Possibility of TOS?

[kelly143o0x]

Hi,

I recently came across your website and I was just wondering would it be common for a 16 year old female to have TOS?

I am wondering beacuse back in May I woke up and I couldn't close my left hand.I had pain shooting up my arm and down my shoulder. Later that night my left arm was completely cold, numb, tingling,very discolored, and I wasn't able to move it. I went to the ER they gave me a cervical spine MRI, ultrasound to rule out bloodclots, and I didn't have a pinched nerve or a bloodclot. After seeing my primary care doctor to get the results from the MRI  I was sent to children's hospital ER and they had me see a neurologist and they took blood to test for RSD. I spent from 7pm-5am there, and during that time I was starting to get the feeling in my hand back and I could slightly move my fingers .My arm remainded numb and discolored, cold etc. for about a week.

The ER @ Children's referred me to the Pain Clinic. When I saw the pain clinic the doctor said she believes I have Ulnar Naralygia. When I saw her my arm was back to normal, it would just get color on occassions but never completely numb like before just tingling if I did certain things.

I was sent to occupational therapy where they tried ultrasound and deep tissue massage but I was not able to have them do it because it was very tender and I was in so much pain.  So after 3 visits there they said there was no use going because I couldn't handle it. So we discontinued it until I went to see the doctor.

The Occupational therapist talked to the Physical therapist about what was going on and he came up with a possibility of TOS. When i went to see the doctor she said there is no way you have TOS, and just said I don't have it without even checking, tests nothing. The PT said it looked and felt like I have an extra rib. The doctor I said simply just said you don't have an extra rib, with no xrays nothing.

Now the pain is down my arm, up to my neck and down my shoulder and has no started to go down my spine to middle of my back. It is now going onto my right side as well. It is now Oct.. and we have no diagnosis.

I had an EMG done but the lady that did it stopped at my tri-ceps because she said theres no need to waste time. That EMG came out normal, but my PT was not happy with that because he wanted the EMG to be on my whole arm, neck and shoulder. The doctor from the pain clinic simply said you don't need an EMG, there's no need for one so I had to have my primary care order one.

The doctor from the pain clinic just tells my therapists that I have a pain syndrome, and to top it all off she is never in the office and never calls my PT back.

The Pain Clinic Dr. has given me the diagnosis of ulner naralgia and a brachial plexus injury.. I'm not confident in these at all.

I do know that I have bad posture, and a height difference in my shoulders.

I was just wondering if this could be a possibilty, just by reading my story, and also if a 16 year old could have TOS??

If you have any questions about symptoms, or anything please feel free to ask.

Thanks for your help!
Kelly

[kelly143o0x]

So I went to the doctor's today after yet again an unsuccessful 2 months at PT. He told me that the surgery is a big deal and that I would go home next day and for about 2 weeks it would feel like I have a broken rib. I am pretty much up for anything at this point, after having ACL reconstruction and a lateral release on my left knee I think i can handle anything at this point. I am just scared of being in so much pain. Did your daughter get headaches in the back of her head? I have been getting constant headaches and my neurologist has given me valium but I have not taken it seeing it is not exaclty something you give to a 16 year old. I am now just trying to get as much information on this surgery as possible.

Thanks

[havehadenough]

Good luck - hope everything works out.  my home is weepulls at america online.  Keep me updated

[kelly143o0x]

Thank you so much for your help! I just came back fromt he Doctors in Boston and he said Yes you do have thoracic outlet, thank god some answers! I am being sent to PT for 2 months and if that doesn't work then surgery will be considered.

[havehadenough]

Well, part of it was painful.  The first one - just he rib was a piece of cake.  She went to the movies and out to dinner the next day.  Her muscle removal was painful.  She couldn't lie down flat and slept in a recliner for about 5 days.  Then she found a way to roll into and out of bed.  It took about 10 days to be in tolerable pain.  The last surgery was the worst because she had the rib an muscle done at the same time.  It took a little over 2 1/2 weeks and she was in her firs semester of college.  The incisions for the rib are in the armpit and the muscle in along you neck - along where you'd wear a necklace.  If you didn't know she had surgery you wouldn't notice the scars.  In fact they're pretty invisible now.  By the way, she spent only 1 overnight stay in the hospital for each surgery.  Hope this answers your questions.

[kelly143o0x]

Thanks,

that email got **'d out. I went to see the hand specialist and he said that he could give me a cortisone shot and see maybe if that helped but he said it would kind of pointless without a real diagnosis. but he referred me to a TOS specialist in boston which is great finally some doctor that believes i may have it. I see him the 19th and i am seeing the neurologist on the 15th so hopefully these two doctors are a great deal of help.
was the thoracic surgery extremely painful and hard to go through?

[havehadenough]

Well, like you her PT diagnosed first.  We did go to an orthopedic who preformed nerve conduction tests to prove the TOS.  She felt tingling in her arm down to her fingers.  Couldn't raise her arm without being in pain, her pulse diminished, the hand was colder than other parts of her body.  She had to "hold" her arm in a sling fashion with her sweatshirts.  Meaning always putting her hand in the pocket.  She went through many tests, x-rays, and an MRI.  They showed the compression of her nerves.  The symptoms started in September, in February she was finally diagnosed and ended having surgery in June.  During this time she may as well not have had a hand, it was totally useless.  The PT's are usually correct in their opinions.  We also did quite a bit of research about TOS.  The paralysis issue is a nerve problem not an orthopedic one.  I would insist on seeing a vascular surgeon if possible.  Her is the e-mail for our surgeon, maybe he can recommend someone.  ***@****.  I know it's frustrating, hang in there!

[kelly143o0x]

I live in MA. I found two specialists in TOS that we need to call to make an appointment. It is the most frustrating thing because the 2 doctors i have seen have just told me i have a pain syndrome. I have also been told you may have RSD, brachial plexus injury, ulnar naralgia, TOS ( which my PT is convinced i have) and carpal tunnel. I'm going to see an orthopedic hand and shoulder surgeon this week. Was trying to find an answer stressful and a pain for you? I feel like everyone I've gone to isn't helping or trying to say oh you should see this person just leaving it at, u have a pain syndrome.. it's nonsense. What were ur daughters first symptoms of TOS? was her arm completely in paralysis like mine for a week?

[havehadenough]

Yes Kelly, she had pains into her fingers.  She didn't have an extra rib, it's the rib that is just below our collar bone.  It was removed but the muscle reattached and caused her symptoms to return.  A chiropractor didn't help her.  Acupuncture may work for you.  The dr.'s name i gave you is a TOS specialist and has never scene a case like my daughter.  Anything that could happen did.

[kelly143o0x]

thanks for commenting. The x-ray came back and I don't have an extra rib. I have been looking into a vascular, and a couple dr's that specifically study TOS. I have also heard a chiropractor has helped. Did you daughter have shooting pains down to her ring finger and pinky finger?

thanks
kelly

[havehadenough]

Yes Kelly it's possible to have TOS.  My daughter had 3 surgeries for TOS on both her left and right sides.  Her first surgery was at16 years old sh'e now 19 and her last surgery was last October..  If you're in California go see Dr. Gelabert at UCLA - he's a vascular surgeon and is absolutely terrific.  If you have TOS pain meds and therapy probably won't work.  My daughter had her first rib and scalene muscles removed and has been fine ever since.

[kelly143o0x]

one more thing the Pain clinic doctor has also said that i have fibromyalgia. she keeps giving random diagnosis.