Syrnix

can someone explain or give reference location to how a syrnix effects cm. I was told I have a syrnix that is growing in length but not width. It is located in my cord and the NS says it can not be removed without causing more damage.

Hi Michael,

1st off I must say that I only have CM...no syrinx...so I have no 1st hand experience. However, from what I have read ..If a person has Chiari as well as a syrinx...there is a good chance that the syrinx may shrink on its own once decompression is done...a person with both CM and SM would most likely benefit from surgery...given that most syrinx are caused from the goofed up spinal fluid flow...

I must share my nieces' recent success with this...She is an MRI tech..her hospital had just gotten a new MRI machine and she volunteered to test drive it..LOL

Well..thank God she did...the MRI showed a Chiari Malformation along with a huge syrinx on her upper cervical spine.

She had surgery this past Sept and is doing great...follow up MRI shows that the syrinx is shrinking......she went back to work about 8 weeks post op and is still feeling good.

Keep us updated on YOU!!!!

Peace,

Lori

My syrinx has shrunk a pretty decent amount since 2003 when I had decompression. My NS was amazed at how much. I was told that actually going in to remove the syrinx isn't necessary unless it is causing complications where it becomes necessary. They would do a shunt for this. Causing more damage...I'm not sure of that. It is a very sensitive area in general so it's hard to say.

Lori,

Please be blunt cause at this point in time I am driving myself crazy with worry not for myself but for my daughter. Your niece just discovered her own CM, which I am happy for and extend best wishes in her treatment journey. On Jan. 30; my 8 year old daughter Katrina is scheduled for a brain MRI to rule out CM. Her pediatrician said he was familiar with CM and stated she might have CM due to her having a multitude of symptoms which we created a checklist and provided to him and as he saw in his notes from past visits.

Here is what I would like you to be blunt about; do you think that there is a chance that CM is hereditary? From the research I have completed, the answer is mixed not to mention confusing in their respective supporting arguments.

Here is a little background on me and family. I recently diagnosed with CM as of late November 2011. My brother was diagnosed with hydroceohalus (can be associated with CM from my research) in early to mid 90's when he was in his twenties and MRI was still relatively new. He told me to get bent (politely put) when I asked him to get another MRI to see if he had CM. My father passed but we never discussed his test results since his diagnosis was cancer. My mother refuses to get any medical testing due to religious beliefs. The rest of my family just thinks I am plain nuts for having this "imaginary disease", which we all here know is real and can make life hard.

Am I being an overly protective father or what?

Mike

Alicia was your syrnix still growing? Mine is and the NS said he wants yearly checkups due to its growth. As he told me it is not the length that concerns him but if and when it decides to grow wider. Not knowing length of the vertebrae in the body here are the line from the MRI report from Nov 2010 states syrinx seen within the central cord from the upper C7 level to the upper-to-mid T1 vertebral level. and then Nov 2011syrinx within the cord which is seen from about the C6-C7 disc level to almost the T2-T3 disc level.

So with this growing syrnix, I am concerned because my current NS doesn't want to do surgery due to the syrnix (so I am shopping for another one with a current appointment at John Hopkins on Feb. 7). The other thing that concerns me is the location within the cord makes me wonder; how could they shunt it without causing more damage?

I first hope I can find a NS to due the surgery kinda close to home and I hope it does shrink and go away. That would be great.

Waiting until the D-day of Feb. 7

Mike

Abby,

You help me quite a bit and thank you. I have read that link prior and reread again after seeing you post it. This though is like the other research I do, many times I can not or do not understand it or it frustrates me trying to read it with the text going boing boing boing across the screen. My wife helps me understand but read above with my reply to Lori, our minds are scattered with Katrina and Emma has been knocked down with a bad cold that turned into a mild form of croup, and maybe getting knocked again with a stomach flu. With her being only 3 it take a while for her to express what is bothering her and getting the medicine to aid her.

I am trying to take it one day at a time, but it just seems that the past couple of weeks the plate has been very full without and sign of clearing :(.

Take care

Mike

My syrinx has shrunk a lot. In the begining after surgery it stayed the same for awhile and then began to shrink. Mine is not growing as far as I know. My NS did not say anything about it growing.

I'm not too sure about the Shunt. I do know there are some people on here who have had it done (Names are slipping my mind...)

Michael Salasky said:

Alicia was your syrnix still growing? Mine is and the NS said he wants yearly checkups due to its growth. As he told me it is not the length that concerns him but if and when it decides to grow wider. Not knowing length of the vertebrae in the body here are the line from the MRI report from Nov 2010 states syrinx seen within the central cord from the upper C7 level to the upper-to-mid T1 vertebral level. and then Nov 2011syrinx within the cord which is seen from about the C6-C7 disc level to almost the T2-T3 disc level.

So with this growing syrnix, I am concerned because my current NS doesn't want to do surgery due to the syrnix (so I am shopping for another one with a current appointment at John Hopkins on Feb. 7). The other thing that concerns me is the location within the cord makes me wonder; how could they shunt it without causing more damage?

I first hope I can find a NS to due the surgery kinda close to home and I hope it does shrink and go away. That would be great.

Waiting until the D-day of Feb. 7

Mike