I am now 31 yrs old, and I was just recently diagnosed with Chiari Type 1. I was given my diagnoses on 23 Nov 2015, so I mean really recent.
So I had been experiencing migraines or what I had thought were migraines. These were intense and extremely painful, and only located on the left side of my head, towards the back of my skull and behind my left ear. So I went to my PCM and she had me try multiple migraine meds but to no avail. We kept changing them and nothing seemed to work. So after about a month or so of trying those meds I was given a referral to see a neurologist. (Side note, this is all going through the VA system...so I couldn't just see anyone). Luckily the neurologist I got specializes in headaches. She did a complete work up and then ordered an MRI of the brain for me.
I didn't think much of it, I was more worried since she was leaning more towards so type of mass/tumor. Or possible MS since I had loss of sensation on my left side with tingling and numbness in my arm and fingers at random times. So about two weeks later I had my MRI, about half way through I was in tears because laying in that position hurt, it hurt like nothing I had felt before. When it was over I broke down, three techs came to ask if I was ok because I don't think that was the "normal" reaction for a brain MRI. I waited and in less than 24 hours I received a phone call from my doctor. I was scared of course because that meant she found something.
Lo and behold, she found that I have Chiari type 1, and I have a protrusion of 1.5cm. I have read on here that others are in mm, but my is cm. so I am thinking this is not a good thing. Since I was given this diagnoses, things have started making more sense, and a lot of what I thought were random symptoms/issues now all seem to be connected.
I am still dealing with my headaches. I recently started physical therapy to strengthen my neck, but this only seems to make things worse. After each session I was getting intense pain and headaches. I talked to my doctor and she is now putting in to get a C-spine MRI, to see if there is anymore damage then I already have(I have degeneration from C4-C6, that I know of).
This is were I am at and I could sure use some help and support because as far as I know, no one else in my family has been diagnosed with this issue. Thanks
Welcome to the group. I hope that you are able to find information that is helpful for you. The diagnosis part always seems to be mixed with relief that something has been found to explain the symptoms and then fear with anticipation of what the next step is going to be. It sounds like you are still the data collection stage, so I hope that that goes well. Be sure to ask lots of questions.
In regards to the physical therapy, please check out my reply to "Physical Therapy is making me worse" on December 23, 2015. I have contact resources if your physical therapist is interested in talking to a fellow PT or they may need to refer you on to someone else. I had found out about the neurodynamic exercises after I had my decompression surgery, and I always wondered if I would have been able to avoid a surgery if I had done them beforehand. Ah well, too late for me!
Thanks. This is going to be a struggle. It seems like I go through a couple weeks where everything is good then I get hit with days of extreme pain. It’s causing my to basically stop functioning when my pain gets bad. I am not a stranger to pain by any means, I’ve had three knee surgeries and I’d rather go through those again then this. And as far as pt is concerned I really don’t think my doctor is going to have me continue with it, seeing as it is causing more harm then it is fixing. I have already been told that due to the type and current condition of my CM I am not a candidate for surgery. Things may end up changing…I do think know. But it is nice to know that there are those that are dealing with this disease and can give support to those like me.
Thanks. This is going to be a struggle. It seems like I go through a couple weeks where everything is good then I get hit with days of extreme pain. It's causing my to basically stop functioning when my pain gets bad. I am not a stranger to pain by any means, I've had three knee surgeries and I'd rather go through those again then this. And as far as pt is concerned I really don't think my doctor is going to have me continue with it, seeing as it is causing more harm then it is fixing. I have already been told that due to the type and current condition of my CM I am not a candidate for surgery. Things may end up changing...I do think know. But it is nice to know that there are those that are dealing with this disease and can give support to those like me.
HI so sorry to hear of your diagnosis of Chiari my son was recently diagnosed with it October 2015 I have suspected that his cyclical nausea and vomiting was Chiari however most of the neuros I took him too agreed he did have a 5mm herrmination but nothing that would cause symptoms because he isn't suffering from migraine headaches he has abdominal migraine by the way he is 23 he has had abdominal pain for almost 2 weeks with vomiting. We do have a neurosurgeon who is in nyc but his office staff isn't very helpful. Tookhim to the WE twice sorry I am ramblings pls tell me why you are not a candidate for surgery.
I am not sure as to the exact reason why I am not a candidate for surgery. However, I was told that at the point that I am at the no neurosurgeon would touch me as far as surgery was concern. I am going to be following up with her here in the next month or so and I will see what information I can obtain from her.