I’m a 22 year old working full time. I was in a car accident may 13, 2016. I was having a lot of back, neck, and head pain so i ended up seeing a doctor who had me do a ct scan. We scheduled a follow up the next week but I had gotten a call later that day asking me to come in as soon as I could. The doctor told me they had an accidental finding that wasn’t caused by the accident so I had an mri done. They informed me that I did have chiari malformation along with a cyst on my brain. I’ve had two more mris since then. I have seen a specialist who I personally don’t believe is listening to me or taking me serious. He keeps telling me I have a concussion and that’s why my head, neck, and back hurt. He says the reason my hands go all numb and tingle through my headaches is because of carple tunnel. My loss of balance and blurry vision he says is due to head injury. One specialist says that the accident brought out the chiari and that’s why my headaches have gotten worse since I found out, but the specialist I deal with now (from referral) is basically saying that I’ve had it all my life and for it to effect me this much this later in life that he thinks it’s not caused by chiari. I want to go somewhere else that specializes in it but I come from a pretty poor family and would never in my life be able to afford going somewhere better let alone the treatment needed. I’ve joined chatrooms trying to just talk to anyone about what’s going on but it’s not the same when they have no idea what it’s like. I’ve read a lot of people’s comments on this site and I’m hoping I can get some sweet feedback that will help me. I was prescribed years ago an emergency anxiety pill that I’ve had stored away but lately I’ve been going through them from all the stress I’ve been dealing with. Like I said I found out I had it shortly after may 13 and I just did my 3rd mri couple weeks ago and I don’t get my results until September 6th when he wants to to an EMG- some sort of nerv testing?
If you want a copy of the written report, then call the MRI center where you went, sign a consent form to get it mailed to you.
I have always had symptoms of Chiari and other related conditions, but after a hard fall landing on my head, fix the symptoms start. Accidents can and do manifest a Chiari.
Believe you me, we are struggle with our health care. You said you work full time, does your company offer health insurance. Copay can be costly. These conditions don’t discrimate race, color, status, etc.
as I have made the statement a few times before, sometimes your not a candidate for surgery. If you are check with your insurance or benefits coordinator for the cost and out of pocket expenses.
Good luck and learning. Keep us informed,
Yeah I have health insurance from my dads and I’m pretty much covered. They’ve covered a lot of my mris and ct scan. I really don’t want to have surgery because I’m scared that it won’t help. I have heard others that it’s not a for sure fix for it. Others have had more problems after surgery too
Like Abby says get the written report from the MRI and go from there. Once you have the report you can do your own research and come back to the chats and some how you will pack with questions and answers for your next visits to your doctor’s.
I was involved in a car accident when I was 3 yrs old where I hit my head on the windshield and then I hit the back I f my head when I was 12 yrs old when I slipped on some ice in the winter. And I didn’t know I had Chiairi until 2 years ago and I am 44 years old now.
I get that Jeremy.
Thank you Tazz and Abby. I’ll call them today and ask for a copy. I’ll post after I know
Update: they didn’t want to mail me my results…
They refuse to send me my results
They gave me my MRI disc that day and mailed me my copy in a few days.
Well I’m 22, but they said the neurologist refuses to for anyone. They don’t want me to google the terms and get scared
I have never heard of a neurologist holding your information from you. I would ask your dad to accumpany you to the MRI facility and ask for a copy of your disc and written report. It is yours.
Well now is kinda pointless. My follow p appointment is this Tuesday so ill get the results in person. They won’t give me my results before my follow up appointment
As frustrating as you’ve found it that does make sense. Far better to have the doc go through it with you face to face and be there to explain and answer your questions than have you consulting with Dr Google and potentially coming up with the wrong answers or worrying about the wrong things. Wishing you an informative and constructive consult for Tuesday. Let us know how you get on.
Jules is right! Don’t get stressed out until you see the doctor face to face. If you still feel uncomfortable with the doctor search for new one many don’t know or understand this.
My follow up appointment was a waste of my time. He told me the basics I already knew, like how I have chiari then began to tell me again what it is. He had a lot of “I don’t know” and “I’m not sure” answers. He even told me I have chiari, symptoms of chiari, but the cause is not chiari. I was told I’d get the disc with results but left empty handed and felt as if I was ripped off. He referred me to another place in MN because he won’t do anything for me
Jeremy, First off good for you for going somewhere else. If you are not completely satisfied with a doctor, then hit the door at a mad run;). Also, glad he agreed to mail you your MRI results(fyi:keep getting copies if all of them from now on) because this is your information and he cannot refuse. My symptoms with my chiari got worse with each child I carried and delivered. Although I was not told I had Chiari until my last child. Where it reared it head even more and also cause a syrinx in my spinal cord. Which in turn caused nerve damage down my right arm that I still have today. Okay, so enough with my background. So first, you and your family should find a doctor that you like. Call your insurance company ask them for a list of the approved doctor in network and if they have any ratings on those doctors. If not then you get to research the doctor. Think about it this way. The doctor you pick is interviewing with you for the pleasure of fixing your BRAIN my man. Let him work for it and show you and your family respect. Write down all your questions before going into your appointment so you don’t forget. Be sure to ask them to write things down for you if you want to look into it later. DO NOT SETTLE FOR SECOND RATE… I hope this helps. We’re here for you.
I realize that many doctors don’t about Chiairi but was this a neurologist or neurosurgeon. The reason I ask is because either way it’s a neurosurgeon that you will need to see. No matter because if surgery is required that the neurologist can’t doing nothing for you.
THANK YOU MamaC! They never mailed me my results, the neurologist refused to. And when I went in for my results in person he had no answers and still walked out without a hard copy of my results. I was referred to a neurologist in MN who actually listened to me. I now have surgery on the 31st of this month. Part of my c1 and c2 vertebrae have to be taken out. When I met with my neurosurgeon he actually answered all my questions without me asking. I left there satisfied that I picked the right guy for my surgery, he’s done it plenty of times he has said. So if anyone goes to Rochester, MN at the mayo clinic, ask for Dr. Atkinson.
Any time Jeremy. It seems you are definitely in the right hands and right direction. Good for you for finding a good doctor. I wish you nothing but the best for your surgery and will be praying for you if that’s okay? Since I have been dealing with all my health issues, God and I have gotten really close. He has a great sense of humor for sure and he thinks I’m one tough lady. Putting me through all the stuff I have been thru. But I make it just as you will because we are warriors. We’re not afraid to fight for what we want. You keep your head up(pun intended lol) and you eyes on the end result of getting better. If you have any questions or just need to chat you know where to find me. I have been thru my neck getting the scalpel three times(1 chiari, 2, for a stimulator for my nerve pain) so I’m amazing at home pt and what to do to not be bord. Lol
Of course MomaC, prayers are always welcome and thank you for that. And I’ll be sure to remember to talk to you when I’m home from work after surgery. I’m not one to really like lying around. I mean heck I’m just 22, should be out enjoying the world not just watch it pass by, but lately I feel like that’s what my days have been consisting of.
Glad you found doctor that your happy with and I am wishing you all the best. I am going to see a neurosurgeon on Wednesday and hope he can help me as much as yours did with you. Best ofluck with your surgery.