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

SD38

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.

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.
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
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

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! 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

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....
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