Vascular TOS
 

Hello Everyone, I was diagnosed with TOS about 5-6years ago. I underwent so many tests, a year of physical therapy, and am now about to have surgery. I have been hitting the web for the last year and am not finding out hardly anything, this site has been a great help. I want to detail what is going on and hope someone has some feedback for me.

I have been told that the problem is that when my arms (both) are at a 90 degree angle or certain other positions the artery that feeds each arm is pinched off. I have gotten used to the numbness and not being able to do certain things, but now it is affecting my daily life, so surgery seems like the next step.

The doctor here in South Dakota has performed this operation many times and assures me there will be no complications except that my pec or chest area will be numb, also that it might not fix it, but it wont make anything worse.

I have decided to do only one arm for now, my left as I am right handed. My worry it that there will be problems, and since I work in IT I need my hands and arms, and as vain as it sounds I cant find out anything about that scar, I was told it would be above my collar bone, and not too large.

Can anyone talk to me about this, the worst thing in my medical past is a couple broken bones, this freaking me out.

hi, and welcome. Sorry to meet you under these circumstances.

my question would be, are you having a first rib resection with scalenectomy or just a scalenectomy? Also, is your scalenectomy partial or complete? These are all veriations on a similar surgery, but may affect your outcome.

if your scar is going to be at the collar bone, you will be having a supraclavicular approach. So anything you read about an transaxillary approach is for a similar surgery with a different apporach, coming in from under the armpit.

I had a transaxillary approach 1st rib resections on both sides over the past 4 months and am happy to report i am doing well.

please fill us in on more details and we will be happy to answer your questions to the best of our ability!

again, welcome

Johanna

Does Dr say what he believes is possibly pinching the artery in your case? anything specific?
extra cervical rib, scalenes, ligaments, or large bands, etc.

There are special MRIs {3D?} that can be done to get more specific details
info- http://rsirescue.com/articles/collins.htm

What is your avg daily pain level?

Oh what were the broken bones you had or where? collarbone?

Have you found our useful sticky thread- tons of medical links and info-
http://neurotalk.psychcentral.com/showthread.php?t=84
also we have a Drs & PT listing -
http://neurotalk.psychcentral.com/showthread.php?t=135

To be honest I am not sure of what is all going to happen, I know that I do not have an extra rib, they figured that out a few years ago. I know that the doctor has said he can only tell me so much. and will have a better idea when he gets in there and sees what is going on.

I believe he is going to remove some of a rib and muscle tissue.

As far as pain, honestly it int much at all, my main problem is numbness, tingling, loss of function. Its not that it doesnt "hurt" its just kind of a different feeling, mornings there is some pain.

Thank you for talking with me about this.

Jetjr
 

I have Vascular, Arterial AND Neurological TOS
Caused by cummulative trama using the compooper, working 15 hour days/7 days a week at times for a year on an unergonomic workstation.
SURGERY PERFORMED ON ME IN 2003 bilateral costaclavicular decompression, ulnar nerve & scalenectomy resection.
NO rib removal.
And yes the incision sites r about 2" long above the clavical in the crease of my neck.
The circulation is better.
Am I glad I did the surgery?
Heck ya man.
Am I better or perfect?
It is ALL dependant on the severity of your condition & how you as an individual reacts and recovers.

Your surgeon may or may not know how important recovery and PT, hynotherapy, psychotherapy, etc... is
Whatever helps YOU.
Use every means available to YOU.
ITS soooo very important to keep your circulation flowing.
As I still use every tool available to me to reduce the pain, swelling, etc...
Cardio is vital for chronic pain patients with circulatory conditions.

As for returning to IT work.
Like I said its independant.
Personally, I can no longer perform my HR and budget career.
Doesnt mean YOU wont go back
Just listen to YOUR body
Take breaks, do YOUR exercises and use heat or cold packs whatever works for YOU.
Peter Edgelow's protocol saved me and years later Ithey are a part of my life.

We r here on the forum sharing our challenges, disabilities & frustrations.
We suffer from reactive life changes.
We r also heer to try and share with others our experiences and knowledge
And becasue only WE do WE understand what a day in the life is for US.
Tell us type A personality's we CANNOT do something and we freak and we also live & work through the pain.
Its unacceptable for us to do nothing as we are doers fighting and challenging each and every doc and turn in our lives.

O NO...this sounds pathetic doesnt it?
Ok now, remember what I said.
We here are the patients who cannot get enough help
Think about ALL the other patients NOT here who are just fine and dandy.

YOU WILL HAVE AN INCREDIBLE SUCCESSFUL SURGERY!!

Risks- besides the general risks associated with any surgery-

There is a risk of excess scar tissue developing in the area after these surgeries. Which can further impinge on the structures over time.
Some patients develop this and some do not. I don't think there is any way to predict this - unless you had other surgeries and developed excess scar tissue then.

Reading on the forum here you may notice that some have RSD with their TOS - some have it before surgery and some got it after a surgery {any surgery or even a minor injury can set off RSD- no specific cause or reason proved yet}

I feel these are things to be aware of and I wouldn't feel right if I didn't mention it.

We usually suggest getting at least one other surgical opinion and getting the best and most experienced surgeon that you can find.

I 2nd jo55's suggestion of getting a 2nd opinion. Even if you cannot travel to one of the experts you could at least send all of your myriad of test results to an expert and see if you can get a review of your tests. But it is best of course if you could travel to see an expert TOS surgeon.

And Olecyn's statement that she had vascular & arterial compression and DID NOT need her rib removed is worth investigating. If there is a way to achieve success w/o removing the rib it is well worth finding out if this may be an effective solution for those of us with arterial and/or vascular compression!

Hi,

Sorry you are having vascular problems. I had vascular TOS too and got immediate relief after having surgery with Doctor Brantigan in Denver. He's one of the top vascular docs in the nation. You can read his many patient testimonials many from young people dealing with TOS and how he's helped them. Some are bikers and ball players.

In my opinion he's the best to see for vascular surgery TOS.

I think his site is : www.drbrantigan.com

His office can help you get there and with insurance. Often he gets insurance compaines to go out of network with him because he has such a high success rate and rated one of the top vascular docs.

I wish you better days.

no rib removal = 55% success rate, somewaht less traumatic surgery

rib removal = 70% success rate, slightly more traumatic surgery

roughly speaking, assuming a competant surgeon, and quoting my neurologist, here, who is a TOS expert, and NOT a surgeon...just sees a lot of people pre and post op.

good luck, and yes, second opinion= good idea!!! for any major medical procedure, as long as it comes from a competant TOS doc.

:)

rib removal
 

Thank you Jokat for your info. I know that you did a tremendous amount of research to determine your own surgical choices and we are benefiting by your investigations. But I am confused as I was told, especially by Dr Sanders, that the surgery w. rib removal is a MUCH bigger surgery and that it involves MUCH more drastic recovery. I thought that it was the reason to try to avoid rib removal if a smaller surgery would be successful. But if it's only slightly more traumatic than I guess there is not much reason to try to avoid it. hmmm.

Here's what I used to post all of the time:

I don't think any of my tests came up abnormal except the scalene block was positive for taking away the pain - and the high, high pain was the primary symptom - and, blood tests, obvious color changes on arm skin, loss of use of the hand / arm, temp changes, and where I pointed out the pain locations copied known TOS patterns, and differing blood pressure from one arm to the other. So the docs put all of those facts together, with the absence of any other known diseases, and concluded neurogenic TOS.

TOS is a diagnosis when ALL other testing does not show an obvious orthopedic or other reason for all of your symptoms. You may test normal to ALL of these tests but still have neurogenic TOS. (Vascular TOS alone is only about 5% of all TOS cases, and it is seen by the abnormal vein imaging.) TOS is a diagnosis when you have ruled out all other problems, because if you do not do the foundational TOS tests to rule these out, then you might have missed an obvious tumor, etc., which could be life-threatening. Yet it does not mean that TOS is merely what you call it when you are done with testing. Testing is extremely important. Normal results in all, can still conclude TOS, if the proper symptoms are present as a whole. There is no single, one-shot test for TOS. You can't usually "see" it.

I am not a doctor, and this description of tests is just "laymens' terms."

1. You should have ruled out any rheumatological or immunological conditions by seeing a rheumatologist and having these blood tests run. Sometimes they will run a brain MRI to rule out MS or other copycat conditions.

2. Neuro / ortho / vascular doctors do MRIs of the neck, brachial plexus, shoulder, hand, etc., looking for any obstruction or strucural abnormality. These MRIs can be run with fluid, and may or may not have your arms in differing positions. Mostly, these are for finding any arterial or vein blockages.

3. Xrays are also ordered of the spine, usually in the beginning, and a few TOSers will have additional cervical ribs, but many do not. "Extra cervical ribs" or "protruding cervical ribs", etc., are the terms to listen for.

4. Neuro docs do EMGs and nerve testing, including SSEPs, each one believing that only their way is the right way. Usually, it is not always going to show anything. You want to ask if they test up by the neck for the C-8, because if this is slow, the C-8, it tends to show TOS rather than cervical radiculopathy.

5. Doppler tests are like sonograms of the arm to see if there are any blockages of blood flow. You can have neurogenic TOS and still have vascular / circulation type symptoms, but these may not show up on this test. Blockages must be treated usually by surgeries, ASAP.

6. MRAs or MRIs with fluid involves cut-downs along the arm to track blood flow, as you sit or stand. In my case, my nerves were wrapped around my double veins, so we were unable to cut-down all the way up.

7. 3d MRAs (or is it MRIs? I always get this one wrong.) By Dr. Collins shows different angles of the brachial plexus at such a high resolution that doctor is able to "see" compressions, impingements, etc. However, most of us do not get this luxury. (I think the cost is $7,500 right now?)

8. Scalene block - if you feel relief for a brief period of time, this is positive for surgery.

9. Thyroid issues - many TOSers are hypothyroid. Some show up easily on a blood test. Others, are not shown on a blood test. Some are called "Hashimoto's thyroid" such as mine. Mine were based upon symptoms, rather than numbers on a blood test. They incuded: dry hair, or slow growing hair, depression with no real situation or depression that has gone on a long time, nails that don't grow or are brittle, dry or flakey skin, sleeping 10 or 12 hours or a whole weekend like I was and still tired, not being able to sleep at night, tired when forced to wake up, (once I started the thyroid, I slept from 11 AM to 7 AM without problem), slow bowels, like not moving for a week, (not really weight gain or weight loss, though, this wasn't about being fat, but about not good body metabolism.) So anyways, this is a subject for you and your doc.

If all of these tests come out basically normal, this leads to discussion of TOS as the culprit. It is especially hard to tell the difference between cervical ortho causes and TOS, and sometimes shoulder and TOS. But you must go through time-consuming testing to find out all of the results, because if you simply proceed with an ortho surgery, your TOS pain can go through the roof and you can have unexpected complications, so it's rather serious to proceed now with great caution, whereas the work comp ortho surgeons love to "cut and run!"

We have a ton of articles post on the upper left hand corner.

We also have listed some of our docs we have seen, on the upper left hand corner. In my opinion, most doctors ho say they know TOS can NOT diagnose TOS, and I went through over 10 orthos / neuros / vascular surgeons who did not diagnose me, and it wasn't until I flew to Denver and saw Dr. Annest that I got a diagnosis, and then most of these docs said "oh, that's what I thought, too, but didn't want to be the one to make the diagnosis."

Pain control is another big fight.

Be very wary of chiropractors who say they can "cure" TOS. Do NOT do any physical therapy or treatment that hurts you, or tries to strengthen you. TOSers (for the most part) cannot do strengthening exercises, cuz that causes swelling, which is already a problem.

The best physical therapy that I know of is the "Edgelow" system, he is listed in our doctors list in Berkeley CA. Many P/Ts do his system. You can get it via mail, too.

Try to figure out how you got TOS, if you do get diagnosed. Were you in an accident to the collar bone area? Or, were you doing a job that had a lot of repetitive hand / arm movements over an extended period of time? IF you can't say why you got TOS and you're working, presume it caused the TOS, and make sure to get an attorney consult and proceed with a claim. Do not wait, no doctor will take care of this aspect for you. The onus is on you to pursue your work comp benefits, which, sometimes TOS is 100% disabling condition.

Any surgeon who does TOS surgey sees occasional complications, no matter how good or how experienced. Rare but possible risks include phrenic nerve damage or injury to the plexus due to physician error or arm positioning during surgery causing stretch injury to nerve(s). Failure to take enough of the rib, allowing the rib to re-grow and insert the cut surgical end into the plexus accounts for the need for many re-operations. These are some of the reasons we urge everyone to seek out an expert at TOS surgery, one who does these on a weekly basis, and to ask about their success rate and complications - individual surgeons rates vary widely (as does their training!).

More common complications include respiratory problems post-op (pneumonia, collapsed lung). In a rib resection the surgeon is working in a very confined space near the top of the lung. It is easy to nick the pleura, the sac surrounding the lung, If this happens, the lung is deflated until surgery is finished, a drain is often inserted, and the opening repaired. Some surgeons prefer to routinely deflate the lung before surgery so as not to worry about injuring it. Chest xrays, oxygen via nasal tube and breathing apparatus are used to monitor lung status and breathing for the next 2-3 days. Some patients' system's have a much harder time rebounding from this.

There are a small but not insignificant number of TOSers who do have worse pain after surgery - and RSD is also possible, as it is from any surgery.

I have had surgery with a great surgeon, it improved my condition and I'm glad I had it. My point is NOT to scare you by any means - but I don't feel your Dr is playing straight with you, and that concerns me. His statements just aren't accurate. Complications HAPPEN. You COULD (but likely won't) get worse.

I don't know how you deal with serious things, or your Dr's thought process, but this surgery is not a walk-in-the-park for either of you. Its pretty important in terms of your future. I wanted my surgeon to lay out ALL the cards so I could be fully informed and mentally prepared. I also went to a Dr who does the surgery several times a week and has a gret reputation in the TOS field, Dr Steve Annest in Denver. He does outpatient clinics in OK and KS as well.

Can you tell us who your Dr is and where he is located? Is he with a university hospital?

Glad you found us - and best wishes on your surgery!!

beth :)

yes- I WAS quoting my neurologist when stating my numbers. I believe they are also published in at least one, if not more UCLA papers.

If your surgeon has not published papers, he can give you his opinion of his success rate, but his data collection and counting methods have not been peer reviewed like they would be if published in a medical journal.

I personally have only had a rib resection, so i do not know for sure how the recovery difference is for a scalenectomy alone. I know that Dr Filler, who does a scalenectomy, said i'd be better in two weeks, and that my surgeon said i'd feel pretty good in 4 weeks.

My surgeon also told me that in 25% of his cases, a year-ish later he has to come back in with a supraclavicular approach to remove the portion of scalene muscle that gets left behind in the transaxillary rib resection. When we talked about that, he also said that thought it seems like it should be an easier surgery, generally people still feel pretty lousy afterwards, it is not terribly different.

Maybe this is also because my surgeon only does scalenecomy's as a second operation on people who have already had rib resections?

All I can share with you is what doctors have told me...but that's what they told me :)

My recovery from a rib resection was not really all that bad, I spent one week feeling really lousy, took about 2 weeks before i could drive, and at 4 weeks was definitely feeling as well as i had before surgery.

I am also out on long term disability with no huge hurry to get back to work, just taking my time and getting stronger so that when I do go back i know it will be the right thing and I am not causing more injury to myself.

hope some of this is helpful

Johanna

Footnote...see my PUMA paw ?
 

It wasnt that I DIDNT need my ribs out
It was the surgeons recommendation stating that its less invasive and if I can get better by not removing them I'm better off.
Now that was HIS statement.
I knew nothing better
Just wanted the intense pain gone and get back to work.
And I DO NOT see him any longer as he released me after a year.

I didn't even find the fine folks here and started researching until months after my surgery and the symptoms returned very rapidly.
I was scared ishless.
If ya know what I mean.

Yep, get a second opinion
Especially if you don't know exactly what the surgeon is going to perform.
Ask question, and ask more.

My doctor is Dr. Greg Schultz in Sioux Falls, SD. Here is a link to his bio http://www.sanfordhealth.org/Physici...hysicianId=940.

He assures me that he has done this many times with great success and no complications. I have seen multiple doctors who have all stated that the surgery is the only way to help my symptoms.

I saw the same TOS surgeon as Melissa and he told me I'd have a 98% chance of success. Just hearing that was a big red flag to me. JetJR-I would still recommend asking for the names of a few patients that have undergone the same procedure with your local surgeon. I also think that success to a surgeon can be determined in multiple ways. If the surgery is completed as intended it may be considered a success even if the patient doesn't feel better after a year. It makes me wonder if we can ask for specific terms in requesting a surgeons success rate.

From looking at the Dr's site, he does peripheral vascular surgery - nowhere is TOS mentioned. I tend to think he may just be going in to clean out the artery and put in a stent, something of that nature. THAT would make sense with the statements of "done it many times, no complications, no risk, etc.", although we all know there is SOME risk (i.e., infection, bleeding) with any surgery. If this is the case, then I am much reassured.

I would want to KNOW if he plans to remove the rib or not - HUGELY different procedure and recovery. And if he does intend a rib resection, my warning stands - he's not being upfront about the real risks and possible complications of the operation. But that may not be the surgery he plans to do. Can you contact him and ask for clarification? Might clear things up all around, but most importantly for YOU! ;)

beth

i looked at the website too and see that the dr studied in MN, probably w/the surgeon that Melissa and i have seen. i didn't see where it says he does only peripheral vascular surgery but his promise of no risk would certainly go along w/the MN surgeon reporting a 98% success rate. yeah right

JetJr,

First, its okay to be freaked out! Surgerys suck! Im concerned that your Dr. says that there are few risks involved. It is a pretty major surgery and even small surgerys have risks and possible complications.

Second (to answer some of your questions) If indeed you are going to have rib resection surgery, as I did, you will have a scar about 3-4 inches long. Mine is below my collar bone. Im going to be honest with you here, its pretty ugly! My son calls it the 'badge of honor', I think it looks like I was in a knife fight - and lost! The scar is only 5 months old, so maybe with time it will heal more and look a little better.

Lastly, if you can, you should try to get a second opinion. The more knowledge you have the better. Hang in there - Im sure it will all work out!

Beth,

You stated earlier in this thread that Dr. Annest does outpatient clinics in OK?
Where at? and does your use of OK mean the same as mine-Oklahoma?

Sorry Sandy, that was a goof on my part - knew it was another one of those big wide open places! He sees patients in Imperial Nebraska and Colby Kansas as well as two other rural locations in Colorado. More info is at www.vascularinstitute.com under rural outreach.

I don't know if he goes to to NE and KS every month or if he alternates - but there is no vascular surgeon on staff at the hospitals he visits, and it makes for a very long day for him, so it's neat that he does it. And maybe closer for some TOSers - although you'd have to call the office to see if he would actually be ok with doing TOS surgery at one of these hospitals, since neither he or any of his staff wd be around to keep tabs on you post-op (except day of surgery).

Hadn't thought of that - but I'm sure they stay in touch with him about his other surgical cases.

Never hurts to ask!

Sorry for the mix-up! :o

beth

Just wanted to say thank you to everyone who replied, I truly appreciate it. I have decided to wait on the surgery, I am working with my ins. to try and see a specialist hopefully at the Mayo Clinic in MN.

Mayo?
 

Why Mayo? So far we haven't heard of any good TOS doctors there. MelissaLH has some recent info re: Mayo; u may want to PM her. If you're requesting a referral to a specialist why not make it to one of the doctors in Denver?