Quote:
Originally Posted by Raigne
Hey friends, I didn't see this board when I first joined the site a few days ago.
I'm Raigne, and I was diagnosed with ACM1 when I was 38 years old. I'm about to turn 48 in May. I spent the majority of my life with all the typical ACM symptoms, pain in the back of the head/neck, shoulder pain, not feeling hot or cold in hands or feet. No balance, always falling down and just pain, pain, pain.
Tons of MRI's (once they were used regularly), numerous Neurologists (none of whom were trained to spot either ACM OR Syringomyelia - which I also have) and a six week migraine where I went into the hospital for a week. Finally a new Neurosurgeon came to my neck of the woods (back then it was Dallas/Ft. Worth, Texas) and before my first office visit (after he got my records from my reg. doc) he sent me for an MRI. I walked into his office with my husband and 1 year old son and he told me he knew exactly what was wrong and how to fix part of it.
So in October of 2004 I had the decompression surgery. I literally woke up from the surgery...BRAIN surgery...feeling better. That pressure where you feel like the back of your head is about to explode was gone. Of course I was bald and rocking a nifty new zipper scar, but the ACM pain was gone.
Unfortunately, my Syrinx got worse over the years. I was told I couldn't pick up my little boy again as lifting anything over 10 lbs was a no no. We had work arounds for everything.
I'm not sure if any of you have the following experience, but I thought I'd put it out there to let you know you aren't alone.
Since the surgery (and it's not because of the surgery, it's just because my body was so injured for so long - 38 years), I've been diagnosed with the ACM, Syrinx, Fibromyalgia (it sucks, btw), Osteoporosis, Reactive Hypoglycemia and Allergic Fungal Sinusitis.
Next week I begin testing for Multiple Sclerosis as I have a majority of those symptoms as well. Syrinx can mimic MS to an extent, but the stuff I'm dealing with can't be laid at Syringomyelia's doorstep. I've already been told by a few dr's that they believe I have MS, I just need to go get the official diagnosis, or a diagnosis for whatever is going on now.
I continue to rest my neck often and continue to get checked out by MRI's periodically to make sure all is ok and no surgical intervention is again needed. I'm with a great pain management clinic and I just play the cards I've been dealt to the best of my ability. I'm losing the ability to walk again (I have a couple episodes a year where my legs "go") so I've been staying home a bunch and just resting. When you're constantly tired from dealing with pain, being able to stay home is a good thing. I'm blessed that Syringomyelia is on the Social Security Administrations list of acceptable claims for SSDisability, though it's hard to get approved on a disease that few have heard of. It took me trying once on my own and then hiring an attorney for the appeal to finally get it.
So, I'm going to read thru posts and see how everyone is doing and see where I can help, encourage or just make ya laugh.  |
Hi Raigne, My names Toni from Pittsburgh, PA. I am twenty years old and I was diagnosed with Chiari back in 2011. I was having severe headaches and tingling in my hands and feet. I talked to multiple surgeons and they didn't recommended the surgery since I was so young and the symptoms weren't unbearable.
Two years later the headaches were getting worse when I would sneeze, cough, or strain myself. The headaches were to the point where I couldn't move at the peak of the pain. I consulted with my doctor and he gave me headache medicine and something for the tingling in my hands and feet. About a month later I woke up and couldn't feel anything from the waste down. Lost control of my bladder and all. I went to the hospital and my neurologist and a surgeon I saw didn't think it was the Chiari. I was in the hospital for about a month and a started getting feeling back slowly, I did PT and all and started walking again. The tingling was still there and the doctors didn't know why I went paralyzed and honestly didn't care to figure it out.
I was determined to find the right doctor and I did. My PCP referred me to the Dr. Bookwalter. He requested a cine MRI. We discussed the results and he said he believes all my problems were coming from the Chiari. He told me he thinks the surgery would relieve most if not all the symptoms. I thought about it for two weeks and decided to go with the surgery cause I couldn't live the rest of my life in the pain I was.
March 26, 2014 Dr. Bookwalter and his wonderful team did the surgery. I also woke up feeling AMAZING! All pressure was pretty much gone, no headaches since, and no tingling at ALL. My wound is healing up wonderfully. I have been putting Cocoa Butter and Vitamin E oil on it. The only thing I am worried about is I slipped up and lifted my niece, who is 35 pounds, the other night. I haven't been able to move my neck since. It hurts BAD to even press around the incision. I see my doctor again May 6th for a follow-up so I am going to wait it out, just in case its just a pulled muscle.
I hope your journey brings nothing but good news to you.