[MH Advocate]

Originally Posted by nospam

I had relief with Lyrica but side effects. Neurontin (Gabapentin) has given me similar relief without side effects.

Cymbalta is another drug that can help although I had side effects. I now take Pamelor (Nortripyline). Elavil (Amitriptyline) is another drug (but older) in the same family. These are antidepressents that have been found to treat pain as well. They could also help your mood.

Flexeril worked for me a while but eventually I built up a tolerance to just about every muscle relaxer out there. The anxialitic drugs seem to be more effective: Valium, Ativan, etc (I'm on Valium).

If physical therapy makes you worse, stop. Don't do exercises that aggravate you. Don't be afraid to find another therapist, one experienced in treating TOS.

Thank you so much for your response.
I have never tried antidepressants in my life, but I am a mental health worker and I have seen some scary things on people taking antidepressants, so I avoid them at all cost, my mother sent me a bottle of Cell Food, I have been drinking 10 drops of oxygen, (cell food) daily and I have noticed an improvement in my breathing and colour (I am so pale, and I should not be) now even my eyes and face look healthier since adding liquid oxygen

my doctors have been proocupied ruling out everything else (thyrod, discarded, osteoporosis, discarded, all blood work and tests indicate that I am otherwise healty (not even a flu)
just the stupid pain that kills me soflty daily
the stiffness in my upper body and the shoulderblade/collarbone areas in pain 24/7,, I want to sleep for a month and wake up healed!

[Jomar]

It will help for others that might want to reply if our new members make a thread of their own.
Main TOS page with threads listed -
http://neurotalk.psychcentral.com/forum24.html

Post here if you need help making a new thread.
Our site FAQs with help on basic forum use & posting -
http://neurotalk.psychcentral.com/fa...b3_board_usage

[Stricky]

Hi all, I have peripheral nueropathy. I was diagnosis 8 years ago. My calves have atrophied. I'm about to get a pre op exam for a hysterectomy in a few hours. Last year my gyno told me not to get one because of my PN. Now, a new gyno says yes to surgery and it will be ok. I'm reading around that a hysterectomy can give PN. I thought omg, I don't need to be worse.

I want to start a thread here to ask around if anyone has had a hysterectomy. How many posts must I post before I can start a thread. I'm a little scared right now.


NM, I just saw the post before this one....I'm sorry- I'm just nervous now. I will make a thread per the instructions.

[16rhonda]

Lt. Sided 14 mos. Postop for Costcotransversectomy, 1st Rib Resection, & Neuroplasty. Dr. Donahue at MGH did my surgery. I agree w/ others here, he is most intelligent, compassionate & understanding Dr. I have ever had. Took 8 yrs. & ELBOW & shoulder & neck surgeries bf I was finally diagnosed w/T.O.S. by Dr. Donahue. Im debating when to have Rt. Side done. Too much PN pain, Bilateral Carpal tunnel, Bilateral Tarsul tunnel & Peroneal nerve compression, which I had surgery for in Dec. W/Cont. Pain & numbness. I was wondering if anyone here has extra cervical ribs?? my Dr. Says its very rare. I also still have chest numbness from surgery, which Dr. Says is very rare, most people its better by 6 mos. Postop. I guess my nerves are very sensitive to pressure.

[marlalemons]

Just wanted to say hello for now. I'm new here. Recovering from first rib resection, post-op 18 days. Dr. Daniel Clair, head of Vascular Surgery, at Cleveland Clinic did my surgery and I am very very pleased. My best piece of advice is to take at least 3 weeks off of work if you have first rib resection surgery. I tried to go back a little short of 2 weeks post-op, but was not a good idea. The longer you can rest and be under very low stress, the better for your recovery. Will write more later when I have time.

[parbie]

Originally Posted by 16rhonda

Lt. Sided 14 mos. Postop for Costcotransversectomy, 1st Rib Resection, & Neuroplasty. Dr. Donahue at MGH did my surgery. I agree w/ others here, he is most intelligent, compassionate & understanding Dr. I have ever had. Took 8 yrs. & ELBOW & shoulder & neck surgeries bf I was finally diagnosed w/T.O.S. by Dr. Donahue. Im debating when to have Rt. Side done. Too much PN pain, Bilateral Carpal tunnel, Bilateral Tarsul tunnel & Peroneal nerve compression, which I had surgery for in Dec. W/Cont. Pain & numbness. I was wondering if anyone here has extra cervical ribs?? my Dr. Says its very rare. I also still have chest numbness from surgery, which Dr. Says is very rare, most people its better by 6 mos. Postop. I guess my nerves are very sensitive to pressure.

Hi, I have extra ribs and had surgery on my right side almost 10 months ago. It was unsuccessful. I was wondering, why did Dr. D remove your first rib but not your extra rib? Did he not feel it was causing any compression? Did you have any bands attached to your extra rib? Sorry for all of the questions but I am considering a second surgery and Dr. D is on my list of potential surgeons. Thanks

[twelveleaves]

35 yr old female living in the pacific northwest. I was just diagnosed with Bilateral Neurogenic Thoracic Outlet Syndrome with cervical ribs. I have had TOS for 13 yrs though. I saw one local vascular surgeon and he says he believes I need surgery. I am hesitant to get surgery and want to do more research. I am exploring the idea of flying to Boston to see Dr. Donahue for a second opinion. The pain and symptoms have increased and have gotten much worse in the past 7 months since I started working a job that requires computer (laptop) use. I have given my notice at work and am resigning due to my inability to perform my job. I am just eeking out these last few weeks and popping vicodin when I get home. There is no way I could keep this up. I feel like crying some days during work the pain is so bad. Driving is another huge trigger for me. Even just driving for a couple minutes causes a flare up. I plan on filing a claim with my short term disability insurance company as of my last day of work and this monthly $ should cover my COBRA payments. It will buy me some time to sort all this out and figure out if I should have surgery or not, how I feel after not working for some months straight, if not decide if I should apply for SSDI, etc etc.

It's crazy to think that this is my reality and that I will have to deal with this for the rest of my life. It's overwhelming at times and sad. Over the 13 yrs that I have been suffering from TOS (with no diagnosis until 2 weeks ago) I slowly had to give up activities....basketball, bowling, kayaking, backpacking, driving a stick shift, art, playing guitar, etc.

The acute pain has also taken a larger toll on my general health...fatigue, brain fog, disposition, etc.

In addition to NTOS I also have a congenital hereditary blood disorder that causes me to tire more easily than "normal" people, and I also have IBS (developed after having my gallbladder removed at age 21). A few doctors have also suspected I have fibromyalgia.

Thankfully I do know that if I don't drive, don't use a computer, hold a phone to my ear, lift heavy things, work, etc I feel much much better. I could live with not being able to work and not being able to do many of the things I once enjoyed in pre-NTOS but people keep telling me it would be a shame for someone so young to accept that fate. In other words they are saying I should have the surgery as if it will cure me. From what I have read I just don't know if this is the case. I do not want to start the cycle of surgery after surgery.

Advice gladly accepted!

[jkl626]

Originally Posted by twelveleaves

35 yr old female living in the pacific northwest. I was just diagnosed with Bilateral Neurogenic Thoracic Outlet Syndrome with cervical ribs. I have had TOS for 13 yrs though. I saw one local vascular surgeon and he says he believes I need surgery. I am hesitant to get surgery and want to do more research. I am exploring the idea of flying to Boston to see Dr. Donahue for a second opinion. The pain and symptoms have increased and have gotten much worse in the past 7 months since I started working a job that requires computer (laptop) use. I have given my notice at work and am resigning due to my inability to perform my job. I am just eeking out these last few weeks and popping vicodin when I get home. There is no way I could keep this up. I feel like crying some days during work the pain is so bad. Driving is another huge trigger for me. Even just driving for a couple minutes causes a flare up. I plan on filing a claim with my short term disability insurance company as of my last day of work and this monthly $ should cover my COBRA payments. It will buy me some time to sort all this out and figure out if I should have surgery or not, how I feel after not working for some months straight, if not decide if I should apply for SSDI, etc etc.

It's crazy to think that this is my reality and that I will have to deal with this for the rest of my life. It's overwhelming at times and sad. Over the 13 yrs that I have been suffering from TOS (with no diagnosis until 2 weeks ago) I slowly had to give up activities....basketball, bowling, kayaking, backpacking, driving a stick shift, art, playing guitar, etc.

The acute pain has also taken a larger toll on my general health...fatigue, brain fog, disposition, etc.

In addition to NTOS I also have a congenital hereditary blood disorder that causes me to tire more easily than "normal" people, and I also have IBS (developed after having my gallbladder removed at age 21). A few doctors have also suspected I have fibromyalgia.

Thankfully I do know that if I don't drive, don't use a computer, hold a phone to my ear, lift heavy things, work, etc I feel much much better. I could live with not being able to work and not being able to do many of the things I once enjoyed in pre-NTOS but people keep telling me it would be a shame for someone so young to accept that fate. In other words they are saying I should have the surgery as if it will cure me. From what I have read I just don't know if this is the case. I do not want to start the cycle of surgery after surgery.

Advice gladly accepted!

I have heard good things about Dr. Kai Johansen in Seattle. It might be worth a shot to see him first. also have you tried PT? That is always the first step. Also Trigger Point injections have helped me. Botox helps some people but it didnt help me.Good Luck.-JKL

[twelveleaves]

Originally Posted by jkl626

I have heard good things about Dr. Kai Johansen in Seattle. It might be worth a shot to see him first. also have you tried PT? That is always the first step. Also Trigger Point injections have helped me. Botox helps some people but it didnt help me.Good Luck.-JKL

I have already met with Dr.Johansen and he wants to operate on my right side. Removal of the cervical rib, scalenectomy, and remove scar tissue.

Dr.Donahue in Boston would be a second opinion.

Dr. Johansen had me do a scalene block and it didn't really do much. It relieved some of the pain but only for about 15 minutes. Thus he said Botox is not an option for me.

Next monday I am getting a massage from someone familiar with TOS. I have had good luck with massage in the past in terms of temporary pain relief.

Only 10 shifts at work (lap top...sigh) to go. counting down the days.

[thoracicoutlet]

I was diagnosed with TOS earlier this year. I've been improving, though certainly there are good days and bad days. I've found that trigger point therapy is the best way to address my symptoms