[hamisa]

Hi everyone! New here....

6 years ago after my daughter was born I starting having right arm pain. I was using this arm to feed her and she was sleeping in my right forearm everynight for about 3 months. I developed a bump on my right/hand wrist so I went to a Hand Surgeon, he tried a few cortisone injections and then did a tendon release and shaved off some bone spurs. Pain still persisted.

I saw another Hand Surgeon who did a wrist arthroscopy and found 3 torn ligaments which he repaired with wires. Again pain persisted. He moved out of state so I saw a 3rd Hand Surgeon who thought it might be radial nerve entrapment because alot of my pain was in my forearm. Radial nerve release surgery and no pain relief again. I gave up. I saw pain specialist who did a nerve block thru my neck, no pain relief and offered me methadone, I declined. The past few years my should has become extremely painful as well.

Im not able to wear a bra stap on that shoulder because it increases the arm/shoulder pain. I also cannot sleep on my right side. My right hand is always cold/freezing feeling and my hand/fingers are swollen 24/7. The swelling increases even more with heat. My pain is constant things that make it worse are brushing my hair, doing my makeup, cooking/stirring, writing, lifting, holding anything, computer use, swimming. Basically any movement of my arm. I've tried every nerve medication with no relief. I cant take this anymore. An online doctor suggested to me I get checked for TOS. Im not sure who I go to get diagnosed/tested???

[Jomar]

We have a Drs & PTs sticky thread with listings that might be of help.
http://neurotalk.psychcentral.com/thread135.html

Or post your area and if any are nearby members will reply back..

But many of your sx sounds very familiar...

[hamisa]

Thanks!!

I live Kirkland, Washington. Near Seattle. I work in a hospital and I know there is a group here at the hospital Eastside Vascular Dr.Ombrellaro and Dr.Rubin who specialize in TOS but Im not sure if I can I can just randomly make an appt with them... They are vascular surgeons.

Im wondering how or by what type of physician do people get evaluated/treated for this????

Im not sure if this is important but I did break all but 2 ribs in a car accident but that was in 1997.

[hamisa]

My shoulder pain is mostly above the space above my collar bone between the shoulder muscle and then over my shoulder blade.

I tried the test where you put your hands up and and squeeze your fists for 3 minutes and I could barely get past 60 seconds because it hurt so much.

[Jomar]

An appt would depend on your ins coverage and if you need a referral to those drs. So check that part out, and if no requirements/referrals are needed I would go to one of them and see what they think..

But yes vascular surgeons are usually the ones to dx & do surgery if required, especially if they know TOS well.

[20YrsTOS]

Originally Posted by hamisa

Hi everyone! New here....

6 years ago after my daughter was born I starting having right arm pain. I was using this arm to feed her and she was sleeping in my right forearm everynight for about 3 months. I developed a bump on my right/hand wrist so I went to a Hand Surgeon, he tried a few cortisone injections and then did a tendon release and shaved off some bone spurs. Pain still persisted.

I saw another Hand Surgeon who did a wrist arthroscopy and found 3 torn ligaments which he repaired with wires. Again pain persisted. He moved out of state so I saw a 3rd Hand Surgeon who thought it might be radial nerve entrapment because alot of my pain was in my forearm. Radial nerve release surgery and no pain relief again. I gave up. I saw pain specialist who did a nerve block thru my neck, no pain relief and offered me methadone, I declined. The past few years my should has become extremely painful as well.

Im not able to wear a bra stap on that shoulder because it increases the arm/shoulder pain. I also cannot sleep on my right side. My right hand is always cold/freezing feeling and my hand/fingers are swollen 24/7. The swelling increases even more with heat. My pain is constant things that make it worse are brushing my hair, doing my makeup, cooking/stirring, writing, lifting, holding anything, computer use, swimming. Basically any movement of my arm. I've tried every nerve medication with no relief. I cant take this anymore. An online doctor suggested to me I get checked for TOS. Im not sure who I go to get diagnosed/tested???

Hamisa, thanks for sharing your story. First, i'm sorry for all the pain you are experiencing, believe me, i know what u are going through. if you have a chance, read my story. i've been dealing with TOS for 20yrs or more. Had two previous surgeries, and possibly a third one. So i've been through all the nerve medications and block injections. But nothing worked. Personally I believe your symptoms of TOS. You should see a vascular surgeon, and possibly a neurologist. I would try the vascular surgeon first. Don't wait on this, because it could get worse. Please keep us updated on your situation. I'm praying for and with you. I hope you feel better. If u could, try and stretch your arms at times. God Bless!!!!

[hamisa]

Thanks! I read your story... yikes 20 yrs I cant even imagine.... I hope you find the relief you need soon! Trust me I understand the merry go around of doctors. Im currently 9 weeks post-op from a Transmastoid Mini-Craniotomy (inner ear/brain) surgery. I was on bed rest the past year, saw 11 doctors in 9 months and ending up self diagnosing myself with 2 rare vestibular disorders. Strangley, after reading through my CT/MRI reports I started wondering if my arm/shoulder pain was actually cervical or TOS. Then 2 doctors mentioned it to me. I read thru a paper by Dr.Sanders and I felt like he was explaining my pain to a T. I just dont know if I am physically/mentally ready now to take on another search about the pain. The 3 arm surgeries left me depressed and the recent serious vestibular problems have drained the life out of me. Although, thanks be to God I am almost 90% recovered. Im tired of doctors and tests and finding out the doctors were wrong and I was right. Now I know why they call it "practicing medicine". I feel like its either find out whats wrong or chop the arm off cus Im tired of the pain. Im only 37, have 2 daughters, work but this pain has left me feeling like half the person I used to be. I always devide my life into before and after pain. Thanks for listening.

[Jomar]

We have many posts and other sticky threads on self help and various therapies.. maybe something there will be of help while you take a break from drs.....

[20YrsTOS]

Originally Posted by hamisa

Thanks! I read your story... yikes 20 yrs I cant even imagine.... I hope you find the relief you need soon! Trust me I understand the merry go around of doctors. Im currently 9 weeks post-op from a Transmastoid Mini-Craniotomy (inner ear/brain) surgery. I was on bed rest the past year, saw 11 doctors in 9 months and ending up self diagnosing myself with 2 rare vestibular disorders. Strangley, after reading through my CT/MRI reports I started wondering if my arm/shoulder pain was actually cervical or TOS. Then 2 doctors mentioned it to me. I read thru a paper by Dr.Sanders and I felt like he was explaining my pain to a T. I just dont know if I am physically/mentally ready now to take on another search about the pain. The 3 arm surgeries left me depressed and the recent serious vestibular problems have drained the life out of me. Although, thanks be to God I am almost 90% recovered. Im tired of doctors and tests and finding out the doctors were wrong and I was right. Now I know why they call it "practicing medicine". I feel like its either find out whats wrong or chop the arm off cus Im tired of the pain. Im only 37, have 2 daughters, work but this pain has left me feeling like half the person I used to be. I always devide my life into before and after pain. Thanks for listening.

Wow, thanks for sharing your story with me. First, I'm so sorry for all the things u have been through. I'm 41, and have been dealing with this through my young adult life. I've had to stop school, because it was hard to write. I've been fired from jobs. The list goes on and on. Yes, I do agree, they are practicing medicine. U don't know what some of the doctors have put me through. But, it's a blessing to hear your story and others, because when we think our situation is bad, someone else is dealing with a worse situation.
Both of my arms are affected by this TOS. I was told about a month ago, if I don't have surgery soon, I could lose both arms. But I'm not afraid, my life is in the LORD's hands. Just like yours. Your daughters are seeing a fighter, and u are a blessing to them. Trust me, I know it's frustrating. I've been saying and thinking about the same thing u stated. So I know what u r going through. Just know, we may not understand it right now, but there is purpose behind all of this pain we are going through. Just keep fighting, and keep holding on. Keep fighting and hold on for your daughters. They need u.

Thanks again for sharing your story. If u ever need to vent, I'm here to listen. May GOD bless u and your family. I'm praying and believing for your healing.

[Sheri_TOS]

Originally Posted by hamisa

Thanks!!

I live Kirkland, Washington. Near Seattle. I work in a hospital and I know there is a group here at the hospital Eastside Vascular Dr.Ombrellaro and Dr.Rubin who specialize in TOS but Im not sure if I can I can just randomly make an appt with them... They are vascular surgeons.

Im wondering how or by what type of physician do people get evaluated/treated for this????

Im not sure if this is important but I did break all but 2 ribs in a car accident but that was in 1997.

Hamisa,

I've had both 1st ribs removed and Dr. Ombrellaro did both surgeries. The 1st one was about 10 years ago after I developed nTOS from a car accident. The other side was operated on for arterial TOS. Each side had it's own surprises as I had underlying bony abnormalities involving each rib complicating the surgery.

In my experience, the surgeons prefer you to have a referral from a doctor, specifically a physiatrist (physical rehab medicine doctor). I've seen a couple of physiatrists in the past 10 years and the one that I'd recommend is Dr. Seroussi. He's in Seattle but he treats a lot of TOS patients and gives talks on TOS.