I feel my Chiari symptoms are coming back with more. symptoms

[patman817]

I have been starting to have hallucinations. Every time i hallucinate i get a bad chiari headache and one side of my body goes extremely weak. not sure if that could be the chiari but i also my breathing stops when i go to sleep

[selmaS]

Hi...you had decompression surgery already ...correct? You also stated an issue with your ankles....have you had that looked at? I wonder too, if you had a full decompression or if you had a dura placed.....?If you have EDS which could cause your joints to sublux....fall, that could explain your ankle issue and possibly why you continue to have symptoms.

Sleep apnea is a huge issue and you need to have that looked at too....ASAP !!!

Do you have a Chiari specialist?

[patman817]

no specialist but went to a walk today and met with an EDS specialist and found out i have all the symptoms of EDS and POTS. I told him trying to bring my leg muscles back but he said sometimes with EDS the muscle tone doesn't come back

[selmaS]

Fantastic!! Finding someone that understands EDS is just as important as finding a Chiari specialist....I had a similar issue and lost some muscle in my right leg it never came back all the way....I did get some with PT.....Keep us posted on what you find out.

[patman817]

well i am still trying to get a doc but noticing the leg is getting weaker. I have fallen 4 times today on the count of my legs giving out

[selmaS]

BTW it was aqua therapy that helped with my leg muscles.....try going to the EDS specialist they may be able to direct you to other Drs too.

[lasel22]

I used to hallucinate too before my decompression. I never told my doctors about it because I didn't want one more doctor telling me I had an anxiety problem. It would happen when I woke up in the middle of the night, often times feeling like I had to breath, I think I had apnea too. My vision would be a little blurry, sometimes I had vertigo, and sometimes my heart rate would be be high too. And my ears would be ringing really loud. I think it was all related. It happened maybe twice after surgery after I did way too much. it was like I was looking at a picture on the wall that would move with my eyes and then gradually fade.

[czbratt]

I noticed this week that three times I had pseudo-hallucinations. I am prepping for decompression surgery next month and I know that these symptoms must be associated with the CM as I have never had the visual distortions or pseudo-hallucinations before. It did not happen when I was asleep, I was awake and standing. It looked like my pantry shelves all dropped to the floor and the floor felt like it fell out from under me and I felt as if the floor dropped out from under me (almost like an elevator that makes an extra drop before the doors open). Then the next evening I turned to look at my husband and he looked like there were three of his faces one over the other vertically and then dropped down to his actual face and then they were gone. The all happened in like a blink of an eye. I never experienced these prior to this week.

[selmaS]

Hi and welcome  to the Chiari community,

I am not sure I would call what happened as pseudo Hallucinations as I feel what happened was a neurological distortion.....anyway, I had the sensation the floor was falling out and I was told to avoid darkened rooms or dark and light patterned floors such as checkerboard patterns....so I had that sensation in a grocery store with a checker board floor and once while walking on a walkway that was open grating. It was getting dark out so the area below was dark. May I ask, was the room dark when this happened?

I also had the odd distortions when looking at someone's face, not exactly like you described but it was strange. I have not had either since my surgery on '09.

May I ask where you are having your surgery done and what other conditions were ruled out at this point?