Sympathectomy - URGENT HELP - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Sympathectomy - URGENT HELP

AshtonRains
AshtonRains

Hello,

I have just been told that my rheumatologist thinks I should have a sympathectomy done. This is truly a last resort for me after every tablet possible, every infusion possible. I have 9 ulcers at the minute, this is usual for me.

Has anybody else has this procedure?! I need advice!

24 Replies
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Hi AshtonRains, never heard of it, but did google it. Wish I could help, but no idea.

Not personally, but a lady I had iloprost with a couple of times had one done. She was in a right mess beforehand, about to lose the end of her finger despite top dose Iloprost for weeks at a time. I bumped into her a few months later and she was like a new woman. Her fingers were healed and she said she felt much better, she certainly looked it.

Hope this helps x

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I,m pretty sure this is what i had done when i had a gangrenous ulcer on my finger - but this was nearly 20 years ago. I was in hospital for 2 weeks. I havent had an ulcer since :)

My heart pangs in anguish because I feel so powerless to help you . I did google it and the chance of extreme complications are very rare. Google has anyone had a sym... you might find threads of where people have talked about their experience with that procedure. That usually comforts me.

Hi in a nutshell there is evidence that symptoms can be caused by neurologic overactivity. The neurological processes responsible for this are part of what is known as the sympathetic nervous system. The sympathetic supply is responsible for causing blood vessels to constrict in response to cold so as to retain body heat. One widely accepted theory is people who have primary Raynaud's disease do so as they do not have the "normal" regulation of this system, and the blood vessels stay in a prolonged state of constriction, causing the symptoms to manifest. By removing the sympathetic nerve supply responsible, the symptoms may not occur as often, or at all. However I would recommend finding out more and hopefully finding people who have had the procedure, in order to find out the typical degree of success they have experienced. Hopefully more people will get back to you on here!

Hope that helps!

I had multiple stellate ganglion blocks with radio frequency with results lasting for apprx 24 hours however my hands were so swollen and red after for a few i could barely bend my fingers. They recommended i have the sympathectomy but i did research and was too nervous because of the side effects. They did put me in pletal, plavix, and aspirin and i have a few ulcers compared to before. My raynauds is severe in my hands, knees, feet. There are very few surgeons that are really good at doing those procedures. Please do your own research before taking that big step. I know i almost did it to get relief but glad i didnt. Those needs were actually prescribed to me by my foot doctor who seen the ulcers on my toes and hands

After i was in i told my rheumatologisf and my fixture and they were happy that my podiatrist prescribed those meds.

I found this while doing a google search: surgeryencyclopedia.com/St-...

I hope it helps. Hang in there!

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Hello!

I had two sympathectomies in the mid to late 1980s,at the time i had mine performed,they did them in a different way to how they are performed now.Nowadays they do them through keyhole surgery,unfortunately for me,the surgeon who performed my sympathectomies was a bit of a butcher,he ripped open both of my armpits and did the operation,and stiched me back together,and i still have to scars to prove it,however,despite the rather gruesome operation,i had enormous benefit from these ops,but unfortunately,the nerve endings(i think the op involves severing the sympathetic nerves)can sometimes regenerate and the operation in effect reverses itself,which is what happened in my case,but i had many years of wonderful relief form the pain.Do not be put off by anything i have written here,things have moved on considerably since the 1980s,i will tell you though,i think they still give you a general anaesthetic,and in order to gain access to the nerve endings,they have to collapse your lung,but obviously,they will look after you,and you will feel enormous benefit once you recover.Interestingly,this operation will also stop you sweating on the side of the body that you have the op,so no more smelly armpits,indeed they do sometimes use this procedure on people who sweat excessively,so it is used for other purposes than raynauds,it really is not to bad an operation,and i wish you well in your quest to find relief,do let us know how you get on after you have had your op.Perhaps we can compare notes via this website.All the best for now.TIM.

What kind of sympathectomy? Is it Thoracic, and would it be endoscopic (as in "band-aid" surgery), which is possible? Or, is it cervical (the neck)? It all depends on the location of the surgery, well, a lot of it depends on it. ;) And, when you say infusions, what kind of infusions, for curiosity's sake, since I have svere osteoposrosis at 56 and my spine is "crumbling" as doc said last week, plus spinal stenosis, and lots more fun. And, I have had lots of shots and infusons, too.

Lynnie
Lynnie in reply to nightdancer

I think they do endoscopic now, if eliminates doing 2 surgeries, as I had. I had a cervical, and lumbar sympathectomy, but that was 1980...

oh, and watch out for anti nausea meds, as they can send your RLS into overdrive, if you go under anesthesia. There is only one that is universally classified as "safe" among the RLS community, and that is Zofran, formerly only used in chemo patients. That is when I found out about it, during chemo, many moons ago. ;) rlshelp.org has a good list of what to talk to your anestheisologist about before surgery on the treatment page. Also, rls.org has a brochre that is free you can send for about Surgery and RLS.

Hi Ashton

I had a sympathectomy in the 70's and was opened on my collar bones - this was for my fingers. However, the effect didn't last long but I did and still do have severe Raynauds.

These days I think the do the operation actually in the hand by keyhole so the scar is minimal (if for your fingers) and in the groin area for your feet. I understand that it is only done now when all else fails.

But in the end it's entirely your decision - if you are a bit unsure then talk to your rheumy or specialist nurse for further information.

Good luck xx

msdeedee
msdeedee in reply to Anteater

Hi Aston I to have the stellate ganglion block injections that have helped a great deal however another ago I developed an ulcer Onya right pointer finger. I was in constant pain. My dr came up with an ideal to try. Take Viagra or Cealis crush it up get some Cetaphil lotion mix it up in a bottle a medicine bottle mix them really well. Rub it on the base of the ulcerated fingers to the tip. First it was every four hours for about three days . MAGIC in two days I could move my finger pain stopped.??the ulcer started healing have to say it did burn a little but nothing compared to the pain from the ulcers. However it worked it for me. A just a suggestion check with your dr first. I was on the verge of loosing my finger as well. Completely healed and pain free . I use it twice a day now and it last a long time bc it doesn't take much lotion at all. I wish you the best of look. God bless you and you are in my prayers.

I had this done many years ago, when they cut the nerve on the collar bone, still bear the scars today. Now they go in under the arm. I did feel the benifit, but after so many years, other things have happened. Good luck in what ever you decide to do

Hi guys,

It's for my ulcers on my fingers and so will be performed on my hands.

Thank you all for your replies x

Hi Ashton- sorry to hear you have so many painful ulcers. I have not had a sympathectomy although it was talked about, but with not much success attached to it. What I would like to say to you is don't be afraid of amputations, it certainly stops the pain and cleans the tip giving it a better chance to heal. I have had all my finger tips bar one removed through ulcers, and my hands are still very functional. I do note that many hands of long term raynauds sufferers often have hooked fingers and I feel that my hands are more functional than those with hooked hands.

Just something to think about, its not as scary as it sounds. Hope this helps Sue x

Hi Sue,

Thank you for your reply. Ill take that into consideration when I visit the royal free next week :-) X

Hi, I had a sympathectomy in 1993 and the colour difference within hours was fab. i had keyhole, armpits and collar bone. since then i have self managed with gloves when out was all i needed but about a month ago the symptoms came back with avengance, back on meds, hand warmers etc. if they offered me another one i would have it, although i remember how sore my chest was afterwards.

Are you talking about a digital sympathectomy or a transthoracic one? There have been some good results from digital sympathectomies in cases like yours. As you attend the Royal Free you are in good hands and I would take their advice.

hi,YES...i'v had a sympathectomy,for my left foot,they went in though the side of my stomach which left me with a 9in scar ,and was very painfull and sore to move afterwards,this really did help.how ever i was told it could only last for six months but also for years,which left me devastated . and yes my pain has come back.....i am now undergoing digital sympathectomy,s ,as i have tried everything going,i am now under one of only 2 surgen's in the country that can do this opperation, i have had both hands done,and will undergo opperation on my right foot in May,i have students asking question's because this will hopefully prevent any gangreen or ulcers,so ,,,,,,,yes i will still have to wrap up warm all the time'it has helped some .Fingers still go white but the pain doesn't seem to last as long and my gas bill is very high,but hopefull,i won't lose any finger's or toes......hope this help's not only you but alot of people,there is some hope.................

I had 5 sympathectomies on multiple digits over 20 years ago and the procedure was the only thing that let me keep my fingers. They were ready to amputate and I chose this procedure first and have had only finger (the worst back then) get a bad ulcer about 5 years ago which we treated with Revatio (Viagra) and that also saved my finfer from amputation. Everyone responds differently but I say I had complete positive out comes.

My surgeon was an Orthopedic MD that specialized in hand and with the sympathectomy they do microsurgery and strip the nerve endings in your finger tips to allow better blood flow. It is entirely your decision but my procedures definitely saved my fingers from amputation.

When I used the Revatio (Viagra) for the ulcer on my right hand (the finger was purple numb and cold to the touch and had been for almost 2 weeks while they tried to figure out whether to amputate or not) I took the 1st dose at 2:oopm and in 2 hours my finger was pinking up and was warm to the touch. I used it for 2 years and as I have not had any recurrent ulcers since. I also have Scleroderma with Pulmonary Hypertension so the Revato also helped keep my lungs disease slow down it's progression.

Hope everything works out for you and if you have the sypathectimies I hope you have the same success I did. Good Luck and yu are in my prayers.

By the way - my sympathectomies were done in my hands through the palms and into the fingers with micro surgery with much better results than the collarbone and other areas. My surgeon was the only one in my town in Omaha, Nebraska (USA) that did the procedure so I was very lucky. He still calls me his poster child because other than that 1 ulcer recurrance I have been ulcer free. I still had to use hot packs and gloves in the cold months and keep the heat up in the house, but the pain was gone and I just have some numbness and tingling on and off.

I had it done in 1980, it was relatively new then, but now, I think, they use telescopic surgery....the relief, for me was instant, warm, pink toes, no chilblains...just remember, buy buckets of skin moisturisers and use them religiously...

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