Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 10-06-2016, 10:14 PM #1
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Default Please help I can no longer take this pain

I have bilateral cervical ribs. I have never had very much feeling on my fingers, so this had been a lifelong struggle. I recently have been diagnosed with a heart defect. I can no longer take antiinflammatories. I was taking 1600 mg of ibuprofen a day. And pretending I was find. I have never had a doctor take this condi seriously. But this pain is unbearable. My husband thinks it it just carpel tunnel, and he has that. "It is not that bad".

My doctor will not give me ANYTHING for pain. He told me to take tylonel. This is not in my head. I am losing function. I can not cool or clean without being in tremendous pain. I can no longer wash or dry my hair. How do I make my doctor understand that I am not exaggerating. I am in severe pain. I can't fake poor pitiful me. I have always pretened i am ok. So it is difficult for a doctor to understand I am as bad off as I am because I am composed and smiling when I speak to them. I don't know how not to be.
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Old 10-07-2016, 04:59 AM #2
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Quote:
Originally Posted by mica View Post
I have bilateral cervical ribs. I have never had very much feeling on my fingers, so this had been a lifelong struggle. I recently have been diagnosed with a heart defect. I can no longer take antiinflammatories. I was taking 1600 mg of ibuprofen a day. And pretending I was find. I have never had a doctor take this condi seriously. But this pain is unbearable. My husband thinks it it just carpel tunnel, and he has that. "It is not that bad".

My doctor will not give me ANYTHING for pain. He told me to take tylonel. This is not in my head. I am losing function. I can not cool or clean without being in tremendous pain. I can no longer wash or dry my hair. How do I make my doctor understand that I am not exaggerating. I am in severe pain. I can't fake poor pitiful me. I have always pretened i am ok. So it is difficult for a doctor to understand I am as bad off as I am because I am composed and smiling when I speak to them. I don't know how not to be.
First of all, if you have cervical ribs, ALL YOUR SYMPTOMS AND FEELINGS ARE NOT IN YOUR HEAD. I really feel for your frustration. I too have cervical ribs bilateral and based on my research women has smaller thoracic outlet than men. Less space = More compression and you have extra rib, even more compression. It's really hard to chill with an inch an a half piece of bone is in your neck on each side. I wish all TOS, like NTOS VTOS ATOS extra RIB ALL TOS. has its own name instead of grouping them all as TOS. because the pain level is vastly different based on your location. Some people have more shoulder and arm pain. Some people have 10/10 headache and choking sensation. Some has under skin and abdomen issue and treatment SHOULD be different as well. May I ask how were you diagnosed with cervical ribs? MRI? Accidental CT? surgery? and where are you from? So we can try to help you with Drs from the sticky list.
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Old 10-07-2016, 10:51 PM #3
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I am 40. When I was in my 20's, I had an x-ray that had "strange shadowing". The doctor was curious so he did several more x-rays and an MRI. I brought to his attention when he informed me that I had the ribs, that I can not feel my finger tips. That I never have. I explained that I could not wear a seat belt without my left are going numb. He didn't take that very seriously, so I thought I was just being silly. Over the last year I have been losing all feeling in my arms. Tingling, numbness, swollen feeling. A couple months ago I started having pain from the back of my shoulder to my hands. Sometimes down my thighs. As of four days ago, I am in so much pain that i can not hide it. I have slowly lost the ability to do house work and such. But four days ago I found I can not brush my hair or preform other personal needs.

I went to urgent Care today. They gave me Flexeril. NO help at all. The pain is severe. I live in middle GA.
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Old 10-07-2016, 10:55 PM #4
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First of all, if you have cervical ribs, ALL YOUR SYMPTOMS AND FEELINGS ARE NOT IN YOUR HEAD. I really feel for your frustration. I too have cervical ribs bilateral and based on my research women has smaller thoracic outlet than men. Less space = More compression and you have extra rib, even more compression. It's really hard to chill with an inch an a half piece of bone is in your neck on each side. I wish all TOS, like NTOS VTOS ATOS extra RIB ALL TOS. has its own name instead of grouping them all as TOS. because the pain level is vastly different based on your location. Some people have more shoulder and arm pain. Some people have 10/10 headache and choking sensation. Some has under skin and abdomen issue and treatment SHOULD be different as well. May I ask how were you diagnosed with cervical ribs? MRI? Accidental CT? surgery? and where are you from? So we can try to help you with Drs from the sticky list.
I also have the chocking and migraines. My doctor told me to chew my food better.
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Old 10-08-2016, 11:19 AM #5
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Seek out a TOS specialist or a skilled vascular surgeon, that has done cervical rib removals.. Don't waste time seeing Drs that do not understand or know about TOS.

The choking part could be from the C ribs , or your 1st rib might be raised up and impacting /crowding your throat even more.. I had that problem without any c ribs..
A very skilled PT guy did a rib mobilization /rib drop technique and it was instant relief..my 1st rib had got raised from severe spasms and got stuck in the raised position.. it really limited my arm use too. After the rib dropped down I was able to drive home without changing arms /positions, and do chores at home without increased symptoms..
So you might benefit from an expert PT or expert chiropractor..especially if they use additional tools and a mix of therapies..
My chiro used ultrasound, trigger point, massage, IF stim, low level laser..also checked overall posture & for uneven shoulders, hips etc...
It must be someone that assesses you each time and does not use a set plan - a set PT plan rarely work as weights, hand bikes and such often make TOS much worse..

Try to be posture aware so shoulders aren't forward, hunched and closing the area more, you might have to experiment to find best posture for you..
Often kids can get by with C ribs for awhile, but as an adult with work/ repetitive jobs, add in any injuries, those ribs can rub inside the body making internal scarring..
Those things might be adding to you issues now..

That is why you need a skilled & expert surgeon, it sounds like your nerve is getting affected as much as the blood or or maybe more than blood flow.
If you mentioned swelling, color changes & possible clots , then VTOS would be the main concern. The longer a nerve is compressed it will take longer for it to come back, and there may be lingering pain ..

Check out our sticky threads in the upper part of the TOS forum main page.
Drs/PTs, useful info, Trigger point etc..
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Old 10-08-2016, 11:24 AM #6
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From 2006 Drs list - a starting point, there might be new ones to find after 10 yrs.. and these places may know of others.

Dr. Suzie Tindall
Emory University Neurology and Neurosurgery Department
Atlanta, GA

Mendi Schubert (PT)
Rehab South
377 West Pike Street, Suite B
Lawrenceville, GA 30045
Phone: (678)985-0238 ext
Fax: (678)985-0136

Dr. Carlos A.Selmonosky, M.D.
TOS CLINIC-Gilmer Medical Center
36 Mulberry St., P.O. Box 969
East Ellijay, GA 30539
Office: (706) 636-3005
(706) 635-5033
Fax: (706) 635-5032
Website: www.tos-clinic.com/
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Old 10-09-2016, 06:15 AM #7
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Wow 20 years ago? I'm amazed that you have dealt with it this long. I totally feel for you on the choking. There is a move in Mixed Martial Art called "rear naked choke" People thought I was crazy when I described my symptoms to them; "rear naked choke", hard to breath, heart beat rapidly when arm raised, purple fingers when resting arms, throbbing headaches, feels like I'm wearing a turtle neck sweater. I can find no chill and it's was very hard to relax while laying down.

Before I was diagnosed with my cervical ribs, they thought I might have a tumor or thyroid cancer since there was a noticeable bump on my right side compared to my left side. The Dr. ordered MRI and MRA with gadolinium and found good old cervical MacRibs and first ribs being smashed by my clavicle. All my vessels and nerves was flat/compressed, no aneurysm on the artery but collateral veins developed massively. Anyway, you prolly should consult with a surgeon soon. I am not very familiar with Dr. around G.A. Do some research on the Dr. mentioned above and also do more research around your states. You might have to travel around but it will be worth it since you can no longer take this pain.

If you elect to have surgery, you may wanna tell your surgeon that you have extra ribs so they can look for it via mri or ct. My radiologist and 3 other surgeon didn't even see my extra ribs , they were only focusing on the compression of the vessel since they saw collateral vein. A 4th doctor realized later that there is a congenital defect of extra ribs bilaterally popping out of my seventh cervical vertebra rather than the normal thoracic aka 1st rib. Why is this important? They have to plan a longer surgery since it is a 2 ribs removal.
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Old 10-09-2016, 10:14 AM #8
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Exclamation Seek out competent TOS specialists!!

Please don't be afraid to travel to see a TOS specialist. It's WELL WORTH the air fare, and these Dr's are used to patients from out of State. Trust me - I had to travel to Denver (from FL) to find someone who 1) understands 2) is on the cutting edge of TOS Surgeries and rehab 3) can talk to your local Doctor about acceptable PT and medications for pain. I live in Atlanta and have yet to find a Dr who can meet these criteria.

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Old 10-09-2016, 11:33 PM #9
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I can not tell you what your responses mean to me. I have never been heard before. I have tried so hard for so long to put mind over matter, because I thought I was crazy. I thought that the pain was not as bad as I made it out to be. And now getting to the point where I am losing functionality, because of an "imaginary" problem has made me feel like such a failure. Thank you so very much.

I have an appointment with a orthopedic surgeon. A had seen a chiropractor last week after years of doctors telling me that the extra collar bones won't effect anything. He made the appt with the surgeon for me.
I m going to do some research now that I know this is a real condition that can be treated. Now that you all have helped me see that this is not my fault. And the is not in my mind. Thank you so very much. I can not say that enough.
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Old 10-12-2016, 07:27 AM #10
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Hi, Mica! You are not crazy. Your doctor is like that because he can't treat you. I've seen many doctors like that. I've also seen doctors that were like, "You have TOS, really?!?" They were excited because they had never seen it before. These are NOT people you want to operate on you. I saw a Thoracic Surgeon where I live and he turned me down for surgery. I went back five years late because obviously I was still having problems and had surgery scheduled. When I was in the waiting room, I watched a guy walk out that was doing everything left handed because his right arm did not work at all.....again, not someone I want to operate on me. I cancelled. my surgery.

I had Erb's Palsy from birth that got better right away then 2003 TOS from a car accident. I didn't have any surgeries for the TOS until 2013. I saw Dr. Donahue in Boston. He is fantastic, the best if you ask me, and I tell everyone to got to him if they can (or Dr. Pearl if they are a baseball player).

Dr. Donahue is in Boston. Hopefully, he takes your insurance.

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Dr. Dean Donahue, MD - Boston, MA - Thoracic Surgery & General Surgery & Surgery | Healthgrades.com
http://www.vitals.com/doctors/Dr_Dean_Donahue/reviews
http://www.massgeneral.org/doctors/doctor.aspx?id=16342

http://www.massgeneral.org/thoracics...s.aspx?id=1253
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