Has Anyone Developed Pots+ After Surgical Nerve Damage

[brigit2006]

As a newbie, I'm taking the risk of opening a new topic and hope that's OK. I had no POTS or autonomic insufficiency history prior to having a left and right thoracotomy approach to strengthen a long fusion that I have from T6 to the sacrum. There was incidental nerve damage to my thoracic sympathetic nerves, which has left me with little communication between my spine and my adrenals. Is there anyone out there who has neurological damage as a result of surgery? I don't have any idea if developing POTS + overnight is different from having it come on gradually. It took a while to find a doctor who could see beyond the massive surgery to the problems I was having: dizziness every day that often kept me in bed most of the day trying repeatedly to get up. It got better some by later afternoons. Then my sodium was in the tank. I had tachycardia that hurt and I was so SOB it was almost impossible get up a flight of stairs. I also have abdominal pain and swelling from the waist down.

For the last year + I've been on Florinef 0.1, nadolol 20mg. sodium chloride tabs, chicken boullion when I need a salt fix and lots of water. I have good weeks and bad weeks and don't see any reason why when my program stays the same. It drives me nuts that I can't make plans because I never know how I'll wake up. Will I be me who can get out bed and function (not as well as I used to but better than I was doing) or the not me who can't stand without dizziness and nausea.

Now my interest says I have low thyroid tests. Is this common in POTS +?

Help! The sudden onset threw me for months; I'm still trying to adjust to living with this. I welcome thoughts and comments from everyone.

[Chaos]

Welcome! Glad you are jumping in to the forum. Sorry you have a need to be here.

My POTS symptoms came on after surgery in 2007 and then it was exacerbated after another surgery in 2009. I was talking to a neuro at Mayo recently and he said that surgery can be a trigger for neuropathy, especially if you have a predisposing factor like EDS or a family history that would predispose you to having it. That can happen even without the incidental nerve damage that you experienced as a direct result of surgery.

I definitely hear you about the frustration of not knowing which "me" is going to wake up in the morning. OR which "me" is going to show up later in the day. Guess it's all "me" but I'm not as fond of some aspects of "me" as others. I am tired of never being able to plan ahead as I don't know what I'll be able to handle. On the other hand, it truly forces me to "live in the moment" since that's the only thing I can be sure of these days.

You're certainly not alone in your frustrations dealing with this problem. Hope you can get some support and info here.

[brigit2006]

Thanks, Chaos, for the support. I do so hear you about living in the moment. It took me a long time to get over feeling sorry for myself to moving on to realizing that I am not rowing the boat. When I have the bad days I keep telling myself that they will end and I'll go back to being the other me. I've been keeping a journal and that's helped a lot to see that the seeming chaos of these attacks (just like chaos theory) eventually have a pattern, which is to have no pattern.

teach1994

[Avc1975]

I just came across this. My son had to have a thoracotomy to reinflate his lung. He was on Fentanyl and morphine at the time so we didn't see any issues while in the hospital. Upon release he was on pain meds for a week. Upon finishing his medicine he began to have dizziness, rapid heartbeat..etc. After SEVERAL TRIPS TO ER HE was finally diagnosed by cardiologist (after tilt table test) that he had P.O.T.S. I felt the whole time the 2 were related. But of course some Drs dismissed this notion. He was COMPLETELY healthy before this. Had just passed a FULL PHYSICAL. blood work up and all.

[Shannoncr]

@brigit2006 I haven’t had surgery, but I have syringomyelia which is like a cyst growing in my spinal cord. It goes from my c5 to my thoracic region. I’ve read POTS is often associated with Syringomyelia because of nerve damage so I’d assume it would be similar if you suffered nerve damage in surgery. I found a picture/chart that shows all the different nerves & systems in the spine & what possible symptoms could be associated based on the area of the spine where there may be damage. 

my thyroid is also low but I don’t know if it’s associated with POTS, though it seems quite a few of us have thyroid issues. 

I’m sorry you’re dealing with all of this 😢

[yogini]

10 hours ago, Avc1975 said:

I just came across this. My son had to have a thoracotomy to reinflate his lung. He was on Fentanyl and morphine at the time so we didn't see any issues while in the hospital. Upon release he was on pain meds for a week. Upon finishing his medicine he began to have dizziness, rapid heartbeat..etc. After SEVERAL TRIPS TO ER HE was finally diagnosed by cardiologist (after tilt table test) that he had P.O.T.S. I felt the whole time the 2 were related. But of course some Drs dismissed this notion. He was COMPLETELY healthy before this. Had just passed a FULL PHYSICAL. blood work up and all.

There is definitely a connection between surgery and triggering POTS.  If you google you should be able to find articles that you can show your doctor.