Chiari Malformation Vs Mental Health

[Scape_Goat]

Hi… I am a 33 year old male who has been struggling for a while. I was born breech and I now wonder if that might have caused the recent finding of the Chiari malformation. I was told My Mom’s ribs were deformed from where my skull was, however since a babies skull is still considered soft for a while it seems likely that that might be a reason for my Chiari Malformation. I am frustrated I guess to say the least, as I would bash my head against the ground when I was a toddler and the doctor told My Family to get a helmet. Later on in life around 6 years old, I began claiming I didn’t feel well, I would gag and kinda feel like the world needed to stop around me for a while. Then after going to medical doctors who claimed it to be physiological as they found nothing wrong, I began seeing a psychologist at around 8. I was then told it was anxiety and more irritating I was told to hold up a little wooden stop sign or snap a rubber band if I felt I was having intrusive thoughts. This later turned into what was classified as OCD since now I was trained to relieve myself with rituals, and later was told to “wash my hands of it” which at 8-10 years old held less of a figurative meaning. At 10 it was determined I needed to try antidepressants and being the trusting person I was, And My Parent’s willing to do whatever they could for Me to feel relief we agreed to try it. From that point on I would say the meds didn’t seem to make a difference which only meant the doctors would then increase these doses and add in “as needed” meds. I was unable to swallow pills and still struggle, it’s not the fear of swallowing it’s the fact that they do not stay down(which should have indicated something to these medical professionals as well). I got a bit older and felt like maybe the pills did something but noticed I was unable to respond to situations appropriately, I still felt everything I had but was no longer able to translate it. I requested I be weened off the pills and they advised against it. I would leave the doctors more and more angry each time and finally stopped taking the pills and stopped going because it was clear this was not the right diagnosis. I also feel like no mental health professional should say “there is no cure” when they commonly have to say “we don’t know what causes this” or “we don’t know why these pills work but they have been shown to improve similar symptoms”. That being said I have been unable to sleep properly my whole life, in recent years I am unable to function like a normal human being. I lost my job and feel like I am losing my mind, I just recently argued with doctors and said it’s not depression(hard to prove when you lose your job) at 33 years old I was sent for my first MRI because my motor skills are failing I can’t use my hands the way I should, I don’t have control over certain movements and sleep has either been non-existent or overly indulged in(24-48 hours). My whole life I was told I was mentally different, I had to alter everything, I was trained to have OCD, I was confused with other patients(which I was told about when I was little, the doctor pretty much if you think you are different she has one patient who fears cottage cheese. She was telling me about exposure therapy). Later on I was reminded of the old days when I use to fear cottage cheese… funny. Before MRI I stopped seeing phycologists and told my regular doctor that I have ocd and would like to try Adderall he said we can try it. We tried it and I did see improvements but on false pretense, I was just happy to feel awake again. Over the next year or so the affects of the pill began to fade it seemed, I was now able to take 90mg and sleep instantly and through the day. Looking at my medical chart I realized ocd was replaced with ADHD which I never claimed or was tested for. I had then cut my hand at work and normally wouldn’t go to the doctors for something like that, however the only indication that I was bleeding was the fact that I felt myself sticking to stuff. I had little feeling in my arm. I was told to not over think it… further more the cut across my pinky(which connects to the ulna nerve”funny bone”) was said to have no possible relation to numbness(not true if you research pinky laceration) I even said it feels like I smacked my funny bone but other than that I have no real feeling. That kinda went away so I disregarded it, keep in mind I have it drilled into my mind that I am crazy so If I am told to not over think something I try to not indicate I am nuts. After all these educated professionals clearly care, right?… I am finding it hard to feel like we are holding doctors accountable for things, I knew there was something wrong but it was never relieved by medicine. I spent My whole life thinking I am crazy and I should keep my mouth shut unless I want to be put in a padded cell, I fear I am not the only one. The stats on Chiari are a clear indication we don’t hold doctors to a high enough standard. “Chiari is rare, although with a recent uprising of imaging we are finding more patients with this malformation” so it’s not rare… just rarely do Doctors discover it. Now I am fearful that I never even got the chance to know who I am, I have always been different and I feel like the doctors never tried to help. Even now, being told “We found a losing of your cerebellum tonsils, don’t worry you have had that since birth” is not comforting. Then instead of describing that to Me I was told to go to physical therapy and then we can try meds, then if that doesn’t work we can discuss further. I don’t have a job and can’t wake up sooo Physical therapy 2 times a week is rough and I don’t want more meds. At 33 I feel like I am a lazy 110 year old. My hands cramp, I drop things, I get dizzy and can’t see in bright light, stretching doesn’t seem to be the solution at least not at this point. I have other damage to my discs, my hands and feet are either freezing or numb. I just want to know if this is just me.

[specialmom]

This is a really hard question. Have you written in our chiari forum? There is an awesome community leader there that may be in a good position to answer your questions. This sounds really hard on you. I'm sorry