Basically, here are my issues. (aka, symptoms)


1. Headaches after exercize in the lower back (of my head), near my spine, radiating towards my ears.

2. Headaches that come on suddenly for no apparent reason, same region.

3. Headaches in the same region from bending forward, or back too much.

4. Some headaches accompanied by loss of feeling in right side: usually starts in my right hand, near the thumb, radiates ******d slowly to my whole hand, then my cheek, followed slowly by my lips, gums, and tongue, solely on the right side, never on the left.

5. Headaches that last upwards of 3 hours with no relief from any pills (motrin, asprin, tylenol, otc migrain, etc)

6. Steady throbbing in my head near the back again, if I move too quickly, stand up too fast, etc.

These symptoms sometimes happen once a week, or sometimes, only once evrey few months, and they have been going on for about 4 years on and off.


Here's some background info on my mom.

Last September, my mother (after years of misdiagnosed problems) was diagnosed with a Arnold Chiari Malformation (I don't recall if it was type 1 or 2), and had to have surgery. Her symptoms that I remember (I don't live near her or see her often, so it was all just second hand info that I got at the time) were bad back pains, being unble to lift anything heavy, being unable to do anything strenuous without having horrid headaches.

Her issues didn't become a problem until about 3 years ago, when all the misdiagnosed theories came about. However, I do recall that she's always had headache and back ache problems.

Yes, the symptoms alone suggest I should be in seeing a doctor, but lack of funds, and lack of insurance really limits what I can do. No, we don't qualify for state insurance anymore.

I just want some oppinions on what it might be, or pointers to a website that might be helpful in finding something myself. I've had very little luck finding good sites that can tell me anything about my symptoms, if they are related, or not, if it's something simple like lacking enough of a vitamin, etc.

So, without trying to beg, any info anyone could share would be helpful.

Thanks

I should have listed this part too, but forgot.

I've been told by two seperate doctors that I don't have migrains, but then, doctors misdiagnosed my mom's head problems, too, so that could be all it is.

Next, I've been depressed on and off for about 13-15 years (basically since I was about 12), have panic attacks, and social anxiety.

Now, granted, the depression is the only thing medically diagnosed, however I've never really talked about the other things with doctors.

Quick update... I have a ct scan scheduled for thursday afternoon. I called on Monday when I hadn't heard from them yet, and they called back asking if I could be there in an hour. Mind you, I live just over an hour away, and to get there in an hour, I'd have had to leave 20 or 30 minutes before they called.

Anyway, I go in thursday.

I know it's not something I can just diagnose myself, but I have very strong feelings that it's an ACM. The Wellbutrin is currently ****ing with my system. I'm queasy all the time, I can't sleep real well, and wake up feeling like I didn't sleep at all. My headaches haven't gone away. If anything, they've gotten worse. Sitting up at the computer makes my neck and shoulder ache from holding my head upright. That's new, and more than a little disconcerting.

The midrin I stopped taking. It was dulling the edge of my little headaches, but not getting rid of them. It made me sleepy, without being able to really sleep, and I was really queasy on it. I have very little faith that it would do any good when a big headache hits. If it can't get rid of a small throb, what's it going to do to the big bangs?

Also as a side note, my neck and back were hurting so much yesterday that I resorted to taking a vicoden again. Big mistake. Gave me the shakes, made me feel like I was going to toss my cookies every time I moved, and my face went numb. Course, my face has been going numb now and then anyway, so that might have been coincidence.

Lastly, since I've noticed the quick tiring in my neck muscles, I've also noticed it in my arms. It starts to hurt holding my arms up enough just to type, and they are half supported when I do that.

I'm torn on the ct scan. On one hand, I hope nothing shows up, because an ACM won't show up on one. If it doesn't, then I can get the MRI done to either reassure me it's not there, or to prove to me that I'm not nuts. On the other hand, I'm terrified that something WILL show up on it, like a tumor or something. We don't have cancer running in the family, but...

-sighs- So, that's why I haven't been around much as of late, and likely won't be still. I have to lay flat on the floor for about 30 minutes to combat the 10-15 of sitting at the computer.

Hi Gilly Bean,
My sister (30 y.o) just had surgery for Arnold Chiari Malformation this summer. Your symptoms sound so familiar.

I hope you can find info that will help explain some of this to you. I do think this is something that can be present in families.

I have attemped to post ACM site addy's in the past only to be banned. I will tell you, however, there is alot of information out there that is very helpful. Please try going to your address bar and typing in Arnold Chiari Malformation and it should take you to many sites.

My sister is doing very well right now, and we are so thankful.

Wishing you the best, Dodi

Thank you for a response! http://www.healthboards.com/ubb/wink.gif

My mom has been fairly helpful in nabbing me links that she used to visit when she first found out about her acm. I suppose if I do have it, I'm lucky in that I have done quite a bit of research on it. My mom had never heard of it, and had it dumped on it.

At least if I have that, I already know what to expect, and won't be so shocked. All though, if it isn't that, well... then I know I'm going to be terrified.

I'm glad your sister came through good.

Gilly

My sister was just diagnosed with ACM after ayear of being told it was a sinus infection. She had an MRI done and then went to see ENt doctor and he read the MRI and told her that was it. Now she has an appointment with a neurosurgeon...as surgery can correct this. She has been miserable for so long. Not many GP doctors have a clue what ACM is. The doctor said she was born with it....and by the way it is hereditary.......so you need to see the doctor.....
When my sister coughs, she gets this horrible headache and her eyes roll back in her head and she looks like she's having a seizure.......it's very sad....her color is bad, she's weak and not leading a very good life at this time. I hope after surgery she will be able to enjoy life again. Have you looked up ACM? there's a lot of great websites to read.......Your symptoms sound just like hers......

Good luck to you~!

Good luck......

Originally posted by thehomefolks:
My sister was just diagnosed with ACM after ayear of being told it was a sinus infection. She had an MRI done and then went to see ENt doctor and he read the MRI and told her that was it. Now she has an appointment with a neurosurgeon...as surgery can correct this. She has been miserable for so long. Not many GP doctors have a clue what ACM is. The doctor said she was born with it....and by the way it is hereditary.......so you need to see the doctor.....
When my sister coughs, she gets this horrible headache and her eyes roll back in her head and she looks like she's having a seizure.......it's very sad....her color is bad, she's weak and not leading a very good life at this time. I hope after surgery she will be able to enjoy life again. Have you looked up ACM? there's a lot of great websites to read.......Your symptoms sound just like hers......

Good luck to you~!

Good luck......


Thanks for sharing your experience. It sounds like your sister is having a very rotten time of things.

I have looked up ACM quite extensivly both when my mom was diagnosed, and more recently since my symptoms popped up.

Today I drove down to her neck of the woods to have a CT scan done, which I suspect won't show much. Next week I go back for a regular appt, and then (fingers crossed) we'll schedule the MRI.

It was actually a nurse practitioner who finally peiced together my mom's clues and sent her in to get an MRI to specifically look for that. After hearing my symptoms, that same NP said that she wants to do the MRI asap, but first needs to see the CT scan (insurance issues).

So... hoping for the best http://www.healthboards.com/ubb/smile.gif

My sister was just diagnosed with ACM after ayear of being told it was a sinus infection. She had an MRI done and then went to see ENt doctor and he read the MRI and told her that was it. Now she has an appointment with a neurosurgeon...as surgery can correct this. She has been miserable for so long. Not many GP doctors have a clue what ACM is. The doctor said she was born with it....and by the way it is hereditary.......so you need to see the doctor.....
When my sister coughs, she gets this horrible headache and her eyes roll back in her head and she looks like she's having a seizure.......it's very sad....her color is bad, she's weak and not leading a very good life at this time. I hope after surgery she will be able to enjoy life again. Have you looked up ACM? there's a lot of great websites to read.......Your symptoms sound just like hers......

Good luck to you~!

Good luck......

would a nuerologist be able to know wat it is from a head and neck mri?