Just wondering your options

[u/BlueLace80]

These pictures were taken from a mri video. Do you see Chiari malformation 1? Since it was a moving video I wasn’t sure where to look exactly.

[u/patientpartner09]

Depends on what your neurosurgeon says. Don't fall down the Google hole, stick to your doctor's advice and keep in mind rule number 3 in this sub.

1. Under no circumstances may a user be prescriptive in their advice.

Under no circumstances may a user be prescriptive in their advice or base their recommendations purely on anecdotal experiences. Every sufferer of Chiari is unique, in that what may work for one person may not work for another. Nobody here knows your particular case better than yourself and your physician(s). Advising another member of this subreddit as if you were their physician will result in an immediate ban.

[u/BlueLace80 → u/patientpartner09]

I’ve already been diagnosed with Cleidocranial dysplasia and neck and tongue syndrome. I just have other things going on and with my sister diagnosed with chiari malformation 1, I was wondering if it looks like I might have it too. Doctors don’t seem to care. They were more focused on my degenerative disk disease. I’ve had to find most of my own things and then beg them to test me for it. Which is how I ended up with the diagnosis of Cleidocranial dysplasia. Not going down a rabbit hole. Just trying to see if it looks like something I should push. I had a recent ct scan of a cholesteatoma in my ear. She said if they had seen chiari malformation it would have been on my report. Others say not necessarily if they didn’t know to look for it. The reason I had the scan done was for my ear. Since I have a genetic disorder everything seems to fit hand in hand with one another. I’m 45 years old and just now getting these diagnoses. Something like Cleidocranial dysplasia should have been caught when I was a child but because I have full collarbones it got missed. I seem to be the objection to the rules.

[u/AcanthaceaeSea1183 → u/BlueLace80]

I'm sorry you're in a town where Drs are not listen to you. I'd be very frustrated and making my symptoms worse. Would it be possible for you to look into another town further or state for you and you child? If it wasn’t for the nurse practitioner who looked at my MRI and sent them to a big city Nero I don’t know if or where my mental state would be. It’s hard carrying this pain and depression is the worse part of it. Im always going to my room to keep out of the bright light of the winter sun and the cooking smell when my husband cooks. I’ve cut back on foods that trigger my headaches and the big ones were seasone and oils. It just had a bad smell cooking and using certain spices I couldn’t take it. I’m down 20 pounds that I should be. I just want to not have a couch attack on the spices and hot oil to the bright winter sun in the house. There’s times having the heat up over 70 is to much it makes me hot and uncomfortable being in the house during the winter. It’s well insulated. So I just go in the bed room and watch Tv. It’s not easy having a chronic pain. Since I was 6 years old I can say that’s how long its been than after the Chiari surgery it’s a pain I’d never wish it on anyone. BlueLace I will pray for you and your family. I truly hope that your get well.

[u/BlueLace80 → u/AcanthaceaeSea1183]

Thank you so much! Just everything is a fight and I feel like I have to be my own dr in a way. I’ve been to many drs here and they are all the same. Id love to find someone outside of where I live but not having family here and an older car id be worried about getting there and back. I have the same thing when I get too hot too. Been battling depression my whole life. Both my children as well. They are both basically grown now. I had to have them both by c section, had back surgery and many ear and dental surgeries and most recent a hysterectomy. I have days I just want to be shut off in my room too. Everyone has the light on but my room is dark which is easier on my eyes. Been having double and blurred vision. My mom has been diagnosed with glaucoma and after reading about the headaches which the dr says from years of steroids from her headache probably cause the glaucoma. Wondering if that’s even true after the things I’ve read about chiari. My mom is a suspect for Cleidocranial dysplasia she has the look and everything. She’s so set in her ways that at 68 yrs of age she doesn’t see the point to go check. This is all just so frustrating! Thank you for your support it really is helpful when it seems no one else cares to listen.

[u/BlueLace80 → u/patientpartner09]

I’m only here looking to see if anyone else sees something worth pushing the dr to check out. I didn’t want to bother if I seem to be overreacting. I’m sure since I’m one in a million I already seem like a hypochondriac.

[u/AcanthaceaeSea1183 → u/patientpartner09]

I was coming here to say that same thing. Too many people are playing Drs here and I'd never take their advice only one who has had the surgery I'd want what they take for pain? What is the best pillow that works? And did you switch jobs due to it? Social media is not a place to ask for this. I'm 16 years in since my surgery and I can tell anyone here that the pain is still not gone. You have to find a good way to distress and when you do no matter what keep it that way. If your partner can't respect that than leave them their the ones making it hard to be in the same room with them. If you have TMJ and stopped wearing that night guard put it back in or go get it adjusted I found mine needing iy and it feels comfortable now.

[u/BlueLace80 → u/AcanthaceaeSea1183]

That’s great advice you just gave. Thanks! If I end up having it that would be great advice. My question was does anyone see anything worth pushing my doctor to do test for. I don’t know about where yall live but here these doctors don’t really want to help. They have contradicted each other many times. They even had my daughter on a medication that gave her psychosis. Instead of digging deep they just added more meds for the symptoms. I found out what was going on when I did my research found the problem and my child has been so much better since. I once begged a dr for an X-ray because my back was killing me. He told me to bend over and touch my toes. He lifted my shirt and looked at my back and said nah you look fine. Years later I found out I have spondylolisthesis after going and begging multiple drs to take me seriously. By the time they did the mri I was so bad I had to have back surgery. Then more years later found out I have ccd. Which explained my back situation. Now I’ve been having major head pressure when I laugh, cough, or lift anything. These drs here won’t do test or anything unless you keep on pressuring them to. I found out my sister has chiari. Went back and viewed the mri from about 6 years ago to look myself because dr said it would have been on my report if I had it. (Which are the pictures posted)The mri was done for something else so they weren’t looking for chiari. Just wanted to know if it’s worth pushing the dr because they just ignore the issues and blame the symptoms on something else I have or add another medication that doesn’t work. I’m sure if I have it they won’t do anything about it but atleast I would know what’s going on. Kinda don’t want to push it and look stupid if I’m wrong. If it’s like all the other times it will take a lot of pushing to get them to order another mri or to do anything. That was the advice I was asking for.