Chiari Malformation Community
Chiari Malformation 1 with syrinx
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Chiari Malformation 1 with syrinx

Well here I am on this forum as I recently found out that I have CM1, 15mm herniation with Syrinx. I have one more MRI on sat to see how bad the syrinx is as they were only able to see half of it. They did say it was med size but large means it cuts off all flow. I am familiar with CM as my twin has it and has had the surgery 10 years ago. I dont have the 'migraines"; however, I get the headaches when sneezing, laughing etc. I have SEVERE back issues, i get the tingles in my legs, hands and arms. I see the stars ALL THE TIME and my ears ring ALL THE TIME. These symptoms dont sound severe; however, they def make my life a living hell. Expecially my back. The NS recommended surgery and I know that it is very painful. Im on the fence. I know I need it expecially cause the syrinx and i should do it while I have a job that allows me to take time off and have medical insurance but I dont know. I dont want to wait to long and have permanent nerve damage.
What do you guys recommend?
Tags: Chiari chiari malformation, malformation, Syrinx, Headaches
5 Comments Post a Comment
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

None of us can tell u what to so, but I can tell u y I chose to have surgery...I had a CSF obstruction and no syrinx formed and I was having drop attacks, one that caused injuries that lead to 2 surgeries to fix....so, since my symptoms were getting worse and I was having surgeries as a result of falling, and it seemed the best way to slow progression and help prevent the formation of a syrinx....

  If u r not sure, mayb u do not have the right Dr....do see a few that u know r of the same caliber and r well experienced with chiari and go with the one u feel the most comfortable...ur dr should be able to guide u to what is best for u, as he can see just how this is affecting ur overall health.

And make sure they rule out tethered cord, and other related issues like sleep apnea, PTC, and ehelers-danlos.

How is ur twin doing post op?
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2118977_tn?1343271897
Thank you Selma. The doc I have is a chiari specialist and he recommended surgery and really not to wait past 6 months. I know I need it and will get it, its just that un easy feeling of surgery. I have never had surgery before and it to be on my head is difficult to swallow. Im scared of recovery becuase I am a mom of 5. I keep telling myself to call the NS Monday after my MRI an schedule it. I think its almost better to get it done while i still young and not having the harsher symptons like migraines and such.

My sister did well for while. She is now getting the migraines about 3 times a week and has a constant headache. She also suffers from severe back pain, shoulder, neck arm and leg pain (just like me) but we both have a few herniated discs and she has degenetive desease (sp?). I keep telling her to go get an MRI becuase after her surgery she NEVER had a follow up. She had gotten into an car accident and thats how they found CM1 and lucky she was able to get insurance to pay for surgery but as soon as the surgery was over they cut her off from it. Im really scared for her because of her pain and she does have sleep apnea as well.

By the way, I have read so many posts and I am so thankful for you! You are so knowledable and without people like you, we would all be in the dark with this....SO THANK YOU :)
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620923_tn?1405964489

  I am glad u r able to find some help from the posts here, that is y I am here and I hope some of the members continue to come back and post , to pay it forward : )

Many with chiari have the disk issues and I would suggest u check for Ehlers-Danlos as it can affect how u feel and heal post op...do make sure they check u for this...I feel like a broken record saying it, but it really is that important.
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2118977_tn?1343271897
HAHAHA! But its a good broken record :)

I will have to look it up and see what that is, but I will ensure that I get tested.

Can I ask you what recovery is like? I know everyone is different and my sister woke up after surgery SCREAMING in pain and I am soooo nervous about that. We are both tough cookies, so to hear here screaming in pain like that FREAKS me out!
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620923_tn?1405964489

  Well this is another reason to check for EDS b4 surgery as it can also affect how meds work for us, and that goes for pain meds post op....

We can develop an allergy to a med that we may have used successfully b4...case in point- I had a drop attack and needed surgery on my ankle and then my knee, well the meds used for pain with my ankle I could not use a month late for my knee as I developed an allergy to it....

I also had an issue in ICU post  op with my chiari surgery with morphine.....

SO it really does depend on the individual and and how well prepared u and ur dr and the staff r for all that may occur with u and ur issues.

  Other the the vomiting in ICU...I really do not have much memory of too much pain post op...I know I was not comfortable but I was feeling clearer, and it seems most of us do, and then as we heal we fog back up a little lol....

  Many of us do have our surgical journey posted in our journals in our profile page, click on my name and feel free to read mine,

  I would say the pain meds were not working for ur DS and u deff want to look into that being an issue so they work with u to keep u comfortable.
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