Hey everybody. My doctor told me that my bizarre headaches are caused by my type 1, 5mm, CM. That was on Tuesday, 3/14/16. No offense, I’ve never heard of our disease? disorder? illness? I thought that my headaches were caused by my 4 hour writing routine that starts my day. My symptoms are pretty tame compared to what I’ve read. When I move my right eye up and left I get a shot of pain (or usually do. Currently, my symptoms have subsided). Also, I have mild neck pain and occasional headaches. Over the course of my life, however, I have had severe headaches behind my right eye (where most of the CFS fluid seems to go) though they are not regular. I live in Southwest Montana and so I must head to Salt Lake City for any doctors familiar with CM. I am a very active fisherman/bow hunter/ yogi…will all of these things end? Is surgery in my future? What can I do to contribute to this community? Thanks.
H, Lemmi, nice to see you here! :)
Having Chiari doesn't mean you will get worse and have to give up things you love. It is thought most Chiari caes ae asymptomatic, though people get symptomatic in their 30-ies, or after head traouma. Having the diagnosis means you know what to do in case the symptoms get worse. This is a good thing. You already have found a dr who is fimiliar witt Chiari. This also is a really good thing! Live your life just like you have until now( the only change I would suggest, is be careful of head trauma, it could make things worse), but keep in mind the Chiari- if your symptoms get worse, or some new ones appear, don't waste any time and go see your dr! Do not be afraid of having surgery- if you ever need one, there is a really good chance it will help, also it prevents possible nerve damage.
It's nice of you to ask how can you contribute to this community. :) There are a few ways. First, you can update us on how are you doing. It will always be encouraging to other chiarians to read about someone doing good or getting better. If you don't get better, we will be here for you. Second, you can leave comments to others. A few nice words can really help someone get through the day. Even if the person has much worse symptoms tha yours, you can help them. Be honest. And then there is donating. you can donate to Ben's Friends. You can also support Bens Friends by shopping in Amazon through here. If you have friends who shop there, ask them to use the link. And don't forget you can ask questions here, and get support. We are a support group.
If something I wrote doesn't sound right, thats because one of my worst symptoms is extreme fatigue, and my mind works poorly.
Best wishes,
Kristine
Welcome to the group
No Chiari is not a sentence to the end of your life as you know it! Please know that people who post here and who are still here tend continue to have medical problems. Those people who are doing fine with a Chiari diagnosis, with or without surgery, do not stick around as they get on with their lives and are no longer seeking information or support. Keep that bias in mind when you poke around on the site.
Good luck with your own CHiari journey.
Thank you. It’s been a hell of a week. I was both relieved and terrified by my diagnosis. I head to Salt Lake City in a week. There I’ll meet with a few indivual NS and doctors who are familiar with Chiari. Hopefully, I get cleared to go to Hawai’i for the vacation my wife and I have planned for the past two years. Thanks again everybody.
I have just received my diagnosis, too. I had never heard of it. Until 1993 I had hardly had a headache ever. I was 18 then and had a miscarriage and they did a spinal block. After that, for a year, I had to walk on tiptoes because if my heels touched the ground my head felt like it was about to explode. After about a year, it mostly went away except for occasional bad headaches. Then, maybe three months ago, they came back with a vengeance. I ended up in the hospital and with an appointment with a neurologist who diagnosed me. Anyways, my point is, from what I can tell, this condition seems to me to be as different as we are. And I think we, as a community, are our strength.
I am also new to diagnosis. I have had 2 surgeries already but still feel as though I don’t know everything about chiari. I can tell you my neurosurgeon said no roller coasters or trampolines. I think if you’re a active person most likely you will continue to be able to do most of things you love. There maybe a thing here or there your doctor won’t recommend. My advice to you is to write a list of your questions like can I bow hunt and so on and take it with you so you can get direct answers. I do this because I used to feel like I didn’t ask something I meant to or I would forget what the doctor had said. I had my decompression surgery in December and I had too but I have syringmyelia and it’s causing nerve damage. Not all chiari patients have to absolutely have surgery. If your symptoms are mild and you have no other conditions surgery doesn’t have to be absolute must. Everyone is different and every case is different so it’s hard to say if you will need surgery. I do wish the best for you!!! I still fell very new to this and it’s still fresh if that makes sense.
Hi Lemmy, I was just wondering if you have been to Salt Lake yet, and if so how it went? I live in Idaho Falls and I had my decompression surgery done here by a local NS. I had no complications but its been four years with little improvement. Since joining this support group I have found out so many things that my NS never mentioned tests he never bothered to order. I’m wondering if I had gone to Utah or a chiari specialist if thing would have turned out different. Anyway I hope to hear how things went for you.
p.s. Just have to ask, are you a Motorhead fan?
Kelly
Yes, I love Motorhead. Yes I went to SLC. I saw Schmidt. He was great…though a bit strange. It took me forever to reply due solely to the fact that I’ve been well out of the loop. Yoga, diet and meditation have helped my symptoms though that won’t last. I can tell… because they are back ten-fold. I’m scared of surgery and won’t do it unless Schmidt recommends it. I see him again in March.
I found out I have CM on Monday. I just went to the Neurologist today to get the official test results. He said my headaches and other symptoms are not from CM and that CM doesnt cause any problems. He upped my medication for my headaches and said see ya in 4 weeks! I left in tears.
I live in Florida was diagnosed a year ago get horrible neck pain anxiety which never had before this head aches mainly in back but my legs stiffen up get extremely shaky and can’t concentrate or out an intelligent sounding sentence together but anyway my nuerologist told me none of my symptoms where chiari related as well I have an 18 mm herniation he told me to see a chiropractor
Please be careful at the chiropractor!!! They can do more harm than good if they do not understand your Chiari. I go to one myself and she limits a lot of what she does and will not do certain techniques because they could hurt me. Make sure whoever it is they listen. She does a lot of cranial and neck massage, light stretching and adjustments with an instrument-no cracking. (Just my two cents on this!) I’m not a doctor but I’ve heard so many horror stories about the chiro and CM good luck!