[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

[aTOSer]

Hello All,

I was diagnosed with bilateral TOS in 2009, after a cumulative trauma (repetitive strain) injury chronic from bad ergonomics at a bad job that I had for 8 plus years.

I had surgery on ONLY the right side (I am R hand dominant and it was worse on the R side) in 2010. Had paralysis afterwards of my R arm, gradually recovered somewhat so I can get by. Adjusted and changed my lifestyle and kissed certain sports good bye (Tennis, golf, surfing, dancing with my arms above my head, etc).

I had all kinds of pain management afterwards and got a spinal cord stimulator. Weaned off of fentanyl, went back on fentanyl, weaning back off of fentanyl. Now that my dose of opiates is lower, I feel so much more Left sided pain and symptoms.

I cannot lie on my Left side when in bed, cannot lift my left arm without SHARP stabbing pain, can't even remove a sweater or coat without SHARP stabbing left shoulder area pain, it is getting worse with throbbing and more and more ciscomfort around the neck, etc.

Unfortunately I have WC for insurance as this was a work-developed injury and they keep refusing me to see the TOS/thoracic surgeon again.

I am afraid I am going to get a blood clot one day and die! I have gotten used to the pain on the R side so that I think I can get back to work at something. But the Left sided pain is SO SHARP and constant I think I need surgery on it now. Not sure what to do how to handle WC, I am in California and their WC system is terrible/evil.

Any advice or suggestions appreciated!!