ugyan

hi rob,

welcome around. like lois said, we have a great bunch of people around here, very much willing to help eachother! i do have a question though, as english is not my first language, i didn't understand what a sympathectomy is. anybody around to explain it to me???

there is a lot of informatin and knowledge at this site and (when up to it of course) people are very friendly and helpful.

so, again, welcome. i hope you will find answers to your questions!

corina

Hi,

sympathectomy is a surgery that is used for conditions many doctors don't fully understand, from Palmar Hyperhidrosis, Blushing (yes, you can have a surgery for that too) to pain control in cancer patients. It is even used as a psychosurgery for people with anxiety disorders and phobias. And it works. So you might end up going in for a surgery for sweaty hands and come out permanently sedated and sweating like a pig everywhere but your hands (and sadly upper body, and head = disabled thermoregulation). There is a good chance that the benefit will wear off often within 6 months - 2 years, but the disabled SNS condition does not go away.

During surgery the surgeon disrupts the main sympathetic chain that runs along the spine, causing autonomic dysfunction, and yes, one of the features is the lack of sweating. The other effects are usually not mentioned or mentioned in a kin of baby-language that it appears to be a positive outcome (example: having a low heart rate is actually very good for you, that is what athletes have.... Of course it is total rubbish. Low HR is only good if your heart is conditioned to deal with the workload. The surgery serves as a permanent pacer on the heart, it never really catches up with the body. Low HR, low BP, loss of baroreceptor sensitivity and then later denervation supersensitivity on the heart....reflex tachycardia....not good news.

Here are some articles on the adverse effects of sympathectomy, that creates the same condition you guys suffer from. And it is advertised as a gold standard treatment. It can not get any more bizarre!!!

http://sympathectomy.blogspot.com/

HI,

I just read your post. I am curious, have you seen Prof. Esler as a patient? I really can not afford to travel overseas any more, I have been out of work since my surgery and spent all my money on totally useless and hostile doctors. In my case, because it was an elective surgery that caused the autonomic dysfunction, they tend to be very protective and try to avoid telling what they know about the condition, just so that they will not incriminate one of their own. It is incredible...but true. So I need to see someone who is not protecting the interests of colleagues and the profession and has a good understanding of what happens after the surgery.

I have seen few who have the publications to prove that they have the knowledge, but are not willing to be involved...One neurosurgeon simply told me that he is not interested in seeing me. I was not asking him out, I was asking him to see me after sympathectomy...which - it turns out - is a procedure he performed up until 2005....

Hi everyone, I'm new to the forum but wanted your insight.

I'm the mum of a great 19 year old son with dysautonomia. He also happens to have cerebral palsy. I can honestly tell you that the CP pales in comparison to the dysautonomia.

The dysautonomia has been so debilitating that he has been bedridden for the last 16 months.

What I really wanted to know was if anybody else has dysautonomia as a direct result of a lumbar sympathectomy? Or even if anybody has heard of this.

Mitch was in great health prior to the day he had the sympathectomy and then *BANG* that evening this nightmare started.

His Neuro say that his form of dysautonomia is rare and unclassifiable, what ever that means!

We live in Australia and due to our relatively small population I don't think Drs see this very often.

Thanks Rob

Hi,

I am glad I found your post here. I also have had ETS (Endoscopic Thoracic Sympathectomy) as an elective surgery and ended up with disabling (and life-threatening) side-effects.

I live in Sydney, and was hoping that you have been able to find someone who was able to address this condition. I have spent the last 2 years since surgery going from doctor to doctor. I just run out of options - and money.

I also considered going to the Baker Institute, Professor Esler published quite and extensive body of work on the autonomic dysfunction and denervation of the heart. But would like to know if you have found anyone you would recommend. Thanks!

I suspect that being born with hyperhidrosis (inherited from my father) could mean congenital dysautonomia.

I had an open thoracic sympathectomy in 1992 at age 28 for hyperhidrosis. My hands still sweated after the surgery. I do not sweat as much under my arms now. I have compensatory sweating as a result of the surgery. I sweat on my back, legs, head, face. I am now 43.

I underwent an endoscopic thoracic sympathectomy on the right side only in 2002 in hopes to stop the hand sweating. Did not work either. I had several complications as a result of that surgry.

Needless to say, I'm DONE!

I am experiencing fatigue, dizziness, nausea, hard to stand for any length of time,heart palpations, especially if I lie on my left side. My heart beats rapidly and erratically.

I am on disability since 2005. Retired high school math teacher. Yes, sweaty hands and all, I taught school.

Does anyone out there agree this may be POTS? I'm trying to get in to see a specialist.

Hi,

I have had Palmar Hyperhidrosis and underwent Sympathectomy in Febr.2007. It turned my life upside down. I got all the possible side-effects (I do not mean all the side-effects disclosed by the surgeons who offer the surgery, I mean all the side-effects that are described in the medical journals by doctors who investigate the effect of sympathectomy. And there are many). I have a long and very similar list of symptoms as you, and not sure if it will help in any way, but there are many on other forums who have similar symptoms as you and I after this surgery.

I had a T2 cut, and it significantly affected my heart rate (bradycardia and abnormal beats, chronotropic incompetence - 70%), disabled thermoregulation, Hypothermia and hyperthermia on different parts of the body - at the same time, disturbed circulation, dyspnea, etc etc)

The last diagnosis I had was dysautonomia, but nobody was able to address my condition and ended up being handed from specialist to specialist - at a great cost. That is why I joined the forum, because I am hoping that I will be able to glean enough informaiton form here that will allow me to deal with at least some of my symptoms.

As to complicate my situation, I am also trying to deal with enormous grief and anger (rage), as all these symptoms/effects of sympathectomy have been described over and over in the medical journals, but the doctor choose not to inform me. I find that very difficult to deal with. My GP, and several specialist - not performing the procedure - I saw after were familiar with the consequences, so there is no excuse for the operating surgeon. It is a destructive surgery which indeed has the capacity to surgically induce dysautonomia.