I don't think you can count on these numbers, in the sense that after seeing 28 doctors, about 6 of them listed in our doctors' list, NOT A SINGLE DOCTOR fully agreed with any of the others on all issues. (Johanna is quoting her neurologist's opinion, it appears to me, yes?) (And so she has a right to, but I also found those statistics recently published via med article which listed 76% (est.?) of TOSers after surgery were still significantly disabled by their symptoms and had not returned to full-time work. I also agree with OlCyn, that the worst TOSers come here, as they seek out further answers and support.) All of this can be true.

Dr. Brantigan would not "do" surgery of any type on me, after examing me, due to the immunological / inflammatory type action he observed, and his concern over the RSD, as I understood him to say. I don't have his letter handy to quote, so I'm concuding a discussion here and also not waiving any medical privacy by doing so. But my understand from Dr. Annest who did do my rib removal, was that I had neuro TOS very severely for four years, and at best I could expect a 5 - 20% improvement, with the RSD and fibromyalgia which was present. And he was correct - I have constant high to occasionally mid-pain, which is still present, but the RSD / color changes did disappear, the headaches and my circulation improved markedly.

It is my opinion, can't call it a fact, that Dr. B examines and chooses his patients very carefully, and I agree with the other poster who identified his success with vascular patients.

If it were me, I'd make appts. with at least TWO of the top Denver docs during the same trip, and get their opinions, if not make a determination of a surgeon in that manner. That is my PERSONAL opinion, and you will find many who advocate their doctors here, which is to be understood.

JETJR, I am glad that you do not have the horrific pain levels that the TOSers have who I've met. However, you do have symptoms that appear to indicate impingement, and I'm going to post my "list" of tests, but also say that the surgery was easy for me, I've had a hysterectomy, cesarean, breast lumpectomy / reduction in my 20's, so this at 40's was much easier recovery, and my scar is about 1 inch est., but light, under my armpit.

Take in all your info. and come to your comfortable conclusions. God bless.

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

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!