Almost 7 years post op...

[chadwick007]

I am a new member here and just thought I'd share my story....
In June of 2002 I went into the doctor for what I thought was a pinched nerve in my right shoulder; I thought it was from playing soccer. He gave me Flexeril (a muscle relaxor) and sent me on my way. The "pinched nerve" got worse and I began feeling numbness through my right arm and up through my neck and right side of my face. I went to the doctor again 3 weeks later; they did CT scans and could not find anything. So... I took it upon myself to go see a chiropractor; long story short, he did adjustments to my neck, spine, etc on one day; the next day I awoke with double vision! This is when I freaked out! I demanded a referral from my primary local clinic where my health insurance was contracted with to the Mayo Clinic in Rochester, MN where I live. I did get the referrals; they did MRI's and immediately saw that I had CM and needed to have the decompression surgery. For the week leading up to the surgery I still had the double vision; numbness, tingling... the double vision made me constantly nauseus; all I wanted to do was sleep.
I finally had the surgery and I can say that it was a complete success! This was 7 years ago! Since then, I still do have numbness in my right shoulder, a little bit of dizziness from time to time, but it is something that my body seems to have compensated for. I am very active; I a run about 5-7 miles per day (only on treadmills though, as concrete is too tough on my neck), I lift weights, skydive, etc.... I am luckily able to stay very active!
I rarely think of myself as having had CM; do I still have it even though I am post-op? Anyway... I am thinking about this now becasue a close friend has just been diagnosed with CM; luckily she will be having her surgery done at Mayo Clinic as well; which is ranked #1 in the US for Neurosurgery.

I am hoping that people do realize that there are brighter days ahead once you get a correct diagnosis and surgery; anyway... this was the case with me. Obviously, I am not completely "back to normal" as I do have the numbness, some aches and pains, etc... but I think I have been able to adapt and almost shut out those physicalities; your body has a way of adapting to its new condition.... I do forget that I went through this 7 years ago, but it is good to remember this from time to time as it keeps me grounded a bit.

[jinglebells]

Hi Chadwick007,
I am so pleased all is good for you and i would like to thank you for sharing a positive side to surgery.I am due for surgery in October and have doubtful thoughts about it,so it is very helpful to read that surgery is good for some.Thank you for taking the time to write of your experience and i hope everything stays good for you. Jinglebells

[wendi]

Hello Chadwick:

Thanks for sharing your success story. These are so important. All to often people only see the gloom and doom of cm. They need to see that many times with a PFD, you can improve and life does go on.

You do still have cm, BTW, your surgery was a treatment, not a cure. Just be careful. We are here for you if you ever need us.

Wendi in PA

[storto321]

i thought i would share my story, i am 35 just diagnosed with cm1 in may of 2009, for 2 years i had symptoms. march of 2008 ihad bad head aches, vertigo,muscle weakness,the doctor told me it was migraines, i knew it wasn't migraines,i thought it was a sinus problem. then the symptoms went away, then in feb of 2009, the symptoms really flared up,i could barely get out of bed,i almost lost my vision,intense pressure in the back of my head neck pain ect, i was referred to a nerosurgen and he did a chiari decompression in june 2009, and in november he repaired psedomeningocele and inserted a lumbar drain for five days.now they are watching for hydrocephalus,i might be facing a third surgery where they put a shunt in. i'm trying to keep my spirits up. it is hard some days. i am still having symptoms of neck pain muscles weakness vertigo and vision difficulties..does any one have words of wisdom to share with me.......thanks christine

[wendi]

Hello Christine and welcome:

You may want to post in the other room all about chiari sryingomylia and other disorders. Because not everyone reads the success stories. Many people will check in there. Start a new thread to introduce yourself and tell your story.

You have come to the right place. You are not alone. Many of us were told it was migraines, depression, all in our head, drug seekers, etc, I was told I had fibromylagia and 2 kinds of migraines. I said to myself, hmmm, migraines that make me pee my pants and have trouble swallowing even water? I think not. I was lucky to find a woman in my town who had cm. I went to TCI and was dx'd with cm and tethered cord. You can read my success story here.

Do you feel comfortable with your NS? It sounds like so far he has dx'd you correctly and treated you so. Sometimes a shunt is the best thing for hydrocephelus. I have the friend I mentioned who has been living great with one for 20 years. So this is good news. I do hope you will stick around. These are wonderful people, who are strong, and willing to give to others like yourself.

Wendi in PA

[storto321]

hello wendy in pa,thanks for the words of wiswom and yes i do trust my ns he is great. do you go in the other room. i have met alot of wonderfull people on this website ....hope to talk to you soon...christine in ny

[wendi]

Yup, I am all over this place.............

[storto321]

hi wendy, look under chat about chiari,i'm in there as well....christine

[RIrider]

Hi chadwick007,

Just curious what your NS used as a dura replacement patch?

Thanks,

RIrider

[bharvel]

It's great to hear good things about Mayo. My daughter and I are searching for the best neurosurgeon. What neurosurgeon performed your compression? Did you have any blockage of your spinal fluid? My daughter has a 7mm herniation,but was told no blockage. Will Mayo do a decompression if the flow is good? She has severe symptoms and no life right now. We must find a neurosurgeon who will do surgery. I hope you can help. I was told that the Mayo Clinic didn't really specialize in Chiari. Thanks.