Hi everyone. I introducing me

General
#1

Hello everyone.

I’ve been reading you for almost ten days and “you have accompanied me.” I had not introduced myself because this is not easy for me (or for anyone). According to my brain MRI from 14 days ago I have 3mm of descent in my right tonsil. But countless symptoms. And sometimes what scares me the most is thinking that it can’t all be due to an “bordeline” descent. I still have no diagnosis because my next consultation with the neurologist is on January 7. On last Friday I had an electromyography and a nerve conduction study on my legs. They told me that my neurologist would call me on Monday to discuss the results. And that’s tomorrow.

Yesterday, I laughed as long ago and I was left with trembling cheeks and eyelids. My ears are tight. Tingling and weakness in the legs. Last night I had a cramp on the left side of my abdomen (under the breast) and today I woke up with the area with braces and numbness (I don’t know how to explain it better). I also feel the same in my upper back (under the shoulder blade, especially the left one) feeling crampy and numb. And even on the neck and cheek on the same side (but in less intensity).

At least the feeling of having something pressing inside my ears has stopped bothering me.
The weird thing is that my head hurts very little. It hurt badly last week like 4 days in a row and it went away. What is more persistent is neck pain, especially on the right side (where the descent is).

I had a parathyroid surgery last August 24 and 15 days before I had been hit very hard on the upper right side of my head. However, the CT scan they did to authorize the operation did not report anything strange. In the MRI from two weeks ago, however, the descent of the amygdala appears. I don’t know if they will be related. On the other hand, in lumbar MR, severe osteoarthritis in L5 S1. I had a lumbar MRI three years ago and that reported small arachnoid cysts in S2 (I have had anal neuropathic pain that, now, thank God, is controlled). Unfortunately the new resonance only reports up to S1.

Thanks for the patience of having read this far.

I ask for any comments that can guide me and, to believers like me, also your prayers. A hug for everyone. (Sorry for my English)

#2

Hey Anamaria,
Personally, I’d certainly be recommending waiting for your neuro consultation…
…BUT PLEASE, do not go to the appointment with an expectation of a diagnosis or answer to you concerns. It can be a HUGE let down when those expectations are not met.

I say this because that is exactly what I did. I went to a neurologist with those expectations only to be belittled and made out that ‘Ohh it can’t be that bad… …when it gets worse, then come and see me’ :open_mouth: WORSE ? ! ? ! ? I was already having some wicked symptoms and he’s telling me it’s going to get worse??? This made me go looking for a 2nd opinion (Which turned into a 3rd 4th and 5th opinion) but, luckily I got an appointment directly with a neurosurgeon in the process.

There is a theory that if your tonsil is less than ‘X’ (Length) you won’t be symptomatic, but if you read through some of the other members post here you’ll see that is only a theory, not a rule. Members with much larger tonsils with minimal symptoms and yet others have a smaller tonsil but have no end of symptoms.

It’s that finding of a specialist neuro who has a specialization in Chiari. Now, I see you are in New York,
Just in doing a quick look, in New York there is a place called ‘The Chiari Institute’ that focuses on the treatment of Arnold–Chiari malformation and syringomyelia.

Now I must say, I am not a dr, I’m a patient and I’m in Australia. I am not making any recommendation here. I have no idea about The Chiari Institute, but it maybe a better place to start from with people who, at the very least, have some direct knowledge about Chiari, rather than just the theory of it all.

Hope it helps
Merl from the Modsupport Team

#3

Hello, thank you very much for your reply.

I have not had the consultation yet (it is for next January 7), but yesterday the neurologist called me to tell me that everything had gone perfectly: the brain MRI, the electromyography and the nerve conduction test of the legs. That I had arthrosis in the lumbar region, especially in L5 S1, and that he will indicate rehabilitation. I told him that I had a lot of symptoms. He replied that we would discuss it better in consultation. But, yes, it was disappointing, although I expected it because of everything I read here. I don’t think everything I’m feeling is due to my lumbar arthrosis. He had already informed me of the existence of the Chiari Institute in NY, although it is quite far away (I live on Long Island). My next step I think should be to see if they accept my insurance.

I hope your health is improving and I wish you Merry Christmas

#4

Hey Anamaria,
I’ve actually just found a clinic on Long Island.
Here’s a link Chiari Malformations Center | NSPC | Long Island, NY

Hope it helps
Merl from the Modsupport Team