Chiari Online Support Group

The Journey continues


I am not sure if it was this time or one of the times before that they did a CT scan and found the dark spot. The final time when I was rushed to the hospital was most likely the time I don't know for sure as my memory is about junk and has been for years. I was being scanned which had become normal for me I took off the C collar and let them scan the area they could not see. I am and have been since then the one that does what ever I want in the Docs office or anyplace else any time. My therapist thinks it is great I have no shyness about doing fun things in her waiting room or her office as I will tell the nurse if she does the BP wrong. Anyway with the finding of the dark spot off we went to find a Doc that could fix my problem. It was a long journey and several Docs that I later found out could have killed me by just cutting away and not checking everything. The top of my spine curls towards the back of my neck slightly with the muscles having to be checked for strength. I have had them checked 3 times since as well and they are still as strong as they need to be and the spine has not moved to the 20% needed for surgery. With that checked I went and spent 4 hours in an MRI to get the all the angles he wanted. Then he set into motion the whole lets see if there is something that can be done to release the pressure of this without surgery.


It took only a week and he said there was no way that anything was gonna happen without surgery since it was at about 28mm. He and his nurse did their best to get me to listen to what surgery would require and what would be done to me. I am the type that believes the less I know about what damage you are going to do to my body the better off I am gonna be in the end. I did not know a thing at all until the day after surgery about what they were gonna and did do to me. They did the surgery took 5 hours and as a precaution Dr Oro always put you in ICU over night to make sure. At about 2300 that night I had the whole place on code blue scared they were gonna lose me. My heart rate dropped to about 8 and my breathing was 4 they had the crash cart and everything else on it's way when they woke me up. I was not pleases with being woke up cause that was the best I had slept in a long time. The next morning I started therapy of moving my head around and doing what was needed to get back to work. I worked like crazy and at 8 weeks I had better neck movement than the 5 guys that I was gonna enter Physical Therapy with who were about done with 6 weeks worth. I had just about 3 months of great feelings and thinking I was gonna go great and be normal. In Oct of 2014 I was cleaning under a desk and stood up way to soon smacking my head hard and waking up a few minutes later. A couple days later I did the same and had to spend time at the doc but she said I was fine. From then till now I have had one long headache the only change is going up and down on the pain scale. I have been through more docs than I care to count and I have now started taking myself off of any med not working. I have been to therapy for my posture and that was a waste of time except that I know now if they crack my back I crack their head. I hate to let anyone drive for any reason no matter what and after they cracked my back I let my son drive. I have taken so many kinds of pills and migraine stuff I think what I have running in my system now would kill a pig. I also had a kind of laying hands on to cure my pain and I can tell you after she dug around in my mouth (because the nerves in your head talk through your mouth) and touching my head that did not work. If you wonder about anything ask me I am an open book!!!