New and need help

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I signed up last night. I have a long story. When my mom was in the hospital to deliver me, the doctor was gone and my mom told the nurses the baby is coming. They told her no don’t worry and checked her and sure enough I was crowning. They didn’t have my mom in the labor and delivery room and the doctor wasn’t there, so they pushed me back in, put mom in a straight jacket while a doctor came. I think this was the beginning of my problems.

In high school, I wrote this yesterday, I was hit in the head with a metal ice chest while the car was traveling over 80 miles an hour and the rear tire came off.

It took time to develop problems. In my thirties, I got severe major depression. Around that time I began experiencing pressure in my skull. No doctors could help me. I went over 30 years with horrible pressure in my skull that I was become completely historical because I couldn’t handle the pressure. Doctors would not do a thing. I asked for an Mir and was refused by doctors for thirty years in 3 different states. I asked to have a test that would check the pressure in my head. They said no. Finally in 2009 I discovered a doctor who worked on cranial bones to put them back in place. It helped tremendously.

I still have some pressure. My sutures in my skull are quite large and I can hear my cranial bones crack.

The accident gave me horrible weakness in my arms and legs. I have spent my adult life trying to use discipline in making myself walk and function. I am at the place of giving up. I have been house bound for over 35 years. I don’t have the energy to keep trying. I have most of my muscle mass, my knees are horrid and I can’t have knee replacements. Doctors say I am not well enough. I just found craniocervicsl joint disorder and diagnosed myself.

I have gone to the chiropractor for over 35 years trying to stabilize my atlas and occipital bones. I have suffered more than I can say. I don’t know what I can do now to find motivation to try to move my body anymore. Sorry for the length of my story. I really need help. Thanks!

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Ellenc, that is a very sad story. I'm sorry all this has happened to you. If I understand you correctly you have not been diagnosed with Chiari Malformation? If you do have a CM you should consider stopping having chiropractic treatments as they are not recommended for people with Chiari Malformations. CM is also something that people are born with as a result of the skull not forming correctly, although it can remain asymptomatic/inactive all their lives and may only be diagnosed through tests/imaging for unrelated issues or it can become symptomatic over time or as the result of trauma.

None of us here can diagnose you or tell you what to do, we are a peer-to-peer support group, but it seems to me that you need proper imaging done in order to diagnose or dismiss the presence of a CM or identify the real issue. It could be that the soft bones of your skull were damaged during your birth and/or indeed you suffered a traumatic brain injury when the ice chest hit you in the motor vehicle accident. Or both. Something is at the root of your symptoms. If you do have a TBI then please feel welcome to join our TBI community for support there.

I see you are in Arizona, right this moment I'm having difficulty opening this page of our community, but this is the link to our Bens Friends Recommended Doctors List where I hope you can find a neurologist/neurosurgeon in your area that your PCP can refer you to for investigative tests. 35 years is way too long to suffer - with anything - so please see if there is some follow up you or a family member can make on your behalf.