RobinB Posted June 13, 2020 Report Posted June 13, 2020 Does anyone have stenosis and has anyone had the surgery to correct it? I was just diagnosed with severe compression in my neck which is causing me odd sensations in my arms and leg on one side. I’m going for further testing and then will be meeting with a neuro surgeon to discuss potential surgery. I asked if this could be the cause of my POTS and the answer was “no POTS is a heart condition” 😒 After doing some research I see this actually can correct POTS in some people. Quote
MTRJ75 Posted June 13, 2020 Report Posted June 13, 2020 I've read the same (POTS/CFS/FIBRO) and wouldn't expect most doctors to have seen these case studies. Obviously, don't consider a surgery you may not need on the chance it may help your POTS, but if you definitely need the surgery, possible POTS improvement would be a GREAT side effect. Quote
JimL Posted June 14, 2020 Report Posted June 14, 2020 I have stenosis all up and down my spine. In 2012, I had C4-6 fused. In Oct 2018, L4-5 and March of 2019, C2-4. A lot of my pots symptoms went away 4-6 weeks after the latest cervical fusion. I think spinal instability near or at the base of the skull can cause issues. Then there something called chiari malformation too that can cause pots like symptoms as can CSF leaks, which can happen with bone spurs. Funny thing, the pots didn't happen until 6 weeks after my L4-5 surgery and I had a CSF leak during it that they had to fix. I got a head ache the next day from it that I would have killed myself to stop it. They tried to sit me up and it was like someone put my brain in a vise. They put me head low turned off the lights and gave me caffeine pills. It went away, but it was no fun at all. Quote
RobinB Posted June 14, 2020 Author Report Posted June 14, 2020 Mine I think is C6-C7 at the really bad spot. I was told I would likely need the surgery regardless. The surgery terrifies me but if I could get rid of POTS I would be forever grateful. I have had fairly extensive testing for potential causes of my POTS and nothing has been found, nor even any co-conditions. So this could really be something! Quote
Pistol Posted June 14, 2020 Report Posted June 14, 2020 2 hours ago, RobinB said: I asked if this could be the cause of my POTS and the answer was “no POTS is a heart condition” 😒 ??? What in the … 😝😶🤔😬🥴😲😩😖 …. ! Quote
RobinB Posted June 14, 2020 Author Report Posted June 14, 2020 38 minutes ago, Pistol said: ??? What in the … 😝😶🤔😬🥴😲😩😖 …. ! And that was a neurologist who said that! So I did some googling and there’s a few studies that show improvement or recovery after surgery. Quote
Patrick Posted June 19, 2020 Report Posted June 19, 2020 This is interesting as I was just diagnosed with cervical stenosis. The spinal surgeon said I'd likely need surgery someday, but for now we're going to try some steroid injections in the neck and physical therapy. I don't have POTS since my HR goes way up and then comes back down. For example, today I had 3 cases of it going from 50 to 120 upon standing, but within a few minutes it was back down to 60's. Still, it makes me feel like crap when it does it - but fortunately it doesn't happen every day. The neck problems are likely the cause of my gait and balance issues, but a lot of the symptoms between the neck problems and my dysautonomia problems seem to be similar, so I don't know what's really going on. Since I have my gait and balance issues even on days that I don't have my dysautonomia problems, I assume my neck problems are the cause. It would be interesting to know if the neck problems cause the dysautonomia problems? Is that even possible? Quote
RobinB Posted June 21, 2020 Author Report Posted June 21, 2020 That’s what I’m trying to find out. The neurologist said no, but I know better than to trust doctors 😒. I too have gait and balance issues in addition to OI. Who knows... I also have sensation issues with the right side of my body that appear to be positional so I’m assuming that is definitely caused by neck/back issues. My 82 year old grandma has the same issues and is getting surgery next month. She gets dizzy on standing and has horrible tingling in her right hand. Quote
JimL Posted June 21, 2020 Report Posted June 21, 2020 I have always had pinched nerve issues with my brachial plexus and used to go to the Chiro when I had problems. In late 2010 I had been training for the Iowa State Games for Strong Man. One day I was doing incline presses and the right arm pushed the weight up, the left arm did nothing. I was like, ***? I dumped the weight, went to a Chiro and when he adjusted my neck, I felt a shock down my left arm. I took a couple months off from the weights, but it got worse. It felt like when you sleep on your arm all the time. Went to my doc and by April of 2011, I was told I need fusion. I put it off until January of 2012. I never had steroid shots or PT. It's been that bad. When I had neuropathy in my feet and foot drop, they did a MRI of my lumbar and my spinal chord disappeared at the L4-5 level from stenosis. No steroids, straight to surgery. I had to wait 2 weeks for insurance approval. IDK if it was from being heavy, lifting heavy, bad genetics and or all of the above, but its not been fun. Quote
Dale H Posted June 23, 2020 Report Posted June 23, 2020 I have cervical stenosis C5 level and bilateral nerve impingement C2-T1. It was causing a lot of pain and headaches and some as yet un-diagnosed POTS symptoms. I had PRP Lysate treatment of my C2-C5 facet joints along with a C7-T1 interlaminar PRP injection. Amazing improvement in pain but in the months afterwards started developing severe POTS symptoms. Talked to the doc again about PRP injections and he said with a working POTS diagnosis that injecting into my neck facet joints was definitely out as a lot of the autonomic nerves run through there. Was probably already on my way to POTS from previous injury and getting the pain relieving PRP Lysate injections may have accelerated the process. Quote
assutton Posted October 13, 2023 Report Posted October 13, 2023 On 6/13/2020 at 10:07 PM, RobinB said: And that was a neurologist who said that! So I did some googling and there’s a few studies that show improvement or recovery after surgery. I have chiari malformation which causes pots like or dysautonomia like symptoms. I just saw a cardiologist and asked him if my symptoms could be caused by chiari, he said “Absolutely!” and advised me to see a neurologist. Quote
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