Thoracic Outlet Syndrome

Hi  How come you had to be operated on twice?  One side one week and the other side two weeks later?

I am now three months following my operation.

My physiotherapist tells me I have made a miraculous recovery. 

I have returned to work. I am fully functional.

I have No Pain. No Cramps. No Weakness. 

It is more than I could ever have hoped for.  

I can only hope and pray that other patients eith TOS can find a surgeon as meticulous and gifted as Dr Gelabert. 

I think the key to this operation is the surgeon needs to do more than 15 operations a year to be familiar with the territory. My surgeon does 80 (eighty) of these procedures per year. 

Good luck. 

I am now 4 (four) months following my operations. 

My recovery continues to go well. It is better than I could ever have imagined or expected. 

I am back to all daily activities that I couldn't manage before my surgery!

I am still taking GABAPENTIN (Neurontin) twice day and expect to stay on this for at least 6 months. This helps stabilize the nerves and relieves the discomfort while they regenerate. My surgeon told me I can expect 1 cm nerve recovery per month.

I am no longer on any painkillers.

Hi I just had a first rib resection and just wanted to know from someone with the same experience. How long was your recovery?  Do you feel normal again?  Are you restricted?  Thank you!

Seth

Hi Seth,

I'm so pleased to hear that you have had your operation. Nerve releasing surgery gives [u]immediate[/u] relief, but [u]slow[/u] recovery.  Your recovery will depend on how long your symptoms lasted for before surgery. I felt "normal again" virtually immediately, that is no more discomfort from the nerve compression, but I have ongoing symptoms from the recovering nerves. My surgeon told me that my nerves would recover at the rate of 10mm per month, measured from the site of compression (in your neck). Recovering nerves need to be "setttled down" with medication like Gabapentin and Amitriptylline. I am now six months after my operations and I am still on both of these tablets, and do not intend stopping for at least another year. I no longer take pain killers and have not done so for a long time. I find sleeping flat on my back with a small towel roll under my neck very comfortable. I was also advised not to carry anything heavier thatn 1 kg for 3 months. 

Hi Seth,

I was in pain for about 3-4 weeks after my operations and took painkillers (Tramadol, Ibuprofen, Paracetomol) as well as Gabapentin & Amitrptylline. I am no longer in pain. 

I do however have some discomfort every 12 hours when I am due for my next dose of Gabapentin. I will therefore continue with this until my nerves have recovered fully. This may take up to three years. My hand function is back to normal but I still have muscle wasting which is recovering slowly. 

Pain is very subjective - so one person's pain might be tolerable for another person. Very importantly: You need to be on adequate doses of pain relief to be without pain in the early part of your recovery.

Yes. In the beginning it was every week. It is very important to keep the nerves moving so that they don't get stuck down by scar tissue. The diaphragmatic breathing exercises in the begining are small stretching movements to keep the excursion of the nerves by a few millimetres. I also did exercises to keep the shoulders moving in circular and pendualr movements. Hydrotherapy also helps one to relax and gently stretch the muscles and nerves. The frequency of the therapy decreased to fortnightly, then three weekly and now it is monthly. My physiotherapist specialises in TOS - so he knows exactly at what pace I should be exercisng and recovering. I find it really important to have someone knowledgalbe to talk to on a regular basis. Not all physiotherapist know a lot about TOS as it is quite rare. So be careful.  

Which country have you had your operation in? Did your surgeon give you a rehabilitation programme? Do you have a good Physiotherapist who can supervise?