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

[pm64]

I saw Dr. Thorell in omaha.  Thanks for your opinion.  If I had not seen the mri I wouldnt be so upset, but you could clearly see something within my spinal cord. Im going to go for the new mri and then get copys of both and go elsewhere.  Thot about going to Denver, sounds like that Dr. Oro (or something like that) is very good with this.

[selmaS]

  Hi...I am sorry, but what u r experiencing is  what we call the Royal Chiari/Syringomyelia run around.Not all Drs r well informed or experienced in this area and will not admit that nor will they concede that either could be causing pain.

I am not sure who u saw today, and what experience they have/had in this area...all I can suggest is go get another opinion. I had this happen to me a few times with so called experts  in NS...but they did not know chiari even tho they claimed to....

  Chin up : )

  "selma"

[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!!!

[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

[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.

[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"