3 Recommendations
Id like to get a discussion going for Chiari.
Saturday, November 21, 2009
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Chiari Malformation
- By betterhalf65
- Posted November 6, 2008 at 11:05 pm · 32 replies
- In Brain and neurological conditions
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Motrin Scoliosis Chronic pain Morphine Stress Arthritis Chiari malformation Seizures Physical therapy Ultracet Autism Acoustic neuroma Pain Spinal fusion Bufferin Memory Neurontin Bone cancer Lyrica Arachnoiditis Trigeminal neuralgia
32 replies
- Oldest first
- Newest first
- By stephruhlen
- Posted January 3, 2009 at 12:27 am
- Report post
My brother has Chiari. He has had 2 brain surgeries and a spinal surgery all in New York at the Chiari Institute. He was diagones 7 years ago. Did you just wnat to discuss this or do you have questions? As you can imagine my mom and myself too know quite a bit about it so just let me know..
- By betterhalf65
- Posted January 29, 2009 at 12:16 pm
- Report post
Hi,
I just read your post on the second, sorry for the delay in responding. Things have been busy but I'm able to take care of my sites now. I'm so glad to find someone who has dealt with this condition. I was decompressed 2 years ago. I had complications (not chiari related) that almost killed me while I was having shunts placed. But since I survived and was left disabled I have devoted myself to trying to get info out about this condition. I have made a website to get all info, support and good doctors all on one site. Its a work in progress. If you would like your brothers doctors listed let me know, I'll add it. But I really like meeting and talking to people who know about or have had chiari. I feel it is too unknown even by the medical community. We should not have to teach our other doctors about chiari. I would like to know what you and your mom has learned. I've learned some things too that surprised me like chiari, ms, spina bifada and trigmenial neuralgia are all connected. My mom had the trig brain surgery a few years before I was diagnosed with chiari. I of course found out all this stuff after the fact lol. If you would like to help me with my site it would be appreciated but I would also just like to have someone to talk to.
Kathy
betterhalf65@yahoo.com
http://chiari65.bravehost.com
- By cheri1979
- Posted May 5, 2009 at 5:21 pm
- Report post
I was just diagnosied with chairi malformation. I dont know what to do because my doctor will not do anything about it. I have been in alot of pain and pressure in my head and numbnessand pain in my arms. What can I do about it please help me?
- By stephruhlen
- Posted May 6, 2009 at 12:00 am
- Report post
I am so sorry it took me so long to respond I haven't checked this in a while...I have given my mom your information and she should be emailing you soon. My brothers dr is Paolo Bolgonese at the Chiari Institute in Great Neck New York. You should be hearing from my mom soon!
- By stephruhlen
- Posted May 6, 2009 at 12:01 am
- Report post
My mom knows alot about this disease if you would like to talk to her, her email address is terilm39@yahoo.com she would most likely email you back but it sounds like your having alot of the same problems my brother did! Get a hold of her it would help you.
- By stephruhlen
- Posted May 6, 2009 at 9:21 am
- Report post
Hello:
My name is Teri and I'm willing to help you any way I can. I'm Stephanie's Mom. One thing she didn't tell you is she is a chiarian too as am I. They are finding chiari to be genetic. She and I are not symptomatic enough for surgeries. I really don't know what to tell you and where to start. Why don't you tell me some things you would like to know or what is worrying you most. There are more and more Doctors out there learning about Chiari, just because your one Doctor isn't taking your chiari seriously doesn't mean you won't find a Doctor who will have the knowledge of chiari and be able to help you. It is the lack of understanding that is the problem finding a Doctor. Let me know and ask me anything. As you can tell, I have no problem talking. LOL
- By cheri1979
- Posted May 6, 2009 at 7:28 pm
- Report post
My MRI showed chiari I type malformation. Minimal posterior spondylosis from C3 through C6-7. The spondylosis is only just barely large enough to be perceptible. My doctor said I had a whole in the back of my head and it is leaking spinal fulid. I am in alot of pain and I have been very lightheaded and alot of pressure in my head. I have been also hearing humming and beeping in my head. Should I see a neurologist or leave it alone until it gets worse.
- By stephruhlen
- Posted May 6, 2009 at 11:33 pm
- Report post
I think you should make an appointment with a Neurologist. There are plenty of drs out there now that know about chiari! It doesn't hurt to get it checked out.
- By betterhalf65
- Posted May 7, 2009 at 9:59 pm
- Report post
Hello,
Do you know yet if you have just chiari or a syrinx too?
A syrinx will cause the numbness and things you are experienceing with your arms. I understand that this is a scarey and frustrating issue that your dr. isnt doing anything. Unfortunately that is a too common situation. The good news is there is alot of people working to change this me included. Its just not acceptable. If you go to yahoo groups and look up wacma and join that group you can post the question
asking about a good dr in the area where you live. Its the fastest way to get names to drs that people have used and had good results with. Its a very large group
and you will usually get alot of replies. If you live around NY theres the THE CHIARI INSTITUTE which is very good. In Colorado there is Dr. Oro. In Oklahoma there is Dr. Barry. There are of course many others around the country but the people on wacma can tell you about them. Just remember finding
a good NS is one of the most important things you can do because they have the quality of your life in their hands. And theres just too many that arent that good. Go to conquerchiari.com and read as much as you can of that site. It covers almost everything you need to know from the condition to getting help. Dont
give up there is help and there are people like me to help you any time you need it. There will be times you feel like just giving up because of the frustration, feeling like no one is listening, no one is helping, finding good drs etc. And you just feel too bad to keep fighting so contact me I'll help you thru it whatever it may be that your feeling on that day. Hang
in there support is always here and your not alone anymore. I will keep you in my prayers. My email is
chiariperry1@yahoo.com.
Kathy Rigdon
- By betterhalf65
- Posted May 7, 2009 at 10:09 pm
- Report post
hi,
I would get it checked. I wouldnt let it just get worse. Anything in this area of medicine needs to be addressed not ignored. I've had extensive complications and after effects so stop anything as soon as you can. I have alot of things I have to live with that cant be fixed. Do all you can to prevent this.
Theres a dr. somewhere who knows what to do for you. All The Best
Kathy
- By cheri1979
- Posted May 9, 2009 at 3:01 pm
- Report post
Thank you for the information I will look into it. I don't know if I have just chiari or if its syrinx. I have not been to a neurologist yet. I have to get insurance through my job first then I will.
- By ann1951
- Posted May 16, 2009 at 5:05 pm
- Report post
Hello better half65, I was finally dx with chiari malformation and scoleosis in nov of 1986 after a near 20 year battle with doctors which started when I was a teenager. My dad died at the age of 43 and doctors told my mum that I was just looking for attention because we didn't have MRI machines then or c scans on plain x rays which you have most likely found tell nothing about chiari. I married, had 5 children, the first was normal weight etc but the rest were all premmies and one specialist told me that if I could have babies there was nothing wrong with me and practically wiped me off his list.
In 1980 we moved to our state capital and the fight continued even after my old GP retired and was replaced by a newly registered GP who agreed with me that there was definately something wrong and he started the fight for me with the public hospital specialists [no private insurance company would cover me] and more to prove him wrong than for dx. I feel, finally I was given a MRI which revealed the chiari malformation 1 with severe brain stem herniation. Then it was a big rush for decompression surgery and after emails with Dr. Pablo Bolonaise at the Chiari Institute in Nanhasset, I found that the procedure used to decompressed me has been stopped in the USA nine years before it was used on me. I had 9 years of post surgery time where I had little pain and could enjoy my kids and the first of my 7 grandsons only then to find that my eldest had chiari and now her youngest was dx at 14 months with chiari . In Australia so far we only have 1 specialist who is recognised as an expert on chiari and he did time at the Chiari Institute . If I had the finances I would be in Nanhasset fast to see them as I am now wheelchair bound but that is not only from the chiari but a lot of other issues.
Good wishes to you and keep up the fight to see the best .
- By Pammy53
- Posted May 28, 2009 at 5:24 pm
- Report post
DO NOT just jump into surgery; thank GOD I did not. Two of my doctors told me "NO." How mine was found was I was having alot of pain in my neck and terrible heachaches. Once I would lay down, it was like someone was holding me down for a long while. I went to a back specialist who also treated necks and he found arthritis in my neck, a chiari malformation, and C-4 and C-5 vertabrae herniated. Anyway, he prescribed physical therapy; that really worked. I was lucky enough to have a therapist who knew about my medical problems and what he was working with. He also told me that my head tilted to one side and how to hold myself; I had shoulder issues in this also.
I am on Ultracet everyday for arthritis pain and it keeps my chiari heachaches at bay. If it wears off early, I can take two extra strength Bufferin and it gets me through the rest of the day.
A co-worker of mine several years ago had the surgery, and she has been disabled since. She cannot remember how to do things, how to get places, her husband left her, then she was in a car wreck that crippled her.
Talk with a neurologist and your primary care doctor about this. Try physical therapy first and get good pain meds.
- By freddie
- Posted May 28, 2009 at 6:41 pm
- Report post
Hi first time i've used any kind of chat type room on the computer so bare with me. i'm a 35yr old woman from the uk with chairi whose just starting on her surgery road really i had a shunt fitted two weeks ago tomorrow and really don't feel any better tried to contact my surgeon to dicuss this but got no joy cos surely thsts not right. I also suffer from benign intercranial hypertertension as well so the aim is to get rid of the pressures before they do the decompression in about 8 weeks xx
- By freddie
- Posted May 28, 2009 at 6:45 pm
- Report post
excuse my typing i was doing it in semi darkness !!!!!!!!!!!!!!!!!!!!!!!!!!!
- By anm830
- Posted June 17, 2009 at 6:44 pm
- Report post
hello, i have chiari malformation type1. i was wondering if anyone knew of any fundraisers i could do, because i have to travel from indiana to new york to the chiari institute and i need money for the flight, hotel, cab rides, etc. I'm 17 years old and my mom is doing her best to help me with everthing. i am so thankful for her. everyone should have someone to help them with the chiari besides their doctors.
- By betterhalf65
- Posted June 17, 2009 at 10:01 pm
- Report post
I agree we all need someone. I had my mother to help me and I was 41. She was great and I knew I was in good hands.
Kathy
- By MargieMcClain
- Posted August 8, 2009 at 1:02 am
- Report post
Hello there! Count me in on this discussion group. Where are you are with you diagnosis?
I was diagnosed two years ago after A LOT of other health issues. Now, I am having basically at an impass- surgery isn't a cure but leaving it be isn't going to help either.
I am allergic to / or become allergic to the pain meds they give me to try and am unable to return to teaching - my passion and am in cinstant pain ( I hgad a brain tumor since I ws 8 -mom said I was faking those headaches! LOL. So tooerence for pain is the higest my spine surgeon and neurosurgeon have ever seen.
I look forward to talking with you soon.
Take care-
Blessings!
Margie "Mo" McClain
- By MargieMcClain
- Posted August 8, 2009 at 1:09 am
- Report post
I probably should add:
I am a bone cancer survivor (90).
I had an Acoustic Neuroma at age35 (resection in '04), C-Spine fusion C3-6 in '05; total replacement of rejected hardware in '07 & re fusion of C2-C7).
Advertisement
Add to the discussion