Hi. My name is Adam. Everyone calls me Twitch.
I was diagnosed with a Chiari back in March. At the time, doctors thought it was no big deal. Lately, I've been having a list of really unusual symptoms...all of which point toward my Chiari.
Please take a moment to read my story on my profile. I would rewrite it here, but it's so long, that I hit the 4,000 word limit multiple times. :)
Thanks in advance.
Hello Adam, welcome to the site! I was able to read your story, it is so tough to go to doctors with so many questions and get no answers in return. I feel for ya on that one. I hope you find some comfort here, as most of us have been through the ringer with this and we are all here to listen to your concerns and try to help with questions you might have. Even though we are by no means docs we want to try to help : ) I am also newer to this site, but have found awesome friends here that have such kind words when it seems like I need them the most. Hoping for the best for you and look forward to seeing more posts. Wishing you a great new year with many answers that you need!
Crystal
Hi Twitch:) Welcome to the site! There are a lot of great people here who understand what you’re going through. I’m still fairly new here myself, but the people on this site have already helped me so much. Sometimes it just helps to vent to people who “get it” and don’t expect you to say you’re fine and put a smile on your face. What we go through SUCKS! I’ve read your story and you have been through a lot. My pain and symptoms started a little over 4 years ago after a car accident. Prior to that, I felt great and lived for adventure. I loved roller coasters, sky diving, parasailing, and anything else like that. Now, I can’t stand for more than 5-10 minutes without increased back pain and leg numbness. I came really close to collapsing in the express line at the grocery store the other day. I fall a lot too…I keep twisting my ankle on top of everything else. I haven’t experienced loss of bowel control, at least not yet, but I do have issues with bladder control. Like you, I’ve been blown off by doctors who don’t take my diagnosis and symptoms seriously. I’ve been diagnosed with Chiari (type 1), Syringomyelia (Syrinx), and multiple herniated discs. My L4 and L5 are shattered into little pieces. I also take a lot of pain medication, which barely takes the edge off. I’ve tried many alternative therapies, but nothing seems to help. So, I’m going to see a NS that specializes in Chiari. I recommend that you do the same. You may need to travel a ways to see one, but from what I’ve heard it’s worth it. I live in Vancouver, WA but I’m going to Seattle, WA to see the specialist. I haven’t experienced all of your symptoms, but I do understand your pain and frustration. I hope it helps to know you’re not alone:) I hope you get the care you need and start to feel better very soon:)
Crystal
Twitch,
I’m glad to hear that you have a Neurologist like that. It sounds like he’s doing everything he can to help you. My Atlas Orthogonal Chiropractor has gone out of his way to try and help me. He admits he can’t fix me, so he just tries to make me as comfortable as possible. He is the only doctor that was willing to give me the referral I need to see the Chiari Specialist. I saw him for the 1st time about a year after my accident and he was the only doctor that took x-rays and ordered an MRI. He even went out and found me a lawyer! I don’t know what I would do without him as my advocate. Ther are some good doctors out there that genuinely care:) I read that you have a bunch of appointments and tests coming up. Please let me know how it goes. I’ll keep you posted on my progress too.
Crystal
Good luck with your appointments today! Please let us know how it goes. I have memory issues too. I use to have an almost photographic memory…not any more. I hope your tests/appointments give you some answers.
Crystal
Not that I am a doctor or knowledgeable on seizures in anyway. But I started taking Topamax which is really an Epilepsy medicine to helps with preventing seizures. It's been shown to work on migraines and that's why I take it. It just might be a Win/Win medicine for you!
~ Your Chiari Sister, Lori D
Twitch said:
In the last ten days, I've had seven seizures. I'm also collapsing multiple times a day. After doing some research, I have found that my seizures may be something called "cerebellar fits". They're a symptom often seen in children with Chiari. The collapsing is something referred to as "drop attacks". They're rare, but also associated with Chiari. I've been having them regularly since March. I've had three spinal surgeries to correct things, thinking that it would correct the situation. Of course, I'm falling more and more frequently.
I see my neurologist in the morning. He's a very reasonable person that is open to suggestion and thinks outside the box. I'm coming to him with a list of information and symptoms. Hopefully, I'll be put on the right path this time. I also have two seriously herniated discs, so spinal surgery may still be in the picture. I find that out Thursday. Fun times.
I hope you have a good appt with your NL today.
Diana
Oh Adam, my heart breaks for you. I so hope that your appt today goes well and the NS figures out what needs to happen next. Please be careful, we don't want you getting hurt during one of these seizures.
Please let us know how you fare after your appointment.
Lori D
Twitch said:
Abby,
I've been taking Topamax for my Tourette's for three years, now. Up to 800mg a day.
It doesn't even do much to control my Tourette's tics anymore, let alone do anything to help with the seizures or migraines. I've been having seizures like this for a little more than two years, but they used to happen once every three to six months. I've had seven in 2012. Something is seriously wrong.
Lori Dutcher said:Not that I am a doctor or knowledgeable on seizures in anyway. But I started taking Topamax which is really an Epilepsy medicine to helps with preventing seizures. It's been shown to work on migraines and that's why I take it. It just might be a Win/Win medicine for you!
~ Your Chiari Sister, Lori D
Twitch said:In the last ten days, I've had seven seizures. I'm also collapsing multiple times a day. After doing some research, I have found that my seizures may be something called "cerebellar fits". They're a symptom often seen in children with Chiari. The collapsing is something referred to as "drop attacks". They're rare, but also associated with Chiari. I've been having them regularly since March. I've had three spinal surgeries to correct things, thinking that it would correct the situation. Of course, I'm falling more and more frequently.
I see my neurologist in the morning. He's a very reasonable person that is open to suggestion and thinks outside the box. I'm coming to him with a list of information and symptoms. Hopefully, I'll be put on the right path this time. I also have two seriously herniated discs, so spinal surgery may still be in the picture. I find that out Thursday. Fun times.
Twitch,
I’m so sorry that you’re going through all of that. I’m frustrated and discouraged by all my doctors too. If they had to walk one day in our shoes, they would stop saying that it’s not a problem. I don’t know what I would without the support from this site to get me through. Just remember that you’re not alone in this. All we can do is keep searching until we find that one doctor that listens and takes our pain/symptoms seriously. I hope you find that doctor soon, because you have suffered enough.
Crystal
Welcome to the site!! It has helped me alot and hope it does you as well.