I haven't been here in a while. But what I'm looking for now is for anyone that is a part of this group that has chiari and spina bifida. I'm looking to find and speak with people who have both conditions to see what types of experiences people are having. If their anything like mine or if maybe what I'm experiencing isn't related to the chiari. I was told by my neurosurgeon back last December that he almost guaranteed that at some point in the future that I was going to have to have decompression surgery. In the time since I've seen him last, I've been still been having a great deal of trouble swallowing and my memory is horrible. On a few occasions over the past couple of months I've had pains in the back of my head, the best way I can describe them is like a kinking feeling in my neck, it comes in an instant and then a few seconds later I will have pain in my neck and then it will be gone. I never know when its going to happen but when it does it's painful. Also I've had for the last year and half or so I've had an extremely difficult time swallowing food and pills. The swallowing is difficult, especially when I am out with friends or family and it occurs, its just embarrassing when you can't swallow correctly and you have a problem around your friends and family. Because not only do you embarrass yourself, but you embarrass the people your with.
One of my biggest questions for everyone here, especially people who have gone through the Chiari surgery, I guess I'm wondering how far advance did your symptoms get before you were taken in for surgery and do you have any other conditions beside the Chairi? I'm just looking for whatever information people here can give me and whatever advise you all have I would greatly appreciate. I hope everyone is well and getting the answers they are seeking.
My Spina Bifida Occulta caused my CM1 & Cranial Nerve Disorders. There is also two other Members that have the same condition. I have done massive research & found people like us have more difficult symptoms, pre & post op. I almost became a quadriplegic when I had my emergency CM Decompression, Craniectomy & Duraplasty & Laminectomies on C1-C6. The surgeries took 16 hours and a team of surgeons. I would be happy to talk to you about this. By any chance was one of your parents a Vietnam Veteran? I have all the symptoms you are describing. My get chocked very easily & not to be gross but I have to make myself vomit. I am sorry you are going through the same things I do. I honestly prayed no one else would.
Thank you for responding. I have the form of spina bifida myelomeningocele.In the past year like I stated in my original post I've been okay for the most part. I'm not having constant problems, except for the swallowing thing, that is pretty much a part of my every day life. Some things are more difficult to swallow but I'm learning to do things that help with diverting that problem. I guess I just don't know if I should pursue my doctors for anything if I'm really not experiencing problems on a constant basis.
You stated that you had emergency decompression surgery, did that help your symptoms? Did you experience anything new because of the surgery and if the surgery did help you has any of your symptoms you had prior to surgery have they returned? Again I appreciate you responding to me and I look forward to hearing from you again.
I didn't have a choice on weather I should have surgery or not. My post op symptoms are much worse than I could ever imagine. I take nerve pain medication & pain medication. I have constant pain in my neck and the back of my head. I can't pick up anything over 5 lbs. I had a discectomy on C5 & it literally fell apart in the NS hands. I have daily headaches, most are chiari headaches, but I have miagraines and complicated migraines(they have stroke symptoms). Of course I have told you about my swallowing problems. Right now I have Shingles from stress. I am only 44 years old & had an amazing life. I never tell anyone they should or should not have surgery . Everyone is different. No one can tell you if your symptoms will be better post op. Not even your NS. Please ask me any other questions you may have. I am not feeling well today & hope what I wrote makes sense.
I'm sorry your not feeling well, but do appreciate you responding to my post and giving me your insight into things you have and are experiencing. At this point I don't know what the best course of action is for me, so I'm just going to get a hold of my neurosurgeon and talk to him about it. Not knowing prior to the surgery if it will make things better is what makes me hesitant on going through with it, but I will talk to my doctor and see what kind of plan we can come up with.
I hope you feel better soon, and I'm sure we will speak again in the near future.
I am new to this group and just came across your post. I was born with spina bifida (myelomeningocele). I was diagnosed with chiari malformation in 2001 at age 14. I was actually having tests done for other reasons when the chiari was discovered. I was asymptomatic at the time and told not to worry, until symptoms occur nothing would be done. It wasn't until around july 2008 I began having excruciating headaches, nausea and dizziness. I thought at first my shunt was malfunctioning. I made an appointment with my neurosurgeon and had tests done that ruled out the shunt. The doctor then had me do some tests there in his office. After I had done the tests he told me my chiari was the cause of my problems and I would need to have a decompression surgery. At that time I also had difficulty swallowing and my hands and feet were always cold which the doctor said was because of my chiari. I also was unable to sneeze, cough or even laugh without pain shooting through the back of my neck. I had surgery in august 2008. The recovery process for me was not fun. It took a good 6wks to regain full mobility of my neck again. Everyone of my symptoms however did disapear shortly after surgery. I no longer had headaches and was able to return to life as normal. I have recently begun having headaches again made worse by coughing, sneezing etc. I have difficulty swallowing again. Pretty much all of my symptoms from before have come back. My neurosurgeon is almost certain its my chiari again but wants a second opinion before he just jumps back in there and does surgery again. I am in the process of waitng to get an appointment with a chiari specialist to decide whether I need another surgey or this can be treated with meds. I didn't mean to write a novel here and am not sure I even helped you I Just want you to know i'm here if you need someone to talk to. I have had spina bifida for 25 years so I kinda know what you're going through.
No need to apologize. I appreciate you taking the time and responding to my post. It was actually very helpful and informative. I know everyone is different, everyone symptoms and things they go through are different, but even still I appreciate the response. My most difficult task to date is the swallowing and the very painful feelings I'm getting shooting up through my neck, and also in the last couple of days, I've started to have a great deal of pain in my lower back. Not sure if its all connected to the chiari or my shunt. But I made an appointment with my neurosurgeon for next week. Not sure what he's going to say or suggest, so I'll just have to wait and see.
And like your experiences, I've also read and been told by people I've spoken to that the chiari surgery doesn't always take away the symptoms someone experiences. Have you ever seen an ENT, an ears, nose and throat doctor? Having the swallowing being my biggest problem I've been facing I've thought about seeing that type of specialist, but I haven't gone through with it yet, not knowing if they would even be able to do anything. Hopefully I will get more information from my doctor when I see him next week. But in any case, again I appreciate you taking the time to read my post and respond. Not sure at this point what will go on, but I'm sure it will all work itself out.
I do not have spin bifida, but I have a co-worker who is on my team that does. She is in a wheel chair and had her chiari fixed as a child. She actually has a mesh patch at the base of her skull that holds hers up. Back then they fixed them differently. I know she still has fluid issues when it is that time of the month and she has to take water pills. Like me she can become very forgetful, but I honestly have more swallowing issues than she does. She has never complained of an issue with her swallowing. If you have any specific questions you would like me to ask her I would be willing.
Good luck at your appointment with the neurosurgeon megan. I will be praying for you. I know it can be scary not knowing whats going to happen. I have had 15 surgeries already and am getting more nervous every day at the prospect of having to have another surgery. I have never went to an ENT to be honest I didn't know my difficulties swallowing had anything to do with my chiari until my neurosurgeon told me it did and I was gonna need surgery. Like I said after I had the surgery every one of my symptoms including difficulty swallowing did disappear. I did make it almost 4 years before I started having symptoms again. I'm not sure why this is all happening again but I know everything will work out in the end. One thing I would suggest if you haven't done so already write everything down. Every time you have a headache or anything else thats happening no matter how small you think it may be write it down. Write down any qestions you may have so you can remember to ask your neurosurgeon at your appointment. Please keep me updated.
I promise to keep everyone updated, and thank you to everyone for being so nice and caring through this time. It makes me feel good that this community is here, that we can rely and talk to one another when we feel like maybe no one else will understand or even care to listen. I will update when I know if anything is going to happen. And all of you will be in my thoughts and prayers.