How old were you when you starting getting symptoms with Chiari? Do you occasionally miss work? How bad are your headaches? Did you seek out surgery? Did surgery help you? Do you have symptoms now? Do you have children? How did you take care of them while you were recovering? What do I really need to know.
I want to hear from the ones who have had surgery and have not had surgery. Would you do it again? I have read some of your profiles and some of you do not have chiari and really I just want to know from the ones who does.
Anne I have had headaches all my life but they got worst about 8 years ago. And bout 3 years ago my other symptoms started getting worst I was falling, headaches where worst numbness and tingling in my arms and legs. I do have 3 kids ages 4-10 and when I was bad I couldn't function I've been on maintance meds for 4 years and they helped for the most part the headaches weren't as frequent and I was able to get by for 3 years on just adjusting my meds. I have read other peoples stories and felt mine mustn't be as a bad as others. But we all suffer on different levels. I finally decided to have my surgery in November and so far so good. I'm off my maintance meds. I was lucky my doctor only did surgeries at my hospital on Fridays so I spent the weekend in the hospital. My parents took turns watching my kids at night and brought them up to see me during the day, my husband spent the nights with me. After my surgery I had my mother take them to school and a friend pick them up after luckily it was for 2 weeks because of Christmas break. I was off of work for 6 weeks and was on a 10 pound weight restriction for a month & 1/2. I did have a CSF leak at week 5 ( from coughing with the flu) it took 1 month reabsorb back into my body.
Surgeons in my opinion are important I was lucky enough to work in intensive care unit as a CNA and learned who I did and didn't want to take care of me because this is your brain and they are working closely to your brainstem and spine.
Hello Anne,
I am 43 yrs old. I did have decompression surgery 16 yes ago. I have 4 sons. I did not know I had Chiari type 3, until I was 27 yes old, and had surgery with 2 mos. At the time I had 3 kids, my sister actually cared for them for me. At the time I did not know, what I experienced as a child, were symptoms. I remember suffering with migraine headaches my entire life. Different things throughout my childhood that most women go through, were dismissed as my age, and normal, for the age in my life. Its kinda weird. Nothing was ever thought about things because it was " normal". As I reached my early 20’s, things got much worse. I would pass out a lot, the headaches got worse. Than my legs started to not work. I went to docs, to find out what was wrong with me. I lost all muscle in my right leg. I believe with all my heart, without the surgery, I would not have been here to raise my sons, or see my grandsons born. God Bless.
They knew something was wrong with me when I was born....many years ago before MRI's. They thought it was congenital torticollis and did physical therapy. But as a child I would get awful shooting pains when I coughed or strained while going to the bathroom and my ears would clog if I laughed too hard. As a teenager, the neck pain intensified and the headaches started in my 20's. I was diagnosed in my 30's and the doctor said until I had neurological symptoms he would not recommend surgery because he felt I'd still have the neck and shoulder issues. Luckily I've had doctors who give me pain meds and muscle relaxers. I have two kids, had c-sections with both (as a child I used to think there was no way I could stand it if I ever had to go thru childbirth because of the pains in my head).
I've read too much negative stuff about the surgery and doubt I would ever have it now.
I started experiencing bad headaches when I was about 12. They continued getting worse and I’m now 30; decompression surgery was 3 weeks ago. For the past 3 years I was missing work for months at a time. My headaches started at a poison level of maybe 6 but quickly my mother would withdraw me or keep me home from school. They offer the years became debilitating. There is no other words to describe it. The fatigue from the accompanying insomnia all due to the pain, just was driving me insane. Especially in the winter - the neuropathy got so much worse.
I had surgery, I’d do it arson add many times add it took. I experienced such relief immediately; I understand many chiari patients do not get these results. However, if I only received some pain relief it would have been worth it.
After surgery, coming off of pain medication, I did have some residual leg pain, but my doctors allowed me back on my gabapentin immediately and that helped silence that. My body is so catching up on sleep (3 weeks later). I have done really great days and some that are just blah but no real bad days.
My quality of life had been so greatly improced; I’m so blessed to have such a great response from a single surgery! And by the way, my cerebellar tonsils extended 21mm past the foramen magnum; to be diagnosed with Chiari, the minimum is 5 and an average of 12. So mine was pretty severe not to mention the nerve side effects I had including electric zaps that shocked through my body from the pressure my nerves were receiving from having no room…
I’m 25 my headaches started 4months ago. My headaches are a 8 most days along with fatigue and muscle weakness and giddiness and stiff neck. I have two kids I plan on doing surgery at the end of march. My family is helping out with the kids. I was miss work like every other day until I asked the doctor to take me out until I had the surgery. While some meds work on some people they don’t work for everybody. Meds didn’t work for me which is why I went for the next step surgery.
Purple Hearts, do you mind sharing what meds you are taking? I had decompression but still have headaches, not as bad as they were but I need relief. Thanks!
Purple Hearts said:
Anne I started getting symptoms last year at 26 after a car crash.
I don’t have to miss work very often now that I get meds.
Headaches not bad. Avoiding surgery. No kids.
I’m starting to see thouhh how some people are in horrible pain even with meds.
I don’t know why there is so much fuss about neurosurgeons. Seems like if you really need the surgery that you could go to anyone. They all work on brains right??
I’m not sure everyone has tried enough medications they are working for me.
I was 43 when symptoms first started, after a visit to an amusement park. About a month before surgery I was getting headaches every few days, and I would get physically ill when I stood up. So I was basically bedridden when I got the headaches. Fortunately, my children are teenagers and they were a huge help, as was my husband.
Surgery helped for a few months but headaches are back but not nearly with the same intensity. Going back to neurosurgeon in 5 weeks to discuss next options. Hope this info helps. Please feel free to reach out if you have more questions.
Elizabeth, fortunately the surgery for chiari decompression is becoming more common. Efforts for chiari awareness have really improved all aspects of care for Chiarians. I would like you to implore more options in your area, perhaps I could even help?
It sounds like you already have neurological symptoms with the pain you are experiencing in your neck. Afterall, pain is a neurological symptom. Do you have discomfort or pain elsewhere??
elizabeth said:
They knew something was wrong with me when I was born…many years ago before MRI’s. They thought it was congenital torticollis and did physical therapy. But as a child I would get awful shooting pains when I coughed or strained while going to the bathroom and my ears would clog if I laughed too hard. As a teenager, the neck pain intensified and the headaches started in my 20’s. I was diagnosed in my 30’s and the doctor said until I had neurological symptoms he would not recommend surgery because he felt I’d still have the neck and shoulder issues. Luckily I’ve had doctors who give me pain meds and muscle relaxers. I have two kids, had c-sections with both (as a child I used to think there was no way I could stand it if I ever had to go thru childbirth because of the pains in my head).
I’ve read too much negative stuff about the surgery and doubt I would ever have it now.
I was 12 when my symptoms started after being leaned back in a dentist chair it took them 7 months to diagnose me.
I miss work on occasion if im having a really really bad day
My headaches range from not too bad all the way to causing blackouts
My doctor and I opted out of surgery for the time being (the risks do not outweigh the rewards for me)
I am currently pregnant with my first child the only difference is I have to have a C-section for sure.
Make sure you have a doctor that doesn't mind you contacting him and will be 100% with you on if you actually need a decompression done or not some doctors are cut happy and some will tell you straight that it isn't worth it right now. My doctor has put me on sumatriptan when I get headaches and it has worked wonders for me. Everyones symptoms and problems are different though!
All of you have given me hope, that you, that is what I needed to know. Thank you all for taking the time to tell me your story. I feel so much better in knowing you all have Chiari, and experience the same things I do. My biggest fear is not for me, but for my children. I just want to be a good mother to them and get them raised up. If it were not for my aging parents helping me, I could not do this. There are ones I have read your stories here and I am lucky to have such wonderful parents helping me. Not many of you do.
You have helped me in a very difficult situation try to make a wise and big decision process. I am thanking each one of you with Chiari who wrote to me. Thank you.
AJ so happy about your new little bundle. I want to hear all about the process. My kids are my life.
Thanks for your concern Elizabeth. I've read a lot about surgeries and just don't want to go down a road where according to my surgeon only provide a 50/50 chance of solving my issues. I also have degenerative disc disease and arthritis, so know that I'll have pain regardless. I am staying aware of the progress though as I have two sons who I suspect might also have Chiari.
Elizabeth Perrodin said:
Elizabeth, fortunately the surgery for chiari decompression is becoming more common. Efforts for chiari awareness have really improved all aspects of care for Chiarians. I would like you to implore more options in your area, perhaps I could even help?
It sounds like you already have neurological symptoms with the pain you are experiencing in your neck. Afterall, pain is a neurological symptom. Do you have discomfort or pain elsewhere??
elizabeth said:
They knew something was wrong with me when I was born....many years ago before MRI's. They thought it was congenital torticollis and did physical therapy. But as a child I would get awful shooting pains when I coughed or strained while going to the bathroom and my ears would clog if I laughed too hard. As a teenager, the neck pain intensified and the headaches started in my 20's. I was diagnosed in my 30's and the doctor said until I had neurological symptoms he would not recommend surgery because he felt I'd still have the neck and shoulder issues. Luckily I've had doctors who give me pain meds and muscle relaxers. I have two kids, had c-sections with both (as a child I used to think there was no way I could stand it if I ever had to go thru childbirth because of the pains in my head).
I've read too much negative stuff about the surgery and doubt I would ever have it now.
Sorry to hear you also have arthritis and DDD, those are two things I know all about, those alone can give you some first class headaches. Hope you are finding some relief.
I had the surgery in 2008. I had migraines for as long as I can remember. The other symptoms became very apperent in 2006, although I believe I had some symptoms before that (I never stopped bleeding in between my children and bled for 8-9 months after my second child. I Had a hysterechtomy in 2005. I read somewhere that these female problems could have been due to chiari)…Anyway, I started getting dizzy, having bed spins and sweats, double vision, vertigo, drop attacks, two black outs; I felt like I had a bug in my ear; I felt like I always had a hang-over while still drunk; I would get “lost” therefore, I did not drive with my kids in the car for at least 6 months…such as: while driving in very familiar areas, I would start to panic because I felt totally lost; I threw up at least three times a week; my hearing became heightened (which was actually a good thing for a teacher…Heard everything); heard things that were very far away, as if they were close (I pulled over many times thinking sirens were behind me); My headaches became daily and many different types: Migraines, sharp pains in many directions in my head; back of head hurt as if someone hit me with a baseball bat; some headaches were totally debilitating for days; some allowed me to function and show up, but not able to think…and then some…I had these horrible electric sensations in my head, which caused more migraines, .I missed a lot of work; left early many times…I basically went to school when I could and came home and went to bed. Thank God that my mother-in-law lived and still lives with us. I felt like I didn’t even know my children and my family anymore.
After surgery, which I had over Thanksgiving break, in 2008, so I was off until the new year, I felt better, but depressed because it was not the miracle that I was looking for. I still had head pain all the time; it still felt/feel like someone hit me with a bat; the electrical sensations were/are still present; I have all over body pain and still get the sharp pains in head and body; my left eye feels strange some times…In 2011, I had to quit teaching, I did not feel right going to teach and not fully being there, and I felt even worse when I had to miss so much time. My friends and bosses at school were great and covered classes for me, etc., but I just could not be there and be here at my home. I went out on disability.
I am glad I wrote this today, though, for I can see that some of my symptoms went away: lost feeling, black outs, drunk feeling…all those are better, but I still have the rest and I take a lot of different medications My neuro. group treats me for Migraines and they seem to think I am cured of Chiari. I still have too many symptoms and do not drive for more than 20 minutes. I am glad that I am home, because it allows me to be able to spend time with my family. Discussions on here have given me the support to be my own best advocaate and speak up. I will be doing that this Monday.
Am I glad I had the surgery? Yes, but I do not think I would ever do it again, but you never know. We will see how it goes on Monday.
God bless, I hope that you are having a pain free day. I hope this helps you without confusing you .Lenni
I am 51 yrs old I have had bad headaches since I was at least 6yrs old. I have been completely disabled since I was 42yrs old. My headaches are extremely Bad! I was not a candidate for surgery and quiet frankly most Nero Surgeons do not like to do it any more the risk are too great!! I have 2 children both grown now but I am raising my sons 9yrs old daughter and we do what we must and we are just fine:). What you really need to know is that there will be bad days there will be good days. And you will need the support of your family to get thru them all. And try not to be too hurt when those close to you do not understand or feel your pain. Because believe me they wont not for a long while and some may never. But that's OK because you see we don't look sick. And if someone on here says they are Chiarians then they have been diagnosed and there are test to prove that, please do not doubt them. We are here for support not to judge. Be Blessed and know that God is always very close by.