So how did this work?

KY

Emmie,

Did you ever have this done? What was the outcome? Has anyone else had this done?

I'd like to learn more about this. If I find out that my compression is not due to any bony abnormality, cervical rib, etc. and it's mainly due to scalene muscle hypertrophy as part of my training regiment, maybe it's possible to "shrink" the muscle in this way and remove the compression without going in and trimming it away.

KY

Um, it helped restore almost-normal circulation, but also triggered a bad case of RSD. An unusual reaction, so even though I wish I hadn't done the injections, I wouldn't let my experience stop you. I am noticing some circulatory issues returning a little bit, two months later, but there was a time when the circulation seemed almost normal.

As far as my doctor told me, for neurogenic TOS, the primary cause is perineural fibrosis(Sp?) at a physical level and an upregulation of ion channels in the nerve cells at the more microbiological level. The scalenes are a secondary cause.

I have not had botox but I have had another type of injection procedure with excellent results and it's much cheaper as the drug used is generic rather than the expensive botox. The drug was heparin and it gives about an 85% pain reduction for a month or two. One should still be careful about irritating activites on it as reducing irritating activites and PT are the actual things that bring down a flare.

A new drug epo which is in the same class has a 6month effect and seems to be somewhat curative. That techniques is still in clinical trials so it's not generally available

Heparin, however, is starting to become well known. One of my pain doctors who is a professor at top medical school said at the last pain conference he went to everyone was discussing this more details can be found in these papers

http://www.doctorellis.com/publications3.html


Heparin did help the one person I know with very advanced TOS with nerve death on electrodiagnostics

I have heard of one case of RSD from this injections but I think that is a risk of injections in general, not of this particular procedure

Thanks, we all know this, please check my threads.

Emmie,

where was this operation done?

I too have had botox in the scalenes.

I originally recieved botox in my forehead, temples, back of neck and shoulders for migraines. Botox was the first thing to really help my migraines. I went from 13 a month to a couple every 3 months. Now they are much reduced and less intense when I do have a migraine.

I started having problems with my right arm getting very cold when I ran or hiked. Testing showed tos, but no extra rib, etc. More testing indicated that I have cervical dystonia (not sure I spelled that correctl). My muscles are constantly firing. The thought being the scalene was so tight it was closing off the pathway for the nerve and arteries to the arm. One nerve in particular causes the arm problem

The first time I had botox in the scalene they used ultrasound to guide the needle. My scalene was 2 times the size it should be. Now they are very atrophied. I go in every 5-6 months for botox. Even atrophied my neck it tighter than normal.

I do get some relief from the botox . It allows me to do other things like stretching and yoga which gives me more help as well.

I have had odd times where the muscles get too relaxed and for a few weeks I have trouble doing certain movements. Small price to pay for not being drugged all the time

[QUOTE=boytos;786792]Thanks, we all know this, please check my threads.

Or we could just let other people answer questions and provide information that may add more to the group. Maybe everyone doesnt know this?

[QUOTE=tossucks;792258]
I'm really interested in hearing about anyone's experience with Dr. Ellis and the Heparin injections. From my perspective, Dr. Ellis' writings make a lot of sense. I'm thinking seriously about giving the Heparin a shot because I'm at the end of my rope.

Thanks,
Kelly

Hi! I am back but I was on this board for about 6 years. I had Dr. Miller but I don't know if he's still around Tustin or Santa Ana.

Any ways I have had botox injected into my neck, righ arm where it attaches to the elbow, and lots of back. I was not allergic to it, but would mention it with any dr. about to do it, as sometimes our allergic reactions.