Mandy, I have realized in reading the many posts that my neurologist didn't seem to fall into the pattern I was seeing described by many of the other members of this group and I have been very fortunate in that. I was sent to his practice by an astute ER doc and the neurologist asked me many questions relating to my symptoms on my very first visit and identified things that at that time that I had no idea were related to CM (since at that time I had no background knowledge and had yet to study on the condition). He also started me on some treatment right away as well as doing some further tests (MRI of my spine etc). I have since that time (1 year now) seen him every 2-3 months and it took about 6 months to really get a combination of medications that has given me some sort of normalcy and relief. In the summer I was taking diclofenac potassium for relief from head pain which helped but had to take them all day, every day to function which my doc said would ruin my kidneys. I have been on amitriptyline since the beginning which helped the sleeping at night greatly…I increased that in the summer and had also been taking topiramate . However, when he added a beta blocker to the mix is when things really changed for the better for me and I have not had to take extra pain meds for my head pain and have been able to lessen the topiramate which lessens the side effects. And so at present my condition is being managed successfully by medications…how long that will be who knows…but it is working now. I of course still have some symptoms many/most days that are minor but so do most "seniors"!
Mandy said:
Scout, what kinds of treatment did your doctor decide to do? Neurologists typically don't believe Chiari causes symptoms in adults, was he able to prescribe you anything that helped with your symptoms?
scout said:
Thank you for this very interesting information. I also am very interested in how many members began symptoms after head trauma. I lived my whole life not being symptomatic and having no knowledge that there was anything like a condition called Chiari and I am in my sixties. In 2006 I had an accident and injured my shoulder severely. I also had some injuries to my face when I hit my head on the concrete which were checked by X-ray. However at that time no one did a MRI of my head. By 2013/14 I was having a variety of symptoms but it was a trip to the ER and an MRI there that discovered it was Chiari causing the problems. My neurologist told me the very first visit after spending time with my history and examining me that he feels my symptoms began with the head trauma at the time of the accident.
Yes, I had a whiplash type injury in my teens. I thought all the neck pain, headaches, and over-reactive upper back muscles were just due to the wreck. Fast forward almost 30 years and I had 3 other things happen that I think triggered my more severe symptoms. I was rear-ended again but it seemed very minor. I had some mild soreness after. I also went on vacation and spent about 13 miles a day on horseback ( a lot of trotting). Then I had bronchitis and pneumonia for a month. After those three things, I developed the balance issues and constant head discomfort.
My mother also has a Chiari. She does not have headaches or neck pain. She has never been in an accident. She did however develop double vision in her mid 30s and then progressively deteriorating balance.
Hey Mandy, I have checked into other things with the neurosurgeon the last time i was there. I have no joint weakness or surgery and everything else is normal. My neurologist says my reflexes are jumpy but she doens't seem to hear me when i said they were always touchy. LOL I did ask about hyper mobility and EDS, and everything else an i am in the clear for all of that. I just have to deal with the back and neck pain. Though i am calling my neurosurgeon today because i have had a back problem since i stopped working about a month ago (the company downsized our 2 stores into one and since i was having trouble with the busts that we have to put up on shelves, my manager decided it was best for me to not continue one, which i actually agreed with) but ever since then, i can't lay on my left side or even sit leaning that way. It only feels better when i lay flat on my back or am up walking around. My neurosurgeon had told me that i didn't need to see him regularly but to call if anythign changed. My neurologist said to call him because she thinks it is because of the bulging disk i have that was pretty close to the spinal chord and the nerve there., right in the spot where my back hurts the most. i have had so many things seem to go wrong lately that i just want to rest and relax, which my back won't let me do. Had another cancer scare when i had my ultrasound and mammogram in january but it turned out to be just benign tissue (thankfully) and now my back. I just can't get a break. I was supposed to relax and let me body heal up a bit after i stopped working but my body apparently had other plans.The good thing is that i now have a YMCA membership and will be getting back into swimming. :-D
Now i have a question. when was that study done about hereditary Chiari? I have seen nothign about it and the last i read there was no evidence that it was hereditary, or that is is passed down. I only ask because my dad has been having some bad headaches lately. I am pretty sure they are just migraines though and not Chiari. but, he was adopted and his records are sealed so we have no idea what health problems are in his family. Other than his birth parents died young. i would like ot know more about this research that was done.
Mandy said:
Furie, I know we've talked before, did we discuss if you had a connective tissue disorder? With your roller derby history, do you have joint weakness or surgery?
Furie18 said:
Interesting indeed! My Chiari was actually found during an MRI for headaches. Why i am saying this is because i was involved in an accident about 4-6 months prior. I was the middle car and was rearended when i was at a dead stop and pushed into another vehicle. I started having worse headaches an sever back pain about 2 months after the accident adn so i was referred to a neurologist. When she told me about the chiari, i was a little scared at first. then when i looked more into it, it explained a number of problems i have had my whole life. really bad light sensitivity, my back and neck always being so stiff and sore if i stretched or sat wrong, and even the way some of my headaches were. Ironically though, my open MRI i had for headaches years before didn't catch it, which i was told was common since it wasn't enclosed. But this article... brings up a conversation i recently had with my neurologist about teh accident i was in and a few other things we talked about. In my case, being inthat accident just brought everythign to the forefront and into the open where it was more insistent and noticeable. As odd as it sounds, it was both a curse and a blessing that it happened.
The answer is yes and no. Researchers investigated the genetic implications of the Chiari malformation with or without syringomyelia. A genetic prevalence has been identified in some families. Researchers continue to search for the gene(s) that are responsible for producing the Chiari malformation. A genetic prevalence means while it is congenital (as you know at least one form of Chiari can be developed) its not known whether its an actual genome or the result of another in its course of development. Scanning is recommended for family members who have signs or symptoms of the disorder. Hows that for a non answer???
Furie18 said:
.....Now i have a question. when was that study done about hereditary Chiari? I have seen nothign about it and the last i read there was no evidence that it was hereditary, or that is is passed down. I only ask because my dad has been having some bad headaches lately. I am pretty sure they are just migraines though and not Chiari. but, he was adopted and his records are sealed so we have no idea what health problems are in his family. Other than his birth parents died young. i would like ot know more about this research that was done.......
Thanks TJ, thats what I had known. I wasnt sure if there was more research done since I had read that. It is still so frustrating having people and even doctors look at you like your head was cut off when you bring it up. I wish there WAS more resear h already for this.
Well I feel like I hit the lottery today, I rec'd a phone call from Dr. Rosa & I will be going in for the procedure in May. Now I have to hit the real lottery to pay for it all but looking forward to some relief :)
Well I feel like I hit the lottery today, I rec'd a phone call from Dr. Rosa & I will be going in for the procedure in May. Now I have to hit the real lottery to pay for it all but looking forward to some relief :)
I am a patient of Dr. Rosa. Momof2 was he able to help you.
Karen in Toledo said:
Momof 2 said:
Well I feel like I hit the lottery today, I rec'd a phone call from Dr. Rosa & I will be going in for the procedure in May. Now I have to hit the real lottery to pay for it all but looking forward to some relief :)
Well I was in a car accident 12/2013 and my head went forward and back just once, but I had a piercing headache for just a second and a few days later felt like I was sore all over neck and shoulders and had periodically headaches. My other symptons didn't start till a year later and they just seem to get worse and worse. So I'm not sure if it's connected, but do find what your saying interesting only because I do have a connective tissue disorder, it's called Crest Syndrome.