Would love to hear from anyone with true vascular TOS who has had rib resection surgery to help me know what to expect.

Was diagnosed with vascular TOS several months ago. It has progressively and steadily become worse. Nerve pain is adequately controlled with Baclofen, but blood flow continues to be a problem. Have several venous collaterals formed (and more popping up all the time) from wrist, over shoulder, and across chest. Have no radial or brachial pulse from 90 degrees on up (and in some other constrictive positions - like pulled in against my chest).

Would do everything possible to avoid surgery, but doc feels a blood clot will soon be imminent. At last checkup, bilateral BP's showed 150/104 on right and 128/88 on left (more affected side). After cuff was removed from left, wrist and hand turned dark purple for 2+ minutes with venous distention all the way through tips of fingers. He is afraid that next time, blood flow may not restore on its own.

Not to minimize neurogenic TOS in the slightest, but if you've been diagnosed with vascular TOS (arterial, venous, or both) and have had the surgery, I'd love to hear your pre-op, peri-op, and post-op story. Nervous as heck and don't know what exactly to expect because this type of TOS is rare and not well documented.

Thank you so much!

Fellow TOS'er, Carrie

I didn't have surgery but I have both vascular and neuro, bilaterally too. It's no fun.

Please get a second opinion. You just need another eye on you before surgery. Research your doctor, hospital, and PT care. Be your own advocate, and a family member when you're not able will need to be watching over you.

My prayers are with you.

I totally agree and would tell anybody else facing this condition and situation the same advice. But, in my case . . .

This is my 7th opinion (phew! - and that's taken almost a year). I've talked to Dr. Sanders, had all my imaging and tests (including xray, CT, MRI, angio and ultrasound), seen an internist, vascular and thoracic specialists/surgeons, a cardiologist (b/c I have tachycardia and transient hypertension also, supposedly as a result of the TOS causing a small aneurysm of the subclavian artery at the brachial plexus), a neurologist, and now the 30-year cardiovascular surgeon with several hundred of these surgeries under his belt (of course, usually for neurogenic TOS).

I've done 3 1/2 months of PT with zero-relief and change. I'm going on 11 months of research and trying to avoid having surgery. This is a drastic measure that I don't take lightly. There is no way I would subject myself to such debilitation (even if only temporary) and likely life-changing surgery without serious consideration.

If I was dealing with the neuralgia only, I would certainly be adamantly looking for other ways to deal with the pain, trying other medications, and looking here on this forum for all of the great ideas for pain relief, etc. But that is the least of my worries with an arterial aneurysm forming, tachycardia, hypertension, mild chest pain, venous congestion, and my hand turning dark purple after taking BP.

The surgeon said I don't have to do the surgery now, but I will have to do the surgery. He said it's elective until the day they take my BP and my arm does not return to a normal color due to a blood clot and then I'm rushed in for emergency surgery to try and save my hand and/or arm. And that's if I'm lucky enough to have the clot in my hand/arm, and not on it's way to my brain.

All of this considered, I am opting for the surgery. I am 38, have a husband and 5 children, and choose not to mess around with blood clots and the risk of stroke. Doc says he can't even give a decent prognosis until he's in there. He plans to do the rib resection and scalenectomy, remove any scar tissue, and repair the subclavian artery and any other damaged vessels with stents, etc.

Unfortunately, I don't know anybody with these same vascular issues who has had the surgery and can offer their insight about how their procedure went, and some idea of what I can expect post-op (like time in hospital, initial and long-term recovery at home, success of outcome, etc.). I understand that every situation is completely unique, but just trying to get at least a vague idea.

Thank you so much for your input - and any further input too! I'm so thankful for this forum!

Carrie

Sometimes you just have to bite the bullett and do it.

I'm sure there are success stories. I'm sure of that. I just don't feel I would have been better off for it. Had I got to the right surgeon first -- Dr. Atasoy in Louisville, then there's a high possibility I'd laid down right there.

I asked to have it done bilaterally and the first surgeon said, "Are you out of your mind? Woman, you have to take care of yourself." ----- 1st surgeon did not recognize or include my scalenes in his diagnosis so it would have been unsuccessful... I'm sure of that too.

And, of late, here on this forum, I realize I have pectorialis major and minor issues. So, guess what? If I'd agreed and went ahead in 2004 or 05, it would have been a failed surgery too. So they're getting better at it. I'm sure they don't like these outcomes any better than we do... well, they're not living in it every day, 24/7.

I have read success stories. I have read about relapses. but in your case, sounds life-threatening. If that issue goes away, then you can deal with what comes later.

You surgeon's office should have a lot of after care info for you to read over. Maybe now is a good time to ask for their instructions. You can do a lot of preplanning, making lists and even practicing the many tasks of taking care of a postop family member.

It's scary, I know. I would be anxious about everything but sometimes you just got to do.

I pray you recover Godspeed.

Here's an old thread with some articles from pub med about post surgery results.
http://neurotalk.psychcentral.com/sh...ad.php?t=17275

I think a planned surgery would be much better than a possibility of rushed ER visit & emergency surgery. plus not being prepared for the post op recuperation time.

I have both neuro and vascular myself and empathize with what you are going through.

I don't have the level of collaterals that you do though which makes me think you are closer to needing surgery. I have been able to put off my surgery as I developed some other conditions I needed immediate surgery for and as a result of time and PT I have been able to get some relief of my serious vascular symptoms. I will have the surgery, like you, when I get to the point that I must. I want to avoid clotting of course and having to make due with increasing symptoms compromising my life even further.

I too went to several surgeons and although I haven't seen Dr. Annest in person, I really liked all the information he provided to me over the phone and his proposed method of surgery. He did go over my Venogram, ultrasounds, and results of my 3D MRI/MRA/MRV with me over the phone after I mailed him my stuff. I think I would choose him for a surgeon if/when it becomes necessary.

I also have the pec minor problem and when I looked around only Dr. Sanders was offering this surgery. Long story... but basically when I went to Denver to meet Dr. Sanders, he asked me to have surgery locally instead of travelling to him as he felt my symptoms from my neck pain and prior neck surgery would make me a poor candidate for travelling. The local surgeon was just getting into doing the pec-minor surgery so I decided to wait until he had more experience. However, after doing a handful, he decided not to offer that surgery and I didn't like the idea of doing one surgery with him and then going back to Dr. Sanders for the pec-minor part. And that of course is 2 surgeries per side.

At any rate, now I have moved. There is a local surgeon who has a LOT of surgeries over many decades for TOS under his belt. However I would NOT choose him as his approach is what I am told "decades old". He is popular and well respected here. I offer this info just to remind you to make a choice that will truly support you for the best outcome.

you can PM me if you'd like.

best,
fern

That said, I have had relief of some level of symptoms when I got a long course of PT. It sounds odd, but the wmn does lymph drainage along with cranial sacral and myofascial. I have had many many courses of PT over the years and this was truly the right thing at the right time.

Carrie, a few more things. Dr. Annest said that a clot from this goes to the lung rather than the brain and is usually not fatal. I'd get in touch with him if you are able. Also I don't think this type of TOS is as rare anymore. And there's been a lot of publicity-several athletes have developed vascular TOS and have recovered and gone back to work. I've had a long, long history of RSI, cervical problems w/neck surgery and then the development of bilateral neuro & vascular TOS. The likelihood of dramatic pain relief from surgery is lower for me than for someone who gets vascular TOS and has surgery sooner. There have been several people on this board who have had surgery for vascular TOS. They may not be visiting the board now so I would recommend searching the threads for their surgery and post stories.

Hi Carrie

I think we made contact ages ago when you were first given a possible diagnosis of TOS - sounds like you've now slowly made your way through the system.

I'm now almost exactly 8 months down the line after first rib resection. I had both vascular and neurogenic TOS but the main indication for surgery was the vascular problem, no pulse, collaterals etc especially as I also had something called subclavian steal too which meant that when I turned my head to the right I cut off most of the blood supply to my head and fell over or got dizzy. I also have a family friend who had vascular TOS with a subclavian artery aneurysm who had similar surgery with repair of the subclavian artery so I guess I have two experiences to go on.

For her, she only had vascular symptoms and made a very fast recovery from her rib resection and all her symptoms went away. It's definitely true that if you have either other medical problems (like many people on this forum are unlucky enough to have) or neurogenic symptoms pre-op, then recovery is much harder.

All my vascular symptoms went away almost immediately and my repeat angiogram showed a really good result. Pre-op I had a clawed hand with no sensation and within less than 48 hours (when the neurologist turned up with colleagues to show off my weird neurology), I already had most of my power and sensation back. The rest however is taking longer - and don't underestimate how shattered you will be post op and how long it can take to recover. My neurologist tells me you have to wait till 18 months till you know whether you have any permanent loss of function and as my nerves were compressed for a long time pre-op, I'm trying to be patient.

However, I'm now back at work full time and have just returned from a cycling holiday - this time last year, I was still just at work but on a cocktail of so many meds and able to do virtually nothing. It is a hard choice to make to have such major surgery but sounds like that your decision is going to be made for you pretty soon if your symptoms get worse and this is definitely the kind of procedure I would want to have done electively rather than in an emergency situation....


Good luck whatever you decide

jenny

I have severe bilateral neurogenic and vasogenic Thoracic Outlet Syndrome as a result of a car accident in 2004. In 2005, I had a rib resection and scalenectomy on the left side. Six months later the blood flow was cut off again on the left side. The surgery didn't work the first time for me. I have been progressively getting worse through the years. Last week's vascular study showed that I flatlined the vascular test on both arms. The pain is very severe in the left arm even at rest. The right arm only has pain when I move it from the rest position. I cannot reach for things. My left is weaker then the right even though both show an equal flatlined study.

I am going in again tomorrow, May 11th, (4 years after first surgery) to have a TOS revision surgery on the left side. Dr. Karas is going in again to try to free up the scar tissue and allow the blood to flow. If this second surgery works, then I will go in and have the rib resection/scalenectomy done on the right side in the future.

The first surgery took me a very long time to recover from but it's because I'm battling possible MS that recovery time took longer. I am going in for evaluation of MS in June.

The good news is....my daughter was injured as well in the same accident in 2004. We waited (perhaps too long) until we were ultra sure she wanted to go through surgery. My daughter went through the rib resection/scalenectomy of the right side in December of 2008 then went back in March 2009 to have the left side done. She had both neurogenic/vasogenic TOS. Both of her surgeries were a success and she was up, back to work, and off pain pills in a week's time. She has had no signs of pain or issues coming back since surgery. She is 18. So maybe age and lack of other medical issues has to do with quick recovery and success.

Dr. Karas is our doctor and is VERY VERY good. If anyone needs a surgeon on the east coast who has done many surgeries and has had high success rate, try Dr. Karas. He's caring, compassionate and takes his time to make sure that you understand what's going on with you.

It all depends on your health going into surgery as to your recovery time. Some people recover in a week or two and go back to work, and others take several months. No one person is the same.

I wish you luck as you decide what you need to do. Like I said, I'm going in tomorrow for the 2nd surgery on the same side but my scar tissue is like fiberglass and very aggressive. I may have to go back in again or may not. I just know that I've got no quality of life right now so if I can get some relief for a little while, then I'm gonna do it.

Stay away from Botox. It's poison and many doctors including mine are against it. I went for a 2nd opinion a few years ago and they wanted to shoot me full of botox. They said it was still in a trial basis and that they could only shoot me with botox 4 times and then damage would start to occur. This was over at Johns Hopkins. I would strongly hesitate and research before dealing with botox. It is highly controversial at this stage.

Good luck!

Bless your heart.

Keep us posted when you can.

Carrie,

I haven't had surgery for vascular TOS but know of three people who have had it for vascular TOS. They all developed blood clots, ended up in the ICU until the blood clots dissolved and then had surgery. They were all able to return to their jobs. One even had a 9 inch blood clot. I think the outcome depends on the extent of damage and how long the problems have existed.

I have had TOS surgery on my right side for neurogenic and vascular TOS caused by a car accident - one time injury. The TOS surgery restored use of my hand and the shoulder surgery restored my ability to carry any weight in that arm. I'm putting the right arm/shoulder/TOS region through the test right now as I tore my labrum (SLAP lession) in my left shoulder last summer and had surgery three days ago. I have had doppler studies done on a stat basis several times since last summer due to concern over blood clots. So, I do have vascular TOS on the left side that they are monitoring.