Small Syrnix Docs Deny it

[mastermatt]

Ive had back/leg/arm/neck pain and numbness for a couple years. I just had a MRI that showed a "Minimal Syrnix at C6-C7".... at the exact spot all the pain seems to start! Ive now seen my PCP and a spine specialist that will not even entertain a conversation about it. They believe it could not be causing any pain and that i just need physical therapy, that i know is going to make me too sore to move. My question is, how can i get a doctor to listen to me and or simply google the word "syrnix" and read about it? Im really tired of hurting and begging for pain pills!

[selmaS]

  Well my DD was trying to get me to do it for yrs....she has been exposed to it with being a dancer....and feels it will be helpful to me...and this was yrs b4 I got my dx and told to try it by the NL....in fact I LOL literally when the Dr mentioned it bcuz he said I want u to try this, u may never have heard of it, all he said was fel and I finished it for him....and he chuckled as well....

But I have not been able to understand the process....

[Viva001]

The way Feldenkrais was explained & demonstrated to me is:  turn your head from the top of your head, not from your neck. I found that clear as mud.  A neighbor didn't get it either, & this same PT is her personal friend.

In my killing time by shopping online today, I came across a shirt for health care pros called "intelliskin", which is supposed to help maintain good posture.
I didn't notice the price, but I'll bet if they're targeting them & not patients, it must be expensive.

[selmaS]

  I would suggest u keep a journal of how u feel know  and how u feel after doing certain activities and then follow the PT and see how if affects u.

I was also told by a NL that posture is very important to those with spinal pain...and was told to look at the Feldenkrais method...unfortunately there r no classes in my area and I tried reading a book on it and could not figure it out....lol...but I know posture is important and not just something our patents and teachers to nag us about....sit up straight etc....lol...

[mastermatt]

The Docs i work for are mostly family practice and urgent care so im not surprised they dont know much about this. They referred me to a spine and neuro specialist (this mornings visit) where i was told PT to fix your posture and you will be ok. I cant recall an injury to the area but im a 31 yo male that has fallen from treehouses, ladders, roofs, etc many times as i tend to do stupid stuff haha. Ive broken down and made an appointment at a pain management clinic. If its a choice between the pain and going to a pill mill i guess i dont have much option.

[selmaS]

  But Numbness is not something u should be dealing with and it can lead to loss of feeling....what type of Drs r the ones u work for? Not that they r not good but I wonder how much they know about a syrinx....there is so much new info out there from the specialists that do research.

Aww no worries...that is y I am here....

May I ask did u ever have an injury in the area where the syrinx is? Just wondering how urs may have formed....

[mastermatt]

Tried that this morning. I was told that numbness isnt pain. We arent going to deal with that. BTW Selma, thank you so so so so much for talking to me! you are the first person to do so other than my wife (who im sure is getting tired of hearing about it haha)

[selmaS]

  I would say ok, the syrinx is not an issue, but what is causing the numbness I do have?

[mastermatt]

I have a wonderful team of Doctors (i work for them). But none of them want to talk about the MRI results other than to say "youre fine". Ive also been told that probably everyone has a Syrnix or two, they are normal.

[selmaS]

  Many of the Chiari specialists will review a MRI for free or a nominal fee....it could be the Drs u have seen so far do not have the experiences and knowledge to look for other reasons as to y u may have the syrinx or the symptoms.

  Do u have a good PCP?

[mastermatt]

Thanks for the responses! Herein lies the problem. I cant get anyone to investigate it so I have no idea how it got there. The MRI was a Cervical only as thats all my insurance would cover. The report said that the discs were all normal with the note "A minimal syrnix at C6-C7". That is all the information i have about it. I do have the MRI and the report.

[selmaS]

  Hi and welcome to the Chiari and Syringomyelia forum.

Many times a syrinx is too small to do nething with, too small to use a shunt or stent,...so many times they look to how the syrinx formed....do u know if urs was congenital or acquired?

  The one surgery that is done for a symptomatic syrinx is a posterior fossa decompression, this is for those with Chiari....the herniation of the cerebral tonsils cause the syrinx to form....

If ur syrinx is due to an injury, and is too small for surgery, then there is not much they can do....see my journal on syrinx and shunts article.

  A NS that is well experienced with Chiari is the type of Dr u will want to see.

  Do u have copies of all ur MRI's and the reports? What area did they do the MRI on?

[mastermatt]

From what the PT office told me when they called its "over glorified massage" and no one has addressed the syrnix. They do believe the pain will disappear with PT

[billyz123]

I don't see how any syrinx could be taken lightly. What type of physical therapy did they suggest? Did they think that PT would resolve the syrinx? I'm so sorry you're having such a hard time, be strong!<3