Hello. I am a former member of the Navy so am truly confused by all of this. I fell off of my birds while working on them so I figured that was reasoning behind my degenerative disc disease and my first ns said chances are that was what was causing the syrinx's in the thoracic spinal cord. I had a ACDF of my C5-6/C6-7 Dec 27th and was still having alot of symptoms and his PA would not listen to me about them. So I made apt with the NS that did the surgery and he looked at my MRI and started asking questions about symptoms I may have had growing up. He showed me the MRI and said he wants to do a study on the CSF fluid going around cerebellum and stem and also is making me an apt with a nerologist who he works with.
I have ringing in the ears constantly and sometimes it is almost impossible to even hear. I've had this since I was around 19 when I was still in and have been told that it was probably connected to working on the jets but he said yesterday it's a symptom of chairi. I am utterly confused and upset right now
He told me that i should never have been allowed in the navy yesterday, i have no clue whats next. I thought that the syrinx's were just caused by the disc's
The only reason you were allowed in the Navy is because awareness about the severity of this condition is still growing (Thank God). Don't stress too much about the syringomyelia... with the PROPER surgery it should eventually clear up. You must be super careful not to take any trauma to your spine or you will risk being paralyzed. Katie is correct about one thing...a trauma can make Chiari Malformation very obvious, from which point your journey begins. Trauma is not the only way this can begin... It's true that it has been found to be something that is congenital, but the average age for diagnosis (I believe due to symptoms) is 30 years old.
I'm sorry to say that Katie's case however, is not the best outcome of surgery and is of the minor percentage of people who come out of it still suffering. I love you Katie, but you have to understand that. The majority of people who see neurosurgeons who are specialists in Chiari Malformation and use up-to-date procedures that have been proven to be effective, will come out of surgery with little to no symptoms :) Here is another support group I think you find helpful... HERE
Try not to freak too much. Although friends, family, and doctors my be tough to deal with, these online support groups are family. I am so thankful for them, and the people that keep them so full of love, compassion, and helpful information<3
Oh, and the ringing in the ears can be Chiari related, due to built of pressure in the cranium from CSF directly onto the nerves of your ear (or something like that, what am i a doctor :P ) I have it constantly.
It is called a CINE MRI and it is just like a regular MRI for the patient...A radiologist is actually doing the scanning..it is a tool NS's use to see if there is any CSF flow obstruction , blockage..or in my case...'diminished CSF flow'.
Hi JoJo and welcome to the site! You will find a wealth of information from everyone on this site, as well as, friendship, love and understanding. You're on the Chiari journey and it's a journey filled with twists and turns. We're here for you always. Questions to NL's & NS's alike will either be answered or pushed at the waistside. Most of them are not educated enough on our disorder. Ringing in your ears is a Chiari symptom. You, however, did work on a ship where Jets have more than likely caused some damage. If you think some of your symtomology may be Chiari related, it probably is. the Cine MRI for the CSF flow is good, glad you're having it. That'll def. be good to check your pressure. Take one test and one day at a time honey. I know it's overwhelming right now, it gets better. I had decompression surgery back in Aug. 2011. I am still recovery big time. Some subtle improvement, but I have a journey still ahead of me. As some of our friends have said already, the surgery isn's a cure, it helps to stop the progression of the disorder. For me, my symptoms are still there, but I'm hopeful in time I will improve. Alot of our friends here have seen wonderful results. Keep your chin up and it'll be ok. We're here for you.
Jojo is my dogs name and i think the only reason why I am still sane right now. My name is Christine. You guys atleast are making things more understandable. Thank you so much for everything
Please try & not be upset. Have a MRI and CSF Flow study & start learning all you can about Chiari Malformations. You have come to the right place. Everyone here is wonderful. I was just as confused as you feel when I was diagnosed, but my diagnosis came too late & I was almost a quadripledgic. My Cerebellum had fallen so far in my spine it was blocking all but 2% of CSF getting to my brain & literally pushing my verterbrae out of my spine. My surgery lasted 16 hours and stretched my cranial nerves , so daily I have unimagineable chronic pain. You are asking yourself why I am telling you this, if you shouldn't be upset.......It's because it is much better for you to get the studies done & seek treatment as soon as possible. There is a post on here I think it's called Step by Step....from Michael Salansky....It will show you & give you instructions on how they preform the basic Chiari surgery. You may ask us anything and know you will get the truth & total understanding. You will find many so called specialists that aren't as knowlegable as you are with CM. It happens to us all. Do you have a supportive family or friends? You are going to need them. I am very sorry you have all of this dropped in your lap. You are going to have a lot of changes that come with CM surgery. We will be here for them all. I wish you the best and please stay in touch. We can help you. I promise.
My CM is congenitial. It came from having Spina Bifida and never knowing it. My father was a 5 tour Navy Seal during Vietnam & came in contact with Agent Orange. I was totally healthy growing up , except for a few headaches that were dismissed as hereditary because my mother had migraines. Even when I told them they started from light sensitivity. I was told that was impossible. I played every sport and swam & dove competitively. I was healthy until I was 31 years old. No trauma. Everyone is different. That is very important to remember. 30% of the population has a Chiari Malformation, but only 17% of that 30% ever develope symptoms & need treatment. Also, if you are of Irish decent you will be 30% more likely to have CM or spine issues than any other nationality. I also have had my whole C-Spine rebuilt & live with herniated discs daily and have spine problems. They took out C-5 and it crumbled in the dr's hand. Everyone is different. Bill Zern said:
The only reason you were allowed in the Navy is because awareness about the severity of this condition is still growing (Thank God). Don't stress too much about the syringomyelia... with the PROPER surgery it should eventually clear up. You must be super careful not to take any trauma to your spine or you will risk being paralyzed. Katie is correct about one thing...a trauma can make Chiari Malformation very obvious, from which point your journey begins. Trauma is not the only way this can begin... It's true that it has been found to be something that is congenital, but the average age for diagnosis (I believe due to symptoms) is 30 years old.
I'm sorry to say that Katie's case however, is not the best outcome of surgery and is of the minor percentage of people who come out of it still suffering. I love you Katie, but you have to understand that. The majority of people who see neurosurgeons who are specialists in Chiari Malformation and use up-to-date procedures that have been proven to be effective, will come out of surgery with little to no symptoms :) Here is another support group I think you find helpful... HERE
Try not to freak too much. Although friends, family, and doctors my be tough to deal with, these online support groups are family. I am so thankful for them, and the people that keep them so full of love, compassion, and helpful information<3
Oh, and the ringing in the ears can be Chiari related, due to built of pressure in the cranium from CSF directly onto the nerves of your ear (or something like that, what am i a doctor :P ) I have it constantly.
I didnt even know what to ask the NS about all this yesterday. I was told that everything was connected to my degenerative disc disease. I am trying to research as much as I can right now on this.
Some peole also have syringomyelias but not everyone. They can be in any part of your spine but usually at least start in your T Spine. Your heart rate & blood pressure will increase with pain. People with CM have headaches of all types. Especially migraines and pressure headaches. Mine always start behind my eyes also. I am so sorry you have had so much to deal with in such a short time. Please try and get some sleep. That helps. Remember we are here for you and will try and answer all your questions. If we don't know we will find out. Just keep telling yourself you aren't alone in this....