February 4, 2013 at 12:12 pm #3527
Hello Raynaud’s Association!
I noticed in your Q&A about surgical treatment that you only mentioned digital sympathectomy. I wanted other sufferers like me to know that some doctors are also still pushing Endoscopic thoracic sympathectomy (ETS) to Raynaud’s patients.
Unfortunately, I was one such patient who underwent ETS due to severe Raynaud’s. My vascular surgeon failed to inform me of any of the potential debilitating side effects that frequently occur. While digital ulceration is less problematic, I now suffer from numerous irreversible side effects including anhidrosis (top 1/3 of body) hyperhidrosis (trunk of body) severe nerve damage in my arms causing neuropathy and paresthesia, lowered heart rate and blood pressure, hair loss, dysfunctional thermoregulation, reduced healing ability, tolerance to exercise or emotion, and much more.
While I’m sure there are some ETS patients who had positive results, I have yet to encounter such a person in my 1+ of searching. I just wanted to share my experience with anyone considering a sympathectomy, and caution them that the information on Anti-ETS sites is indeed very accurate. I do not recommend making the decision to have ETS surgery without carefully considering the additional debilitating conditions that you very likely have to deal with on top of the Raynaud’s for the rest of your life.
Thank you for letting me share my experience!February 4, 2013 at 5:47 pm #3543
Hello, Kari, and welcome to the forum.
I’m so sorry to hear that your surgery has left you worse off than before – how awful! But, I do want to thank you for sharing your unfortunate experience with us.
Hopefully, others reading your story will take heed and seek out opinions from several doctors to help them make a well informed choice.August 24, 2014 at 9:12 pm #5380
Where did you have the surgery done. I was considering having it done in Hamilton, Ontario, Canada but have reservations because of all the negative info on the internet and now your post makes me even more hesitant.August 25, 2014 at 10:13 am #5383
I lived in the Dakotas at the time. Since my original post I have only gotten worse. I have been to dozens of doctors, each of whom knew even less than I do about the procedure and it’s adverse side effects. I’ve had to become my own expert on it.
I am permanently disabled, especially in the upper right extremity from the T2-T4 bi-lateral sympathectomy, where I have also developed another known side effect called Reflex Sympathetic Dystrophy (RSD – aka The Most Painful Chronic Disease). I have problems from the neck down, which vary from shooting pain, burning pain, tingling, numbness, a feeling of glass in my elbow, etc. I have intercoastal nerve pain around the rib cage. I’ve also lost all the muscle in my body now and that’s just the tip of the iceberg.
One of the most in depth resources I’ve found which explain all of the post surgical symptoms I’ve experienced is the Corposcindosis Wiki . Corposcindosis refers to the “split-body” syndrome patients are left with after the surgery, trying to accommodate two opposite conflicting needs (e.g. can’t warm hands/feet while trunk of body feels trapped in a sauna). Having lived in both cold and hot areas of the country, I can say that some of those symptoms are less pronounced in colder climates.
I urge you to review how ETS effects the different systems in your body. If I had been informed, I would’ve never let the surgeon talk me into it. Missing a finger would’ve been so minor compared to spending the rest of my life in constant pain, stuck in my home on multiple medications just to get through the day.
Another important fact worth mentioning – the country of sympathectomy’s birthplace, Sweden, outlawed the surgery due to the disabling side effects in patients. Funny how doctors never mention something so important! Just know that if you do decide to gamble with your entire body to try an improve Raynaud’s symptoms, what comes in the months and years after is forever. There is no going back, and nothing the doctors can do.
I wish you the best of luck in whatever decision you make, and hope I have answered some of your questions. If you have anymore, please don’t hesitate to ask!
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