Holy cow! Are we the same person?? I got rear-ended by a car the day before I went to Midway for my freshman year. I became super symptomatic and could barely get out of bed, I was going to physical therapy, chiro, massage therapists, until finally someone figured out my MRI looked a little off and decided to investigate. I transferred to OSU after having the surgery and needing time to recover and get my life back.
Crazy! Do u know many Chiarians in Columbus? I am thinking about moving there after surgery and what not if I can get a job!
I actually don’t know anyone else, in fact most of the people I talk to about it look at me like I have three heads, haha!
Really you should try to go to the CSF walk Kim is amazing she is the leader of the co op down there and they hold meetings and what not http://www.csfinfo.org/files/4913/6717/8514/2013ColumbusWalk.pdf here is the flyer and who to contact, I am really going to try to go but the headaches have been awful!
I tried replying before but coth likes to eat my posts, flexi sturrips help tonnes! Add the super comfort grip pads to them( they are grippy treads that wrap around the stirrup
I ordered som HS offset irons so I’m going to give those a whirl and get the thinline stirrup pads
Awesome, i have bow balences but need the grip treads cuz thier treads suck! So when i get a new dressage saddle i can use them, have mdcs on my jumping one, because they flex less, and for jumping with the hs i hurt myself hyperflexing when my body doesnt( foot drop so i cannot even do level heels. Only once flatting i did that lol.
Hs have alot of give. But work flatting
[QUOTE=Teddy;7048973]
Awesome, i have bow balences but need the grip treads cuz thier treads suck! So when i get a new dressage saddle i can use them, have mdcs on my jumping one, because they flex less, and for jumping with the hs i hurt myself hyperflexing when my body doesnt( foot drop so i cannot even do level heels. Only once flatting i did that lol.
Hs have alot of give. But work flatting[/QUOTE]
I am working on getting surgery here in the fall once I have surgery I am strongly considering giving the Para a good go and trying to find a working student position that would allow me further develop my riding. I would need to get one that would allow me to have a PT job or something so I could make my car payment and part time job or one that would pay but I think it would be worth it in the end
There are some great doctors at Cleveland Clinic for chiari - I think Dr. Benzel if I’m not mistaken is one of the experts in the field. Have you already decided on a doc? If you go to Hopkins just pm me first. I had a second surgery there, a cranioplasty and it didn’t go so well and I DESPISE the surgeon! A really bad guy - still suffering th complications and he won’t do anything about it!
I was just diagnosed with this last week. 
My neurologist sent me for a brain MRI with and without contrast to rule out MS, and this was found instead. 
However, he was completely dismissive, saying it didn’t play into my symptoms at all. I was bothered, though, when I found out he didn’t look at my MRI images himself–he told me “there are doctors who specialize in that” and blew it off. The MRI report says I have a Chiari I Malformation with “very minimal cerebral tonsilar herniation,” but there was no measurement done. I found that very odd.
I joined a Chiari Facebook group, and with their knowledgeable eyes as well as looking at the images myself (I have the CD of all of the images), I was very surprised the radiologist didn’t mention how constricted the brain stem was or how narrowed the areas for cerebral spinal fluid flow are. Using the software that conveniently came with the CD, my nonmedical measurement is the herniation is between 4-6mm.
What really bothers me is my neuro blew this off without seeing for himself, and the herniation wasn’t measured. Also, from what I’ve read, the size of the herniation doesn’t matter–symptoms do. And, strangely to me, my symptoms seem fairly in line with what I’ve read and been told about Chiari: -severe headaches that start at the back of the head and shoot forward, get worse when lying down, and triggered by things like laughter (it increases the pressure on the area); severe fatigue; a feeling of pressure at the back of the head, like it’s being squeezed; constant neck and shoulder pain; and a wiiiiiide collection of neurological symptoms. (Hand tremors, pins and needles/tingling in limbs, foggy vision, one leg going semi-numb and harder to move than another, hot, throbbing hands and feet, feeling of ants crawling up my head, blah blah blah).
So, needless to say, I’m getting a second opinion. I’m seeing why a lot of folks on the Chiari page have such a strong dislike for neurologists. I’m actually going to try and be seen by the Chiari program at UCLA, and in the meantime, see if my GP can send me to someone else who isn’t so inattentive. I’m hoping to get a cine MRI to see if there’s any obstruction of CSF flow, and check the whole spinal cord for a syrinx.
If it turns out not to be the Chiari behind all this, I guess it’s all due to fibromyalgia, another of my diagnoses…I’m up to 3 since August. WHEE.
So, oof.
I have to wonder if it’s unsafe for me to be in the saddle until I’m seen…? I didn’t ride today because my right leg felt weirdly numb and my head really hurt. That got me thinking–I haven’t come off a horse in about a decade, and I always wear a helmet, but I have to wonder if a fall would be exceptionally bad. Thoughts?
It seems like Chiari is something not very well understood and that can present differently in different people…
I was not exactly “diagnosed” with Chiari, since I was found to have a 3.8mm herniation when apparently 4mm “is Chiari”… Yeah. Lol. I got an MRI because of chronic migraines as well as tension headaches, however I do not have what my neurologist called typical Chiari headaches- they are not brought on suddenly by a cough, etc. however, they always start at the base of my head, it feels like there is pressure, tightness, etc. I have headaches like that almost daily, and then ones that shoot forward behind my eyes and turn into full blown migraines at least once or twice a week. The neurologist just keeps attributing it to muscle tension and telling me to take muscle relaxers. I’m not really sure if there is a connection to the Chiari or not…
I went with a relative, let’s just say my cousin John, to a couple of neurologists who completely blew off the symptoms which turned out to be classic; numbness, strange headache at the back of the head, and some others which I forget but they were disruptive to his life. The neurologists were useless and ignored the MRI report which showed low-lying cerebellar tonsils. They came up with unsubstantiated and odd diagnoses which I won’t get into but seemed sort of snatched from thin air, especially considering that the symptoms were classic for Chiari and they had MRI results to indicate that problem. Years went by with occasional bouts of strange numbness, headaches and other symptoms which were disruptive, uncomfortable, and worrisome.
At one point, symptoms came to an extreme attack, which was a debilitating couple of days involving the weird back-of-head headaches, numbness and tingling in arms and legs, EXTREME thirst and chills without fever, and other things which I’m not sure of. This prompted John to see a neurosurgeon at Hoag Hospital in Newport Beach. The doctor told him he had all the classic symptoms for Chiari Malformation, explained why each symptom happened, and discussed the option to have surgery. John followed up with a second opinion at UCLA. The second surgeon’s diagnosis and advice were the same as the first.
The first surgeon said if John chose not to have surgery, he could manage his Chiari somewhat with certain practices like avoiding jogging or any activity that jostled the brain (roller coasters and such), taking care not to drink excessive liquids which can cause swelling, and using ibuprofen to reduce inflammation and as an analgesic. He also explained the risks of not having the surgery which I don’t remember, but I think were not significant in John’s case. The doctor mentioned that in certain severe situations the surgery would halt the progression but not get erase all the symptoms.
He said a lot of positive things about the surgery, how happy patients where that they had it, and explained the process, the risks, and the usual post-op pain and recovery time.
The thing I got out of all of this is that if I had anything going on with my head I would be very leery about visiting a neurologist, and If I ever suspected Chiari I would head straight to the best neurosurgeon I could find.
It is interesting how often this seems to be getting diagnosed now. I saw a program on Discovery Health many years ago where a young woman had severe headaches that weren’t responding to treatment over the period of a year or so that degenerated to the point that she was wheelchair bound. They finally made the diagnosis and did the surgery and she was a new woman. Seeing how debilitating it was for her would definitely make me want to avoid getting to that point if possible. Jingles for all of you dealing with this.
It’s been nearly a year since my Chiari surgery and I am still thrilled I did it.
My herniation wasn’t measured, either, but my neuro said the symptoms were the tell all and I had a whole bunch!
Best of luck to you all, and if you have any questions, PM me - I don’t often come to this forum.
My neurologist did refer me to a neurosurgeon and he said the same thing about how since my headaches do not come on suddenly, etc that they don’t seem “typical” of Chiari. He said he wouldn’t recommend surgery for me (not that I was hoping for surgery) but just to keep an eye on things, get a follow up MRI later on, especially if symptoms get worse, etc. The surgery sounds like quite an ordeal, but so glad to hear it really helps some people! Good luck everybody!
What happened with the OP’s case? Update?
[QUOTE=Lauruffian;7400647]
I was just diagnosed with this last week. My neurologist sent me for a brain MRI with and without contrast to rule out MS, and this was found instead. However, he was completely dismissive, saying it didn’t play into my symptoms at all. I was bothered, though, when I found out he didn’t look at my MRI images himself–he told me “there are doctors who specialize in that” and blew it off. The MRI report says I have a Chiari I Malformation with “very minimal cerebral tonsilar herniation,” but there was no measurement done. I found that very odd.
I joined a Chiari Facebook group, and with their knowledgeable eyes as well as looking at the images myself (I have the CD of all of the images), I was very surprised the radiologist didn’t mention how constricted the brain stem was or how narrowed the areas for cerebral spinal fluid flow are. Using the software that conveniently came with the CD, my nonmedical measurement is the herniation is between 4-6mm.
What really bothers me is my neuro blew this off without seeing for himself, and the herniation wasn’t measured. Also, from what I’ve read, the size of the herniation doesn’t matter–symptoms do. And, strangely to me, my symptoms seem fairly in line with what I’ve read and been told about Chiari: -severe headaches that start at the back of the head and shoot forward, get worse when lying down, and triggered by things like laughter (it increases the pressure on the area); severe fatigue; a feeling of pressure at the back of the head, like it’s being squeezed; constant neck and shoulder pain; and a wiiiiiide collection of neurological symptoms. (Hand tremors, pins and needles/tingling in limbs, foggy vision, one leg going semi-numb and harder to move than another, hot, throbbing hands and feet, feeling of ants crawling up my head, blah blah blah).
So, needless to say, I’m getting a second opinion. I’m seeing why a lot of folks on the Chiari page have such a strong dislike for neurologists. I’m actually going to try and be seen by the Chiari program at UCLA, and in the meantime, see if my GP can send me to someone else who isn’t so inattentive. I’m hoping to get a cine MRI to see if there’s any obstruction of CSF flow, and check the whole spinal cord for a syrinx.
If it turns out not to be the Chiari behind all this, I guess it’s all due to fibromyalgia, another of my diagnoses…I’m up to 3 since August. WHEE.
So, oof.
I have to wonder if it’s unsafe for me to be in the saddle until I’m seen…? I didn’t ride today because my right leg felt weirdly numb and my head really hurt. That got me thinking–I haven’t come off a horse in about a decade, and I always wear a helmet, but I have to wonder if a fall would be exceptionally bad. Thoughts?[/QUOTE]
Hi! Your story is all too similar to almost everyone that gets diagnosed with Chiari - including myself. I’m attaching an article from the Washington Post that was written about my story in their medical mysteries column (a friend encouraged me to write in in the hopes of helping others). GO GET A SECOND, THIRD OR FOURTH OPINION until you are satisfied. This is a debilitating and dangerous condition that left untreated can be very, very dangerous. I wound up having a second (needless, but that’s a whole other story) and am still suffering because of waiting so long. Please feel free to PM me if you have any questions at all. I know way too much about Chiari than I wish I did but I’m happy to point you in the right direction if I can!! http://www.washingtonpost.com/wp-dyn/content/article/2010/10/25/AR2010102503457.html
In the time since i first commented on this post, I have been seen by my PCP for a referral to a new neurologist. My PCP wasn’t concerned by the CM at all, but I kept urging her that my symptoms do really seem to make sense with this condition. She seemed to be under a similar impression as my neurologist (but I think she has more of an excuse) that Chiari Malformation is, essentially, nothing significant if the herniation isn’t significant. I adore my PCP because she listens, and she listens critically–she offers well thought out, solid questions that we discuss together while developing a plan. I understood her doubts as they are typical, but I wanted to explain what I’d been reading (it’s difficult to balance advocating for oneself without sounding like, "WELL, I know you had all that medical school stuff, but I read on the internet that…). She warned me about my use of the internet, but I reassured her I was only going to .org websites and ones official in the medical community, not the fringe or unresearched sites. She quoted my MRI report in that it said I had a “mild” CM. However, unlike my neuro, she readily looked at my images and was then willing to refer me to another neuro with the CM as our primary focus of concern. When I asked to maybe be seen by a neurosurgeon, she said she wasn’t comfortable with it–“You don’t want brain surgery,” she said. My response was, “Oh, HECK no I don’t!! But I want to know that I have been thoroughly evaluated to show I don’t need it now or soon in the future.” She appreciated and accepted that. I told her I want to have further tests and evaluations done to determine if the CM is a factor in my symptoms; if not, then we know it’s my other ones. This agreed with her.
Then she had an interesting change in opinion. When I was discussing my two microdiscectomies done at L5/S1 and how miraculous they’d been (“I’d do it every day for the rest of my life rather than face the pain I was in before” I told her), I mentioned how great that particularly neurosurgeon had been. “THERE’S an idea!” she said. “Find out if he works with Chiari–give him a call and let his office know you’re a former patient recently diagnosed CM and would like to know if it’s something he handles. If it is, I’ll write you a referral to him.” So at that point, she changed her mind about sending me to a neurosurgeon. I called his office today and he does in fact work on Chiari, so looks like a referral to him is coming.
Meanwhile, while I’m waiting for the referral for the second opinion to come in the mail, I’m gathering up info to send to the Chiari program at UCLA. I called them and they got my info; I need to send copies of my medical records, my MRIs, a bulleted list of symptoms, and the like over to them and they’ll review it in the order received. If they feel I am a true Chiari patient and candidate, they’ll call me to let me know I should schedule an appointment. I’m not waiting around for anyone–I told my PCP it’s like when I’ve been trying to get articles published. You don’t send out one query or piece and sit around waiting; you keep pursuing options while waiting to hear back from others
So that’s me right now. I’m a bit concerned my pins and needles/tingling pain has started to progress; normally it’s just up one side of the head (feels like all the hair stands on end at once), but the other day, for the first time, it shot down the top of my right arm as well. The outside of my right leg had the same feeling, and at other times, the lower front part of my right leg goes numb. Yeah, so that’s a fun one. Just underscores the need to be evaluated further.
Add me to the list of those who’d like an update on the OP’s situation. Hope all is well, or at least significantly better than before.
BayMares, I was watching a neurosurgeon’s lecture on Chiari (YouTube is so convenient), and there is such thing as Chiari 0–as in, the cerebral tonsils aren’t herniated at all, but right at the opening. It’s highly unusual, but he used this to stress the size of the herniation is not as important as the symptoms.
PeteyPie–I hear you on the odd diagnoses. My neurologist wants me tested for something called Wilson’s disease, a condition where the body is unable to absorb copper and so it builds up in the system. Reading up on it, it makes NO sense to me and my case. Why that makes sense, and Chiari with my hallmark symptoms doesn’t, is beyond me.
Laurierace, from what I’ve been reading, Chiari is being identified more often now because of the advancement in imaging tests. It’s often identified coincidentally; they’re checking on a stroke victim, for example, and a CM is noted as well. That was sort of my neuro’s approach–oh, well, we were looking for something else and this popped up, but no big deal, that’s not it.
Personal Champ, I likely will be PMing you later on. I do have tons of questions. Lori W, wow–THANK you for the article link. It confirms a lot of what I’ve been reading myself, as well as what I’ve been experiencing. I just do not understand why neurologists are so dismissive of this. I will be sharing the Washington Post article with friends and family and certainly PMing you in the near future as well.
Hello! I have been on this journey for 3 years now… I chose not to be operated on in the end because I also have Ehlers Danlos which complicates everything. I am seeing Dr. Frazier Henderson in MD I really recommend him especially if you feel there’s more than Chiari going on. I am riding and am functional it’s just very hard, the pain is unreal most days.
I am working hard at trying to up my dressage education to eventually represent the US in a para dressage event :-). For now im trying to find a working student job that will be understanding, that in itself is hard but I have not given up. Feel free to look me up on Facebook our para page is Alicia A Daugherty. Im always available to chat chiari, eds, and related disorders this isn’t an easy road and best done with friends. COTH gave me a few chiari horsey friends and Im very grateful
Good for you working toward that para dressage event, elmerandharriet! You really encourage me. 
And on a day like today when I’m so symptomatic, it’s even more needed and appreciated.
The headache is bad today, and my tongue feels swollen. I’m having a harder time processing words and typing them correctly than usual. Last night my hands and feet were aching in hot, throbbing pain, as was the rest of my body (but seems concentrated in hands and feet).
I did manage to get on my sweet boy yesterday for a little walking around, and that was, as always, great therapy. I had his shoes put back on yesterday as he seems to have sensitive soles, even after trying being barefoot for 14 weeks; he’s great in the ring, but my 1000lb princess can feel every.single.rock. (pea?) he steps on when out of it. I’d love to do more trail riding, but without him stumbling in ouchiness, so the shoes came back.
I’m relieved I got my referral to the new neurologist today and already scheduled the appointment for next Wednesday morning. I also was told my PCP is sending a referral for me to be evaluated by that neurosurgeon who did my two back surgeries back in 2006 and 2007, so at least things are moving forward. Makes today’s symptoms a bit easier to endure.
Thank you for the PMs, too, PersonalChamp and LoriW. They mean a lot to me.
