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

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

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.

How are you doing now?????? Are you having the cervical ribs removed?????
OMG....... this recovery business seems to go on forever!!!!!
Its scary how quickly my arm fatigues with basic tasks like household chores, washing, cleaning etc.
Do you still have issues from the muscle tissue repairing at the incision point or has strength resumed?
Best wishes to you!!!!

Hi, I live in London/Brighton and am currently in the process of trying to get a diagnosis. Ironically, I'm a massage therapist myself, so I understand my body pretty well and am having trouble getting a referral to someone in London in understands/specialises in TOS. Is there anyone in the UK who has recs for physios/neuros/chiros who understand this condition? Am awaiting results of cervical spine MRI and blood has come back normal. Also got referral for brain MRI. Would love to connect with anyone who has been through the system here in the UK! Many thanks, K

Hi there k,
I was given my dx by Dr Waltham ( Vascular surgeon ) and seconded by Dr Holmes ( Neurologist ) at St Thomas' hospital in Westminster, London. Before this I was in the NOT KNOWING WHAT'S GOING ON WITH ME " blackhole"
for almost 6 years!!!!!!!!
I have issues in my c3 c4 but according to the specialists its not related to the TOS symptoms plus additional to TOS, carpal tunnel etc etc.
Its never ending.
Hope this helps????????
In the mean time try your very best to stay relaxed. Stress can aggrevate our symptoms so much!!!!
Best wishes to you...... keep in touch and contact anytime if you feel low.

SD38, my case is a bit complex, because there is some evidence that I may have a problem in pectoralis minor region as well (a venogram showed some compression). Also, I got some nerve injury from the surgery. I have had nerve injury before (trigeminal nerve) and it took about 1.5 years to heal. Otherwise I have been alright.

The surgery itself was not too bad. I had a gastroscopy today and it was almost worse . After the TOS-surgery I went grocery shopping on the third day post-operation and travelled to New York for a day trip one week post-operation.

The most upsetting thing is that I have had far too many health issues during the last three years and these have caused an illness burnout:
2008: trigeminal nerve injury -> pain condition -> healed
2009: brain tumour -> left side paralysis -> healed
2010: fracture in lower back -> healed
2010: TOS -> ongoing

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!