ive got to see the surgeon soon. still waiting for a date. i know that i have a syrinx. the surgeon i saw in the hospital toldme as much. as well as the chiari malformation. i also have to have some dics fused. have had back problems for years and years and been putting that off. not sure if that is making it worse or not.
just really scared. ive been reading online and its all scary. i have yet to see many people, maybe one here or there that actually go back to living normally or as normal as people with chronic pain can be anyhow. seems everyone continues to have problems and that it either gtes worse or you continue to have more problems after surgery. evenfrom what ive read on here. maybe im reading wrong. i read info on the conquer chiari?? site and seems that most people just continue to suffer. if im wrong, someone please show me something positive. i know there are a few who say they are better after surgery but it seems for every one person who says they are better there are 40 who are worse, not specific numbers, justhow it seems while i am trying to research and learn all i can befor ei see the surgeon as so many people have suggested.
i mean with my back alone, i have put off surgery since the ortho surgeonhad said that once i have the surgery, they have to fuse about 6-7 discs in different places and now the syrinx and some other issues, that i will more than likely always have problems andother problms from it. so i dont know that brain surgery is good. not that i have a choice, the nurosurgeon said that becaue i have such a bad syrinx that i have to have surgery for that and the chiari. guess i am just still really blown away with this information. seems that nobody really has success. could just be what im seeing becuz im scared but i dont know.
anyone feel this way before surgery? i hope that there are alot of people here who have benefited and not had to have more surgeries after the brain surgery.
I responded to this topic in the other discussion that you responded to a little bit ago. I know you are scared, but if you have a syrinx, you really do need to have the surgery. By lessening the pressure on your spine and brainstem, it will help the syrinx shrink or disappear all together. Once the syrinx is gone, you may have less back pain, too! I had two surgeries after my decompression surgery. One was I had to have a shunt put in because my csf never went back to "normal". My herniation was 25mm and my brain and csf were so used to flowing in a weird pattern that it couldn't be re-routed without the shunt. Then I had C5 & C6 fused. The fusion was not bad at all and neither was the shunt surgery. The were minor problems that I had to have additional surgeries for. I think once you talk to your surgeon and get your questions answered, you will feel much better about the surgery. I won't lie and tell you that the surgery is easy, because it really isn't. You will get thru it though. Please let me know if you have any questions, I will try to give you an honest answer:)
I think it is natural to be nervous before surgery.....I had a neck fusion b4 the decompression...then NS wanted to wait 6 ths and see what symptoms were left...After the 6 mths we decided that there was some relief from the fusion but all the other symptoms were there..balance/gait problems, heaviness in legs and arms, H/A's head and ear pressure to name a few...Had decompression in 8/08....and I have had some positive things come from the surgery..it took a while for me to feel /see the progress...but it did happen..I still have sx's but I still have improvement from b4 surgery.
I know you are scared! It is definitely a scarry thing! The best thing you have is knowledge. You have information a lot of people didn't about what will go on with the surgery. You have people here to talk with who have been through it, who are going through it, and who have went other directions. Anything you need we are here for:)
I want to tell you some of my own story. I don't want to type it all up so its all on my profile if you'd like to read it all:) and also on here: chiari-life.blogspot.com
I was 15 when I was diagnosed with Chairi and Syringomyelia. I didn't fully understand it. All I cared about was getting rid of the pain. I was literally throwing up every morning. I was waking up with pain so bad I couldn't see right some days. I couldn't move my head/turn my neck at all other days. When I would wake up I'd run to the bathroom right away to vomit. Had I not had decompression surgery...well I'm not really sure if I'd be here. There was so much pressure that my NS said my skull was eggshell thin back there. He said it was good they got in when they did. He told me the syrinx may or may not shrink. He said the relief from the pressure may cause the syrinx to shrink or disappear but does not happen 100%.
I need to get my MRI pictures uploaded. The change in the syrinx between 2003 and now..is very noticeable! I couldn't believe it. My NS was actually surprised as well. I will work on getting those images soon. I told someone else the same as well so I'd better get my butt moving!! lol
Anyways I know it is different for everyone. I am glad I went through with the surgery. Obviously for the reason above as who knows what couldve happened if I didn't. The best thing you can do is get all your questions and fears out in the open before you go through with it. Write it all down. Talk it out with anyone who will listen. We are all here and all ready and willing to listen if you need us:)
I unfortunatly didn't understand any of it at the time. I didn't think to look things up. I didn't do any research on it at all. I just wanted my pain to go away and to stop puking. It helped a lot. I stopped puking like that. Now I'm not going to say it cured me. It sure as hell didn't. I have more symptoms now. Or it could be that I never noticed some...or they just progressed as I got older. Who knows. I do get the headpain that makes me puke but not like I did before. Nothing like the daily thing I went through before.
I hope this gave you something to think about or at least helped you in some way!
thank you everyone for being so supportive. support is something that seems to be in short supply to me. i read the website you recommended julie about the success stories. it was nice to read but i still see so many other non success stories that its really scarey to me. i know you understand being through the surgery and all. i guess i just have to make up my mind that since i dont have a choice and have to have the surgery its nice to know that there are people willing to help me get through it. i cant tell you how much that means to me.
thank you to all of you for your encouraging words. i guess i may feel better once i see the surgeon and discuss it with him. i only talked to the er neurosurgeon and he referred me to a neuro who does alot of chiari surgeries with syrinxs. just waiting for them to call me back. i guess its the unknown. i want to look up the surgery process but i think it will scare me even more than i already am. maybe i will feel better about looking it up after i meet with the neurosurgeon.
thank you all of you for your support and understanding. it makes such a big difference to me.
It is okay to be scared. We all were scared before surgery. I remember going into the holding area before surgery and my surgeon told me I was as white as a ghost with fear. The anesthesiologist came right away and gave me something to calm me down and start putting me to sleep. I didn't know a thing after that!
For some people, too much information makes things worse. If you don't want to know anymore about the surgery, don't research it. Just listen to your surgeon and ask the questions you want the answers to. I will be praying for you.
Have they called you from the NS office yet? Just wondering when your appt is to go over your MRIs and surgery options. Please let us all know so that we can be aware of what is happening with your situation. Don't be nervous! Just go in there and ask the questions so you are clear about what needs to happen. Hang in there!
I had chiari and basilar invagination surgery in Jul 2010. Part of it was using dissected sections of rib bones to reconstruct the neck bones and fuse them back together. I was told that I had one of the worst cases of basilar invagination the surgeon had ever seen and I could only be corrected to l56 degrees instead of the normal l80. I am so much better I still consider it a success; I don't have headaches, the dizziness is gone and I have had only one very short episode of vertigo since the surgery. The fuzziness and fogginess and confusion I used to feel is gone too. I was scared before I did it, of course. But, if I had known how much better I would feel afterwards I would have done it sooner. When I was diagnosed I too went to the internet for information because I had never heard of Chiari. Most everything I read seemed to be a horror story. But eventually I came to the conclusion that the majority of people who stay on support sites are those who need the support because they are still symptomatic. Most people who have good results go on with their lives and only a small dedicated group of people like on here stay on to pass on the good nedws to others. I've met a lot of people in person through the Chiari Foundation whose lives have been changed because of their surgery......so I know it can happen and I'm not an unusual case. Stay positive and expect good results. I've said before on here that I think there is a big mind body connection. For me, going through the surgery and recovery wasn't a horrible experience. I did experience some pain, mostly in the back where they took the rib bones, but it was controlled with medication. When I woke up after the surgery, for the first time in a long time nothing hurt.....the fairy dust took care of that LOL! It took about five months for me to actually feel well and normal; the recovery is a process. I will still ten months post opt experience some stiffness and/or soreness in my neck if I overdo things. With the neck fusion, I had concerns about being claustrophobic, so my neurosurgeon prescribed a cervical collar and I practiced wearing it for about a month prior to the surgery. Before the surgery I had a shorter neck and the regular collars didn't work for me. Another chiari patient that I had met through the Chiari Foundation let me wear her Aspen Vista collar during one of the meetings. It is adjustable up and down as well as around and it works for those of us with shorter necks. I found it very comfortable and didn't mind wearing it all. Oh, one of the benefits for me is that I can now walk in a straight line......how about that LOL!! An on-line aneurysm friend of mine in Holland said something to me which really helped me conquer my fear of the surgery and I'll share it with you. She acknowledged that she understood that I was afraid but said "think how great it's going to be to be free" That really struck a chord with me because, once I was diagnosed with chiari, I did wonder and worry somewhat about what might happen if I didn't have the surgery. I did want to be free and know that I had done what I could to make my life better. Even though I was told that my surgery wasn't optional, I still put it off for awhile until I came to that conclusion, so I know it's a hard decision..... I'm glad I had the surgery; it HAS made my life better....... it CAN do that for you too. The key is to have a good competent surgeon and then give yourself permission to do what you have to do to recover. If I can help in any way, I'll be glad to.
sorry ive been off the site for a while, part of it was denial i guess and wanted to pretend that i was not having to go through with this. but i have heard from the ns. they have me scheduled for surgery on july 6th. they also did several lumbar punctures. they are also planning on inserting a shunt when they do the decompression surgery. apparently my csf pressure is so dramatically high, they are not sure that decompression alone will fix what it needs to. i guess that is good so hopefully i wont have to have more than one surgery after another. provided i don't have any other complications.
however, i like the site that Julie mentioned. its really nice to hear stories ofpeople who after they heal, even with minor or some symtpms can still relatively be/lead a normal life. now i guess its just the counting of the days til surgery. my parents who live an hour away are planning to come and take care of me the day of surgery and for at least a month or longer if it takes. i also talked to some of other patients who had surgery fromthe same ns's who are doing my surgery and got alot of good feedbackso that makes me feel better too.
just wanted to thank everyone for all of your wonderfully kind words and support. i sure do appreciate it very much. i will for sure keep everyone updated.
abby i tried to reply to your message, but it didnt do anything when i hit the send button. im not sure why though so i am very sorry but thank you for all the kind words you had forme. i so appreciate it.
Jessica - getting the surgery schedued is one step in this process done. I will be praying for you as you go through the next step, the surgery, that you get an excellent result and it will improve the quality of your life. Blessings to you and your family....so glad they will be there for you....that goes a long way.