Arnold Chiari Malformation or ACM. This is what I have. I posted this before. I wanted to go into a little more detail about it. So here it goes. I was sick and still am, it's like a diamond, it's forever. I'm talking weird sick. Not your everyday cold symptoms stuff. This was different. When I was in a car accident back in 1987 and smashed my head on the hard chrome metal seat belt buckle holder and passenger window. Cut it open bad and I remember holding my head because it instantly hurt. I felt something cold running down my right hand. It was blood. I had a concussion and whiplash and something else happened to my neck, I don't remember what they called it and a back injury.
I remember hearing an ambulance and next thing I remember was opening my eyes and being in the ambulance then I blinked and I was in the ER. It was all in a flash. I then remember the doctor saying he had to give me a few stitches if it was ok. All I can recall was that he said maybe 4 or 5 of them. Yeah right. I know that there are at least 7 in the initial scar I have that is still tender to the touch after 24 years.
They took x-rays, not that I recall at all, but that I have records of all of them. Anyway I have had nothing but migraines since the instant of impact. From that moment on weird and unusual things happened slowly, but the migraines always stayed. They went from mild to massive and short spurts to long drawn out days. I feel terrible for anyone who has one because I know what you go through. I have actually met people who have never had a headache (I bow before you), lucky you!!! I get them daily and only the intensity changes. I can mostly ignore them because I have had them so long, but not the migraines.
Now for the weirdness. The first few things that ever happened I just wrote off as flukes due to the fact that maybe I had a beer or it was really nothing and I was just imagining things. When I came home from the military and the migraines didn't stop from the medicine I was on then I went to chiropractors. Well that didn't help. I went all the time. I would feel better when I left until about 10 minutes down the road. It was not even worth the drive anymore, but I continued to go because nothing else seemed to relieve the pain. I had numbness and pins & needles in my arms and legs on occasion that I can remember. I would get nausea and want to just sleep all the time. On several occasions I would have to pull over driving because I can remember getting or seeing these halos or what people call auras and I would black-out. I didn't even know that was happening to me. I only knew once or twice that it happened and that was only because I didn't recall the drive in between my to and from where I was going. I would consider that weird. Not knowing how you got from point A to point B. It was beginning to get scary. I called a Neurologist. They get me in and did some testing. I had these tabs glued to my head and electric shock or something were sent to it and recorded. I don't recall the entire test, but I can remember the goo in my hair. Yup, migraines the doctor said and gave me some other medicine. Well no friggin way! (chuckle here) Of course they are, thats what I was there for. Now I'm sure something else can be done, but I wasn't the doctor and I was young so I went along with whatever I was told.
I felt a little better with new medicine, but still tired, sleepy all the time. Back hurt, head felt heavy at times like I had to lay down. This would pass and I would just ignore these things and move on. My knee would start to hurt like I was an old lady. I mean like 80 years old and ran a marathon. Then there were days that I felt like I had on concrete boots and gloves. It was driving me nuts. Next my eyes. My vision would go from normal to blurry to halos around lighted objects to double vision constantly.
As the years went by I just dealt with the pain and new issues popping up, but kept going to doctors. I kept having different issues come up like my hands going numb, just 2 or 3 fingers at a time on a hand at different times, then go away. I would have pain in different parts of my body in the joints usually and feel like I had the flu without the vomiting. This was all the time and only got worse over time. I was taking a shower one afternoon. I couldn't take hot showers because they feel extra hot on my shin. Well I'm in the shower a little warm the water is and my feet turn bright red and almost blue. What the heck! I get out and dry off. I take pictures of my feet because no one will believe me.
One afternoon my mom was at my house visiting and I was just walking through my den area and we both heard a big "pop" I had to sit down immediately because the popping sound came from my right knee. I popped a vein. Well this was new. It instantly became bright red and spread out over my knee cap. It was hot to the touch and my knee hurt it I put pressure on my leg standing on it. Off to the doctor I went. I was told I just "blew out" a superficial vein. It was an inflammation it will go down and they put me on an antibiotic because of the size of it. It completely covered my knee. Oh, and if it happens again come back. Not long after that it happened again. It may have only been a few weeks later, but this time it was my left leg down my by ankle and it was so bad I was limping and could barely walk. My leg was swollen and I thought it was a spider bite, but no marks and you could see exactly where the vein popped.
The doctor decided to do a Doppler sonogram on me this time to make sure I didn't have DVT (deep vein thrombophlebitis). Negative for that, but I do have Superficial Thrombophlebitis, which just sucks. I can be walking and "pop" what pain sometimes. Be in fact it just happened the other night. I woke up to it in my knee. I get it in my hands too, but more in my knees down. It hasn't been as bad as before the brain surgery but I still get it every few weeks.
Time goes on and the normal or what I call normal issues happening to me now, migraines, popping knees, joint pain, double vision, blurry eyes come and go, numbness in limbs (occasionally) pins and needles sometimes. Now for most people they would not consider this normal, but I live with this everyday so anything above this I would consider this not normal. You with me so far.
My kids are young just in school and I'm working my butt off to help pay bills. I just put myself on the back burner because Krislyn is Autistic and she is much more important than me migraines and pain or not. Amber is 2 years older and and also needs me, not as much because she isn't a special needs child, but nonetheless she is a child and needs her mom.
Now I continue working, taking care of my home, kids, bills, husband, animals and myself the best I can then I get more symptoms. One day I'm at my job and we get pizza for lunch. I have a slice and I get viscously ill. I mean instantly. I go to the Urgent Care and tell then what happened. Pain, cramps and it feels like my insides are hard and sticking out. They do massive testing of all my organs and blood tests. I have an infection somewhere and they tell me I have a kidney stones that will eventually come out but probably not for years. Ok, but what is wrong? They have no idea its not food poisoning no one else was sick and all my organs seem fine. I get antibiotics and nothing still pain, discomfort and sick to my stomach. I lose like 25 pounds in 2 months and no reason why. They do more blood testing and find nothing. One more round of antibiotics and poof the pain is gone and I feel fine like nothing happened.
Things come and go and in between everything else I get bronchitis and upper respiratory infection all the time during this. I mean like 5-6 times a year. Its crazy how often I get sick. One day I can go and eat whatever and be fine the next day I can't stay out of the bathroom. A few more years go by and I have to say I am not one to ever get a cold. When I get sick I go all out. Flu, bronchitis, Upper respiratory the list goes on and on.
One day I have some cramps and just done feel good. My husband wants to go hiking with the kids and I just want to stay home so he goes. I now have blood streaked mucus in my stool and I have diarrhea or I can't go for 3 days at a time. What the heck is going on here. So off to another doctor I go. Ok, I may not eat the best, but I eat. I go to the Gastroenterologist to be checked out. They tell me to keep a calendar of my pain and eating. Ok, here we go. I think its the fact hat I was so young and I was. We tried everything for the stomach and nothing worked. I would go back and forth and have gas and bloating and some blood and discomfort. I was also there because of the stomach issues from the pizza incident prior. So maybe something was connecting, who knows or was it all in my head. Endoscopy it is. I have this done and the doctor tells me it was beautiful. Well that made my day. I was beautiful on the inside and I have the picture to prove it!! Now what? Oh joy, I know what's next, endoscopy, oh poo! lmao! Sorry I couldn't resist. Well that gets done and they find some polyps. Damn, ok remove them and biopsy them.
In the meantime, I'm at home freaking out. I have blood in my stool, lost a ton of weight getting sick, nothing else happening and what's the first thing that comes to my mind, yup, you guessed it, the "c" word cancer. Oh did I have a breakdown. I cried for 3 days until the biopsy came back. BUT, they called me to tell me it was inconclusive. So now I have to wait another week to be resent out to be micro-biopsied. It came back that I have micro-colitis which still is not fun to deal with, but better than cancer in any way. I had to go back in a year for another one then if clean every 3 years. Now that is good I felt better.
Six months come and go and I feel like crap and I still go to the Gastro and he suggests that I get allergy tested with all my symptoms. I agree so off to an allergist I go. I go into the doctors office and the first thing I do is sneeze, ironic I know, but true. Someone has this perfume on that is just killing my eyes. I mean I always knew certain things would bother me, but why on the world would you go into the allergist wearing perfume? I meet the doctor, she's so nice and we have a nice long talk about how often I get sick. Oh my. She just takes it all in taking notes and I go on and on. She then does and exam and starts to talk. She tells me that with all that I have told her like me knowing my dust and sever cat allergies and the fact that I get respiratory infections a lot we should do blood testing rather than skin testing and she wanted to do patch testing for skin (I think thats what they're called) allergies. Ok, maybe this will be the root of all my issues with the migraines and other stuff too. There was another reason I was there too. I would be eating Chinese or Polynesian food, which I love and I would break out in hives. I would drink an unsweetened iced tea with real lemon and get hives. Just get them for no reason. So testing confirms so many things. Allergic to everything and I mean everything. 42-45 out of like 47 items tested. The thing is I have a really elevated IgE level. I was told by the doctor that having asthma you would have an increased level, but I wasn't diagnosed with asthma at this time. My IgE level was just over 3000, 3060 to be exact. Normal being between 0-120. Well then, My life just gets better all the time. The didn't believe it so they took blood again and the same thing. It was the same. With that being seen my doctor started me on immunotherapy shots to help my allergies. This helped us realize what was making all the hives just pop up for no reason. I had so many level 5 and 6 even allergies 6 being over the top. Cats, dust, all the grasses, trees, mold, soy, shellfish, wheat, milk, egg, corn, yes corn, and meats well all but chicken. Even rice was on the low end of the chart, but with my IgE being so high it makes the low end allergies react like someone with high allergies.
Next for the patch testing. It's called RAST testing. I don't know which is worse, needles, which I am actually fine with or an itch that just never goes away (if you're allergic). This is an adhesive strip that has little dots of all the things you could be allergic to on it attached to you skin for 2-3 days. Of course its in the middle of your back so you really can't scratch it. Not that you're supposed to anyway. The second she put it on I was going nuts. I asked the doctor oh, can you just itch right there, oh right there. It was comical to say the least. I came back in and well, more allergies, was I surprised, nope. Latex, black rubber and adhesives. Well that explained a lot more. I always remembered Band-Aids leaving marks even if they were on for just a few minutes and giving blood forget it. They would have gloves on and use the band around my arm. I would turn bright red and itch then the mark would stay there for the longest time. The nurse or whoever took it would just tell me it was from being so tight on my arm. I always knew, but it was never confirmed, until now. Boy, do things really make sense! Onward with the immunotherapy shots we go. Ha, now this will be fun!
To be cont'd.
(this is a few years old, but I lust loved this picture)
