Chiari Online Support Group

Hello newly Diagnosed

I just wanted to introduce myself. My name is Rachel, and this diagnosis has come by as a completely overwhelming surprise to myself and my family. On October 22nd 2017, my family and I were on our way to our favorite campsite to have one last pontoon boat ride for the year. We were not even a mile away from the site and a truck with a trailer was coming towards us in the opposite lane, on his trailer my husband and I saw something tip over a bit then it tipped back and then it let loose into our lane of traffic… My husband swerved to miss what we thought was some sort of farm machinery. We were traveling around 55 to 60 mph and as we swerved the tires hit gravel and sent us flying 10 or so feet in the air into a ditch, hit a tree (came to a dead stop) and rolled over onto the drivers side. All 4 of our boys, my husband and I plus our 3 month old puppy walked away from It! Although for me this is the start of it all…
I started going to a chiropractor about a week after the accident, the CT scans from the ER gave me the all clear and just said treat for sore muscles… well I started having tingling, numbness and weird like cold sensations on my face and arms… the chiropractor did adjustments of my hips back and neck… the hip is good now so is the back. Neck and the sensations got worse, soon came the headaches… finally she ordered an MRI and it showed the Chiari, it is a 5mm below the foramen megnum. She said she will never again adjust my neck. I have a nerve study on December 8th to make sure none of my nerves are impinged and then I see a neurosurgeon by referral from my orthopedic doctor… I can’t get in to see the neurosurgeon till January 3rd! My orthopedic doctor has yet to give me anything for my pain or headaches… they basically said that since this isn’t a neck issue they can do nothing for me… I don’t know if this is hereditary or not since I have never had any issues like this in my life up until this accident… ( I did get migraines during adolescence) so I am lost, and worried. Each day things are getting worse! Since finding this out and getting the official diagnosis yesterday I have been reading and watching videos, but I am concerned they will do nothing for my pain till I see the neurosurgeon… how do I manage this on my own?! Thanks for reading this and any advice you all have!

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Welcome, Rachel! We’re not only glad that you found us, but amazed, relieved, astonished and grateful that you all survived that horror.

This is a very welcoming group, and I’m sure you will be greeted by some of your fellow Chiarians before long. Now that you’ve introduced yourself, you must have some specific questions for the good folks here. Ask away!

Seenie

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Thank you so much! I am incredibly glad this support group exist! I have learned so much more about Chiari! Thank you again :heart:

Hi. My name is Barbara.and I got Chiari from being in an accident where I was in a vehicle that was hit by a train. My Chiari was an 8mm herniation. I had mechanical traction three times by a physical therapist.brach time I got worse but they would not listen.and made It sound like I was not giving It a chance to help. I was lucky it did not kill me. Can you go to your gp for pain.mrdd or go to a pain doctor. My GP sent me to a phyciatrist who managed my pain medication. So those are a few options. Take a print out from a website that explains the extreme pain that Chiari can cause. I got Chiari 22 yrs ago. I had a decompression done 2yrs after the accident that caused the herniation. That took the pain away. I was in other accidents after that which by caused so some other problems to occur. I hope some of this information is helpful to you. Let me know if I can be of more help feel free to ask any questions that you have and I will do my best to answer the ones that I can.all the best to you Barbara L.

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Hi Barbara, thank you so much for your response! I am so sorry you have been in more than one accident, so incredible scary!! Well, my PCP unfortunately passed me off and really seems to not understand any of this, and my orthopedic doctor said that with the Chiari not being a orthopedic situation there isn’t anything they can do for me and to wait it out till I see the neurosurgeon… Although my Ortho did end up putting me on Gabenpinten ( I think that is how it is spelled…) it is supposed to help with the nerve pain and the headache… umm no, no it does not. It doesn’t even touch It! The doctors around here never want to put anyone on any sort of narcotic pain relievers because of how bad opiate abusers have to come in this area… so the ones who REALLY need it can’t get! I will keep trying and waiting. I hope you are doing well and thank you so much for your advice it is very helpful! :blush::blue_heart: Rachel

Hi,
Sorry, you have this problem. I was decompressed in 2014. The c1 disc is partially removed when you have the op. In my opinion it causes the structure of your neck to worsen. Basically, I have pain all over my body. I’m still walking with balance issues. I can’t sit up for long periods of time. I was in asst living for about 2 1/2 years. My husband was still working but now we are together in our own home. My opinion only, lyrica, gabapentin, opiates, cymbalta didn’t help me. Morphine doesn’t stop the pain either. Some people do okay and others don’t with Chiari operation. I’m just a bad example. I will tell you neurologist are a waste of your money. Go to neurosurgeon with a Chiari background. Some dr. Will say u have fibromyalgia or your 5 mm isn’t big enough to cause you a problem. Join the Chiari Facebook groups. They have a lot of knowledgeable people on them. Not trying to be negative but u will find doctors telling u that you have psychological issues as u have so many problems. Don’t let them pull that on u either. Good luck to you.

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Thank you so much for sharing your opinons and advice! I have been referred to a neurosurgeon, I don’t know yet it If they specialize in this or not… I really hope that they do, if not then I will keep bugging my doctor to get me to the right place!

Hi
Sorry to hear about your discovery. I will not sugar coat it = it is a hard road. My son is 15 years old and has Chiara. We live in South Africa - I have yet to discover a doctor who knows about Chiara. My advice is to gather information and then stop as it can consume you. I found I was reading all the other people’s comments on facebook and just thinking about it all the time. And as the other comments on this site - all neurosurgeon do is operate - they not interested in the psychology part of Chiara - they say "oh no that cannot be a symptom of Chiara - trust me it is. Remember you are born with chiara - it does not develop - it is a malformation - you have had it your whole life - the accident just aggravated it . I also believe it is genetic. My son’s chiara is like a disease - it lays still for a while and then every 2 to 3 years - it flares up. He is in a flare up stage now and getting severe panic attacks as the he has the feeling that his throat is been squeezed. He has had surgery.
Also remember - surgery is not the cure - and does not necessary mean you are healed - it just helps the symptoms but in some cases after 2 to 3 years they come back

Hi, @v11, thank you so much for your input! I am doing my best to not be consumed by this and hope the doctor I am referred to isn’t going to push surgery, that is the last thing I want. I just want to be able to manage my symptoms and live my life again like I have the last 34 years before that accident! I hope your son is feeling better today, he will be in my thoughts!

You are in my thoughts - if you have any questions - ask as many people on the this site are helpful…keep us posted after your January appointment - in the mean time - eat healthy - try to cut out sugar and keep moving as chiara is related to anxiety and depression - tell yourself you are ok - be positive

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Hi there!
Thank you! Before this finding and accident, I worked out everyday and lifted weights. Now it is so difficult to lift any weights… lifting causes my head to hurt more. I also ran every other day and now I am lucky to get a light jog in twice a week… :slightly_frowning_face: I will continue to watch what I eat for sure! I did find a few Facebook pages like you recommended. I have joined at least 2, the people on there have been just as wonderful! I hope you son is having a good day! He and you are still in my thoughts! Have a wonderful day!
:purple_heart: Rachel