CT-Guided Botox and Marcaine Scalene Injections
 

I have arterial, venous, and neurogenic TOS, and am a candidate for surgery, but it won't be for at least 6 months, if at all.

I've just scheduled two less invasive procedures (one side this Tuesday morning, the other side a week later). The doctor uses CT guidance to put the needle in the muscle belly of the anterior scalene (avoiding the plexus), then pumps the muscle full of marcaine anesthetic (and maybe some neutral liquid, I forget what), in an attempt to blow up the muscle like a balloon, and break up adhesions.

Then, he releases botox into the muscle, to shrink it and relax it, with the goal of ultimately creating a modest amount of additional space in the plexus. The doctor said he wants to make sure the medication stays in the muscle, so each side he injects needs to be on full rest (can't use the arm at all) for a week after the procedure.

The whole thing is, he said, a "myolitic" procedure, which I think essentially means "muscle-destroying," though it definitely won't have the impact of an actual scalenectomy. According to MRNs, my scalenes are already atrophied, but they may be tight, and there may be adhesions in the plexus that didn't show up on the scans.

The cost will be about $2000 a side, and they don't bill insurance.

I think I am going to go for it, and see if I can't get this under control without the scalenectomy/resection. At a minimum, I am hoping this will make my life less miserable while I wait to figure out what to do about the surgery.

I had these procedures done (at the same place) 5 years ago, and they did help, maybe relieving 25% of my symptoms. I definitely thought it was worth it when I did it last time.

Now that I've discovered these forums, I just wanted to see if anyone has any thoughts or experience with this strategy? It's a lot of money, and it's two weeks of rest (I'll need to figure out child care!), but if it buys me a summer with less unbearable pain, and more arm function, I think it is totally worth it. The risks of making anything worse seem to be really minimal.

I am planning to have the first one done right away, and would appreciate any input. Thanks in advance!!!

"my scalenes are already atrophied"


Explain please :confused: How ?

You have arterial, venous, and neurogenic TOS without hypertrophy ?

The explantation I got is that there are probably adhesions/scar tissue where the scalene goes through the plexus, and it's impinging on vascular structures and nerves. As for why I have the atrophy, I don't know. Maybe the previous myolitic procedure? Maybe I have weird anatomy?

Interesting case... If myolitic procedure can give permanent atrophy, it can help many of us.

What vascular symptoms do you have ?

How do you got tos ? .. scar tissue is only perineural in RSI TOS i think.

I can't use my arms and hands at chest level or above, or they become dead and numb. If I'm flared up they become dead in any position. I also can't use my arms away from my body, unless they are supported. Even then, I have to keep them lowish, or they get puffy and numb.

As far as how I got it, it was an RSI, but that RSI came 10 years after an MVA whiplash injury to my neck that I had long recovered from, but I supposed might have contributed to my developing TOS. I didn't have arm and hand symptoms until 10 years after the MVA, during a time when I was working 60-70 hours a week with a terrible set up, and I had steadily worsening neck pain, and then suddenly all the vascular and nerve symptoms came on all at once, and have never gone away.

If anyone else has had the myolitic/botox procedure done (or has even heard opinions about it!) I would love any thoughts!

seriously, scalene atrophy on a TOSer :confused::confused::confused:

I have had botox injections done in my scalene muscles guided under ultra sound and emg. This is a procedure I have never heard of ever before. Have you asked him how many times he has done this procedure, and what kind of success his patients have had? $2000. clams is alot to put out on a procedure that...may work. Good way to start doing research, but I would get a second opinion, before spending that kind of money. Just my 2cents. Wishing you releief whatever the outcome.
Cheers,
Jay

I just re-read the radiologists report, and the atrophy is only on one side, and it is mild.

I think I am going ahead with the first procedure tomorrow, since it did seem to help when I had it done (at the same place) 5 years ago. I did have a nice talk with the radiologist about his outcomes, and only one patient ever felt worse after the procedure, and most felt better.

I wish I had a crystal ball!

Yes but it is frustrating.

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?

botox in scalenes
 

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? :Dunno:

[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

botox injections
 

[QUOTE=kellysf;792466] I agree Kelly, thats why I didnt like it being dismissed. I had a friend who had the heparin injection, with no success, but If I were you, I would give it a shot. We are all different, and react differently to treatements. Inflamation plays such a big part of tos, if that can get undercontrol, I think you will manage better. As long as the muscles remain in spasm, you will have inflamation, its all about finding that "one thing" that will bring them out of spasm.
What have you got to lose to try?

[QUOTE=tossucks;792536]My thinking has changed on "what have I got to lose." Over time I've tried things that have made me worse (PT, surgery, Deep Tissue Massage, to name a few) and I've done lots of things that have cost me money and had no impact (thyroid, acupuncture, etc, etc.). So I'm more cautious about trying new things. But I'm at a loss what to do otherwise, so I may try it because I have no other bright ideas.

Take care,
Kelly

How did you fare with this, just curious?