I'm having a symptom that I'm pretty sure must be related to Chiari but I can't find anything about it in the discussions that reference sweating so I need to ask if anyone else has experienced it.
I have a lot of trouble with heat regulation, but this doesn't seem related to it. There is a single spot near the base of my spine, around 1 inch in diameter, that sweats like crazy. I can be sitting in a cold room, warm room, whatever, and it happens. I won't sweat anywhere else and this spot will be pouring.
The first few times this happened, I figured it was a freak incident. But, now it has happened over and over and sometimes lasts for hours or days.
I know Chiari can cause some crazy things but this one doesn't seem to be on any of the lists ;-)
I have never had an MRI of my T-spine, only Lumbar and Cervical. No new imaging since surgery, except an x-ray.
Surgeon originally said maybe tethered cord (ends just on the line for Dx, apparently). However, in the post-surgical report, he said that there was no tethered cord. I don't know if he could tell that from something during the surgery or what. There were no new images for him to base this opinion on.
Mandy said:
Hi Asa, sorry to hear you're having symptoms again. Have you heard of tethered cord? It may be the fusion has caused an underlying tethered cord to start causing symptoms. Also, have you had follow up MRIs? Full spine? To clarify, you had fusion but not decompression?
Ooh, localized sweating. That's a good term. Have googled all kinds of other things. I'll try that.
My general heat intolerance has improved since the spinal fusion.
Must be frustrating to have the doctors point to hormones. Argh!
Rebecca said:
I believe I saw questions on a new patient form I filled out for Chiari symptoms at one point. If you do a google search on Chiari, excessive sweating, or excessive localized sweating, a lot of topics pop up.
I don't have localized sweating. I get massive night sweats. But, I'm a woman - and everyone wants to point to hormone issues. I'm only 34. Gack.....
Well, I've been googling localized sweating and Chiari all afternoon. Most of what comes up is about excessive sweating under arms, on feet, hands, etc. Nothing that sounds like what I'm experiencing. It is super strange and I feel like it could be important if only I could pinpoint what's going on. Tethered cord has my vote but, who knows.
For the moment, I'll leave it out of my conversation with my NL. Seems like it might sound a little over the edge. LOL.
Thanks for all the ideas. You never find out if you don't ask but I've become pretty hesitant to ask doctors before having some clarity myself.
Thank you, Abby. I will have to look this all up. Too many words I don't know the meaning of.
What seems strange is the way it is localized. Everything I read talks about hyperhidrosis in areas such as hands or feet or underarms. Not weird nickel sized patches at the base of the spine, with everything around it staying perfectly dry.
Maybe it isn't important at all but, it seems so strange that it must be significant.
Abby said:
Hyperhidrosis with Spinal Cord Disease
Autonomic dysreflexia is a potentially life-threatening syndrome affecting patients with spinal cord injury at or above the level of T6. In these patients spinal preganglionic sympathetic neurons disconnected from supraspinal regulation episodically exhibit unchecked reflexes. Ordinary stimuli such as bowel or bladder distension, visceral stimulation, skin irritation, or orthostatic hypotension provoke an exaggerated autonomic response characterized by hypertension; profuse sweating involving the face, neck, and upper trunk; facial flushing; pounding headache; nasal congestion; piloerection; and bradycardia.[33] Patients with syringomyelia may present with focal hyperhidrosis due to segmental hyperactivity of sympathetic preganglionic neurons.[34] In some patients excessive sweating occurs in regions above or below the level of the syrinx. Hyperhidrosis may subside as spinal cord damage progresses over time[34] or following surgical drainage of the syrinx.[35]
Hyperhidrosis with Peripheral Neuropathy
Hyperhidrosis frequently accompanies small-fiber peripheral neuropathies. Excessive sweating may occur as a compensatory phenomenon involving proximal regions, such as the head and trunk, that are spared in a dying-back neuropathy. In addition, patients with small-fiber peripheral neuropathies may have excessive distal sweating, presumably due to spontaneous firing of injured neurons.[29] Episodic hyperhidrosis also occurs commonly in patients with familial dysautonomia (Riley-Day syndrome), a hereditary sensory and autonomic neuropathy (HSAN III) that results from a splice defect in the IKBKAP gene on chromosome 9q31.[30]
I am RIGHT there with you on the night sweats! I DO think it's hormones though-just not the ones people point to... I think it's Chiari related as the increase intracranial pressure causing de-regulation of of hormones. Post decompression, I think my body is trying to find normal again. I'm either freezing or sweating. Laughing or crying. Energetic or sleeping. Ugh. :/
Rebecca said:
I believe I saw questions on a new patient form I filled out for Chiari symptoms at one point. If you do a google search on Chiari, excessive sweating, or excessive localized sweating, a lot of topics pop up.
I don't have localized sweating. I get massive night sweats. But, I'm a woman - and everyone wants to point to hormone issues. I'm only 34. Gack.....
I am sure this is going to sound crazy but I experience nerve related crawling in my breast.It always causes sweating,mine is all over. I used to have this feeling off and on everyday especially bad at night it would wet my PJs and keep me awake.My M.D.gave me a beta blocker and it has almost stopped this problem.It is still somewhat of a problem,but the drug was the answer.
I have another problem that is very scary my throat seems to just suddenly close or spasum.There has not been a diagnosis even though I had to be transported to the hospital,but even after lots of tests and a overnight stay there just wasn’t an answer.This thing is terrifying when there’s no help,just hope the throat never closes compleately.If anyone else has this symptom please let me know,this is complexling and scary.
Thanks for your attention to my question,it is a mystery.The symptoms that has been present since my surgery seems to be connected to the vagus nerve(maybe)it controls swollowing,gag,breathing,and voice.My voice is different,it was very high pitched as soon as I woke from surgery,it is not as bad now.The breathing issue is most important,just hope it will go away.Thanks!
The sweating has for so long been a issue for me too.I know that it all got a lot better after I was prescribed a beta blocker,it may be one of the many conditions that seems to go along with chiari.I haven’t been diagnosed with any of those things except for dysautonomia.tThere’s other things that might cause these symptoms.Ask your doc to give you a beta blocker.You can research pots,Eds,dysautonomia
That does sound terrifying! I had choking after my spinal fusion. It was so scary. Do you know any speech therapists or occupational therapists who specialize in feeding and eating. They couldn't diagnose it but they would be a good source of information about how the throat functions and maybe some interventions that could help when it happens. I hope they figure this one out.
Lynn Messer said:
I am sure this is going to sound crazy but I experience nerve related crawling in my breast.It always causes sweating,mine is all over. I used to have this feeling off and on everyday especially bad at night it would wet my PJs and keep me awake.My M.D.gave me a beta blocker and it has almost stopped this problem.It is still somewhat of a problem,but the drug was the answer. I have another problem that is very scary my throat seems to just suddenly close or spasum.There has not been a diagnosis even though I had to be transported to the hospital,but even after lots of tests and a overnight stay there just wasn't an answer.This thing is terrifying when there's no help,just hope the throat never closes compleately.If anyone else has this symptom please let me know,this is complexling and scary.