Cerebellar Tonsillar Ectopia

[Mel522]

I have been having vertigo, blurry vision, pressure in my head and neck and in my right arm pit. If I do too much I get pain in th top of my head. I have been told I have Cerebellar tonsillar Ectopia, anemia and asthma. Would any of these give me these symptoms and if so is there anything I can do for them to fix it the symptoms are getting worse and I haven't been working for a year. I was told the Cerebellar Tonsillar Ectopia could cause them but it was to small to remove. I read anemia could caouse them but shouldn't the symptoms go away if I have been on Iron for a year?

[selmaS]

HI so good to hear from u again. and to get an update on Mikey.

Do u have a chiari dr on mind?


We do have a thread of chiari drs of the members here...so if u need help let me know.

Good luck
"selma"

[mikeysmom1995]

Hi all,

MIkey went to see the neurosurgeon, and he said he definitely has Chiari. He wants us to come back in 3months time and have another MRI to check the flow of the spinal fluid.
We were telling him about some of the symptoms Mikey has been experiencing and he really didn't seem too concerned about most, like extreme lack of energy, headaches that occur in the front and back of his head, but the doc was only concerned about the ones in the back of his head, the shoulder pain, the confusion he seems to have, memory problems, shoulder pain because it wasn't constant, or because his fingers were not numb all the time, just sometimes.
This boy went from being extremely organized  in every aspect of his life and completely picky about all in his room for as long as we can remember to complete chaos. He is having trouble keeping all of his school stuff organized. Just totally not himself.
Now we need to wait for 3 mo. to find out more. I guess on the upside it gives us time to look for a Chiari specialist. We will probably have to travel, but will do what we have to in order to get the best care.
I have read that Devon had surgery this week, I will say many prayers.
Please forqive me for not navigating on the site so well, I am very technically challenged.

All My best to everyone,

Mikeysmom1995

[chadry]

I was just posting about the weather today myself. My daughter is having a bad day today also. It is raining here in Jersey.
I have noticed for over a year now that when the weather changes like this my daughter gets a headache and dizziness. I know it has to do with the pressure outside what she feels with the pressure inside her head.
Chadry

[sdhill76]

I've just recently started keeping track of my head/neck pains, and recording what I was doing/eating/etc., and also noting the barometric pressure, both when my pain is high or low.

So far (and I'm only about 3 weeks into this), I've noticed that whenever the barometer is above 30" I get the intense pressure in my head and neck.  It's not the *only time I get the pain, but I have started to notice that the high air pressure doesn't help.

Also, the cold, rainy days affect my left arm, I always thought it was arthritis pain, sometimes it's just in my shoulder, worst it travels all the way into my fingers.

But I'd say weather definitely plays a role.

~sonia

[hh505]

today it is raining like crazy here in fl. i've noticed that the weather has sometimes cause my head to feel like i am in a fog. so i thought i would see if anyone else has weather related problems in there head. otherwise everything is going along well. hh505 helen.

[selmaS]

Hi and welcome to the Chiari forum.

First let me say...they do not remove the tonsils......they do a decompression surgery to give them more room if there is a CSF blockage.

I can only suggest u get in to see a NS that specializes in chiari and chiari related conditions.

May I ask were u checked for syringomyelia....tethered cord.....pusedotumor cerebri...EDS....?? It is very important to also check for a blockages of the CSF....this in itself can be the worse part of these conditions.

If u have a copy of ur MRI and the report it will make it easier for u to go fora second opinion.....if not call the location where the studies were done and request both the MRI and the report copies...and do so for all tests going forward.

I would venture to say it is possible that ur chiari or a related condition is responsible for some of ur symptoms and that a lack of iron should have been cleared up by now, a simple blood test should show if it is still an issue.

U may also want to have ur thyroid tested.

"selma"