syrinx size

[bosmama401]

The only thing I've been told at all about my thoracic syrinx is that it is 5.7 cm. I see some of u know the measure across as well as how far down the tonsillar ectopia is. All I was told is that my cerebellar tonsillar ectopia is mild. What I need to know is, is a syrinx my size considered small, medium ? Also, can one this size cause the symptoms I am having?( pain across upper back and neck, headaches, and feet that feel numb, achy and tingly. Thanx to all of u for all your advice. I go to the NS Jan. 6, and thanx to this forum, I know what I want.

[selmaS]

Hi...many of the Chiari drs will accept ur MRI's for review, however some will charge a nominal fee to give u an opinion...others will not with the understanding u will be going to see them....and most will not make an appointment to see u unless they feel ur chiari and or syrinx or other related condition is the reason u r having symptoms.

We do have a list  of drs, u still need to call to see which work with ur insurance, and which will review ur MRI's....u also want to ask questions to see which u feel most comfortable with....so u do have to do ur own research...our list is not a complete list, nor is it to be considered a referral.-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

"selma"

[bosmama401]

Thanx for your calming way of explaining things that seem so complicated. When I go back on the 6th to my NS, I am going to tell him I want the mri done that shows if my spinal fluid is blocked by my spyrinx. Hopefully, he will go along with this. Do u no a good specialist that will let me send my film to him and give their opinion that way? Thanks again, Selma

[bosmama401]

Thanx for ur help. I didn't know u could send your film to a specialist in SM. That would be a better option for me cause I have checked round here, my closest specialist is the cleveland clinic. How do u go about doing that? The NS taking care of me now has me going to PT cause I was having pain from issues with my lower back.. He seems to think theres no hurry with the syrinx. Had me drop off all my film at last visit for him to study before my next visit. Hopefully, I will trust his opinion better after next visit. To be honest, the PT is helping my lower back pain, but yesterday they put weights on my hip area to take pressure off my spine. Did help take pressure off there, but last nite upper back where syrinx is hurt more. PTs said therepy won't hurt syrinx, but I worry.

[bosmama401]

Thanks for response. Yes, I was Dx  6 wks ago. Had feet symptoms for 1 year, thought it was cause I work15 hr. days, but been off work for 2 wks. and feet still problem. My neck hurts worse when I lay down on my back, does yours?

[hdavids]

HI
I have a syrinx from T6 to T10 mine is just over 6 cm in length (I think) I think it might be causing your symptoms I have the same pain as you.. burning pain between shoulder blades, headache, tingling and sensation loss in my feet among other things  
They tell me that mine is small and could not be causing these symptoms but I do not believe it and that is why I am seeking help from a specialized Chiari and Syringomyelia Dr. in the US ( I live in Europe)  
They say my cerebellar tonsillar go 1mm down and that is nothing I have to worry about. I however wont be calm until I hear that from a specialized C & S Dr.
Please go see a Dr. who knows what he is talking about, it could save you a lot of pain, tears and stress.
Can I ask, are you recently Dx?
If I can be of any further help don't hesitate to pm me, It looks like we are experiencing similar things :)

[Jennyfoo]

Well, according to the latest dr I went to, your syrinx isnt even a possibility because they ALWAYS form in the cervical area, never tanywhere else. He also said that since I had a thoracic MRI 15 months ago, I don't need another one because syrinxes take YEARS to develop. They can't develop over a few months. I highly suspect I've got a thoracic syrinx due to burnng, searing pain that's spread up my mid back + some other symptoms that have cropped up over the past year.

Yes, you, like me, needto get in with a true Chiari expert as Selma said. I'll be sending my films off soon to one of the experts; leaning toward TCI in NY.

Good luck to ya!

-Jenn

[selmaS]

Hi...many times u do not get this info bcuz the dr u r seeing is not a specialist in this area,....u have to wait until u see a true chiari specialist to find out the extent ur syrinx is affecting u.

Once u have a syrinx, most drs tend to choose surgery or at least offer it as an option as surgery is one way to help prevent the formation of a syrinx...left untreated, it will only get worse.

A Syrinx can grow and cause possible nerve damage...once u have nerve damage it can be a perm issue that will not resolve with surgery....so u want to get to a dr that is well experienced  with syringomyelia as well as chiari.


I do not have a syrinx, but like chiari, it is not the herniation or length as much as the width that creates the bigger issue...ur Dr appt is fast approaching....and should be  a way to get ur answers.

"selma"