Wondering about surgery for POTS

[jeanne]

Hello, folks!

I am new to this forum. I was diagnosed with POTS in 2003. It has gotten a lot worse lately. I was wondering if anyone has had the surgery mentioned on this website under what causes POTS. It is called craniovertebral decompression. Also, does anyone know who (or where) this operation is being performed? The meds that have been tried on me (and there are many of them) have only been partially effective, and only for a short time.

Thanks in advance for any information anyone can give me.

[MightyMouse]

First, I want to be terribly clear here: The surgery only works if the patient has COMPRESSION of the brain, also called chiari malformation. Docs still disagree on what the cut-off should be for surgical repair--the compression usually goes with a herniation of brain matter, where the hind brain slips out of the skull.

There are several doctors who specialize in screening patients for chiari... you can read more information on the World Arnold Chiari Malformation Association.

http://www.pressenter.com/~wacma/

[Dizzy Dame]

Hi Jeanne,

I don't have chiari malformation, so I can't offer any advice. I do have POTS that doesn't seem to respond to medications, so I know the frustration of feeling sick with no promise of relief.

I also wanted to welcome you to the forum. I hope you find the answers you're looking for here.

Cheers,

lauren

[jeanne]

Thanks to both of you for the replies.

My quality of life right now is so poor that I am willing to try anything. My doctor (at the Mayo) is having me try to the same meds again.

Does anyone know of any research studies being done that would take someone with severe symptoms? Like I said, I am willing to do anything at this point.

[DancingLight]

nina,

i'm confused...i thought the surgery was also used for people with severe cervical

stenosis causing ANS problems?

also, though, i second what you said that it is the absolute LAST resort...

one of the docs interested in this sort of thing is dr. dan heffez in milwaukee, WI

i have yet to respond to meds either, but also want to explore all the options of meds and pt before surgery...

emily

[morgan617]

Just wanted to say welcome, don't know anything about the surgery. But welcome! morgan

[jeanne]

Thank you to each of you who responded. Knowing there are others going through this who understand is a comfort. I have read this forum for a few months now, but I have never posted before. I wish all of you the best, and thanks again.

[MightyMouse]

Emily, the link with stenosis isn't as clear as the link with Chiari. As someone who personally has had spinal surgery with Dr. Heffez, I can tell you he is very conservative and my surgery was NOT with the intent that my ANS symptoms would get better. Rather, we were trying to help my weakness, pain, parathesias & swallowing problems. I did have severe stenosis in my spinal canal from an auto accident many, many years ago (31 years now). I did not have surgery b/c of my ANS issues. I had surgery because I was hoping to slow down the pain, regaining some of my physical strength and mobility. My surgical recovery was very long, and complicated... and included an emergency replacement implant when my first bone graft broke. That failure of the first graft to heal properly is what raised the suspicion of Ehlers Danlos, the collagen defect. Looking back, I probably would have still had the surgery, but would have made some different choices. Hindsight...20/20.

You have to weigh all the risks and benefits... and for me, the bottom line still would have been that without surgery, I would have been homebound and permanently disabled; not from ANS problems but from pain.

There are people who DO need surgery, and that is the job of you, your primary doctor and consulting surgeons to figure out. There is another condition, other than chiari malformation, called syrinx, which is is a fluid filled cavity on the spinal cord...kind of looks like flat, long blister. That is also a relatively rare condition.

http://www.merck.com/mmhe/sec06/ch093/ch093f.html

This is another issue that can cause ANS-like problems, but is often treated with surgery.

Severe spinal stenosis can be an issue too if it causes cord compression/impingement. Minor compression may not require surgery...

http://www.merck.com/mmhe/sec06/ch093/ch093c.html

Those who are newer here may not know my history--so forgive redundancy above, and here: surgery is not an easy answer. There is now easy answer with ANS problems. I don't want to dash hopes--just share my reality.

I have met, in person, and online, quite a number of Heffez patients, as well as a few from the Chiari Institute in NY. All of the friends I have who've had spinal or Chiari and have had it surgically addressed have had multiple complications...from multiple repeat surgeries to permanent shunts to deal with craniospinal fluid pressure problems. For me, I know have a chain reaction of herniations above an below my initial fusion at c5-6. Basically, every disc from c2 to t1 has some degree of herniation--a side effect of having fusion with EDS--one fused joint throws the whole system out of whack.

'nuf said.

As for research, consider contacting NIH.

Nina

[DancingLight]

Nina,

Thanks for typing that out for me, I know how limited your energy is...

I am having an MRI with Contrast on Thursday this week and a Lyme appt. next week, so that will help us see more what is really going on. If the cervical stenosis is severe it could be causing me this level of neurpathic pain. If it is minor, that points us to something else as the cause of my pain.

At this point I am homebound and cannot engage in any 'every day' activities...so we do have to look at all the options...but please know that I am doing everything in my power to avoid surgery. It will be an absolute last resort and hopefully won't happen!

Emily