UK members?
 

Just wondering if there are any UK members on here who can recommend any TOS specialised dr's/therapists!
x

UK
 

Hi, I live in the West Midlands, great to know theres some one else out there from the UK! I'm afraid my consultant isnt much good, so I would be interested in finding any other specialists too. Whats your story?:)

Hi claire marie,

i have just pasted this in from my first thread (being diagnosed with TOS) as its a lot to retype!.

just over 3 years ago i was healthy and never had any probs with my arms....then i fell down the stairs and landed directly on my mid back and jolting my neck too.

about 6 months after this i developed pain in my right thumb - couple of months after this started, this nagging dull pain developed in my right shoulder blade....more symptoms slowly came after this (all on the right hand side) :

little finger is wobbly and feels like it doesnt belong to me - kinda numb feeling
fatigued arm - feeling heavy
coldness in shoulder blade and right hand - sometimes this can change to hot feeling, but more often cold!
some muscle wasteage in right hand
right hand changes in colour - nail beds can go really purple if i get a bit cold
neck is weak - feel like i cant support my head
cant look downwards for anylength of time as it hurts!
cant sit up unsupported for very long
right collar bone has protuded and feels very bony these days - it aches and pain shoots up towards my the front of my neck and jaw.

the list sometimes seems endless!

i left an office job because of the pain, im on my 3rd doctor now and have had x-rays, MRI's (with and without contrast), my pulse dimished on the adsons test, tender on lower C/upper T vertebrae, also doc pushed on something next to my windpipe which almost made me cry with pain!.

from what i've read i think i may have vascular form of TOS?....help please - im finding diagnosis very difficult!


i live in croydon (surrey) and was seeing a rheumatologist for a couple of years who completely disregarded my PT's diagnosis of TOS....i didnt really know enough about it then to argue with her!. The more i researched TOS, the more i realised it is likely that i have it. So i booked in a private consultation with a comp called London Pain Consultants...saw a pain consultant who has an interest and has treated TOS, he was good and also agreed its most likely TOS....he then referred me to Professor Carlestdt privately, who then took me on as an NHS patient.

That is who has referred me for the MRA that im having on friday!

Whats your story?
x

Hi Tracey (again) and ClaireMarie. Well that'll be 3 of us in UK so far. I am sure there were some more,but that was a while back. My story should be in an old post but cannot remember if rewrote it when the forum restarted after something went wrong with the original site.

I will post to you soon. Not too good at present.
Re cold hands - I found a website Heatbands, for some wrist bands that aimed at Raynauds sufferers to help with keeping hands warm. I have just had a trial pack so will let you know, I hate the ice blocks I have for hands along with the lovely colour changes. Groovey --Not!

Take care.
Hx:)

UK Members
 

Hi Tracey and "Horizontal One"!

Oh where do I start? (trying to type with freezing cold hands!). Mine all started just over 6 yrs ago. I had shoulder/neck/arm pain. Went to Gp. Told it was frozen shoulder - had some physio! That didnt work so refered to consultant in orthapeadics - told it was impingement of the rotator cuff, had steriod injection and more physio. That didnt work so had arthroscopy and more physio. That didnt work so had acromioplasty (subacromial decompression) basically where they take away some of the bone on the rotator cuff. Had more physio. That cured that part but still in pain so my consultant gave up on me and refered me to another for a second opinion. He did Adsons test and I had no pulse in either wrist and he declared I had TOS. That was 2yrs ago now and I'm still having investigations. I was then refered to a vascular surgeon who is on the conservative side of diagnosing TOS. Here are my symtoms:
- Toothachey nerve pain from ear down neck, down shoulder to hand.
- Sharp stabbing pains through middle shoulder on movement/reaching out.
- Freezing cold hands, nails often turn purple/blue.
- Swollen/hot/burning white hands when walking/holding arms down for time.
- weak/clumsy hands (broken loads of cups & plates)
- low blood pressure
- Nose bleeds
- Unable to sleep due to uncomfortable and pins/needles numb hands
- headaches/migraines
- neck pain
- dizziness
I have had ct scan which showed compression of the subclavical veins so I assume I have both vascular TOS and the nerve type. But my consultant is still unsure that I have TOS!!!!! Going to see him soon and put him straight. Have had botox injections with varying success so I can only assume that surgery may be on the cards as they told me 2yrs ago. We will see. If not I am told my pain can be "managed" through pain clinic. Great prospect. I had to give up work 2yrs ago (I worked in a bank) as it was just too much/stressful. My husband and kids must be so fed up with me moaning and its hard not to let TOS become your "job" so to speak. One of the hardest parts is not to be able to join in things with your kids like any sports (badminton, bowling,etc) and that TOS is an invisable illness. Enough of my ramblings I need to go but keep in touch.

Clare

hi clare & helen,

i cant believe that they still havent given you a firm TOS diagnosis - espcially with the adsons being positive and the CT scan detailing the compression!.

im hoping this professor carlstedt is going to be the one who finally diagnoses me...if not then my search for someone who can will continue!.

i left my desk job as it was too uncomfortable - no one there understood, a lot of people on my team thought it was all in my head and would often talk about me when i was away from my desk (this was really distressing for me as it was just about all i could do not to cry due to the pain/fustration and really didnt need that too!) i now work in a school, no typing which is great, but still find it hard sometimes - eg, looking down at the kids books etc.

have either of you pursued a compensation claim?. im going to look into this as if this is a life long condition (which possibly worsens with age!...im going to be 27 this year!) then i may need to do this!

x

Hello, I'm not from the UK but I ran across some info as I was exploring a page about Repetitive Strain Injury Support Groups. While they don't have one listed on the site ( http://www.tifaq.org/information/supportgroups.html ), they did have this info:

help in the uk
 

hi,

i'm in the uk. having a big flare-up at the moment, so shouldn't be on here. wondered if anyone had outside help with day-to-day things. finding it impossible to get my daughter ready for school / prepare meals / shop for clothes, etc. have a housekeeper for 2hrs a week (feel useless not being able to do that as well). partner and i are going to relate (not now, coz of flare) so can't put more on him.

don't really know where to turn. feeling so useless as a mum. worried my daughter will be taken into care, coz can't wash her/clothes/feed properly/school at the mo.

i don't yet have tos diagnosis, just axonopathic brachial plexus and spinal accessory lesions, although the symptoms are just so unbelievably what i wrote down about my symptomatology nearly 2 yrs ago. so don't know how to explain the difficulty in using the arms. there i go again, typing too much...

Welcome to NT to all UKers

It's a small world after all!!

There's lot of helpful things to try.

Kinesio Tape, reflexology, infrared and LED lights, Mirable Ball Set, Theracane, pillows, stretches, yoga, relaxation techniques/breathing, inhale water, viatmins, PT, nautropathic healers.

Hubby and I bought new washer and dryer/front loading, and put it up on a pedestal, with box holes cut in the bottom to fit/store laundry baskets that I can pull in and out with my FEET.....

TOS is difficult to live with.

I think a few have gotten helpers , but some had to go thru workers comp & a few paid themselves.

I don't know what the rules would be in UK for how to request helpers.
No neighbors or teens close by that would help for a bit of cash?

How old is your daughter ?
I had a severe rsi in 99 and my kids had to all start doing their own laundry.
I came up with very easy meals- casseroles big amounts so lot of leftovers to warm up later, sandwiches & more fast food than we should have eaten , but when you can't do anything with your hands...they just plain didn't work for about 2 weeks.

hi to you all
I'm in the UK too - based in Glasgow but in the end went down to London for my surgery as wasn't able to cope up here on my own and needed family support. My surgeon has retired now but my neurologist is still working at Guys&Thomas'. Unfortunately for me my vascular TOS was entirely sorted by removing my rib but have recently developed scar tissue again around brachial plexus so back on the meds although just about managing to work full time still.
In the UK, your GP/specialist should be able to get an OT (occupational therapy) assessment as to gadgets you might need and also what help you might need to adapt home/extra support with carers etc. You can see them privately too if you want to know about what ideas exist for you. What you can get on NHS depends on income as would count as personal care, i think. For people in UK, all comes down to getting someone supportive on side.
Hope this helps - be interesting to catch up with other people's experiences as I have found this forum invaluable
Jenny

hi uk
 

what helped me at work was a pt who listened better than my doc, and recommended a drop keyboard and kinesis contour keyboard. the doc was useless unless the pt told him what to do. i also learned to mouse on the left and set up the chair and desk more ergonomically. i used handicapped keys for a time to do clicks and double clicks but this caused a software glitch called killer blue. a side effect was this brought all of the mean people into gossip overload and i overheard and even read some of it. i could take the pain and not cry, as i was used to being in pain. i have a hard time not crying with bullies though. and it is even worse when the bully is a doctor or in computer tech support (my name was PEBCAC to them, Problem Exists Between Computer and Chair).

i also took a demotion which involved less keyboarding and mousing. that too helped. later i got promoted again and had a job where i could get out of the office and drive to job sites. that was great. i could get out and do a lot of walking on the job too.

the job this started on was like being on an assembly line with a computer, as the work rolled in and you had to try to keep up with it and still do a good job. i responded to alarms which continued to roll into my screen. i worked nights and sometimes was forced onto 16 hour shifts, where i still had to work 8 the next day with only a few hours of opportunity to sleep. i am a perfectionist so i worked really hard. the doctor i had was really bad, but the ones i knew who were good did not accept workmans comp cases for love nor money. as a survival instinct i learned to lay the blame for my repetive stress on off the job injuries.

i am in texas but i love to watch british tv on public tv. my favorites are eastenders and dr who. welcome and i hope you find some help here.

hi market risk!

if you live in the Uk like me then you'll be able to claim for disability allowance if you need help with care due to disability (TOS or any chronic pain is a disability if it stops you being able to function your daily chores such as shopping, cleaning etc). Check out this website.....

http://www.direct.gov.uk/en/Disabled...ce/DG_10011731

Im sure that your daughter wont be taken away from you - try and get the financial help you are ENTITLED to so you can get some support - I believe you can even pay a family member with the funds you receive....

I live at home still so get a lot of help with the things I need....im also fairly functional still as long as I pace myself and dont attempt the things that I know will make my pain flare up......this may all change though if i ever lived on my own!

take care