Hello all!

I read this site quite a bit when I first learned that I would be undergoing my first surgery earlier this year, and I am deciding to participate this time as I am preparing for my second round of surgery.

My story is this:

I was diagnosed with TOS in August of 2010 after having significant arm pain and numbness. It was soon discovered that i have bilateral cervical ribs that are placing pressure on the brachial plexus nerve complex. EMG revealed that I was having permanent nerve damage occurring on both arms. I tried a stint of PT, and it was not effective.

My first surgery was with Dr. Molina at the University of Minnesota on March 18, 2011. The procedure they used was to make an incision under my arm pit first, and then complete it through an incision over my shoulder. They did a left first rib resection and scalienectomy.

The recovery was AWFUL, but that was in part due to my inability to tolerate ANY pain medication. Apparently the only thing I can take is flexerol (sp?), and I have to tell you that it does not do too much to deal with pain after surgery! It took me about 6 weeks before I was up doing much of anything for any amount of time. Even 3 months after I was still barely able to complete a full day without having to rest.

The symptoms of pain in my left arm are gone, but there does appear to be some nerve damage that occurred during the surgery, and the back of my arm is always numb noe (kind of like the asleep feeling). It is not painful, but I had not expected it, so it kind of sucks. I also still have a significant amount of pain in my neck and tightness in the muscles of my neck and shoulder. I also do still have some numbness that occurs in my left hand, but it usually only comes on after I have used the arms too much or occasionally when I wake up in the morning I have it.

So now I am schedule to have the right side done on December 20th, 2011 with the same surgeon. I am so dreading the recovery period, but I feel like if it prevents further permanent nerve damage, it is worth it. I am hoping that some of the neck pain I experience will be alleviated after having the other rib removed, but I am not overly optimistic about it.

I guess I assume (based on what I have read on here and other sites on the web), that even with successful surgery, we typically will have to deal with some issues of pain management for the rest of our lives. Que sera, sera!!!

I would love to hear from other people that have maybe had this condition because of cervical ribs, and if you have had surgery, please let me know what your longterm outcomes are. Also, has anyone else had this done with Dr Molina? He seems to be one of the "specialists" for this surgery, but I have not seen his name ever mentioned in these forums.

Wish me luck all!

Hello,
Did PT or anyone ever suggest trying or a trial with a TENS or IF stim to help with pain relief since you cannot tolerate most meds?

I would really suggest a few tries to see if either type might help with some of your neck pain and tightness in the muscles of the neck and shoulder.

I have a EMS(muscle) stim (6 yrs old now) and just ordered a new IF(inferential) stim - they can be turned up more without the zinger/zaps happening.
A TENS is often used to block the pain signals , my dad has one for back pain.

Might be worth asking about them.

Dr Molina has been mentioned in the past if I recall correctly, it's been awhile ago though.
If you search his name here any posts should come up.
http://neurotalk.psychcentral.com/search.php

Hey,

You are so brave. I do pray all goes well and God's grace will carry you through.

Maybe read about relaxation and breathing to help with pain. I've also ready music may help more than we realize.

Do keep in touch with us when you can.

I know there's lots of success stories to tell about surgery. You can be one of those. Just do the aftercare.

Praying you'll have great success with your upcoming surgery.

Take care...

Hi Ferna,

I have been looking for patient infom regarding Dr. Molina too, Haven't had any luck yet. I have an appointment with him this Tuesday regarding removing my cervical rib, but one of my persistant symptoms already is Arm pain and numbness, I don't want to have the surgery just to have this stay the same. Countless MRI's, X-rays- tired of the pain, numbness and headaches. How would you say Dr. Molina responded to your nerve damage, would you still reccomend him to others?

Thanks!
Nicole

Well, my surgery was far from a sucess unfortunately. During the procedure, the surgeon accidently cut my subclavian vein and artery. the rib resection was then put on hold while they tried to figure out how to stop the bleeding and save my life. I had 4 surgeries over the next 5 days, 14 units of blood were given to replace blood lost throughout those surgeries, and I ended up wth an arteriy graft and vein stent, as wellas a serious brachial plexus injury that has left my rioght hand and fingers without movement or feeling. If I could go back now, I would have skipped the syrgery all together and lived with the pain from the TOS.

I am so sorry to hear of your experience. I am also worse after my surgery. I just wonder how many more people have to be injured before the surgeons take a deep breath and figure out they don't fully understand this syndrome.

Take care,
Kelly

Ferna I'm so sorry to hear that. Who did your surgery ? They should be fired for malpractice.

I am very confident that my surgeon is experienced and knows a lot about TOS. Cutting an artery is a risk, but sounds more like a mistake someone might make who doesn't do a lot of these operations. I hope things improve for you.

Limoges, your going to see Dr. donohue right ? That's who I'm trying to see but my health insurance doesn't do out of network since I live in ny. Trying to switch insurances. Did he mention risk of stroke with arterial or venous tos?

I have the oddest symptoms. Thanks. Your surgery will be fine. The majority of people who get decrompression surgery are cured and you never hear from them bc why would you want to go on here if you felt so much better.

The majority of people are not cured with this surgery, especially for disputed nTOS. The percentages are abysmal and grow even more bleak when patients health is tracked out for a few years. Percentages I've been told by surgeons are 50/50, but I've seen articles that suggest it's more in the 30% range when patient follow-up has been monitored and reported, not just a cut and run performed.

I'm very sorry, Ferna.