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Chiari 1 malf. symptoms?
I have been diagnosed with Chiari 1 malformation for a few months....I have hydrocephalus for 2 years now.
Lately when i get the real bad headache/pressure and neck pain, sores appear at the base of my skull, where head and neck connect ... they sting and burn quite badly for a few days. They heal on their own after a few days only to reappear when i have extreme symptoms again. Wondering if it's normal with chiari 1 or hydrocephalus to experience this. Everywhere i've looked doesn't mention this as a symptom, yet it only happens after a bad episode.
Lately when i get the real bad headache/pressure and neck pain, sores appear at the base of my skull, where head and neck connect ... they sting and burn quite badly for a few days. They heal on their own after a few days only to reappear when i have extreme symptoms again. Wondering if it's normal with chiari 1 or hydrocephalus to experience this. Everywhere i've looked doesn't mention this as a symptom, yet it only happens after a bad episode.
COMMUNITY LEADER
No worries u r welcome and please feel free to let us know if we can be of ne help : )
Thank you Selma and everyone here I greatly appreciate all your help. The posts on this site are a blessing. I know i'm not alone and I can relate alot. I never posted before because until now i have found answers and help in the posts made by others :-)
COMMUNITY LEADER
Hi...sorry we did not have the answers u were looking for...I know someone else that might be able to help...I will have her PM u....she also has Hydro and may know a bit more about some of the issues u deal with.I know we have a few here with both chairi and hydro, but have not heard of that complaint b4.
I wish u all the luck in getting a resolution to ur issues
"selma"
I wish u all the luck in getting a resolution to ur issues
"selma"
I see doctor Mehta out of the U of A Edmonton ab for hydro and chiari1 . Waiting for a bed to get shunt placed.
I went to my family doctor who did blood tests and has seen the sores. She admittedly knows little about hydrocephalus and less about chiari 1 malf. She does communicate with Dr.Mehta to learn about symptoms and try to help me. They are both awesome and supportive. She said the tests came back and do not show problems .... Today she said the sores look like "pressure sores, something to do with hydro" I am waiting for Dr.Mehta to return but was hoping someone here also experienced this and could give me ideas to help the extreme stinging and burning as after a day or two it almost becomes to much. She said to keep them clean and dry in hopes they don't get infected and so they heal faster that was all for now.
I went to my family doctor who did blood tests and has seen the sores. She admittedly knows little about hydrocephalus and less about chiari 1 malf. She does communicate with Dr.Mehta to learn about symptoms and try to help me. They are both awesome and supportive. She said the tests came back and do not show problems .... Today she said the sores look like "pressure sores, something to do with hydro" I am waiting for Dr.Mehta to return but was hoping someone here also experienced this and could give me ideas to help the extreme stinging and burning as after a day or two it almost becomes to much. She said to keep them clean and dry in hopes they don't get infected and so they heal faster that was all for now.
It's so weird that you mention this! I do experience this ever so often. I've always blamed on hormones or new conditioner. Never noticed a correlation with breakout and chiari symptoms-but who knows with this crazy condition??!!
I wonder if you may have shingles and the Chiari isnt causing it? But it might be causing Chiari symptoms to be worse? Are they like blisters? Do they follow a nerve line away from your neck? I know shingles can be very painful and last a long, long time! I am not sure if they go and come like that though. Next time they flare up have your PCP look at it.
Just a thought.
Pam
Just a thought.
Pam
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I know u joined us in Oct...but this is the first u posted on the forum.
As for ur sores/wounds I have not heard of this b4, but we r all diff...what could be happening is that ur hormones r going a tad out a whack during a flare up and could be the reason for the sores.
With having Hydrocephalus it is possible u r getting pressure on the pituitary gland too.
What dr have u been seeing for the hydro??
"selma"