[Jomar]

I had time to place copies of the newest members posts here on the main TOS forum thread list.


It works best to carry on the conversations on those threads.

here is the main TOS thread list- you can find your threads there in the list
http://neurotalk.psychcentral.com/forum24.html


New members can make a new thread here-
http://neurotalk.psychcentral.com/ne...newthread&f=24

[loranne]

Hi

My symptoms are very hard to live with. Dr diagnosed TOS but I don't have any venous impingement.

I have svere muscles spasms in neck such that if I recline my head back a little or try to lie back it feels like I am being strangled. My nights are spent sitting up in recliner with very little sleep.

They trigger off daily migraines as well. I also have have been mostly bed or housebound for 30 years with ME/CFS and I think my bad posture from this has caused the TOS.

I do wonder if I have TOS or just muscle spasms.

I have been having physiotherapy, massage, chiropractic and will try acupuncture next. The scalene stretches make it worse.

Feeling desperate as I can't tolerate many medications which may help. Its been interesting to read of everyones experiences.

Loranne

[charlynne]

Hi my first time here I'm from South Africa Cape Town . I'm 45 was in an work related m v a in 2005 had a neck fusion c4 c5 in 2006 had ongoing PT for 2yrs. My neck could still not move around a lot ,lame weakness feeling in my left arm. When I would carry anything even a book I would get a pulling from my neck down my arm. The dr said operation successful but my body said otherwise. Then in 2008 I was rear ended at a traffic light and my symptoms got worst, I had a shoulder op after a year of PT. Then I got a frozen shoulder which was a nightmare every for almost 2yrs ,had a manipulation of the arm/shoulder under anesthesia and countless hrs of PT everyday for abt 3mnths. I would cry like a baby at these session. I was discharge eventually coz PT just did not help for me. In 2011 I was diagnosed with possible TOS. Every day living was hell when I had to get up for work. My morning would start like this, wake up @ 04h30 lay and recover in bed coz my head would be heavy at the back , neck would be stiff, fingers pins and needles. 05:30 I would eventually manage to get out of bed most of the time it would be with my husbands help. Then I would sit a while in an armchair. Now I would get ready for work. Some mornings I could not get done on my own and my husband or kids would assist me , this made me vey depressed ,getting to work would be another battle, public transport was horrific , coz it was a very bumpy ride. I would get to work eat and have a heap full of pain and muscle meds. Now I'm at home for 5mnths and life is much better if I don't overdo. My mindset is also much better although I have my off days but the antidepressants do help a lot and if you have a strong support. My pain,lame tired feeling in my arms, heavyness in my head pins and needles in my hands and the feeling of insects crawling in my arms is still here with me everyday my life is a little easier. We will see what my outcome is for disability in July 2012. Sorry I tried to give a short version of what I have. Hope to hear from you guys thanks

[Limoges]

Hello! I've been reading this forum for weeks now. I've had TOS for over 30 years. I've been to every possible type of doctor who could find no reason for the pain I had. Over the holidays I was having arm spasms, so I did some surfing and came up with a chart that showed exactly where I'd been hurting all these years. I looked into TOS, gave Dr. Dean Donohue a call on the off chance that this is what I had, and went in for a visit. After going to physical therapy almost every other year of my life and feeling like a complete crazy person, he found that my first ribs have congenital abnormalities that are likely the cause of my pain.

I'm nervous about pursuing surgery, especially with two kids and a husband who isn't a great caregiver. Being home bound and unable to drive also seems pretty tough. But, the pain is dreadful and has affected my quality of life.

I swim almost daily and do pilates (not well at all, but I enjoy it). I worry that lying around for a few months will result in depression, which I'd like to avoid.

Anyway, that's all I've got! Thanks for listening and thanks for sharing your stories which have helped.

[Ldraper]

On Jan 13, I had surgery for right side TOS. I am 43 years old and teach Kindergarten, but the pain from TOS made it impossible to work so I took this school year off to try to get my symptoms under control. I was scared to death to have this procedure, especially after reading some of the posts on these forums. My symptoms started 5 years ago, but it wasn't until 18 months ago that I got the TOS diagnosis from a neurosurgeon. I went the conservative route for 16 months with symptoms getting worse and finally decided on surgery. I am lucky enough to live 25 miles away from 2 excellent neurosurgeons who each perform an average of 4 rib resections per month, so I was in experienced hands. My surgery was performed by Lynn Gaufin in Provo Utah. Before the surgery I was diagnosed with neurogenic TOS, however during the surgery the surgeon found that the subclavian artery and vein were also being impinged by the first rib, and that there was excessive scarring between the scalenus mediums and brachial plexus. The first rib was extremely wide and acted as a shelf with the artery running across it and then dropping off. As the Dr said, it was a real mess in there!The first week post surgery was rough, especially since I had 2 allergic reactions to 2 different painkillers. Last week I decided to just do 3200 mg ibuprofen and lots of heat and ice. Today was my 4 week post op appt. and I am doing pretty good. The Dr had me do exercises starting on day 3 and now I will start on a couple weeks of PT to help stretch the neck. I can already feel a positive difference and while I know I have a ways to go until I feel like myself I am so glad I did this!

[mitsy]

Originally Posted by law76

SINCE THE OTHER SITE IS DOWN...I GOT HURT AT WORK ABOUT FOUR YEARS AGO..OFF WORK FOR TWO.....ALSO HAVE HERNIATED DISCS IN NECK AND FYBRO...POST-SURGICAL FOR RT SIDE RIB RESECTION.

Hi, I am new here and just read your posts. I too have TOS and am in desperate need of a Dr. that works with Blue Cross. I have been seeing Dr. Jordan but I can't afford him. Do you have any suggestions? I hope you are doing better now.
Thank you, Mitsy

[Anne785913]

I have an extra set of ribs coming off the first rib, because my body did not have space for these ribs the right side pushed into the subclavian artery and caused an aneurism which sent blood clots into my right arm and hand. No accident caused it to happen just the extra rib pushing for space. I was studying abroad so I was not at home to get anything checked out and during this period of time my arm and hand slowly went from tingling and my fingers turning white to looking like I had a stroke. The blood clots were in every vein and artery in my arm and hand. It killed the radial artery leading to my thumb and hand area which had to be replaced with a vein in my leg and if that did not work I would have lost my right arm up to my elbow. They then provided to pull the clots out of all the veins and arteries. Extreme nerve damage was done because everything had gotten to the worst possible point before the surgeries. They had to take a vein from my other leg to put around the aneurism because it was to tangled in with everything in that area that could cause more damage which also meant the extra rib could not be taken out, but it has done all the damage it can on the right side so they say! I am about 7 months out of the surgeries and still feel the healing process at work .

[chroma]

Originally Posted by Anne785913

I have an extra set of ribs coming off the first rib, because my body did not have space for these ribs the right side pushed into the subclavian artery and caused an aneurism which sent blood clots into my right arm and hand. No accident caused it to happen just the extra rib pushing for space. I was studying abroad so I was not at home to get anything checked out and during this period of time my arm and hand slowly went from tingling and my fingers turning white to looking like I had a stroke. The blood clots were in every vein and artery in my arm and hand. It killed the radial artery leading to my thumb and hand area which had to be replaced with a vein in my leg and if that did not work I would have lost my right arm up to my elbow. They then provided to pull the clots out of all the veins and arteries. Extreme nerve damage was done because everything had gotten to the worst possible point before the surgeries. They had to take a vein from my other leg to put around the aneurism because it was to tangled in with everything in that area that could cause more damage which also meant the extra rib could not be taken out, but it has done all the damage it can on the right side so they say! I am about 7 months out of the surgeries and still feel the healing process at work .

Wow! Congrats on getting the arm saved and getting the surgery you needed. Thanks for sharing your story.

[mitsy]

Originally Posted by law76

SINCE THE OTHER SITE IS DOWN...I GOT HURT AT WORK ABOUT FOUR YEARS AGO..OFF WORK FOR TWO.....ALSO HAVE HERNIATED DISCS IN NECK AND FYBRO...POST-SURGICAL FOR RT SIDE RIB RESECTION.

I wrote you a few weeks ago regarding Dr.'s and you sent me the link of them. I noticed you live in L.A. I live in Calabasas and am trying to find a Dr. I can trust. So far I have been to over a dozen. Would you mind telling me who did you TOS angiogram and then surgery? Are you happy with the results? I was seeing Dr. Jordan but can't afford him anymore, I have to go to a Blue Cross provider. Thank you so much for all of your help and info.

Best,mitsy

[laura18]

Hey Im Laura, I live in Ireland and have recently been diagnosed with TOS.
I'm only 18 and have no history of injury..my symptoms started over 6 months ago; left hand EXTREME weakness, coldness and my arm is very discoloured, pain across my shoulder blade and down my neck.
Spent a week in hospital after I was sent in with a possible blood clot : clear MRI and nerve conduction studies showed slight ulnar nerve entrapment at the elbow ( could be present in normal people i was told)
sent home with diagnosis of "possibel trapped nerve" and NO treatment.

Then and osteopath diagnosed an elevated first rib and manipulated it and all my symptoms disappeared- MIRACLE!!
THis continued to happen about 5 more times, and I returned to the osteopath every time this happened!

A month ago it got progressively worse and my osteopath told me he could do no more for me and that I should go the medical route AGAIN!
Went to A&E and finally saw a vascular surgeon.. I had a Doppler scan done and that shows my arteries are healthy thank god..but could not tell if it was being compressed at the thoracic outlet with just an ultrasound,
he found a loss of radial pulse at 180 degrees and put me on LYRICA, ASPIRIN & a vasodilator PRAXILENE..
Saw his colleague two weeks later and he finally officially diagnosed me with TOS.- but he now believes it is NEUROGENIC which is really confusing me.. my arm feels like there is an elastic band being tightened around it and it is soo discoloured and weak..i cant even close my fingers HALFWAY into a fist and it is like a block of ice.. I really believe I am suffering with the symptoms of arterial TOS..

Being admitted next week for an MRI to check for extra rib ( osteopath cant feel one though) CT to check the artery and chest x rays etc.

Im so glad to find people that know how debilitating this condition is.. I cant write, tie my trousers, tie up my hair etc..basic daily activities. And as for the Lyrica..that deserves its own thread!!!
Sorry this is so long..