I am new to this site and was just recently diagnosed with cm. I am 52 years old and the NS I saw said he's only operated on one other patient around my age, everyone else was younger. This struck me a little strange. my symptoms seem to have started following a concussion. I was hit by a car while riding bike and suffered a nasty concussion in 2011. But my symptoms seem to have gotten worse in the last 4-6 months. Just wondering if anyone else out there is as 'old' as me!! Ha ha.I am suffering headaches and neck pain and had an MRI 2 weeks ago that revealed a 13mm Chiari.
Hi Sherry,
My Chiari also became symptomatic following a head trauma that occurred in my late fifties but then was diagnosed when the symptoms became more severe in my sixties. So I am one of the more "senior" members here…as I am now past medicare age!
I was diagnosed last summer at the age of 34. We were looking for MS lesions and found a Chiari I instead.
Hi Sherry. I am 58, and found out about my Chiari two years ago. This is a great site with so much info available.
I do know it takes many hours of research to find the right care for your particular case. Keep looking for the dr with experience you trust. Be thankful he said those words to you about age. That’s a great tool to use in your search. As now you know he may not be your dr of choice.
There are many people on this site that can help you out much more than I. But if you do get frustrated in your search, I have a friend who also developed a Chiari after an accident who is very knowledgeable and am sure would help answer any questions you might have.
Let me know if you would like to contact her and I will do my best to make it happen.
Hope this finds you having a pain free day.
Cindi
I was 56 when they found mine and had decompression surgery. I have had symptoms since I was six that is as far back as I can remember. I am 58 it has been about 21/2 years since my surgery and I am having many problems again see surgeon on Wednesday to see about another surgery. Chiari is not any fun!
Hi Sherry--I was diagnosed in September 2014 a month before my 63rd birthday. I had been having headaches for about a year and a half and went through PT for what we thought was an injury from exercising with no improvement. My ophthalmologist was actually the one who saw 'issues' during a routine exam and referred me for an MRI. I have a 15 mm herniation. My headaches are really pretty minimal now, easily controlled with OTC meds. My neurosurgeon does not see the need for surgery at this time, but he did say that if I need it on down the road I will likely not bounce back as quickly as younger patients (just like any other surgery).
I am very sorry for you. I was almost 50 when I was in a car wreck that activated my Chiari. After the wreck I had all types of unrelated symptoms according to the doctors. Finally a radiologist spotted my Chiari. Hopefully your Chiari flare will slow down soon. Hopefully someone here can post some good links for you: what to avoid, things to do, etc. Also hopefully you’ll find a knowledgeable neurosurgeon soon.
My wife was diagnosed with CM in '09. This birth defect hit her suddenly one morning. By evening she did not know our daughters, and was totally confused & disoriented, & fell into a VERY DEEP sleep. 10 days later she was officially diagnosed. She was 52 at that time. Paducah KY doctors sent us to the Norton Spine Center in Nashville, TN, and Dr. Scott Standard did corrective surgery a couple of weeks after he saw her. She made a marvelous recovery after being out of commission for about 4 & 1/2 months. She returned to full-time work 6 months after her initial horrendous CM encounter. Next month she is retiring, and we are moving to another location. Hope all works out for you as well! Good luck.
I am 55 and had my surgery 3 years a go. Not once did he say age was a factor. or anything about my age. It is a long recovery, but it is worth it. If you are not getting what you need from your Nuero Doc, research for one who specializes in Chiari. Dr. Heffez is one of the best in the ccountry and the travel is worth it. I went years and years noit having the docs listen to me I kept asking are sure it is not the Chiari, and they kept saying no. Once he got in, it was a lot worse than it looked , and I was only like 5-7mm. Check out his website, he is based out of Milwaukee Wisconsin. His website is very insightful. Hope that helps.
Thank you everyone for your responses! While I am sorry to hear that there are so many out there who suffer like I do, and so much worse sometimes , it is comforting to know that I am not alone. It was actually a relief when I first got the news because there was an explanation for all the things I was feeling. I didn't mean to say that the surgeon was not helpful, he would have done the surgery. I just didn't know what his comment on my age really meant. At this time I do not think I want to do surgery but he said he was there if I decide I do. I go back to my PA in the neurology department for a follow up visit next month. She was actually very nice and I liked her I just don't know how much she knows about CM. The surgeon said he has done 400 or so of these decompression surgeries. I am glad that I found this site and Cindi I will keep your friend in mind for questions.
sherry
I had an accident and concussion age 49, took a year til I was able to get my decompression surgery at age 50. No problems until the accident. MRI after accident showed CM. Had MRI prior to accident on head and it was normal.
I had my surgery in Sept of 2012. I was 54 at the time.
I was diagnosed at 48. No symptoms before then and an 11 mm.
I am 72 -73 in June, so I can be classified as “old”. I had symptoms for years but things manifested after being rearended. I don’t think age has anything to do with it; it is how one deals with life challenges. Surgery was very helpful and I’m doing quite well. Of course, I still have issues, but all in all am coping.
Had my first surgery 2006 when I was 43. Had symptoms for years, as early as my teen years but none if the doctors ever found anything and said there was nothing wrong with me. When they finally figured it out and we compared an MRI I had 12 years prior, there it was clear as can be! Just wasn’t lucky enough to have the right radiologist as the one that finally found it! I’ve had 2 decompressions and still having issues. One day at a time! That’s all I can do.
Hi Sherry. I am 65 and was diagnosed in 2011.
Hi Sherry,I was almost 56 when diagnosed in 2011,I was already on pain meds for deg discs and pars defect in lumbar spine so didn't take too much notice of things happening till lots of things seemed to start going wrong over a couple of years,mine was at 15mm when diagnosed.I had a decompression and duroplasty end of June 2013.I didn't get to see a Neurosurgeon till end March 2013.Took 19months to see him and 3 months to operate then 21months to have my 12month post op check,that happend on Monday this week.Almost didn't happen then,drove 6:5hrs to get there and when we arrived they were just canceling all Neuro appointments, emergency had meant all Neuro staff were called to theatre,they were going to see if they could get someone to see me next morning but they actually took me down the corridor and into a room then told me because I'd come from so far away they had a Registrar coming from theatre but they didn't want anyone else in the waiting area to know, he came through a different door still in his theatre scrubs, very quick consult then he dictated a letter to my local Dr telling him he wants me referred to Rheumatologist to be checked for vascular Ehlers Danlos, told me they would see me in 6months then he hurried back to theatre the way he came.
Do hope you can get some help quickly and it all works out well for you.I had some things come right after surgery and other things stayed the same.The relief from the shocking head and neck aches was wonderful. Good Luck.
I was 39 when I was diagnosed last year. It has been a real treat.
Hi. I am also 52. I have suffered with some symptoms all my life but did not know what it was. The headaches started horrendously in 2014 after I took a certain medication. I had surgery in Dec 2014. Surgery went well, but got an infection afterwards.
Oh My so sorry to hear about the infection! How long did that last? Hope you are feeling better now!
Desron1 said:
Hi. I am also 52. I have suffered with some symptoms all my life but did not know what it was. The headaches started horrendously in 2014 after I took a certain medication. I had surgery in Dec 2014. Surgery went well, but got an infection afterwards.