I found out in November last year.
I’ve been reading some of the posts on here and just started crying.
It seems like it never gets better! I have 4 children that I now can hardly keep up with.
I’m tired all the time. The more tired I am the more head pain I get. The worse the head aches are the more numbness I get. It’s like a never ending battle!!
I keep hearing about surgery… I don’t want to have surgery!! I don’t want someone poking around in my head!!! I just don’t!
I don’t want this!! I feel like I’m being punished for something!!! I’m scared! I’m confused! I’m mad! I just don’t know what to do or where to go! I forget things and it’s like it gets worse daily!
Please tell me it gets better!!!
I had never even heard of it before untill Nov.
What is syrinx exactly?
I’m just scared… I really don’t know what to do. I keep saying "Oh yea mines not so bad. There are different levels to type 1… blah blah blah… but inside I’m screaming and flipping out!
I feel like I can never have children again (we want more if you can believe that with 4 already)
I feel like I have to change EVERYTHING!!
I just… I can’t think. I can’t understand some things. I can’t remember things.
I’m glad to know I’m not the only one with this and that there are people who know what it is I’m going through.
DH sometimes acts like it’s not real. That I don’t really have anything wrong with me or that it’s just not that bad…
maybe i could show him this site and show him other people have the same things I do and can relate to me…
Actually I don't have a syrinx (that they have seen) and I was decompressed in November due to progressing symptoms. I was diagnosed and decompressed within a week. It is possible to still have more children with Chiari. My hubby also acted like it didn't exist up until we were sitting in the neurosurgeons office with him telling me he could do surgery in a few days. That is when it really hit him that all of my pain was real! I was terrified after the diagnosis and what they wanted to do to me, but it was to improve my quality of life, and it really has! It really isn't a death sentence (even though it feels like it), it will just take some changes on your part. We are all dealing with the same things and some people here are worse off than others (some need surgery, others don't). The point is...your life doesn't need to completely stop because of Chiari, you will work through your anger and come to accept it and find out what you can do for yourself (as we are all learning). Any questions you have on dealing with this crappy condition can be posted here and we will all try to help as best as we can. This is a great group of people who have helped me like nobody else and I am forever greatful for them all : ) I hope that you find peace and comfort in us...Glad you are here, and it's nice to meet you!
Hugs,
Crystal
It just feels like the world is coming to an end for me. I guess because I’ve just found out what this is and why i’ve had all these things wrong with me. I’ve had head aches and such for the last 3yrs and then last year started with the numbness and burning and pain…
I always wondered why my brain would feel like it was burning sometimes… and now I know why. I wasn’t having a panic attack… it was this!! I just wish it was something in front of me so i could yell at it
I have a syrnix and it is hard to describe. My wife describes it as a fluid tumor in my spinal cord. Sorry I could not do much more than that description right now
I get it, I really do! I freaked out when I found out what was causing my pain for all that time too...I went to countless doctors and endless ER visits before someone finally diagnosed me 3+ years after symptoms started. I was relieved though in a way because I finally had an answer and a name to go with what was happening to me...I guess I was just happy that I wasn't crazy (like most docs assumed I was). I hopped on a computer as fast as I could to learn more. I read as many blogs as I could and took in all the info that I could handle from other peoples experiences. I became obsessed with learning about Chiari and what was happening to me. I found comfort in knowing that I wasn't alone in all this and that there are people out there like me. I liked knowing what I was in for and what the surgery was going to be like. The day I was diagnosed I had to schedule my surgery date. It was something that I couldn't avoid so I sat in front of a computer right up until the day of surgery to find out more. After surgery was when I found this group. My advice to you is read more into it! Ask any questions from us and we will try to answer the best way we can. Also read people's pages, they tell their stories and what they have been though. It helped me. Good luck!
Crystal
hi, you are not being punished and your not going mad, now thats out of the way, what i can say to you is i had my cerrabellam tonsills removed and decompresson,that was 13 years ago. It was the best thing i had done, (have a look at my page) i now have found out that i have 2 cyst in my spinal cord which is a side effect of my chiarri surgery, but i beat 13 yars ago and i will beat it again, try not to read to many things about chiarri because doing that it will worrie you more and that will stop you enjoying your children and life is to short for that. Im sending you a big hugg. (X)
Abby is right. Everyone doesn't have surgery. I had my children, raised my family, went to school and worked all my life in spite of dealing with what I now know were symptoms of chiari,Type I. I'm proof that you can feasibly go all your life with Chiari and live a productive life. I would have times where I would get the excruciating headaches and dizziness or vertigo and couldn't function and then I would go for a long period of time with a minimum of symptoms. I went from doctor to doctor who just treated symptoms. Like you I was incredibly tired. Mine turned out to be an underactive thyroid and anemia so if you haven't been checked for those, you might want to do that. It wasn't until I insisted that they find out why I was so incredibly tired that it diagnosed. I think sometimes that not knowing I had Chiari probably made it easier. After I was diagnosed in 2007 and told I needed surgery I tried to concentrate on "living my life". Testing for Chiari surgery revealed a brain aneurysm which took several surgeries to fix. It wasn't until a car wreck caused my symptoms to worsen that I was told that I HAD to have the Chiari surgery. I still put it off for over a year - because like you I didn't want to have surgery and the thought of it scared me half to death. It wasn't until my symtoms worsened and an online friend wrote me something to think about that I amde a decision to have the surgery. I will share it with you.
She said - Of course you are scared, but think how wonderful it will be to be free of worry if you do have the surgery. You will know that you have done what you can to make your life better.....and then put it in God's hands and believe that it will be o.k. I thought about that and it put it in kind of a perspective for me. If I didn't have the surgery, I would forever worry that something bad might happen and there would definitely be a lot of unknowns. With having the surgery it would be "freeing" to know that I had done what I could to make things better and hopefully improve my quality of life. That thought actually helped me make the decision to have the surgery - once I made the decision - and it did take a while - I was at peace with it. It was going to be the first day of the rest of my life. I know I must be making it sound simple - it wasn't; it was a very difficult one.
I think one of the most important things when doing this surgery is to have a competent surgeon that you trust. Everyone reacts differently to the surgery and different surgeons use different approaches. For me, I feel I found the right surgeon and for me it was time to do it. I think we know when it's time. After the surgery for the first time in a long time nothing hurt. The recovery process took awhile and it wasn't exactly a fun time, but for me it wasn't horrific either. I'm still not perfect - I hurt sometimes - but I don't have the horrific headaches and most of the dizziness and vertigo is gone. I don't feel so foggy in the head anymore either. So, I consider it successful. After the surgery I wished I had done it sooner. Granted, at that point in my life, I didn't have to worry about taking care of my children; I'm sure that made it easier for me. I also had the support of my husband who did so much for me. I hope you have people in your life who are there for you too as you go through this difficult time. It wasn't until after I had my surgery that I found this site. There are so many caring people on here who will be there for you and answer questions. I'm praying for you as you go through these difficult times and make these difficult decisions. These decisions are so personal to each of us - and it's sometimes a lonely journey I know. Get a good doctor that you trust who will help you make it. A little rambling I know - hopefully something will help. Hugs.....Shirley
Thanks for your reply shirley. I had my op in 1999 i am glad i had it done, but i have found out i have 2 cysts in my spinal cord and my n-s told me its a side effect of my surgery, and at the moment they are being monitored. I aslo have spondilitis, scolliosis, sciatica and degereative disc disease, 4 disc at the bottom of my spine and 2 at the top are crumbling and i am in a lot of pain and loads of meds they dont work, but i beleive life is for living so i am gonna live and enjoy it i have a fantastic family and fantastic friends. I'm on facebook add me. look forward to hearing from you. xxx
I have some of those same problems too; I hope you don't have to have more surgery; but I do understand the pain associated with the disc and the degenerative disc disease.....it hurts. I went in for surgery for some of that stuff in January. After I got to the hospital at 5:30 in the morning and they hooked me up and had me ready to go, the neurosurgeon canceled the surgery because the breathing doctor didn't think there was room to get a breathing tube down my throat. He evidently wasn't prepared to use fiber optics even though they didn't tell me that. I was a little disappointed because I was looking forward to getting something done to get rid of pain......oh well - I think everything happens for a reason - and it just wasn't time. I'm going to look you up on facebook. I like your attitude - that's how I feel too. We only go through here once - well at least that I know of - and I don't want to miss it either. Hugs Shirley