[MelissaLH]

My bilateral TOS has plateaued. Even after doing different types of physical therapy for a year and a half, I don't have enough functional ability to perform a job let alone get back into grad school, yet I have no income and cannot maintain like this forever. I CANNOT work using my computer degrees. Because of all of this, I have finally made the decision to have surgery, but I get so frightened as I hear about the negative consequences from the surgery that I can't help but wonder if it's even worth it to put my body through it?

My TOS is the result of a whiplash injury from my car being rear-ended, which is supposed to have a decent outcome, but I don't want my neck to destabilize, my brachial plexus to get niked, or RSD to set in, none of that. I honestly couldn't stand it, but I can't stay how I am either. I just want to break down and cry dictating this... from frustration, depression, and the awful lack of control. I was always a fighter for social justice, my friends and associates, AND for myself, a punk DIY girl that could tackle anything I set my mind on, learned to do anything I tried and do it well. Now I'm afraid of driving my own car for the pain...

So do I take the jump and have surgery and live with the consequences, or figure out how the heck I'm going to live like this? I was recently told I need to apply for SSD, but that won't save me, not with the long denial and appeal process. I've got a lawyer for the car accident, but she's not doing much of anything yet so I have no idea what will really come out of that. I know I have to come to this decision myself and obviously I'm wrestling with it, but I still wish that surgery didn't have to look like such a horrific decision...

Sorry for the rant...

Melissa

[Jomar]

(((Melissa)))

I don't know that the majority of TOS surgery is bad or has poor results. We just don't know how many have had the surgery and recovered just fine.
I guess that would take a serious discussion with each TOS surgeon to get the results from all of their TOS surgeries.
The good, bad and no change results.

Oh there was a surgery results article I had found and posted -also in the useful sticky -let me get the link to the post -{it has other links included also}
http://neurotalk.psychcentral.com/sh...5&postcount=21

- here is the article I was thinking of-

1: Ann Vasc Surg. 2004 Sep;18(5):558-65. Epub 2004 Aug 6. Related Articles, Links

Thoracic outlet syndrome surgery: long-term functional results.

Degeorges R, Reynaud C, Becquemin JP.

Department of Vascular Surgery, Henri Mondor Hospital, Creteil, France. renaud.degeorges@libertysurf.fr.

The treatment of thoracic outlet syndrome (TOS) is controversial and long-term results are poorly documented. This retrospective study was carried out to assess clinical outcome 2 years after TOS surgery and to determine predictive factors of outcome.

Between 1979 and 1999, 155 patients underwent TOS surgery.
Of these patients, 140 (90.3%) had a minimum follow-up of 2 years. Thirty-six (25.7%) patients underwent bilateral procedures. A total of 176 procedures were reviewed and served as a basis for study.

Presenting symptoms were neurologic in 15 cases (8.5%), arm or hand ischemia occurred in 38 cases (21.6%), and venous compression or thrombosis in 27 cases (15.4%). In 96 cases (54.5%), symptoms were mixed.

A transaxillary approach (107 cases) was chosen to address venous symptoms and minor arterial dysfunction.
A supraclavicular approach (69 cases) was used when there were large abnormal bony structures, neurologic symptoms, and/or severe limb ischemia.
The first rib was resected either extensively from its neck to the sternal attachment (54 cases) or partially, including the mid-rib and neck or the mid-rib and sternal attachment (121 cases), depending on symptoms, approach, and surgeon's choice.
Whenever present, cervical ribs, anterior scalenus muscle, and various fibrous or muscular compressive structures were also removed.

The 2-year functional outcome according to Derkash's classification was assessed by means of a phone survey. Pre-, per-, and immediate postoperative data were recorded and compared to functional outcomes. Mean follow-up was 7.5 A+/- 3.4 years (2a<euro>"19 years).

Functional results were
excellent, 87 (49.4%)
good, 61 (34.6%)
fair, 14 (8%),
and poor in 14 (8%) procedures respectively.

Predictive factors of negative outcomes were acute ischemia ( p < 0.01), sensory or motor deficit ( p < 0.01), and poorly systematized neurological symptoms as presenting symptoms ( p < 0.05), and extended resection of the first rib ( p < 0.01) and severe postoperative complications ( p < 0.01).
This series showed that the 2-year results of TOS surgery were satisfactory in the majority of cases.

Patients suffering from poorly systematized neurological symptoms in the arm had poor results. This subset of patients should be denied surgery or at least informed that postoperative results might be disappointing.

Partial first-rib resection and a careful technique avoiding postoperative complications were also factors in long-term success.

PMID: 15534735 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

It's a difficult and personal choice on the surgery decision.
There are so many variables between causes, symptoms, surgeons, other contributing factors, aftercare, and I think plain old luck lands in there somewhere too.

But if you add up the good & excellent % results from above you end up with 84% chance of betterment.

Of course if you look into surgery I recommend seeing the best surgeon you can find for the best results.

[beth]

Melissa,

It's NEVER an easy decision to have TOS surgery, at least if you are truly informed about the real odds, risks, and possible complications. Some people downplay all of that, say not to "scare yourself" by reading on the internet, and go to THEIR surgeon, who is guaranteed to cure you. Baloney. Knowledge IS power - you wouldn't buy a car or refrigerator, or have gall bladder surgery done, without doing some research, and this is much more serious. And NO surgeon has a 100% success rate for TOS surgery - not one!

Others accuse anyone who has surgery of "rushing under the knife for a quick fix", no matter that countless therapies have been tried with NO progress, only steady worsening of the condition. Other Drs even threw this at me accusingly, although I had true neurological TOS with positive EMG results and atrophy of intrinsic muscles of the hand. And findings at surgery, a scalene minimus muscle wrapped around the C8-T1 and subclavian vein made it clear surgery was necessary.Six months later, testing showed I still had compression of the medial cord at the pec minor, and I became the first (recent, anyway) TOSer to undergo a pec minor tenotomy. Without it, I would have continued to lose function of my dominant hand.

But deciding to go ahead with surgery - that's big, and it's scary. I tried everything available to me in order to get better - PT, chiropractic, neuromuscular massage, triggerpoint injections, more (different) PT, stellate ganglion blocks, meds, massage, different meds, posture work, stronger meds, OT, biofeedback, pain "education" and counseling, (much of this through a day treatment program at a pain clinic for abt 3 months), staying home doing absolutely NOTHING, distraction, positive thinking, willpower, tests, tests, and MORE tests!!!

I went from really bad pain for 3-4 weeks after my injury, to moderate pain and occasional good days, to constant severe pain, quitting work, and being limited to bed or the couch in 11 months. My faith and my kids are what kept me from "checking out, and truth be told, it was probably my kids when it came right down to it.

My TOS Dr in PA, Dr Togut, said I wd know it was time for surgery when I could no longer manage to live without surgery. I was at the end of my tether - literally. I couldn't stand for my kids to see me lying in bed or on the couch crying from the pain. I made the call and said "I can't live like this - it isn't living!"

He referred me to Dr Annest in Denver, and once the decision was made, I was really at peace with it, surprisingly, other than a few butterflies once in a while. Once in Denver it was SUCH a supportive environment I felt very encouraged, and in the best of hands. I wasn't nervous at all in pre-op, which really surprised me, just wanted to get it done! I really gave it over to God and my surgeon. Everything went well, and the surgeon found what had been causing me such tremendous pain - that was SO validating! My arm was warmer and I had less pain immediately on fully waking up post-op.

Now, I did end up in worse pain later from RSD, but I had RSD BEFORE surgery, and any surgery with RSD is a risk. The same thing happened after my pec minor surgery unfortunately - BUT, I needed those surgeries, or I would still be in that same horrendous pain from TOS and still have RSD pain, and also still be losing more and more use of my hand. Now the muscle loss has been stopped, some of it has been reversed, and the TOS pain is better, I'd say I'm 60-65% better on the right, which is a LOT from that terrible place I was.

I have tried many treatments for the RSD as well, none of which worked long-term, until a spinal cord stimulator was implanted last November. That sends stimulation down both arms from shoulder and armpit to fingertips, and has my current level of pain at a 4-5 out of 10 rather than 7-8-9 which I used to live with. With the stimulator in place, I am the most comfortable I have been since my injury, other than those few wonderful "good" days in the summer of 2003. (My pain does still flare with activity, the left side TOS is increasingly bad, the RSD in my feet and legs is worse - but I'm still MUCH better as long as I take things easy, and I'm VERY grateful!)

This isn't so much to tell you about me, as to show you how I made my decision, and why I don't regret it even though I'm not a 100% cure. I was out of options, and life as it was was unbearable. You have to decide if you are at that point for yourself, and if you have given every option a try. You don't have to justify your decision to anyone else - but for YOURSELF, make sure you will be at peace with your decision, whatever may come. Then move forward, knowing that you made the best decision for YOU, if surgery is what you decide.

And please, USE the experience and wisdom of everyone here in guiding you regarding surgical decisions - making sure you have a TOP, very experienced TOS surgeon is CRITICAL.

Best wishes and e-hugs,
beth

[MelissaLH]

Thanks much for the replies... I'm really struggling here, as I know many of us are. Beth, my hope is that I can be like you after surgery is complete and be able to handle any possible repercussions. While my pain is no longer as excruciating as it once was, I live a very limited life trying to avoid flares, and it's looking like I can't just stay in this state much longer. I, too, have pec minor tightness,in addition to my neck muscle spasms, which might or might not be helped by TOS surgery.

The principal factor that's weighing on me is that I cannot afford to go out of state for surgery, there's no way my insurance will pay for it since there are providers in network who perform the surgery, plus I couldn't take on that sort of debt. Even my student loans are in economic hardship deferment. Man, I better just crash. I'm too stressed out over this today, my options seem so few and severely limited, just like my life. I have to make a decision and be at peace with it, apparently I just don't know how.

Melissa

[tshadow]

If you would like to talk to me on the phone, PM me and I'll PM you my number in Palm Springs.

I am a licensed attorney, 10 years trial in civil and bankruptcy, 4 representing insurance co.s in work comp fraud, and that's when I got TOS from the law firm software. I was a Pro Tem judge for 6 years. I am still licensed, although I haven't worked for 4 years due to the TOS. But, you don't know me. Lots of people here do, as we used to meet at me house before I moved out here to the desert this month.

My point is this, I've had a cesarean, a hysterectomy (at 28), breast lumpectomy and reductions / leveling (29), cysts on my wrists removed, wisdom teeth, tonsilectomy...hhmm, can't remember what else. Got my TOS surgery done by Dr. Annest in Denver, was in the hospital 9 days due to their screw-up with my oxycontin by the stupid work comp adjuster who wouldn't approve that med. Otherwise, the surgery itself was EASY on my part, and my RSD disappeared thanks to the surgery. (Yes, this is not the norm. But it did.) My scar is about 1/2 inch on my armpit, plus one little dot where a tube was. I had NO complications. (I don't smoke or drink. Very important. I was 46.) My headaches disappeared. Circulation improved. Color changes stopped. However, pain and disability did NOT change. Sadly, I am still just as disabled. So that's the low-down on my surgery story. I had my surgery with Law76, she was in only 2 days I think - she did GREAT.

Next, about SSD, whether it takes one month or ten years, you're going to be 50 some day anyways and you need SSD and Medicare (and the supplement within 60 days of approval I think is the cut-off, don't count on me there, please check) so I'm going to be a firm mom here, and say, get off your butt and apply on-line and get it going. If you're denied, then hire a SS attorney, and get the appeal going. Have your hearing, like I did, (and yes, I hired an attorney for the hearing, my fiance prepared ALL of my meds and tabbed them by date, latest one on top so that we only paid $1000 and when I won I got a nice BIG FAT check.) DO IT.

We waited about 2 years for the appeal hearing, but that big check sure was nice. My brother has schizophrenia, and he got approved once I got him an attorney, and he also got a nice big fat retro check. So if you're disabled, can't work, TIME is the one thing you DO have, and sadly, you don't know what medical needs might just be around the corner, so do it now while you've got the ability to do it. TOS is a neurological disorder for the most part (some have vascular blockage) and with that can come some cognitive difficulties, so don't procrastinate.

When I was 23 I thought I was too old to go back to college, and then I read this thing that said "you're going to be 40. Do you want to be 40 with degrees, or 40 without degrees." It made perfect sense to me. It's the same thing for SSD. So the time delay, frustration factor, etc., none of it matters, if you're disabled by the TOS now, then you MUST take this action to protect yourself. My TOS gets worse each year, and I've gone from having a home aid 3 days per week, a few hours, to now 4 days @ 8 hours. (Although this move to Palm Springs seems to have given me more mobility. So it can improve also.) My point is, do what you can today, as much as you can today. When you have the bad days, be easy on yourself. There is a program that will PAY for your flight to Denver. We have all sorts of resources to share with you and ideas. There are 3 GREAT doctors in Denver, not to mention others on the "list" we have. (I just happen to like the fact that the Denver docs do a ton of research, write articles and do the highest volume of surgeries as well as the hospital there is used to supporting the surgeons for those surgeries. They also will do all of the diagnostic tests in one or two days for the patient.)

Please PM me so I can talk to you.

I was also a go-getter. I believe all of us here were / are, which is why we overworked and got sick. A few got TOS from accidents, but MANY got it from repetitive work positioning and TYPE A behavior...so you're amongst friends. Much love and support is here for you. And smart people. Let us help.

God bless.

[tshadow]

Originally Posted by MelissaLH

I've got a lawyer for the car accident, but she's not doing much of anything yet so I have no idea what will really come out of that. I guess it depends on if the surgeons will put in writing that the car accident caused my TOS. I know I have to come to this decision myself and obviously I'm wrestling with it, but I still wish that surgery didn't have to look like such a horrific decision...

Sorry for the rant...

Melissa

It's always ok to rant here with me. Always. Forget anyone who doesn't let you rant here.

As for your PI case:

Do NOT expect your attorney to do it all for you. With any legal case, you will know your case better than your own attorney.

I strongly suggest that you get and gather EVERY single medical document you can from each doctor, hospital, emergency room you can.

In So. Cal., the way we prepare them is to arrange them in groups of "by doctor", the oldest one on the bottom, with the dates to the latest of that doctor in that particular pile, if you get what I mean, then go to the next oldest doctor, again arranging the reports from oldest to newest. Your doctor on the top of the file should be your current primary doctor, with your most current report on top. Always have a copy for you, for your attorney, for the judge and for the other attorney whenever you have ANY hearing. (This is especially true for work comp, but also holds true for SS or PI, as in these cases I have seen attorneys show up without files. The clients are unaware of this, and that's how I've won many cases. Yes, it's malpractice!)

If you merely sign off on a sheet of paper allowing someone to get the records there is no guarantee that they follow through. At least 1/2 of the time, I have found the records are lacking important documents. Again, this is why I always won - I made sure my records were complete in my cases.

Once you start getting your records, it's easy as now I just ask for the last report whenever I go see my docs. Sure, the staff rolls their eyes...too bad. Under HIPAA, it's my damned right. And they can't charge me for asking for my last report. They can charge me $25 for my entire file, though.

READ your reports. If you're missing symptoms, or they've got a fact wrong, get it corrected. Talk to your attorney about it.

This PI case of yours is "on top" of what your SSD will be. Treat as you should and as your attorney advises. With PI, treatment on a schedule is VERY important. I understand that pain can keep you from treatment, but I also know that your recovery can be based upon your treatment needs in the future established by your proven record now and your doctors' statements now. Talk to your attorney about this NOW. Again, the Denver docs are VERY well-respected, as is Dr. Togut in Penns., and check our list for a top doc in your area on TOS.

You don't know what the future holds. You must step outside of your pain, and take care of yourself as if you may never work again, although, God willing, you may recover and rehabilitate and get back on track. But as you stand at this point now, do ALL that you can today to set yourself up for the most financial security possible, and the best medical and nursing care you might need.

God bless you sweetheart and I am so sorry you got hit and all of this disrupted your life. I don't believe God causes these horrible things. I do believe that through God, we are promised a later life of no pain, time with our loved ones and an eternity of happiness...Here on Earth we are supposed to serve one another as best we can.

[kellysf]

Melissa,

I had surgery almost 3 years ago and am worse off. I was 42 at the time and in good health. I had a surgeon in SF who's done 50-100 of these surgeries. He said I had an 85% chance of being better (though he couldn't predict how much better).

Just my two cents: if you are feeling better than you once did, then I don't think it's time for surgery. Maybe you can continue to do better. Surgery or not, you may never be able to do some of the things you used to do. Most of us still have to be very careful with activity, even when we've had surgery.

It's sometimes hard to think you have to continue with life the way it is. It is hard to imagine life can be more limited. But it can be.

I would echo Tam's suggestion about SSDI. I applied nearly 4 years ago and was finally approved, at hearing, a few months ago. I'm waiting for that check. It's worth the effort and don't give up when you get the initial denials.

Sorry if this just complicates your thinking. If you are having doubts, I think it's wise to listen to that little voice. I wish I had.

Good luck,
Kelly

[gibbrn]

hi Melissa,

I had surgery in July 2005 and it was hellishly painful but WELL worth it. I was on so many medications that it would kill three people. I could do nothing and was ready to give up.

In the end the decision was not difficult as there was not any other avenue to take. I had no choice, surgery or more pain and live like that for the rest of my life. I had the surgery and had six months of amazing pain free life. I then went for physio and they totally botched up the work the surgeon had done.

I hope that you can think of things in the context of your life....can you continue the way you are living?? yes there are risks for surgery, but there for me anyway were risks to not having it.

I wanted to get on with my life so did it!! NO REGRETS despite the pain return.....I cope some what poorly I must say but we all have our issues right......lol

Fear is only lack of knowledge and you can research the surgery or call surgeons and ask what percent of people actually have the side effects so grave as nerve damage(more than already have) and claw hand.....

You could also end up getting hit by a bus tomorrow by walking out in the sidewalk....not me I don't leave the house much....

All things in life have risks...weigh the good and bad and come up with your answer.

Best of luck. Please free to PM me if you need help.

love and hugs,
Victoria

[mucker]

Melissa i am going to take a guess that you have read my post about my surgery story. One thing i can say is doctor Bethune told me at the beginning i had a 80 to 85 % chance of full recovery but as time went on the % he had said changed to just helping with the level of pain so i fully understood what i was up against when i chose to go under the knife. I think it very important to talk with the surgeon and make sure what your outcome may be. I am at 4 weeks post-op and things are still crazy i can't truly say one way or the other if this is going to work or not. I have gone through all types of emotions from why did i go through this to what is going to happen to being some what happy i did do this. I totally get that this well take time to heel and i know that i well have permanent nerve damage but to what extent i don't know i can only hope at this time it well be a lot less then what i have had to live with for the past 3 years. As for ending up with rsd i don't know if any one can truly say that with out question you well end up with this because you have had tos surgery. I thought i might have it but the more i have read about it i would have to say no. Just for the fact i was having this problem not long after i started having the pain back in Sept 04 i have not had this pain happen any where else in my body the only part of me that has been affected are my hands arms and shoulders plus elbows and shoulder blades and neck and of course my head. Physical and mentally but that is par for the course. For my self i have done what is right for me so you well just have to sit down and talk to the surgeon and make sure you understand what the possible out comes can be and then and only then decided what is best for you. I wish you the best of luck in deciding what you well do i know it is a hard decision to make but your the only one who knows your body and what is best for you. If you would like to know more about what i have gone through in making my decision or questions i asked feel free in pm me i well be more then happy to chat with you in fact i well be going to see my doc on Monday so i should know more about what he thinks well transpire from the surgery. Bye for now and lots of

[beth]

Melissa,

I wanted to also say it is NOT impossible to get to a Denver doc - it's at least worth trying to get there for consults, and they may be able to fight your insurance co to get surgery approved w/one of them. Even though there are Dr's in MN who "do" TOS surgery, they are not anywhere NEAR the expertise or #of TOS surgeries performed by the Denver surgeons, and I'd imagine their outcome % is lower as well. Insurance companies do look at those things, and if it's more likely you will improve and need less medical care in the future by seeing a TOP surgeon now, they may go for it. And the Drs' staff members are very skilled at dealing with insurance companies, you probably won't have to do much, if anything.

Now, financial-wise, if you book far enough ahead you can find pretty cheap flights to Denver - less than $200 round-trip. BUT, there are also Angel-Flights and other programs for patients lacking funds who need air transportation for medical treatment. Free, flown by volunteer pilots. I think Hope or someone has that info, unless it's under the stickies, or you can google it. If you do a search for JensRib, she recently was in Denver and found a very low-cost place to stay near the hospital, I think $50 or less a night. The cafeteria at the hospital is inexpensive and the food is surprisingly good. As a patient, I give the food a big thumbs-up!!

Transportation around Denver can be pricy though, the airport is 20 minutes out of the city and a shuttle is $19, I believe. So you may need to cab it to see the PT, or have some tests done, depending on what is wanted. However, most can be arranged to be done near the hospital/Dr's office.

Whether you decide to have surgery or not, by consulting with one or more of the Drs in Denver, you wd leave having more peace of mind, because you have the benefit of knowing SO much more about your condition, and knowing you've been given some of the best TOS medical advice that is currently available. It's really hard to make a decision about surgery until you've seen someone who REALLY knows this condition. The difference between a top TOS DR who sees this all the time vs. a Dr who has "done some TOS surgeries" is just night and day - I can't describe the sense of relief you feel when you actually find yourself in the hands of an expert.

Like when I asked Dr Togut for trigger point injections, and went to point to where I needed them, he said "DON"T show me - I'll show you where you need them", and he did - went right to those nasty spots - cause he KNEW where they wd be. He spent 3 hours on my first visit. Dr Annest spent 2 hours. It takes that kind of time to get a history, clinical, do a detailed nerve exam. At the end they can tell you SO much!!!

There have been TOO MANY stories of regret here, from TOSers who went to local Drs for surgery and had bad outcomes, then found their way here, and wished they'd known beforehand to find a TOP surgeon. Those aren't all in Denver, you can see more on our list - but there aren't any recommended ones I know of in MN, and I personally wouldn't go to St Louis - PM me if you want and I'll tell you more.

I just want you to really think about this - if this is your one SHOT to get better - aren't you WORTH taking the VERY BEST chance you can?

Any way to beg or borrow the $$ - if I was your parent and you didn't ask I'd be pretty upset with you - but I don't know your situation. Any student loan funds left you can use? Can you sell something? How about a campus fund-raiser???

Ok, off my soapbox - just REALLY hoping for you to get BETTER ( and IMO there's Drs out there that probably shouldn't be allowed to be doing this surgery)

Please know we all CARE - and you're not alone, okay?

beth