You~all are so much wiser and intellectual than I at this game with 7 years of TOS battle post surgery from 2003.

I am inking closer to getting the post surgical vascular surgeon consult through CA W/C since Collins report still shows a Subclavian Artery & Vein compression.

W/C wants me to go to Ahn.
I want to go to Denver.
I'll have the consult by Ahn but not surgery.

Can you guys help my poor ole chemo brain with 10 questions to ask on the consults weather it be Ahn, Annest, Filler, Bratigan or...??

This is what my brilliant TOS buddy deducted so far:
1. Filler and some of the studies say scalenectomies (?)/neuroplasties
but no rib removal
2. Annest says rib removal and no scalenectomies, he makes a "concerted effort not to resect the scalene muscles because I have found that with muscle resection there is an increased incidence of recurrent scar formation".
3. Ahn says rib removal and scalenectomies

"what's a girl to do"?
olecyn

Quote:
[This is what my brilliant TOS buddy deducted so far:
1. Filler and some of the studies say scalenectomies (?)/neuroplasties
but no rib removal
2. Annest says rib removal and no scalenectomies, he makes a "concerted effort not to resect the scalene muscles because I have found that with muscle resection there is an increased incidence of recurrent scar formation".
3. Ahn says rib removal and scalenectomies ]

Oh gosh what a disparity of choices??

I haven't needed any surgical consults at all so I really can only say maybe less is best??
Have they all seen you in person and all your films to come up with such diverse options??
maybe I read it wrong?? is that a general list of those drs and their preferred options?

I think if you go to Denver for surgery you have to have the consult with them also?? { I don't think they will do a surgery based on another drs consult??} Unless you need to get the consult w/ahn to get approved for Denver?
I hope the others will pop in soon with some thoughts for you.

If you are able to do a detailed list of all your TOS type symptoms we might be able to {maybe } sort out what we might think the problems are at {maybe } had to add a second maybe in there LOL

I had TOS surgery in 99 or 2000, can't remember the year but mine was on the right side by Dr. Sanders. When he did mine they had a product that could be used to help keep scar tissue down. They later recalled it because of the container it was in, I don't know if it is being used again but it might be something you might ask about if you have surgery.

On my left side, Dr. Sanders went in under my arm a few years ago to take out 3 inches of muscle to help with the chest pain. It helped quite a bit. I still have the chest pain as I have talked about on here before but not near as bad and it's calm until I do something to aggreviate it.

IF you have surgery you also might want to ask for a block to ward off RSD if you don't already have it and ask for the block if you do to keep the RSD from getting worse or coming back out if you have it in check.

The Drs. do surgery two different ways. Some go in under the arm and some like Dr. S. goes in at the neck to take out the rib. After seeing how big those scars are from under the arm, I am happy with my 2 inch scar at the neck/shoulder area.

Do a lot of research about Drs. and a lot about the surgery. A lot of us have had TOS surgery and each will have their own story to tell. I hope mine helps and I hope you do find the answers and the results you want.

Ada

do you have to make this decision so soon.
Will it be now or can itput off a year until you heal. To have more surgery on top of the chemo and run down body I would think will make it more difficult to heal.

I think the deciding factor in a scalenectomy and rib resection is up to the doctors finding in surgery. I do not think prior to surgery they can decide, no matte who is the doctor. Just from our own family, once surgeons got in there they found odd pathways, muscles that most modern men do not have, chest rib construction the impeded in a manner of how were they to proceed without causing more damage or compressions.

For a virgin surgery, the first plan should be less is better for my thoughts.
IN De's surgery, she ahd a first rib and scamenectomy. She developed massive adhisive fibrous bands entwined on the nerves.
Although there was Adcon-L a sugar carb substance that had been used for a time to deter scar matter. In the end, there was large debate, on the initial use in Back surgery did it really reduce. It is a natural chemical absorbed by the body.For a time there was a recall and halt on the use as testing should no improvment and it was not able to be attained by surgeons.

IF you have a problem with the vascular compression you may ahve what is tallked about by Dr Sanders where the vascular, subclaviavian passes through the scalense instead of under and then to under collar bone.

During De's surgery, she had short fibrous bands. Half of society has them although they never develope TOS. I think people with TOS have this pre-exsisting problem. The bands of scar matter that develope have to be freed from these and the cervical nerves.

Another thing Dr. T found in De's surgery. She immediatly had after her injury, a spasm in the neck like a charlie horse and from there it all spread. During surgery Dr. Togut found a fibrous band in her muscle tissue in the arm pit coming from the collar bone area. He snipped it lose. HE did not find it again until he got to the next step of the surgey to detach the first rib. Here he found the only 1 1/2 inch long band attached in the collar bone area......It had been caught in a spasm that far.

In the consult with Dr. Ahn, can he determine where the subclavian is? Can it possibly be out of place and coming from the center scalense?
I will search for this info and see if it is still on the forum archives somewhere where Dr sanders book talks about it.

Just a few thoughts for now.
Di

Laying under them traveling under the collar bone above the first rib is the subclavian artery on the left and front is the subclavian vein.
...............................................
Then the section discribes the positions in medical terms.

Scalene traingle
This area is bounded by the anterior scalene muscle anteriorly, the middle scalene muscle posteriorly, and the first rib to its base. Any one of these three structures can cause compression of the neurovascular bundle and the clinical picture of TOS.

Anterior scalene
The anterior scalene muscle has a constant site of origin from the third through the sixth vertebrea, but its point of insertion, generally on the scalene tubercle of its instertion on the first rib, can vary.
The insertion of the tubercle is between the subclavian artery and vein, with the expansion of the plural dome. Variants include insertion behind the artery and brachial plexus, or an extended area of insertion behind the artery, between the artery and brachial plexus, or extended area of insertion that includes the entire base of the scalene triangle.

The latter variant may result in the anterior and middle scalene muscles forming a vise around the neurovascular bundle. The insertion of the anterior scalene muscle merges with the middle scalene muscle in 20% of individules. In half of all individules, the insertions are overlapping the first rib, while the other half of all individules they are joined in a common insrtion.


Deep into the anterior scalene muscle lie the subclavian artery and nerve trunks of the brachial plexus. Usually the nerves pass through a slit formed by the anterior and middle scalene muscles. IN some cases, howevere, the fifth and sixth cervical roots actually pass between bundles of the anterior scalene muscle rather than the hiatus between the anterior and middle scalene muscles. In one study this variant was seen in 45% of cadavers and 21% of TOS patients.

Middle scalene muscle
The middle scalene muscle originates from the transverse process of the second through the seventh vertebrae and inserts on the superior aspect of the first rib at "CHassaignac's Retroarterial tubercle." This insertion is broader and more posterior thatn that of the anterior scalense muscle. The middle scalene mucle may also have an expansion that inserts on the fibrous septum of the pleural dome.

Lateral fibrers of the middle scalene decend past the first rib to insert on the second rib. Insertion of the middle scalene muscle in a more forward or anterior position can cause copression of the middle trunks of the brachial plexus by contact with the sharp, anterior edge of the muscle. In a cadaver study published in 1948, the most frequently encountered anatomy was that of the lower trunk of the brachial plexus resting on the anterolaterial margin of the middle scalene muscle.

Fibromuscular bands along this border of the muscle may be one of the pathology mechanisms for TOS in the absence of a cervical rib. Among 33 patients treated for TOS by Thomas et al., middle scalene muscle abnormalities were observed in 58%.
__________________

I don't know anything first hand...but didn't shelly say that Dr filler's imaging procedure could see the nerve pathway?

and I'll stand by the reccomendation I made yesterday- which is maybe you'd want to try Botox with Dr Jordan before surgery.

I went to see him again today, and we're doing round two in 2 weeks. He said round 1 he didn't use a high enough dose which is why I had two good weeks followed by 4 mediocre weeks and this past weeks things are practically back to where they were in the beginning.

just a thought, of course if this is a redo and you are battling scar tissue maybe it is irrelevant.

Johanna

I have to agree with Jo and Di.. In my opinion less is best in the beginning.. We never know what the future holds..

My TOS was Neurogenic and Vascular. I had the scalenectomy. A Section of the Anterior and Middle Scalene muscles and neuroplasty of the brachial plexus, long thoracic nerve, ulnar and axillary nerve's. I had a supraclavicular approach and Transaxillary approach. It will be a year ago on the 23rd of this month.
I will be going back into the OR with Dr Filler to have redeveloping adhesions removed from my first TOS surgery on the 24th.
I have heard of other scaleneectomys as well as rib resections redeveloping adhesions down the road.

There have been other members on the board that have had sever vascular and arterial TOS etc. and have had surgery very similar to mine and didn't have a rib resection and are doing well to this date.. But then everyones situation is differant and requires differant interventions..
I'm sure you and your Dr will make the right decision for you when your surgery date nears.

Do you have Dr Sander's Book- Thoracic Outlet Syndrome "A Common Sequela of Neck Injuries” It is a great book, A little pricey.. I believe I paid $80.00 plus postage for it.. I ordered it from his office and it arrive a day or two later.. It will answer so many of your questions..

I wish you the best of luck. What ever your decision is I pray that you have a positive outcome and an uneventful recovery..

Keep us posted..

((Many Gentle Hugs))
Dawn

So full of info...
So gratful to all of you!!

I'm in a place of not knowing if I want surgery again and by whom.
Had Bilateral Brachial Plexus & Right Ulnar Nerve Decompression 8/2003.
The court ordered doc says a consult with Ahn & poss a nerve conuctor put in 2 years ago.
Nothing by the defense (ins co) has been done because their MRI 6 months ago didn't show anything and they are blaming it on my congenital defect and heart surgery when I was 10.
Geeze...

I so agree that LESS IS BEST!
Especially after all my surgeries the last 3 years and the CA surgeries.
You never know what can happen during surgery and there are no gauarantees the TOS will get better, right?
Then there are chances of scar tissue build up.
More surgeries and so on and so on.

YIKES...
Anyways, you guys are FAB
Time to get myself off of this sitting and keyboarding.
XXOO
olecyn

But how do we live with this?
Live with it and be on drugs the rest of my life?
I don't want to ever rule out a future surgery as technology progressses.
And sure don't want a clot to form and go to my lungs after all my battling for life and TOS medical attention.

Can I add just a few more thoughts??

I had the surgery done with Dr.Schneider going in with the idea of doing/removing as little as possible. He ended up taking the rib as well as the 1st and 2nd scalenes; the rib because he wasn't able to get the amount of space he wanted (my subclavien was compressed also) and both scalenes as the nerves were so intertwined that he was unable to save them.

I am glad that I chose to have the surgery, because I was in so much pain, I didn't think I could go on living that way. I still have severe limitations, but the pain at least is managable.

If I were able to take the pain, I think I would have waited, hoping for a new, less invasive, surgical technique, or hopefully something that didn't require surgery at all.

Since my surgery I met someone at Kaiser (by chance!! I couldn't believe it!) who developed a clot in her arm from her TOS and had it dissolved in the hospital; she still had not had surgery. She was holding out as long as she could.

The other thought I have is what is the likelihood of you getting RSD/CRPS on top of everything else after all of your surgeries?

And I do think Di is right about trying to allow your body to have time to heal after all that it has been through, at least for as long as you can before you tackle something else so major.

Has anyone suggested a long term daily p.t. program like Peter Edglow's or Sharon Butler's that focus on gentle stretches and treatments that open the passageway and hopefully can relieve the compression that way? Dr. Ellis had me do Edglow's program for 6 mos. (Edglow asks you to commit to a year to a year and a half) to see if I could get some more space that way to avoid surgery. I made some progress, but not enough. I didn't feel like I could take the swelling tightness and pain any longer.

Anyway, I hope that you are doing better now that some of your other difficult health concerns are behind you.

Take Care,
G ~

YES...EDGELOW Protocol has saved me the last several years.
If I had NOT gone to him...I'd be 6 ft under.

I spent a few years in PT, mostly just massage and very gentle stretching of my arms and myofasial release. What I figured out after that is that I couldn't get around surgery.

I am not sorry at all I had it done. I did fall again really hard and caused a few problems with my hand. I no longer have the tingling and numbness and the pain that came with the TOS. My fingers are spasming up now and Jo says that is from the TOS. The surgery to me was one of the hardest ones to heal from. I can remember sleeping in a recliner for almost a year and using tens units, heating pads and anything else I could think of. You probably remember a lot of that from your surgery.

I took pictures of my fingers to show them to my hand surgeon to make sure that is what it is coming from but I have thought that.

As far as the Adcon L, I don't know as they use it anymore but I do think it saved me from having scar tissue build up. I don't know if it's an option anymore.

I think you have to see if you can get by without going through the surgery again. I never did the Peter Edgelow program but I had some good Pt'ers that learned in Holland and they didn't believe in lifting weights they were more prone to gentler things.

It really is a hard call. I think what it amounts to is when you get to the point to where YOU feel you have no choice in having the surgery then make that decision and don't look back. Also donot forget about the RSD worries and ask for blocks if you do go that route.

You've been through a lot already. What I did is waited until I got my strength built back up to have my TOS surgery. I had been through a lot prior to the TOS surgery also so I waited until I knew I could handle it and it was still the hardest surgery I have been through.

Good luck on your decision and do check out several Drs. before you make that call.

Ada