1 year post-op and in trouble

[Guest guest]

Hi all,

I'm in pretty rough shape right now... I've got a lot of brain fog going on...

so I hope that you are able to understand this. It seems to be a lot easier

writing my words down than speaking them right now though. When I talk I find

that I'm having trouble finding the right words to come out.

I had my decompression surgery in November of 2006. For about 8 months or so

things really seemed to be getting better for me. My body physically and

emotionally I felt better than I had felt in years. I had even got a Government

Grant for people with Disabilities so that I could go back to College.

I knew I had a little bit of brain fog going on before I went back to school but

not untill I actually tried to apply myself to studying did I realize how bad it

was. Once I realized that I really couldn't read more than a few pages at a

time without getting absolutely exhausted I gave the Gov't back their money and

decided that then was probably not the best time to go back.

I also had sleeping problems going on for years. I have needed sleeping aids

every night for the last ten years or so in order to get any sleep. Sometimes

they don't work at all. Sometimes I wake up at odd hours of the night and can't

go back to sleep. Sometimes I'll sleep a good 7-8 hours and feel more tired

when I got up than I had the night before going to bed.

So I went and had a Sleep Study done in October and am still waiting for my

results back from that.

Anyways, since I realized that things were not going as well as I had hoped, I

was in a decent situation even though I'm only collecting Disability as far as a

Salary goes and because I wanted an open schedule to do something positive for

Society while I tried to get my health back in order I started volunteering for

a Charity involved with helping find solutions for people that had gone through

strokes. There wasn't one for Chiarians...

I would go into their offices and help out with all kinds of little

administrative duties for 12-15 hours a week and only on the days where I woke

up and felt great.

Now, over the past month or so, my body has done a complete 180 on me. I feel

like I've been up for a good week or so right now even though I know that I've

been out for a good 7-8 hours a night.

My body hurts all over in kind of a weird way. Does anybody remember what it

felt like the day after you would give your body a real strenuous workout with

weights? My muscles and joints just feel like that. All except for my hands

which are just complete pins and needles. I'm having trouble feeling the keys

right now while I'm typing.

I've had this weird headache for about the past week or so. It's almost like a

tension headache but it will hurt in just one or two spots on my head. To me it

feels like my brain actually hurts.

My bowels are all screwed up. I'm not regular anymore and when my body finally

decides to let me go my stomach starts to hurt really bad and I have to go

pretty much immediately. The stool is solid though... no diarrhea.

It hurts when I urinate. Just kind of like I have pressure on my bladder or

something. I have to go pretty often and when I go it's for quite a while. It

just keeps coming out.

I also have this weird skin thing happening on my forehead. It's like I have a

rash or something... it's red with tiny little bumps all over the place and in

some spots it looks like I've got zits but they are not zits if that makes

sense.

At first I had thought I was getting a touch of the Flue or something but I had

my Flue shot about a month ago and I spent most of the last week in my pajamas

and just relaxing but things seem to be getting worse instead of better. No

fever, no diarrhea, warm and cold sweats sometimes... very thirsty most of the

time...

Anybody have any idea what's going on with me? Is this something that I should

be worried about or will it just go away on it's own with rest?

If I should see somebody who should I see? My General Practioner doesn't

understand a thing about ACM. Even after I had the surgery I had to explain to

him why I needed the surgery, what exactly they operated on.

If I go to see my Neurosurgeon then I have a feeling I'm going to be in for a

long wait. I live in Canada and the queues to see any Doctor at the Hospital is

pretty long right now.