nervous

[pm64]

Ive already been to 2 neurologists who say my syrinx cant be causing the pain and symptoms I have. Thursday im going to a neurosurgeon who specializes in the chiari and syrinx. Just worried I will hear the same thing again. I do have fibro also but dont think all my pain is just from that. I picked my granddaughter up yesterday just one time and that caused alot of neck pain and a headache. Ive also been getting a numb feeling in my face, sometimes the whole thing and sometimes just on one side, im also very clumsy lately and drop things. Most of my pain is in my neck, shoulders, arms, and legs, and sometimes my chest and ribs. I have gotten very weak to, even a gallon of milk is really heavy to me. Are these some of the symptoms everyone else has? I lost my password for this sight so I havent been on here for quite some time.   pm64

[rod44]

Hi pm64, vent away, we understand the need to vent. It can be very frustrating when you are dealing with so much ignorance and lack of a desire to understand No one can begin to understand what having this illness is like.
I have had many different diagnoses over the past few years, everything from Menears Disease, Benign paroxysmal positional vertigo to Peripheral neuropathy. One doctor will come up with a DX, I will be sent to a doctor who specializes in this illness, this new Dr will say no it is not that and so the cycle begins again. Eventually when I got my DX it was very obvious on my MRI so the Dr's could not deny the DX. This did not change anything because now they say my symptoms are not consistent with my DX yet they cant say what is causing my symptoms, add insult to injury they dont seem interested in finding out what is causing my symptoms.
OK now I'm venting lol

You should ask if there are any other abnormality's on your scans.
If you have had any injury to your neck in the past you need to make your Dr aware of this.

Ray

[pamelalg]

This is my first time here. My 31 year old daughter has just been diagnosed w/Chiari 1 Malformation and Syringomyelia. We have had two surgeons recommend surgery.

It is my understanding that given she has developed the Syrinx, though her symtoms aren't too severe yet we should have decompression surgery.

I would appreciate any suggestions/input regarding this.

Thank you-

Pamela

[selmaS]

  Hi and welcome to the Chiari forum.

Well first u may find NS's that suggest surgery, but do be sure they have experience ....this is a surgery that u do not want a dr that only does a few of these...u want a dr that their main focus of their practice is chiari and chiari related conditions.

Not knowing whom u got the surgery rx from, I can only suggest u take a look at their credentials.

Once u have a dr u feel comfortable with then move forward with what they suggest is the best method of action.

Did ur DD have a CINE MRI?...was she checked for tethered cord, ehlers-danlos?...ICP?

  Do u know how large her syrinx is?Where it is located and what symptoms she has as a result of it?

   "selma"

[pamelalg]

Yes, she had a Cine MRI, but nothing has been said about a Tethered Cord, or the other things you mentioned. The neurosurgeon we me today did not seem to want to share where the Syrinx was at. My daughter really like him and felt good about surgery.

He  said he had performed hundreds of surgeries. Nothing on his bio said anything about Chiari or Syrinxmyelia, although he does specialize in the skull base.

Thanks, Selma.

[pm64]

Hi again. So it sounds like you have been to a bunch of quacks to. I hope this one im going to takes this serious, or I might blow up, lol.  Have your learned whether or not the size of the syrinx matters??? Mine is only 8mm.  Ive heard both so just curious how people that know more about this feel on the subject. Thanks.           Peggy

[pm64]

Well I had my appointment today. And this is what I was told. Im not sure what we are seeing in the mri is in fact a syrinx, and the pain you are feeling wouldnt be from this if it is a syrinx. Im not saying its not so lets do another mri and then we will know. I saw the mri and there is definately something within my spinal cord.  So frustrating!!!