[SD38]

I'm just curious to see if there are many, if any, people out there with bilateral V/A and some neurological TOS in the UK? If so how long have you had it, have you had an op, are you still suffering??????
I'm based in Greenwich- SE18, London.
I'm female 38 and would like to know if there are any other fellow TOS ladies out there to chat to?
winky:

[welshgal32]

hi i live in Bristol, i dont have it bilaterally but i have just had surgery on my right side for n/a tos. i am 3 weeks down the line, its difficult to tell right now if things have improved as i have a fair bit of nerve damage from the surgery right now that needs to settle down. i start physio tomorrow to get the arm moving.. i am a bit impatient as i want to be able to get home to west wales for christmas.

[Clematis]

I am from UK in a way. I used to live in Cardiff and in London, but I had to return back to my home country (in Scandinavia) because of TOS. I was also considering a surgery in UK since my home country does not have TOS specialists. I contacted e.g. John Thompson in Exeter Hospital based on his publication record on TOS.

[SD38]

Originally Posted by welshgal32

hi i live in Bristol, i dont have it bilaterally but i have just had surgery on my right side for n/a tos. i am 3 weeks down the line, its difficult to tell right now if things have improved as i have a fair bit of nerve damage from the surgery right now that needs to settle down. i start physio tomorrow to get the arm moving.. i am a bit impatient as i want to be able to get home to west wales for christmas.

Thanks for the reply
Hope you are well, its a long recovery road...............
Did you get offered physio automatically or did you have to request it?
I wasn't offered! I've ended up just trying to do my own.
I know that sense of impatience to crack on BUT do take it easy..... 3 1/2 months down the line and I still suffer from over exertion. One day of cleaning and I can be suffering for the week..... take care of scar tissue!
Best wishes
Have a good Christmas. xx

[SD38]

Originally Posted by Clematis

I am from UK in a way. I used to live in Cardiff and in London, but I had to return back to my home country (in Scandinavia) because of TOS. I was also considering a surgery in UK since my home country does not have TOS specialists. I contacted e.g. John Thompson in Exeter Hospital based on his publication record on TOS.

Thanks for the reply.
How are things working out for you?

[debbietellez]

Originally Posted by SD38

Thanks for the reply.
How are things working out for you?

hi i'm from kent i have suspected neurogenic tos and am due to have surgery in january.

[SD38]

Originally Posted by debbietellez

hi i'm from kent i have suspected neurogenic tos and am due to have surgery in january.

What form of surgery is being performed, is it scalenetomy work or first rib excision?????
Personally I would only opt for the surgery if there was impingement/compression to the artery or vein, neurological symptoms can subside/improve if care and life style changes are made!!!!!! Recovery from first rib excision can be pretty tough going for some..... me especially
I'm almost 4 months post op now and still having to take things easy!
Keep in touch, it helps to chat
Try to enjoy Christmas and enlist as many elves as possible to help with the Christmas prep and grub etc. NO LIFTING heavy shopping bags full of pressies.
xx

[debbietellez]

Originally Posted by SD38

What form of surgery is being performed, is it scalenetomy work or first rib excision?????
Personally I would only opt for the surgery if there was impingement/compression to the artery or vein, neurological symptoms can subside/improve if care and life style changes are made!!!!!! Recovery from first rib excision can be pretty tough going for some..... me especially
I'm almost 4 months post op now and still having to take things easy!
Keep in touch, it helps to chat
Try to enjoy Christmas and enlist as many elves as possible to help with the Christmas prep and grub etc. NO LIFTING heavy shopping bags full of pressies.
xx

I think i am having a scalenectomy!! Scan results have shown impingement to the veins and i have neurological symptoms too. This has been getting progressively worse over the last 3 years i have pain in my wrists, arms and shoulders which gets much worse during the cold weather.
I have been advised by my consultant that this is a relatively easy operation with very little after care needed and should be back to work after 1 week.
As i have had several weeks off work over the last 2 years i decided that i needed to go ahead with the operation to save my job!! I may need surgery to my right side also in the future.

Thanks for your concern. xx

[Clematis]

SD38, I had surgery in US in October and I am still recovering. The surgery, first rib resection with scalenectomy, was done 15 months after my symptoms started. I was 12 months in physiotherapy before the operation, but it did not help. In US the doctors called this both arterial and neurogenic TOS. I have extra cervical ribs.

[SD38]

Originally Posted by debbietellez

I think i am having a scalenectomy!! Scan results have shown impingement to the veins and i have neurological symptoms too. This has been getting progressively worse over the last 3 years i have pain in my wrists, arms and shoulders which gets much worse during the cold weather.
I have been advised by my consultant that this is a relatively easy operation with very little after care needed and should be back to work after 1 week.
As i have had several weeks off work over the last 2 years i decided that i needed to go ahead with the operation to save my job!! I may need surgery to my right side also in the future.

Thanks for your concern. xx

Recovery seems to be dragging along SLOWLY!!!!!!!!!!!
Apparently my surgeon suspects that my hand on the operated side still goes numb during the night due to carpal tunnel..... additional to the TOS.
Will this ever end I wonder????????
I'm scared witless now with the prospect of surgery to the other side ( dx bilateral V/ATOS), but unfortunately it still causes issues for me, such as fatigue and circulation issues!
At the moment I'm only just managing to cope with part time work, 3 hrs/day classroom assisant- and that includes restrictions on picking up heavy equipment.
If I can give any advice......than that would be to put yourself first before any job, whether it be through an employer or at home. Rest is needed, and limitations put in place.
Where are you having your op?
Hope all goes well for you...... make sure you get people in place to help you out with home chores etc, you will need the help. Don't be too proud, recovery can be tough BUT easier if you don't have to keep up with everyday chores.
Best wishes, take it easy!