles. I'm just not sure exactly which two!

How are you doing after your surgery? My left side is *so* much better.

It had to be the anterior and median scalenes removed which are the ones that attached to the 1st rib.

My left so it so much better as well. I'm still working to fully return nerve mobility, eliminate numbness, and return full hand strength...almost there. Right side surgery is Thursday.

I'll be thinking of you on Thursday, Marc. Keep your head up!

What anti-inflammatories do you all recommend for Neurogenic TOS? I tried Mobic and now I am taking Relafan but it doesnt last that long. I've never heard of anyone else taking it.

I have still not started on the Neurontin, because last week I felt better than I have in months due to the new PT that Marc (Nospam) recommended. I had a flareup yesterday I think due to overstretching, doing nerve glide/stretches. I took a flexeril this morning but had to add the Relafan later in the day. The two together make me tired so I'm hesitant to add the Neurontin.

I am driving 1 hour each way to the PT 2x a week so dont like to take too many drugs for the drive.

Celebrex is supposed to be the safest (on the stomach at least) of the NSAIDs, and it lasts all day (you can take it once or twice a day). Celebrex may have some other risks if you have heart troubles. I was on Mobic and it was effective but several doctors advised me not to take it long term. Advil and Alleve have been effective for me too, but Alleve upsets my stomach. I'm not familiar with Relafan.

I stopped taking muscle relaxers as I seemed to build up a tolerance and kept having to switch (Flexeril, Soma, Zanaflex). The anti-anxiolytics/Benzodiazepines such as Valium or Ativan seems to work better for many TOS'ers. Driving may be a problem on these drugs just as with muscle relaxers.

During PT I stopped doing the side neck bend stretches as well as side neck bending during the nerve gliding/flossing as it was flaring up my TOS. The nerve gliding was fine once I stopped engaging the neck.

My doctor and PT want me to try amitriptyline (elavil) 10mg to calm my nerves down as as I'm getting so much wandering pain in other parts of my body. I've read some good reports of it for neuropathic pain - has anyone here tried it? I've resisted taking anything other than ibuprofen as I'm just coming to the end of my taper for paroxetine (paxil) which I've been on for 12 years and see this as a major acheivement, and don't really want to replace it with another drug straight away!

Elavil/Amitriptyline and Pamelor/Nortriptyline are similar and in the same drug family. Pamelor is more modern and actually breaks down into Amitiriptyline in your system. Ask you doctors about Pamelor as I believe it should be chosen over Elavil. Either of these drugs in low doses should be safer for your body than ibuprofen.

My doctors have given me a post-surgical goal to stop taking NSAIDs and Narcotics regularaly and eventually be able to manage just on Neurontin and Pamelor (taking Ibuprofen and/or Norco only as needed).

Just thought I'd add in here - when I was on 900 mg/day Neurontin, I did not experience any side effects. As it was not kicking my pain, I was upped to 1500 mg/day, and I have been experiencing involuntary muscle movements and lightheadedness. I am now going to 1200 mg/day to try to resolve the side effects and also manage the pain. Fingers crossed!

Hi lady laura ? are you still on the neurontin. Has it been working for you ?

Hi there,

Yes, still on gabapentin/neurontin for nerve pain. I've been taking it now for about 4 months. My surgeon just suggested another dose increase to 1500mg/day as my left arm continues to be sensitive. Ice also helps too.


How are you managing?