Carli
07-11-2002, 01:23 PM
Over 10 years ago I began to have severe pain in my left shoulder blade. I saw every doctor imaginable, neuro., chiropractor, acupunture, md. As you can imagine, I got a different diagnoses with every one. Eventually the pain began to radiate into my neck and would cause horrible headaches. After that, came the pain in my left arm and hand. After many tests, I was told I had a pinched nerve (that they could do nothing about), migraine headaches, bulged disc in my neck and the all too comman fibromyalgia. My left arm began to ache so badly that I could not sleep at night, eventually my hand would turn ice cold where it became almost inbearable. Finally after many visits to my neuro. he could feel the noticeably different temps. of my hands, he ordered an ultrasound of my arteries and a nerve conduction test. What he diagnosed was Thoracic Outlet Syndrome. The tests showed that when my arms were raised above hip level, the artery in my arm and upper extremities was being cut off 100%. He told me that at this point, the only relief I could get was from a procedure that was only done as a last resort. He sent me to a cardiovascular surgeon who performed a left rib resection. My top left rib was removed. The surgeon had told me before the surgery that he thought my rib was laying on top of my artery, therefore cutting off circulation. During my surgery, he found that the rib was actually laying on top of the artery and nerve. It had been this way so long that he could only give me 50% back of my arm function. I now face the same surgery on my right side. I have had some relief, my arm is no longer cold and throbbing all of the time, however I still have the shoulder and neck pain. Of course I am worried about the pain meds. that I am forced to be on to control the pain. I have regularly taken Soma, Celebrex and Lorcet 7.5 for the past year and a half. At my request I have been reduced to Norco 10/325 four times a day along with Soma (not compound) and Celebrex. Whereas this does not control the pain completely, it helps somewhat. I am so afraid of the addiction that I know has already happened to my body.
Has anyone had this procedure? If so, did you get releif? Do you have suggestions for pain relief?
Has anyone had this procedure? If so, did you get releif? Do you have suggestions for pain relief?
Sponsor
RX4FUN
07-21-2002, 03:17 PM
Carli,
Haven't been here in a while, but I thought I'd pop in! Much to my suprise, I saw your post. I too have TOS. Have had it for over 5 yrs. now (I am 22 yrs. old). I have had a 1st and 2nd rib resection on the left side, and will be having the right side done at the end of Aug. I am from MN, but have to travel to Denver, CO to get treatment. They have the best TOS clinic in the country there. There are no doctors here that will treat me. They don't understand TOS. I saw 24 docs in MN (Mayo Clinic and the Univ. of MN). They misdiagnosed me for 4 years. Because of that, I now have severe nerve damage on the left side that may never get better. I am on disability and am in PT 4 days a week. I am having the right side fixed BEFORE it gets out of control.
I have a very strange and difficult case of TOS, so I've also had a few other surgeries, but I have noticed improvement with each. Before my first surgery, I was getting migraine headaches 2-3 times a month. I have not had one since!!
Feel free to ask me ?'s here, I'll continue to check in! Best of luck with your treatment.
Rachel
Sorry Rachel, please review Board guidelines as to posting email addy's or other web sites.
Newmod4
[This message has been edited by Newmod4 (edited 07-24-2002).]
Haven't been here in a while, but I thought I'd pop in! Much to my suprise, I saw your post. I too have TOS. Have had it for over 5 yrs. now (I am 22 yrs. old). I have had a 1st and 2nd rib resection on the left side, and will be having the right side done at the end of Aug. I am from MN, but have to travel to Denver, CO to get treatment. They have the best TOS clinic in the country there. There are no doctors here that will treat me. They don't understand TOS. I saw 24 docs in MN (Mayo Clinic and the Univ. of MN). They misdiagnosed me for 4 years. Because of that, I now have severe nerve damage on the left side that may never get better. I am on disability and am in PT 4 days a week. I am having the right side fixed BEFORE it gets out of control.
I have a very strange and difficult case of TOS, so I've also had a few other surgeries, but I have noticed improvement with each. Before my first surgery, I was getting migraine headaches 2-3 times a month. I have not had one since!!
Feel free to ask me ?'s here, I'll continue to check in! Best of luck with your treatment.
Rachel
Sorry Rachel, please review Board guidelines as to posting email addy's or other web sites.
Newmod4
[This message has been edited by Newmod4 (edited 07-24-2002).]
johnsmom
07-26-2002, 02:52 AM
Carli....I am new on here and when I saw your post I wanted to tell you my experince.
I have had shoulder,neck,back,headaches....the list goes on and on.Anyway 2 weeks ago I had a appt with my pain Dr and took info about TOS and had him look at it.He agreed that I just might have this and gave me a script for neurontin.
My life has CHANGED in the last 2 weeks so much!!! I went camping last weekend....Before this all I could do was lay around because sitting made the pain worse.I have had this problem for 12 1/2 yrs with no help from a Dr.
I heard about TOS on another board and it was like they wrote about me.
I know you have had surgery but I wonder if this med or another would help you also.I dont know but if I could avoid surgery I would try anything.Like you I have done it all.I went to all kinds of Drs begging for help and was told to just work through the pain.
If this med stops working I will think about surgery because I dont ever want to be in that kind of pain again....I would buy this med on the street.lol The heck with percocets and oxy...get me nurontin.lol
I cant even tell I have taken anything...I want to get up in the mornings(not to early).lol I am just starting on 300mgs 3xa day.Before I was on 100mgs 3xa day.Gosh if I feel this good on just 300 mgs a day I wonder what 900mgs will do.lol
anyway I just wanted you to know there are other things that you can do besides surgery for this.This med also helps my restless leg....WOW.I wish you luck....
I have had shoulder,neck,back,headaches....the list goes on and on.Anyway 2 weeks ago I had a appt with my pain Dr and took info about TOS and had him look at it.He agreed that I just might have this and gave me a script for neurontin.
My life has CHANGED in the last 2 weeks so much!!! I went camping last weekend....Before this all I could do was lay around because sitting made the pain worse.I have had this problem for 12 1/2 yrs with no help from a Dr.
I heard about TOS on another board and it was like they wrote about me.
I know you have had surgery but I wonder if this med or another would help you also.I dont know but if I could avoid surgery I would try anything.Like you I have done it all.I went to all kinds of Drs begging for help and was told to just work through the pain.
If this med stops working I will think about surgery because I dont ever want to be in that kind of pain again....I would buy this med on the street.lol The heck with percocets and oxy...get me nurontin.lol
I cant even tell I have taken anything...I want to get up in the mornings(not to early).lol I am just starting on 300mgs 3xa day.Before I was on 100mgs 3xa day.Gosh if I feel this good on just 300 mgs a day I wonder what 900mgs will do.lol
anyway I just wanted you to know there are other things that you can do besides surgery for this.This med also helps my restless leg....WOW.I wish you luck....
FREDO
07-26-2002, 11:38 AM
Hi Folks,
Normally, I don't praise a buncha meds to folks I don't know - well, as much as you can "know" somebody on the Net, LOL.
Anyway, I must agree on the Neurontin as being extremely helpfull as a med to use in combo with others.....Along with failed fusion, L5-S1, 3 angioplasties in my legs, and a rough case of Peripheral Neuropathy, I have ALOT of nerve damage, Now to also include four level severe stenosis, C3-C7, which I am lined up to have fused on 6 Aug....
Bottom line [yeah, I know-FINALLY!] I take 800mg Neurontin TID for a total of 2400mg/day - It took about 4/5 months to finally reach this height in dosing, but the help I receive in nerve related pain, is tremendous!!
There!! I finally got it out, probably coulda skipped all the other crap, just wanted yu'all to know I wasn't a piker :D
Take care folks,
:wave:
------------------
FREDO
Normally, I don't praise a buncha meds to folks I don't know - well, as much as you can "know" somebody on the Net, LOL.
Anyway, I must agree on the Neurontin as being extremely helpfull as a med to use in combo with others.....Along with failed fusion, L5-S1, 3 angioplasties in my legs, and a rough case of Peripheral Neuropathy, I have ALOT of nerve damage, Now to also include four level severe stenosis, C3-C7, which I am lined up to have fused on 6 Aug....
Bottom line [yeah, I know-FINALLY!] I take 800mg Neurontin TID for a total of 2400mg/day - It took about 4/5 months to finally reach this height in dosing, but the help I receive in nerve related pain, is tremendous!!
There!! I finally got it out, probably coulda skipped all the other crap, just wanted yu'all to know I wasn't a piker :D
Take care folks,
:wave:
------------------
FREDO
jane2
07-26-2002, 01:23 PM
Hi Carli. I just wanted to say that Neurontin is real helpful for nerve pain. I don't know much about TOS, but I do have nerve pain. TOS sounds bad. As I mentioned in my other post to readytopull, it effects my memory and concentration. But it is great for throbbing and stabbing pain.
For those ready to move forward. See the other post to readtopull. Perhaps there is somthing that can help get you out of this situation. :D ;)
If I sound strange today I am just having a migraine.
[This message has been edited by jane2 (edited 07-26-2002).]
For those ready to move forward. See the other post to readtopull. Perhaps there is somthing that can help get you out of this situation. :D ;)
If I sound strange today I am just having a migraine.
[This message has been edited by jane2 (edited 07-26-2002).]
SSmith3613
08-11-2002, 08:04 PM
Hi, I was diagnosed with TOS about 3 years ago. I was thrown off a horse and ended up with a lot of pain. They removed my first rib, and part of the scalene muscle in my neck. I did get blood flow back to my arm, but the pain is still there. I have been on a lot of meds, and recently had a trial spinal cord stimulator put in. If the first surgery helped you out, and you have a good doctor I would definitely try again. I tried all of the other options, chiropractor, meds upon meds, and nothing else gave me back the blood flow. I have also taken neurontin up to 1800 mgs a day. It did help somewhat for the pain, but didn't help with the blood flow problem at all. I had been told by numerous docs that the surgery was inevitable. Good Luck, I hope everything works out for you .

