Who has a small syrinx and symptoms?

[donlyn]

Hello,
I am still searching for a DR to believe that my small syringes are causing my symptoms. Even though the thoracic one is the entire length of the cord, it is considered "thin". Does anyone out there have a syrinx that is too small for surgery yet causes the "classic" symptoms. Headache (starts as base of skull), neck and shoulder pain, pressure in head when bending head down, or looking up. ringing in ears,feeling of ears being under water, can't stay asleep, dizziness , nausea and general fatigue.
I hvae been to (4) NS and (3) NL and they insist that small syringes do NOT cause any problems. I also have what they say is a Chiari Zero, which "ofcourse" does not cause any problems as well.
All I kn ow is that I am in pain every day (and every day it is a different kind of pain and sensation that I feel) I have been out of work since July and I need answers. I am at the end of my rope and don't know who to turn to anymore.
SO....anyone who is not a candidate for surgery adn has the above symptoms also??

[selmaS]

  Hi and welcome to the Chiari forum.

  Sometimes members do follow, but may not post for a while, it may be helpful to post a new thread to locate a active member with similar issues as urself and Donalyn.

We all may be diff, but have so much in common bcuz of chiari.....

I am happy to welcome u to the forum, but sorry for the reasons that bring u.

I hope u continue to share ur chiari journey with us.

[Hopie1231]

Donna, are you still reading this posting?  It is a 3 year gap---  I sure hope so!  I don't want to write too much in the event I'm talking to a wall--- but i feel like I'm reading my own writings !

[selmaS]

The issue u have is a dr that does not one believe in chairi0 and is not a chiari specialist....and there r some chiari specialists that do not believe in chiari0 also...so u really have to do ur homework.

There is a dr in TN...maybe u can send ur films to him and see what he feels is going on...call and ask does the dr treat chiari 0?

Then deciede to travel...there r several drs willing to review films b4 u r seen....however, some will charge a fee.

"selma"

[donlyn]

Hello,
I would travel if I knew it wasn't a "wasted" visit. It seems that when I ask to talk to the DR's assistants or nurse practioners BEFORE I make my app'ts they tell me that yes...the DR had many patints with syrinx's and small Chiari's and they do believe that they can cause symptoms. BUT....then when I see the DR's, they dont agree with what their medical staff told me. One surgical nurse said that she beleives that if there is something present in the body that shouldnt be there...it will cause symptoms...BUT she is not the DR.

Here is what one "so-called" Chiair specialist wrote in his report:
Review of the MRI demonstrates that the right tonsil is about 2mm below the foramen magnum. There is a holocord syrinx that extends fron C4 to the conus.Thorasic scoliosis without a compensatory curve. Thorasic syrinx form T4-T9.
Disk hermiations on C4-C7.
I do not believe that the Chiari malformation or syringes are causing her headaches, neck and shoulder pain. I do not believe that her Chiair meets radiographic criteria for Chiari malformation  or is the cause of her syringes.
He was in fact, the NS who TOLD met about the Chiari Zero/ Chiair point 5 and how it is overlooked by other NS's and how it CAN cause symptoms and syringes.
I ALWAYS tell myself that I should bring a tape recorder to these office visits and I ALWAYS forget!
He wanted to operate on all of my "herniated" discs ASAP.....but all of the other opinions I got (including the Radiologist's reports) were that the discs are not HERNIATED at all.
THIS IS CRAZINESS BIG TIME.
Donna

[selmaS]

Hi Donna, sorry I didn't remember it was an associate of Dr Greens, but good to know he is not a believer in the scholl of chiari 0.....I agree it may not be ur syrix's causing u an issue...but ur chiari that may b.

I know u have alot of dr bills as do we all....but I was wondering if u can travel to get to a chiari dr that does treat and beive in such a thing as chiari 0?

"selma"

[donlyn]

Hi Selma,
Yes I posted a few weeks ago that I did go to University of Miami, I saw a DR who works with DR Green. I also saw a NL who trained with Green and he said.."Bart Green" will never operate on you"  After seeing (5) NS, I am convinced that I am not a candidate for surgery. NS #5 told me that when a surgeon sees my MRIs, he doesn't get "excited" (he was being honest) He also said that the surgery is so risky with so many complications that unless the herniation is large and casuing very serious problems, a surgeon will not touch it. And as far as the syringes go...the consunses here in South Florida is that syringes with small diameters DO NOT cause symptoms. The NS and NL (I saw 4) all feel that since the MRI's are stable since 2003 so therefore, they syrinx's will not grow (hopefully) The reason why I am searching for a DR who can tell me that my crazy symptoms are coming from the syrinx's is so I will not continue looking for something else and just "give in" to taking pain meds.
Along the way, I was diagnosed with Fibromyalgia (which accounts for some of my symptoms) And yesterday, my cardiologist confirmed it and added that he feels I can add CFS to my list.
But my main complaints of pain (back of skull, head and shoulder). dizziness and nausea with bending my neck, tingling in extremeties, lifing or pulling and pushing something can't be tied in to either the CFS or FIBRO according to the DR's.
So to review here....I have (2) syringes...a small Chiari, symptoms of Syringomyelia and alot of DR BILLS!
I have not been able to work since beginning of July so I guess anxiety and stress will be added to my list of complaints real soon.
As always....it's good to vent!
Donna

[selmaS]

Hi...U deff were not to a chiari specialist if they said chairi 0 doesn't cause symptoms.....they r finding more with the smaller herniations or just over crowding can have more symptoms than a large herniation.....

Did u see Dr B. Green? I think he is in Miami...please research and see if he believes in chiari 0 b4 u make an appointment.U may also have to travel out of FL to get to a chiari dr.......

My surgeon was my 6th dr I went to .....it seems to take forever, but read Dr Oro's poem...it gives us all hope to know the right dr is out there.

"selma"

[rod44]

Hi
Well the doctors seem confident of there judgment but can they be confident enough to tell you what is wrong with you ….if it is not the two positive diagnoses that they have given you then what is causing your symptoms.
I have a Cervical syrinx and my doctors are even concerned about doing more damage when they are doing a physical exam on me.

You are entitled to answers.

All I can offer is keep trying to be heard. Success is your last failure tried again.

Best of luck
ROD