New to Forum- Not a question

[delicate_eyez]

Hi all! I am new here, obviously...lol. During one of my many "insomniatic" nights last night, I came across this forum and found it quite helpful, uplifting and also heartbreaking for those still having problems so long after surgery. It is wonderful that you all share your stories, whether it be from beginning to end, or piece by piece. It is hard to speak to people who do not have this condition. They sympathize, but don't understand the constant fogginess even if you are having a good day. I am glad that everyone seems to be so open and ready and eager to lend advice, support, and prayers. It is truly wonderful to have such a connection.

I have Chiari I with a syrinx from C2-C5, measuring 6.4 cm x 8 mm. I was diagnosed by MRI on November 16, 2011, and will have surgery on December 28, 2011. I did not have any progressive symptoms until my fall in August 2011. I use to get headaches and migraines off and on for years but not enough to make me think something was wrong. I would pop some ibuprofen or excedrin, sleep and call it a day.

Well, as I said, I fell. I went to an ortho, had physical therapy and trigger point injections. That barely helped. I also always felt worse after getting a massage from the therapist and would get dizzy when I would get up from the table. Now I know why, he was pressing directly where my syrinx was! He didn't know and neither did I, but at least I know now I wasn't going crazy...lol.

Anyway, the headaches were getting worse and constant, I barely slept, started having memory problems and couldn't recall simple words. I went to the ED on October 26, 2011 and the CAT scan was negative. I was told to go to my PCP for a brain MRI script. I got that done on November 16, 2011 which sowed the Chiari and then was advised to get a cervical MRI since a syrinx was visible. That was done on November 30, 2011.

So, I saw the nuerosurgeon on December 14, 2011, and it did not surprise me that surgery was needed (especially since my condition had got worse since my visit to the ED). Now, being the researcher that I am, I was well versed in Chiari language when I saw him, not that I was able to recall it all...stupid memory issues, but remembered enough.

So, this brings me to you forum. I really don't have questions at the moment because I searched on here and found many questions answered. The main ones of course being what to expect and what to bring to the hospital. I pray all is well and will keep you all in my prayers as I ask that you keep me in yours.

Blessings!

[irislita]

Hi,i welcome u too.i joined the chiari family not so long ago and i can tell u this is what i needed.there are so many questions,fears,emotions that non chiari people(even professional doctors) just cant help u with. Often we think we are crazy...but to meet people here that understand u is soooooo good.

[delicate_eyez]

Thank you. Having the support of people in your shoes is priceless. Family and friends are wonderful, but can only understand and take so much.

[delicate_eyez]

Gee, I was trying to reply but fingers kept hitting weird buttons...lol. I think I marked you as best answer trying to maneuver. Anyway, yes, I am nervous, but not worried or scared. I, along with family and friends, have prayed and given my condition to God and am believing in Him to take care of everything and for a full recovery. With God, all things are possible. Some people think I am crazy when I tell them I am looking forward to surgery.

Ugh, the balance issues. I have fortunately only fallen once. I can't imagine doing that on a normal basis, sorry to hear you are going through that regularly. I hope everything works out that you will not lose your vision.

Blessings to you and your and thank you for your prayers.

[delicate_eyez]

This forum is a tremendous help. Just being able to scroll through and see people's thoughts and their testimonies is a huge support. :-)

[linnielou232]

Hi and I also welcome you.  I have to agree this forum is a God's blessing for me.  Some of us have been where your at now, and we will be with you through your journey.  As Selma said to bad we have to meet in this sisuation but we are very grateful to have each other to literally on some day's lean on each other to hold each other up.  Thank goodness you found out about Chairi and you have done your research.  I also went to massage and wondered why it wasn't helping.  It make's it worse.  It is good to be the best informed as possible with Chairi.  If you need someone we are here for you.  Welcome to our Chairian family, and soon to be zipper head club.  Your added to my Chairian prayer's.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so glad u found us helpful and so sorry u had a need to locate us.

But, u r soooooo right only those with this condition truly understand what we r going thru....

Let us know how we can be of help, or support : )

     "selma"