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

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

kim207, I never managed to get help through NHS but this may be because of my lack of knowledge of how the system works. I only got a referral to a physiotherapist who said she does not know what is wrong with my arm and therefore cannot help (I met her only twice). I got a MRI scan privately (cervical spine, plexus and shoulder) and met a chiropractor Sara in ChiroPeople, Waterloo.

My husband is a GP and was pretty sure I had TOS so I decided to search for help in my home country (mainly because I understand how the healthcare system works here, although I soon realised the lack of TOS-specialists).

Clematis, thanks so much for replying and sharing your experiences. My GP is looking at me blankly when I mention TOS...should I be getting an MRI of the plexus and shoulder? I know I don't have cervical ribs but suspect my scalenes and pec minor. 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.

You must be very strong willed to keep going.............. Its people like you that inspire me to endure!!
Best wishes xx

See if you can request a cervical/thoracic MRI. This should cover the region????
I understand all too well the BLANK expressions................. isn't it infuriating!!!!!!!!!!!!!!
Best of luck to you.

i'm having my surgery at medway hospital on 16th of jan, i've read quite abit about what to expect the recovery to be like the american information seems very dramatic which worried however both my consultant and nurse have said to ignore the usa advice as they tend to exagerate things somewhat! Both consultants have said it is a straight forward op with very little after care needed and will be able to return to my full time office based job after 1 week following surgery. I believe i am just having a scalenectomy no rib resection but just recently been having alot of pain in my shoulder blades. Has anyone else been put off surgery after reading american info? Debx

klm207, I am not sure what tests are needed. In my case the most helpful tests were functional dopler ultrasound of my artery and x-ray.

The dopler study showed arterial compression and the x-ray image showed an extra cervical rib or a far too long transverse process that that was fused to my first rib. Interestingly, the extra ribs had not been mentioned in the MRI scan report. The surgeon said this is very typical and therefore the x-ray is always needed. She also mentioned that my first ribs were a bit abnormal shape which is linked to TOS. In the operation an extra scalene muscle (!) was found and removed too.

I also went through a venogram (that showed compression of my vein under pectoralis minor), then the MRIs I mentioned (did not show anything) and some nerve conduction studies (were fine).

SD38, oh gosh you had TOS for 6 years before you got diagnosis! Have you been able to work during that time?

debbietellez, the American info both made me scared and gave me strength. Because I lost my ability to work from the beginning of the symptoms I had to take a risk and go through the surgery.