Hello I am new here, and would love some advise
 

Hello everyone!
I would love someone's opinion who has been through what I'm going through, because my head is spinning trying to decide what to do.

I was diagnosed with TOS a few years back, and have since cut my hours at work, and see a physical therapist and also chiropractor/massage therapist because of it. I have pain in the area which runs from my neck to my shoulders all the time, but have gotten used to it. I also have tingling, numbness and cold in both my arms and hands all the time. I thought that was all that could occur from TOS.

Recently I was diagnosed with a subclavian blood clot and treated with bloodthinners. Was seen by ER doc, hematologist and general practitioner. No one could have any explanation for what caused this. Finally after a few weeks, my practitioner told me of a condition called Paget Schroetter syndrome and told me to look into it. She put my in contact with a Dr she knows that specializes in Paget Schroetter. He is far away, but he ordered me a venogram to inspect the clot.

So, the venogram does show that my vein is still completely shut due to compression of my first rib. The vascular surgeon told me I need rib resection and release of some muscles and repair of the vein.

I asked him if he knew of anyone closer to me, as we are many states apart. He said no, there is no one in NJ, NY or PA who can do this surgery for me, and I should fly out to have him do it.

I told my hematologist about this and she told me that Paget Schroetter disease or effort thrombosis is hog wash and to continue taking my blood thinners and thats all I can do. She said as long as I dont have an extra rib, I cannot have this disorder.

I am so confused, I dont know what to do. Should I really travel 1,000 miles away to have this surgery done by someone who supposedly has a good reputation, but whom I havent even met? Has anyone else had this dilemma that could offer some advise to me? I'd appreciate it very much!!

Hi,
I don't want to advise but here is my experience.
I underwent a first rib excision op (2 months ago) due to arterial/venous compressions. The procedure was performed to relieve the pressure on my artery even though I did NOT suffer clot damage and had NO extra rib.
Believe me I know that you can have compressions without having an extra rib. When I raise my arms up (unoperated side) hand turns white and I totally lose my pulse while the operated side now has a strong blood flow and a nice pink colour to the hand.
I have post surgery anxiety due to the fact that I'm due a 2nd identical op on the other side to free up a venous occlusion.
I'm obviously tender after it and have some neuro issues plus the scarring is horrid BUT no occlusion. That in its self for me brings some kind of peace of mind. The fear of an aneurysm prompted me to go ahead with the surgery.
If you are unsure because you have never met the recommended surgeon than maybe you could arrange an online chat (skype) with him to discuss the procedure?
Best wishes with whatever you decide. In the meantime concentrate on your posture and relaxation techniques to help you through it.
SD38:hug:

SD38

Hello,
Have you looked thru our Drs & PTs sticky thread to see if a closer surgeon is listed there?
I really think someone as qualified & skilled should be closer to you....:confused:
http://neurotalk.psychcentral.com/thread135.html

And I would suggest a second opinion from another surgeon always.

Not sure about the schooling/classes a hematologist takes or has, but IF there is a complete compression all the time and expert PT, chiro and such hasn't helped much at all.
then surgery might be in your future....

But do read what others here are trying for self care maybe something new that hasn't been suggested for you...
AND -
How is your upper body posture???
Head forward - shoulder rolled or hunched forward these will close off the spaces and cause big problems, so if this applies and PT/DC haven't said anything about it or addressed it at all - find better treatment providers...

there are simple things you can do daily to open the area - I just posted to another new member here this morning and the info & pictures are in that thread. http://neurotalk.psychcentral.com/thread159504.html

If the venogram shows closure, I would not mess around with it. I would do as JoMar suggests and get a few different opinions. Would think someone COULD do the surgery where you're at - but whether you'd want that is another question. Personally if/when I have to cross that bridge, I'd want NOTHING but the best surgeon I could find.

Chances are (from what I've read extensively) your nerve issues will become worse, but vascular issues better from the surgery. So you're likely trading vascular peace of mind for neurological issues indefinitely - especially once scar tissue forms. Tough call, and I doubt there is a "right" answer. Only the best answer for you. You'd have to pick the lesser of the two evils, I suppose.

Have they said anything about imminent danger or severe risk in the meantime? How did the symptoms progress or go from Neuro to vascular? Did you try self care that produced any relief?

thank you SD38 for your feedback. My husband had actually suggested the same online chat idea. I'm sorry to hear you have post surgery anxiety and have to have the other side done as well. I am afraid I may be a candidate for the other side also someday, as my TOS symptoms are actually worse on that side. (however, no venous occlusion over there yet) Can you tell me, was it very bad recovering from surgery? Is this what is caused the anxiety you have?
I will concentrate on my posture and relaxation more. Thanks again.:)

Jo Mar,

Thanks for your help. My upper body posture is terrible. I tell myself constantly to sit up straight. I noticed lately when I see myself in pictures just how bad it is. Even when I'm just standing, and doing nothing. Thank you so much for the link to simple things I can do daily to open the area, and also the link of DR's I will look at them both tonight. My hematologist is so close minded, and no longer a help to me at this point, so I am not going to see her anymore. I will seek another opinion from a closer surgeon., before I settle on going to the one far away.
Thanks again, I really appreciate it!:)

Dear 343v343

Thank you very much for your input. The vascular surgeon says yes, he is sure there are Drs closer to me that can do it, but they do not do this particular surgery enough that I should feel comfortable going to them.
I didnt know anything about nerve issues associated with this surgery- see no one has mentioned that to me at all. It sounds like I can't or shouldnt walk around with an occluded vein for the rest of my life, so I guess the surgery must be the lesser of two evils. Yes I would travel far to go to the better surgeon, no doubt about that.

Nothing said to me about sever risk or immenent danger, just that I'm in a "chronic state" and it wont go away on its own. The surgeon told me stop taking my coumadin (blood thinners) because there is no need for it, since a blood disorder is not what is causing the occlusion, rather its caused by compression. My general practitioner told me to keep taking it, just to be on the 'safe' side.

No, self care has not produced relief for me. I have cut my hours so much I am practically unemployed. I may as well quit alltogether at this point...

Symptoms went from neuro to vascular when one day, out of the blue, my arm, hand and fingers swelled up to twice the side of my other arm. I had an emergency ultrasound which showed apparent subclavicle-axillary deep venous thrombosis.

Thank you again so much for your advise!

Did you get your TOS from repetitive stress? Poor posture? Do you know? I feel for you, it's a tough call.

http://my.clevelandclinic.org/disord..._syndrome.aspx

This is a good link, and there are others:

** What they don't tell you is that the scar tissue most often results in worse neurological symptoms. Many people wind up in MORE neurological pain after the surgery. I have consulted with a vascular surgeon who says his success rate is something like 95% -- It seems that almost any surgeon will tell you that you'll be fine, but I have yet to read of someone who had Neurological decompression that came out fine long term.

There are several links on the "success" of surgery, and there are personal accounts of those who have had it. It seems like those who have / got TOS from a cervical rib or a traumatic event (like a car accident) fare better than those who have it from microtrauma (repetitive stress).

Another good link: http://www.ecentral.com/members/rsanders/

From my perspective, without vascular involvement - surgery is a tough sell. When I "read" 70% success rate, I'd be more thinking more like 70% failure rate - based on what I read everywhere.

I feel for you, but if it's any consolation I'm in the same boat. I meet with a vascular specialist again in a week to see how much (if any) vascular involvement I have. And as you've experienced, who knows if that will remain for the future. I could have neurological issues one day, and the next month vascular. Seems to come on out of nowhere.

Were you doing conservative treatment to open up your thoracic triangle regularly BEFORE the vascular issues?

HI!

No, I wasnt doing anything really, except monthly visits to the chiropractor for adjustment and massage. Also- I did do physical therapy 3 times a week for about a year. Then I stopped because I didnt really think it was helping much- plus the excersises I learned I could just do myself at home.

I will tell you, I have poor posture. I also think it is probably repetitive stress too, as a dental hygienist. I have cut my hours from 40 hrs in 2005 to 28hrs in 2007 to 20hrs in 2010 to now 8 hours per week! (4 hours on monday, 4 hours on tuesday) Even after the first patient the pain and tightness increases, mostly the muscle that goes from the neck to the shoulder, and the tingling and cold arms begin again. I am ready to retire, and I am only in my thirties, how depressing...lol

Good luck with your vascular specialist- do you know what caused your problems? Until i had the vein thrombosis, I had no idea there was chance of vascular involvement with TOS.
I really appreciate your help and I will check out the links right now.





Did you get your TOS from repetitive stress? Poor posture? Do you know? I feel for you, it's a tough call.



This is a good link, and there are others:



** What they don't tell you is that the scar tissue most often results in worse neurological symptoms. Many people wind up in MORE neurological pain after the surgery. I have consulted with a vascular surgeon who says his success rate is something like 95% -- It seems that almost any surgeon will tell you that you'll be fine, but I have yet to read of someone who had Neurological decompression that came out fine long term.

There are several links on the "success" of surgery, and there are personal accounts of those who have had it. It seems like those who have / got TOS from a cervical rib or a traumatic event (like a car accident) fare better than those who have it from microtrauma (repetitive stress).




From my perspective, without vascular involvement - surgery is a tough sell. When I "read" 70% success rate, I'd be more thinking more like 70% failure rate - based on what I read everywhere.

I feel for you, but if it's any consolation I'm in the same boat. I meet with a vascular specialist again in a week to see how much (if any) vascular involvement I have. And as you've experienced, who knows if that will remain for the future. I could have neurological issues one day, and the next month vascular. Seems to come on out of nowhere.

[B]Were you doing conservative treatment to open up your thoracic triangle regularly BEFORE the vascular issues

I'm certainly no expert - far from it. In fact I am relatively new to TOS - like you, I am in my early 30's and facing the real possibility of having to reduce my work to nearly nothing. I had a flourishing business and have had to slowly diminish my workload as symptoms worsen.

I have seen nearly 20 different doctors and am no better off than I was - in fact my symptoms are slowly worsening. I fear being disabled and losing everything I have worked so hard for. Sadly, there is no "cure" and it seems like to some degree... Surgery or not... A full recovery is not feasible. I am/was self employed so I won't even get disability or workers comp. So I'm pretty much screwed. My only hope is trying to minimize pain enough to be able to work, which affords me small amounts of money to pay for pain relief.

It's a tough situation, honestly. I think my TOS was brought on my years of posture issues at a computer desk. I have been doing everything to try and improve it. Some days are better, some days I am so down and out I wish I'd die in my sleep.

I fear one day being in the place of having to decide if surgery is for me. I wish there was a better prognosis for it, but I can't see any reason to gamble yet for myself- unless the vascular symptoms emerge. I guess one has to weigh potential life threatening issues versus a lifetime of pain. I suppose if you're already in pain... Why not?

But to have increased pain? Tough sell. To go through a horribly painful surgery to wind up worse off seems cruel at best. I am bilateral as well so I'd really be pushing my luck.

If I were you I'd look up Dr. Sanders in Denver. Seems like people say he's the best. I realize it's a long flight but... ?

Hi Mcmanisport
First off let me clarify that I have peace of mind that one side is occlusion free ( after op ) BUT
in all honesty the surgery took its toll abit, phyiscally and emotionally. Unfortunately my immune system was hit and a few weeks after the op my lymph nodes near the incisions came up. I had a very sore throat for weeks too and because ligaments were shifted about during the op I obviously had to endure my neck feeling very tight and caught up, and unfortunately experienced some horrible headaches and dizziness.
About 2 weeks after I also gained pulsatile tinnitus ( a rhymic pulsing sound in my ears ) possibly due to the new blood flow I'm getting on my operated side.
I still have venous occlusion on my left and the blood flow imbalance is audiably noticable. This symptom will hopefully be corrected after the next op.
The worst part of surgery is that the aftercare is nil, you are pretty much on your own so get as many tips as possible for relaxation techniques etc.

I'm 2 months out of work and not ready to return yet..... I feel tense about this and its causing me to feel extra anxiety about returning before I feel fit. I cannot afford to cause myself extra damage due to scar tissue just because I'm rushing to get on the mend. I often have to remind myself that my health is more important than keeping a part-time job. Like you I drastically reduced my work hours but luckily have my husband's support to quit work so that I can concentrate on healing. I must be an idiot as I'm stressing about NOT working aswell:rolleyes:.
If you consider surgery make sure that you are prepared for unforseen events. Start to eat healthily and get in your multivits to boost your immune system. You may be off work longer than intended.
Do you have reliable close people to help you out for the first few weeks after surgery? Believe me the last thing you will want to do or be able to do is housework. Family members will have to pull their weight.
I don't want to scare you but be prepared with how the look of scarring can affect you. I thought that I would be absolutely okay with it, I just wanted the compression gone but now that the scars are here for all to see its quite a knock on my self esteem. They are above and below my collarbone at 2 1/2 " wide......... and the prospect of having them also on my left side is hard to get my head around. I'm also struggling with feelings of guilt because apart of me thinks- how can you let these scars get you down when there are other people out there in a far worse situation. Vanity I know but I am now a woman who has scarring in a very feminine region, even high neck T shirts don't cover them properly and I'm certainly NOT going to walk around wearing a poloneck for the rest of my life. So yes be prepared for the stares of strangers as they do a not so sneaky glance at your scars ( its a very intrusive feeling ). My husband says I should be proud and show them off with confidence because they are apart of me now.
I have to keep telling myself its better than my vein being compressed.
I'm seeing a councellor to try CBT tomorrow in the hope that I can work on refocussing and gain confidence.
I'm pretty strong willed but the op affected me in a way that I wasn't prepared for or even considered that this would happen to my self esteem.
I know it won't last but its hit me all the same.
Get a good support system in place ready and prepare your loved ones for possible changes.
Keep in touch on a regular basis with this forum..... it really does help!!!!
Best wishes:hug:
SD38

@Mcmanisport you mentioned the problems you experience at work. I know for me, if I do my stretches and postural exercises before doing something physical, I have fewer problems. For example, if I'm going to do housework, I do self therapy first and it goes better.

Maybe you're already doing this, but if not, try carving out some time before you go into work to see if that makes it more bearable.

HTH

Also try taking frequent stretch breaks during work to break up static positions. I know for me, that seems to help. I am at my worst after work, after a long day especially...

Hi Chroma, No actually I dont do this before work- just during and after. I never thought of that. Thank you- I will take your advise and try it Monday morning:)

Thank you for the rest of your story. I would think I too would be absolutely fine with some scarring but like you said- you dont know how you'll react until you have them yourself. Post surgery does not sound like fun :(
It sounds like you have a good support with your husband. I think mine will be a big help, especially with our little one. I have a Mom who would come out and stay with us if I needed her to. This forum has helped me a bit already- thank you:)

343v343,
I'm so sorry about your down and out days. I will give Dr Sanders a shot and call tomorrow. Today I literally spent the entire afternoon calling around looking for a closer Dr. It was ridiculous. I finally found someone 2 hours away (from the list on this forum) in Baltimore who does a lot of these procedures, and she and her receptionist were so helpful via email last night and phone today- and then come to find out neither the Dr or the hospital (johns hopkins) takes my insurance. Darn it.
One very frustrating thing I found is that no one answering the phone seems to know what Paget Schroetter or effort thrombosis is or a subclavian vein?! One receptionist, I told her all about what I have and she said "oh yeahhhh- our Dr. performs many of those surgeries and he is VERY good too" AND THEN she says to me- "now ok, what LEG is this in... your right or left?" OMG LOL I was ready to cry at this point. I did finally secure an appt with a vascular/general surgeon at Lankenau hospital which is just outside Philadelphia for next week. Will keep trying again tomorrow for one more. Thank you again, and you hang in there too.

If surgery is considered than I would definitely recommend that mum is on board too. The more hands on deck the better for everyone, including hubby.
No disrepect to mine bless him but its amazing how quickly the pile of washing built up!:rolleyes: My guy was great but after a full days work I couldn't watch him deal with all the household chores too...... Anyway, its the perfect opportunity for mum to fuss over you all over again:).
By the way, your post to 343v343 did make me giggle..... especially when you wrote that the receptionist said, " what LEG? ". OMG!!!!
-If you don't laugh, you'll cry... right!
Good luck with your choice.
SD38

343v343,

I wanted to tell you I spoke with Dr. Sanders today, as you mentioned him. He was very nice and very helpful and I'm faxing him my records tomorrow morning for his opinion, once I pick them up at the hospital. :)

SD38,
LOL! Yes regarding the "if you dont laugh you'll cry right?" :D

Please do document and tell us the process, very curious to hear how this all unfolds for you. I hope I never have to meet him, if that makes sense. But interested to hear how you experience the entire process. If you haven't already, check out this article:

http://www.ecentral.com/members/rsanders/

Who the heck is this doctor who says there is no one close to NJ who can do this surgery? Has he never heard of New York City? I'd be cautious of anyone who is so determined to hold on to you.

Look up NYU Langone Medical Center, Vascular Surgery Department--
Dr. Mark A. Adelman,
530 First Avenue
New York, NY 10016
P: (212) 263-5631
F: (212) 263-7722
Very nice guy and not eager to cut when it really shouldn't be done.

Look up Columbia/Presbyterian Hospital--
Dr. Mark Ginsburg
New York Presbyterian Hospital / Columbia
161 Fort Washington Ave Ste 301
New York, NY 10032
(212) 305-3408
Not as personable as Adelman in my experience, but quite confident with this surgery

Look up any of the many other NYC area hospitals. A little farther away is Yale-New Haven, CT.

If you are southern NJ, look down towards Baltimore and DC.

Sometimes you have to dig through their websites a bit to find TOS, it doesn't pop right up at first search. Look through the Vascular surgery and Cardio-Thoracic surgery departments.

It's ridiculous to be told you have to travel a thousand miles from this area to find a competent doctor.

Hi Mcmanisport,
Good luck with the doctor. I hope you get answers.:winky:

Oh I know- the more I think about it the more I'd like to stay away from him. Thank you so much for the names and addresses of the two Drs in new york. I am relatively close to Philly but NY is an option too. I did find a Dr who has a wonderful reputation in Baltimore, but unfortunately, she doesnt take my insurance, and neither does the hospital (Johns Hopkins) that was a major bummer. :(
I have been digging through websites just like you suggested. I went on my insurance web and found all vascular Drs. I then went onto all their personal web pages and noticed some of them said things like "interests: thorasic outlet, pagett schroetter, etc." Those are the ones I looked into and made appts with.
I also came across some who work in the same practice that said "this Dr Does Not see patients for thorasic outlet syndrome" OH well- at least they tell you up front, right? :rolleyes:

Thank you again for your input, did you use one of the Drs you mentioned?

I have scar tissue from a broken collarbone, that had to be pinned after months of not healing, wrapped around the subclavian artery and vein. Not your normal type or origin of TOS.

After running through numerous local doctors of various types, got sent to my local hospital's head of vascular surgery who said "I don't believe your MRA" and "You don't have a vascular problem" (only my arm turns blue, loses all feeling and pulse...) and all my other local doctors went "Huh?", I first went to Yale New Haven, where doctor said I needed rib/scalene removal in about 5 minutes into the appointment. But said he would not touch scar tissue (so then what good is....?).

Next went to Dr. Ginsburg at Columbia Presbyterian. He said remove rib, scalenes, scar tissue, rebuild collarbone...(but what is wrong with my collarbone, did they fix it wrong...? We just do that. Have collarbone specialist....). Did not make appointment to see collarbone specialist to find out if needed, too freaked out. He was nice enough, but would have liked a bit more time and explanation. As he described the surgery, almost sounded bored with this routine. Obviously he's comfortable with it.

Looking for middle ground, went to doctor at Mass General in Boston. Said he tries a bunch of other things before going to surgery to make sure it's the right thing to do. Ran their special CT scan. Sounds great. Only he mixed up someone else's records with mine, and had diagnosis & symptoms for me that I don't have. Fortunately found out before he did anything to me. Bye bye...

Went to Dr. Adelman at NYU. After evaluating all my previous tests and some of his own, told me it was indeed scar tissue, and while he is a surgeon and makes his money doing surgery, he would NOT recommend surgery for me. Bone spacing is fine. Muscles are fine. Problem is scar tissue, and trying to cut away scar tissue is more likely to cause damage to healthy tissue (blood vessels, nerves) and there goes my arm, my breathing, etc. Recommended extensive PT to remodel and loosen scar tissue. Called Dr. in my local area (Connecticut) to find a PT for me up here so I didn't have to travel into the city. Listened. Explained. Believed symptoms I have that they could not see (cause of) during testing. I liked him. Which is not something I can say of most of the approx 10 doctors and 8 PT's I had run through before seeing him.

Dr Adelman sounds like a good Dr. I set up three appts with Drs closer to me but I will definitely keep him in mind. Too bad about the Dr that messed up the records- big OOPS! :eek: And how about the Dr that says you dont have a vascular problem as he looks at your blue arm. :confused:
I'm discovering its a scary world out there in medical land and you really have to be your own advocate nowadays...

Thank you for the article!!
Here is what happened today with Dr Sanders:
Very nice and personable man. If he wasn't so far away I would have gladly seen him in person. He gave me his opinion today (as much as he could without seeing me in person with only diagnostic test results, the paper documents, not the actual CDs) and no exam. He said the vein is shut but has discovered new pathways for the blood to go which is the body's way of making up for the clot being there. Have you heard of this before? He said that is why I can see my veins more prominent on the right side of my chest and my upper right arm. He said I could easily live the rest of my life like this just fine. If the vein decides to recannelize or reopen, then at that point I become the perfect candidate for another clot, and that's when something such as surgery should be done. He suggested another venogram in 2 months. He also said if my discomfort from TOS is very bad then that could warrant surgery and at that point they would repair my vein also- since they are already in there. My discomfort is not quite at that level yet, especially knowing now how uncomfortable recovery may be. Soooo, I have two very different opinions now, though both done strictly over the phone.

Thank you again for the recommendation.

3rd, 4th, and 5th opinions are now all set for the first and second weeks in November. Two in Philly and one on Main Line.:)

@Mcmanisport - that's good he took the time to answer your questions on the phone. Did they charge you $$ for the consult? That's interesting he feels you could leave well enough alone. How would you know if you needed intervention though? Just deal with it when/if you get another block? That's not comforting, is it? :confused:

I realize you had TOS for a while, but how did the actual thrombosis or vascular issue come into play? Were you just working one day, and bammo? Pain? swelling, and discoloration? Did the doctor(s) seem to stress you having the surgery or?

If you want a good directory of surgeons who are well versed in TOS, and surgery I'd look at this list for names:

http://surgery.wustl.edu/TOS_Consortium.aspx

I looked up his email address and sent him a brief email. I told him I had heard he was very good in his field and gave him a short summary of my history. I stated I lived far away but was wondering if he was willing to give me advise as to where to go from here with treatment.

He wrote me back that he'd be happy to talk to me by phone and gave me his number. Totally nice guy, right? And no he didn't charge me. He did suggest I find another occupation and I kinda figured that, as he has seen a lot of patient suffering from this in my line of work. I dont really want to retire at my age, but I dont think I have much of a choice coming up. Yes I am confused and yes I'm glad I have 3 more consults to look forward to in the next 2 weeks. Hopefully they dont confuse me more. lol

I wasnt working when it happened, I woke up one morning and noticed my arm felt tight and a little numb. I thought i slept on it. As the day progressed the numbness and cold progressed and the tight feeling was VERY uncomfortable. Best way to describe the feeling is an overstuffed sausage. :eek:

Of course this had to happen on a Sunday so I pushed it off. Monday morning I woke up it was the same, only now my arm was dark pink almost red. It felt like my arm would split open from the tightness. I had to work that day, just in the morning, so on my way in I made an appt with my general practitioner for the afternoon. As I was working I showed my coworkers and most of them thought it looked like a reaction to a spider bite or something like that. I showed my boss and he immediately said it looks to him like I must have a blood clot, told me to call my Dr and tell them that. So I did and they sent me over to an imaging center to have an ultrasound. When I went for the ultrasound the technician was very surprised to find two clots, one in my chest and one in my armpit. The attending Dr. came in and told me to go straight to the hospital, called my husband for me, called the hospital too. When I got there they were ready for me and I got to bypass all the people in the waiting room;)

The ONLY thing I can think of that I did differently leading up to this is that the week prior, I worked two 10 hour days in a row, and I picked up the Saturday 6 hour shift. I was helping out a friend on vacation. Normally I only work two 4 hour days in a row.