Sympathectomy = Dysautonomia??

[blackdog]

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

[goldicedance]

First welcome to the forum. We are all here to support each other as we travel down this road filled with many bumps along the way.

I am sorry to hear how your son is suffering so. I do know that being bedridden can exaccerbate the problem with low blood pressure when upright. Lying down further deconditions the body. A healthy person when in bed for an extended period will be affected when sitting/standing upright.

Can a sympathectomy cause low blood pressure when standing? I cannot answer that. That is a medical question that needs to be addressed by a physician who is familiar with your son's history.

Has your son taken any of the meds commonly tried by people with POTS? Has he increased his salt intake? Is he drinking a more than sufficient amount of fluids? Please read the section on DINET that discusses these things.

Let us know how he is doing.

Lois

[doctorguest]

Yes, sympathectomy can cause autonomic dysfunction - not surprising because the procedure is designed to intersect the major peripheral outflow of the autonomic system. I presume that it was done for pain or spausticity control in your son? I would suggest that you contact physicians at the Baker Heart Institute in Melbourne. These doctors do research on autonomic disorders and could possibly refer you to specialists who understand dysautonomia and are able to manage it. Good luck!

[blackdog]

Thanks for the tips and advice.

Lois, thanks for the welcome and the encouraging words. You?re right about the bumps along the way, sometimes hour to hour makes a huge difference to how he?s feeling and you?ve just got to roll with the punches.

Doctorquest - you were right on the money. He had the sympathectomy in the first place to control reflex sympathetic dystrophy on his kneecap following a hamstring release.

Interesting he doesn't have POTS but he does have lots of autonomic symptoms such as flushing, excessive sweating, migraine, gastroparesis, J tube, extreme facial nerve pain, dizziness, etc etc but his BP isn't unstable enough to have POTS (so we?re told). Over the last 6 months he has tried really hard to get up for as long as he can tolerate everyday (usually only 20 - 30 mins) but it isn't getting any easier and he isn't feeling any better for doing it. Usually it takes the rest of the day to recover and he's losing motivation.

Rob

[corina]

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

[corina]

oh and, what i forgto: this isn't just a POTS site. although i think most people are diagnosed with pots (just my thought, not sure though!), this is about dysautonomia in general. so please do feel welcome!!!

corina

[Sunfish]

hi rob -

i just wanted to add my welcome. like corina said, this isn't just a site for folks with POTS, so please do feel welcome to join in, ask questions, etc. no guarantee that people will always be able to relate or chime in with answers or experiences, but with lots of overlap between various types of dysautonomias there are a number of issues that apply to many people (or at least some) regardless of diagnosis/cause/etc. there does tend to be a prevalance of POTS references in conversations, though many times the discussions don't apply only to people with POTS. i'm actually one of the non-POTS-folks myself (though did have that diagnosis at one point in the past) and often start replies with "i don't have POTS, but..." b/c often the issues are still relevant.

you mentioned that your son doesn't have the POTS diagnosis though b/c of his BP readings. in regard to this, POTS actually has nothing to do with blood pressure, though it is a VERY common misperception (even amongst some physicians). some (or perhaps many) with POTS do have BP problems of various types, but it's not a prerequisite for a POTS diagnosis. POTS is actually based on heart rate, generally an increase of 30bpm or more and/or above 120bpm when standing. more details are included on the main DINET website that you may want to peruse at some point. ultimately, though, while diagnosis can be helpful in many ways, it's an imperfect science for many with dysautonomia and in the end treatment/ symptom control is probably more important.

while i by no means share in all aspects of what your son (& thus you too) are dealing with, there are a good number that i can say "me too" to. i have gastroparesis & a j-tube (though also have IVs & a g tube) and am also extremely limited in my ability to be upright for any amount of time. i didn't have a sudden onset of illness but rather progression of nerve damage over 10-15 years. but i can definitely relate to the "rare & unclassifiable" description by doctors! i've seen many of the top specialists in the US & am largely beyond anything they've seen. i'm sure you'd agree that this isn't generally the most comforting situation .

what kind of treatments has your son tried? there are a lot of options which may help to varying degrees. figuring out what is best for each individual takes a good deal of patience but generally speaking people can find one or more things that help (at least some, and sometimes a lot). additionally, as others already mentioned, it is important that he is upright as much as he can reasonably tolerate; this can include a combination of sitting (with or without legs propped up), partially reclining, etc. b/c anything is better than lying flat when it comes to deconditioning. i completely understand that one can only push so much, that there are times when it's not possible at all (i.e. severe acute illness), & that pushing means different things for different people & at different times (could mean a half hour walk for one person or perhaps "just" reclining up halfway to brush one's teeth for another), but the deconditioning factor is still important to keep in mind b/c it can play a big role. along these lines, staying "active" & exercising even when lying down can be helpful; it's not the same as being up & about, but if that isn't possible, it's certainly better than nothing. i do know first hand though how difficult it can be to strike the balance between pushing enough & pushing too much, especially as the fine line between the two seems to always be moving!

hope this helps,

melissa

[ugyan]

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!

[ramakentesh]

Id suggest that if Professor Esler is the person to speak to. Otherwise there is a Dr. O'Callaghan out at the Austin.,

[ugyan]

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....

[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/