TOS in the UK.
 

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:

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.

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:winky:
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.:rolleyes:
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:hug:
Have:santa: a good Christmas. xx

Thanks for the reply. :winky:
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.

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:rolleyes:
I'm almost 4 months post op now and still having to take things easy!
Keep in touch, it helps to chat :winky:
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.

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!:rolleyes:
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!:winky:

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!!!!:hug:

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.:hug:

You must be very strong willed to keep going.............. Its people like you that inspire me to endure!!
Best wishes :hug: 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!!!!!!!!!!!!!!:mad:
Best of luck to you.:winky:

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.

I don't think American patients here on these boards are exaggerating their post-op experiences. If you're able to go back to work after one week, it is definitely due to you having just the scalenectomy with no rib resection, as opposed to you not being American. :)

I am curious why American doctors seem to favor the rib resection to start with. Seems like scalenectomy is the right place to start.

you're probably right as it appears to be a much simpler op but i'm wondering if my doc is underplaying it at all!! i just hope the scalectomy works because if not then they'll do the rib resection with more time off work. I'm very frustrated by the whole thing tbh and am in alot of pain today, i have had many different tests over the past 18 months and have had to take time off work when this could have been sorted out sooner. My consultant said tos right at the beginning but due to the nature of the surgery i needed other tests to confirm his diagnosis now 18 months later at my pre op assessment he said the surgery is straightforward and a relatively easy recovery and able to drive after 48hours. All this is great i just wish it had been taken of sooner. Sorry for the rant xx

Many call it a more 'complete' decompression. However Sanders / Annest in Denver, prefer Scalenectomy alone. According to their research, the statistical outcome is the same long term regardless of procedure.

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

No problem re: the rant. We all need to let off a little steam every now and then. :cool:

Keep in mind that after the scalenectomy, conservative approaches like chiro and PT might work better than before due to various reasons like more space, less muscle tension (the muscle is gone, hehe) and I would think that pushing/adjusting the first rib down would be easier. So if you still have symptoms after the surgery, I would restart the conservative approach first before getting the big rib operation.

Just my two cents. Hmm, what's that in the UK? Pence?

Seems a tad bit optimistic, if not downright unrealistic. But I'm hoping that is the case for you. I'd be surprised if you returned to full capacity after a month, let alone a week.

I can't comment on the recovery for a scalenectomy op but if it includes a first rib resection then BE PREPARED!!!!!! It carries a BIG ouch factor...... I'm still recovering now, post 4 months.:eek:
P.S I don't want to downplay a scalenectomy op as I know that too can complicate issues in the neck....... any surgery in this region carries probs. Whatever is performed, be sure to stretch gently afterwards and take the recovery nice and slow. It doesn't do to go rushing back into normal activities to please others. Along with surgery comes scar tissue damage if care is not taken!

I've managed to continue working but over the last few years my hours have reduced dramatically, I'm now part time: 3 hours/day. I've also had to adapt and make alot of life style changes to help me cope with the symptoms. I work hard on things like trying to reinforce good posture and limit working with my arms as much as possible.... if its not needed I don't volunteer it. There are many things I just can't attempt anymore. Heavy lifting is an absolute no no and even to try and do a gentle job/exercises causes issues for me! I'm managing just, but at least I can still earn alittle which helps with my self esteem, I just hope it stays that way??? FINGERS CROSSED!
It's been pretty tough at times, I just have to be very aware of signals that my body send out and know when to quit and rest up. I'm more at a mental struggle at the moment due to not being as physically active as I used to be..... VERY FRUSTRATING...... I miss jogging:(.

I was dx with a sub cervical rib about 27 months ago after I found a hard lump in my neck. I was lucky the consultant knew about it as he knew before the xray confirmed.
I was having fairly minimal symptoms. I was told to come back if it bothered me. Which it got really bad after the birth of my daughter. I tried physio and acupuncture the physio made it worse.
The left was removed in September 11 and the right us to be removed in a couple if weeks.
I am still taking pain meds from the left side, it didn't go smoothly I has complications post op. He thinks the pain should go within a few months.
I think I will need physio though.
I am hoping the next op will go better than the first.
Good luck, it is a difficult journey.

I hear you...... I'm still tender in places from my op and chose to pospone my 2nd which was to be performed just before Xmas. I need more sufficient recovery time and to see better results from the previous op before I go ahead and agree to the 2nd. The thoughts of having the other side done fills me with absolute dread. I have another consultation with my surgeon on the 19th Jan so I will keep you all posted as to the outcome.
KEEP STRONG, TOS people.:winky:

The thought of a second surgery fills me with dread! But although I am still in pain it is better than it was pre op where I had practically no use of my arm.
I will admit when I saw my surgeon it was pre flair up of pain...
I wanted to get them over and done with so I can get on with recovering.
Did your first surgery go smoothly? I was in hospital for 9 days then back in 2 days later for 6 days :( i really hope it goes better this time, he said such complications are very rare...
:)

hi joanna81,
its good to speaK 2 someone closer to home.... in a strange way it makes me feel more supported that I'm not the only one on home ground going through this rotten TOS journey ( there seems to be so few of us here in the UK!!!). I suppose the surgery went as good as it could have but unfortunately I'm still suffering in the thoracic region. Alot of tenderness near my collarbones/ neck and arms etc on use.
Why did you have to return to hosp after 2 days?
Mine wasn't perfect either as I had an extreme reaction to the pain relief meds (diclofenac..... terrible stomach pain and wicked nausea) almost worse than the surgical incision! I thought that I was hard done by because of being in for 6 days, you was much longer.... what happened?
I too went through the phase of wanting to get it all out of the way but sadly encountered unexpected post surgical depression/anxiety.... which hit me me HARD! I thought that I was in control of my emotions but from no where I lost myself, my post op fear and pain was very real and intense.
I have attended a CBT course since to work on my feelings and due to do a pain management course in the hope to take on board some techniques to guide me....... well, that's the idea anyway. I need to prep myself before going through 1st rib excision surgery again. My sleep pattern is still disrupted from the discomfort from my neck/shoulders etc, so I feel very anxious about disrupting the other side. Time to heal is needed.
Anyway I'm glad to say that in the next few weeks I have follow ups with a neurologist and the surgeon who performed my last op.... watch this space!
I wish you all the very best, but give yourself time to heal sufficiently before another op. Take care and keep in touch. BEST WISHES!!!!!!:hug:

It is, I've never met anyone with the same affliction. **. It is pretty rare.

Ugh... Well after my surgeon did my surgery on Friday he buggered off on holiday.
I had internal bleeding, so the drain kept filling, no one wanted to authorise it's removal as The drain was still draining and they were not my consultant. I needed a blood transfusion early on. I also had fluid around and/or on the lung,so that caused pain and extra difficulty breathing. After 8 or 9 days my surgeon returned and said he was surprised to see me still there :( and said to remove the drain. (In amongst all that was the heamatoma(the bruise was crazy) and severe post op nausea.)
I had another chest xray the next day and was told I cOuld go home !!
I was doing ok then the next day I was having difficulty breathing and they were worried about clOts and infection, so went back in to my local hops( I had the surgery 45mins away as he wAs a specialist and had supposedly done the most surgeries in the country.) ended up on the chest ward with sick people!! It was traumatising. They had no clue about it and had never seen such a surgery I cannot count how many times I was asked why I had a rib removed. I Was there for 6 days had numerous x rays and ct scans till they heard from my surgeon who said all my side effects were normal due to the extent of the bruising and such.

I was so glad to come hOme it was awful. I have depression and anxiety issues already but I manage it all mostly by medicating with pot, which helps with those symptoms and the pain and nausea.
Also still take paracetamol, tramadol and now amitriptaline. Although I try to keep that to a minimum I much prefer the effects of cannabis, it isn't always enough by itself though.

Gosh, ill be impressed if you got through that. I have been thinking about seeking therapy or counselling to try and deal with it all. It has taken a toll on my relationship. I'll be glad when it's all ovEr. It is an intense experience.
There were various neglegancies I need to ensure don't happen again to try and minimise trauma to me.

Oh my gp is also thinkingof reffering me for physio which I think I need.

Take care :) :hug:

Wow.... pretty similar outcome re the breathing difficulties and nausea etc post op.
I should find out this week whether or not I have a place for a pain management course. I initially did CBT for 6 sessions and they then referred me to have an additional assessment with another therapist to see what self help group would suit me best. I would give it a go, if only to learn a few techniques to help refocus your mind when the body is hurting, or just to take the opportunity to release some tension in discussing your pain issues with a therapist instead of aiming towards your partner. I know how the constant mentioning ( which can't be helped ) takes its toll on intimate relationships. Use outsiders to vent and rant on about the aches etc. That's the good thing about this forum. When you hurt......log on.
I stay clear of pot purely due to the fact that I have worked so hard quitting smoking ( 3 years now). I think that being smoke free has also helped me with feeding my body more oxygen>>>>> better blood supply to my extremities...... I also suffer from Raynauds Syndrome. However I have noticed that I have upped my drinking alot more and I find that when I'm hurting I turned to a few glasses of red instead of meds......I guess that's another vice to kick now!
I'm seeing my neurologist today, a post op update. I'm definitely going to ask about physio, I'll let you know of the outcome.
How are you feeling now?
Take care, best wishes!!!!!:hug:

Quick update..... just got back from hospital visit with my neurologist today. Good news, I'm going to get extra tests done to rule out/check ongoing symptoms post op. There's a possibility that my hands still go numb at night due to carpal tunnel??????? I've been referred for extra EMG tests and to recieve Physiotherapy.:D
The physio is definitely needed for post op tightness and ongoing issues associated from TOS, my shoulderblades are so tender at the moment and tight which is creeping up to the neck etc.......... I need those muscles relieved!!!!!!!!!!!!!!:eek:
Best wishes to you all!:winky::grouphug:

Hello - I'm from Nottingham and was diagnosed with Neurogenic Thoracic Outlet Syndrome late last year. I thought I would post on here as it looks like UK TOS sufferers are rare species, although perhaps there are others out there who haven't been diagnosed yet. I know it took me a while, and I feel fortunate to have found a doctor who was familiar with the condition.

I'm 26, I'll be turning 27 the day before my surgery (which is on the 26th March). I've long had problems (stiffness/weakness/'thin-ness') with my right hand, and various cold pains in my right arm and upper back. I'd put it down to a combination of sport injuries and a fall on my wrist I had many years ago. After speaking with many doctors, and some nerve tests in my hand that didn't get to the root of the problem, I eventually gave up on there being a particular cause or any treatment.

Then I noticed about 18 months ago, that the muscle was wasting away on my thumb - eventually I was referred to a hand specialist in Derbyshire, although by the time I got to him the atrophy on the base of my thumb was quite severe. I'd lost over half of the mobility in it as well. This specialist sent me for more nerve tests, but this time also in the neck and upper arm areas (not just hand)

So what I thought was a hand injury turned out to be something I hadn't expected at all. I went for an x-ray, which confirmed I have a partially formed cervical rib - I've obviously had it all my life but never knew. At some point, either from an injury, sport (tennis), over-use or combination of factors, this sharpish cervical rib 'piece' has started to press down on the nerve quite considerably. I also have a significant amount of scar tissue going down my chest (I'm not sure if this has played a part in any problems - I'm seeing him next week to answer a few questions I have)

He made me do the 'East Test', whilst measuring the oxygen going down my arm, and it dropped to around 60% within a minute - which he said was the lowest he'd seen. It was a bit surreal, but he was quite honest that surgery was likely going to be the only way to prevent my thumb getting worse. From the severity of the oxygen test (and the atrophy already), I do see it as probably my best shot. My doc does hope to recover the last year of mobility in my thumb, but I'm going in with cautious expectations.

Hopefully I won't suffer post-op as much as those who have first rib resections - it's probably fortunate I don't have a fully formed cervical rib too.

I did like that the specialist described my attempt at a cervical rib as being like a 'council which laid down the cement but never built the house'

Another UK TOS
 

Hi

Not been on here for ages as I've had problems getting logged in to NeuroTalk but I too am based in the UK. There don't seem to be many of us but a few others have posted over the years I've been on here (since 2008). I've posted previously but basically had both neurogenic and arterial TOS which took a long time to get diagnosed - and didn't until I saw Prof Bernand (now retired) at Guys and Dr Holmes (great neurologist at Guys&Thomas). Was living in Glasgow but now in London. Had my first rib resected in August 2008 which made a huge difference. The surgery made a huge difference to me but I have developed some scar tissue which has left me with chronic neuropathic pain but surgery was still the right decision. Good to hear others experiences too and if anyone wants any information about what I've learned over the years about NHS/meds, just let me know!

Jenny

Good luck with the surgery :)

There are not many of us here in the UK. I live in the north west, I went to uni near you!
We share the same birthday! Poor you having surgery around then :( Though not sure if I will be up for much at that point either...
I am about 7months on from my first op and 7 weeks on from second.

Do try and prepare for the surgery knocking you for six, even if it goes very well.
If you want to talk, feel free to pm me :)

Take care

I'm in Medway in Kent. I had 1st rib resection and ant scalenectomy in Sept then problems with my lung and bleeding/clots led to drains and further surgery 2 weeks later. I'm still off work and am still having neuro symptoms :( however I am much better as arterial symptoms have gone and gabapentin and nortriptilyn deal with most of the pain.

hi

Sorry to hear about your experiences but glad you're starting to make progress. For me, getting rid of the arterial symptoms made a huge difference but the neuropathic symptoms are hard. I found working on most meds for them was tough as I felt so tired. Now on duloxetine which my neurologist is using increasingly and it's made a huge difference so worth considering if you too get quite a few side effects. It's only just starting to be prescribed more for neuropathic pain (licensed for diabetics with pain or at higher doses as an anti-depressant).

Hope you continue to improve

jenny