chiari pain

[heysue]

It's been at least 6 yrs since my Chiari Malformation Decompression surgery. As of the last several months, I've been getting a random burning sensation at the incision sight. Can you tell me what this is and if it is normal?

[selmaS]

  I believe it was a vision or eye issue....so serious for a NS but not sure how so for him outside of his career .

Let me know if you have any other questions.....

Butt huh?...never heard of him/her b4......

[heysue]

Thanks! I'll have to look those conditions up.
The neurologist I had was female. I hope it was nothing to serious with the one that left. I had a gastroenterologist, name was Dr Butt,

[selmaS]

  Sorry.... EDS = Ehlers-Danlos Syndrome,PDN= Post Nasal Drip,ICP=IntralCranialHypertension,POTS=Postural Orthostatic Tachicardia Syndrome,CCI=CervioCranial Instability

Oh Barretts....that is difficult to deal with for sure.I had reflux so badly water affected me as well....however mine did not develop into Barretts.


Oh I know there was a Dr there that left.....I think he had his own medical issues if I am remembering correctly and if it is in fact the same Dr.

[heysue]

I have no idea what those letters stand for. I no longer have am esophageal sphincter  and have Barrett's esophagus. Anything I eat or drink (even water) comes back to haunt me. I am on meds for it, but nothing totally helps.
I am in the process of getting an appointment at Cleveland Clinic. I have to find a new neurologist. Looks like the one I had, is no longer there.

[selmaS]

  With EDS many of us do over produce histamines....and that can cause PND and then cause reflux....so until you get the PND inder control you will continue to have the reflux...also when in a flare do modify diet and lifestyle to help calm the flare down..

There are several conditions that need to be ruled out Syringomyelia, ICP,POTS, CCI, Tethered Cord, Ehlers-Danlos....

Do keep us posted on what you find out.

[heysue]

I only remember they ruled out MS. I have 1 small lesion on the brain. I agree, I may be making a trip up to Cleveland Clinic for this issue. TY.

[Wyssa]

I 2nd SelmaS question of did they rule out all other conditions before your surgery? You may be dealing with something that wasn't taken care of with your surgery, and you may need to see a chiari specialist for it, especially if it gets worse over time.

[heysue]

Also since the decompression, I have been diagnosed with narcolepsy. The burning prickly sensations are random, and stops me in my tracts. I have severe acid reflux, and I also get the burning in my neck when the reflux flares.

[selmaS]

  Hi and welcome back to MedHelp !

May I ask what you are doing prior to the sensation...I would say it is not normal to have random feelings like this....did they rule out ALL related conditions b4 your surgery?

How have you been the last 6 yrs? Do you still get the sensations in your feet?