Well, how do I make a long story short? Guess that's the question of my life..
My name is Sue, Im 35 yrs old and was recently told I have a slight herniation of my cerebellum and/or crowded cerebellum, or in other words chiari malformation. I prefer to just think of it as simply being too smart. My brain is too big for my head. I always knew this may someday be an issue. ;)
Diagnosis happened like this: Two months ago I experienced a sudden flash of light out of the corner of my left eye and then over the next few weeks began to lose hearing in my left ear which accompanied a headache that eventually wouldn't respond to meds. I chalked it all up to stress and then to a sinus infection. I finally went to ENT to check out the hearing issue and was told everything looked perfect. But I failed the audiology test, the balance test, etc... They sent me for MRI and then over to neurology which is where I was told about the chiari.
In hindsight, I displayed symptoms for years, probably since I was around 25 or 26 (headaches, neck pain, ringing ears, dizziness off/on), but I just learned to deal with them and always just assumed I was stressed out.
However, it's different now. The headache is killing me, the dizziness is driving me batty as it's nonstop, and the hearing loss... omg. I'm already blind in my left (was born that way), now I'm deaf in my left ear. Yeah, I've got my right eye and right ear remaining but I wonder if it's too much for my brain to handle at this point cuz the pain will just NOT STOP. I've been put on topamax and prednisone but have not had any relief and have had 4 injections in my left ear to try to get some hearing back but it's not working. I also just feel SO confused lately. My words are jumbled and I just can't think straight. I feel tongue tied all the time.
I have a MRA tomorrow to make sure there are no clots and then go from there. The neuro dr said I may need to be referred for treatment elsewhere because he's not familiar with chiari, all that much. In researching it..it doesn't appear too many people are. Well. That's not terribly comforting. What do I do, where do I go?
I am really sorry you have been dealing with so much. All the symptoms you have discussed are CM symptoms. It does usually take a while to get a correct diagnosis. The fact that your NL was honest with you and told you he would refer you to someone more experienced in CM issues is a great thing. I would definitely have the MRA & then see the new NL or NS. If you don't feel like they are a good fit, we have members all over the world and will help you with some names of Chiari Specialists in your area. In the mean time if you can stand reading I would learn as much about CM as possible, & write down a list of questions you want to ask your new specialist. Know we will always be here for you. Everyone here is amazing & can help you with any question you have. Please try not to feel overwhelmed.
HI SUE, WELCOME TO THE SITE! YOU'VE COME TO THE RIGHT PLACE. SO SORRY YOU'RE FEELING SO TERRIBLE. YOU'RE NOT ALONE HONEY. I'M 44 AND HAD MY DECOMPRESSION SURGERY BACK IN AUG. 2011. STILL RECOVERING. M SURGERY WAS QUITE EXTENSIVE. GONNA TAKE SOME TIME TO BOUNCE BACK. I'M FRUSTRATED OFTEN BUT KNOW THAT I HAD TO HAVE THE SURGERY. TAKING ONE DAY AT A TIME. UNFORTUNATELY YOU'RE GOING TO FIND OUT ALONG YOUR JOURNEY THAT THEY'RE AREN'T ALOT OF DRS OUT THERE THAT DO UNDERSTAND CHIARI AND IT'S COMPLEXITIES. I'M ACTUALLY HAVING SOME RESPECT FOR YOUR NEURO WANTING YOU TO BE REFERRED SOMEWHERE ELSE. AT LEAST HE ISN'T DISMISSING YOUR CHIARI. YOU NEED TO FIND A NEUROSURGEON THAT SPECIALIZES IN CHIARI IN YOUR AREA. YOU CAN FIND A LIST ON THIS SITE FOR YOUR STATE. DO YOUR RESEARCH AND EDUCATE YOURSELF AS MUCH AS POSSIBLE ON THIS DISORDER. GET COPIES OF ALL YOUR TESTS AND REPORTS AND KEEP THEM HANDY FOR FUTURE DR VISITS. KEEP US POSTED AND GOOD LUCK IN YOUR SEARCH.
Hi not sure where you're from but i have respect for your doctor also. At least he was honest some would try to work just to get paid. I got diagnosed on the 4 of feb.2012, and had the surgery on the 21. I got lucky i got a good neuro surgeon that done a great job. I live in Augusta, Ga and i went to GA health science university formally mcg, i work there also. My surgeon was John Vender. He told me from day one, if i didnt' need the surgery he don't do them. He don't like playing around in people's brains, and spines but if he must he does the surgery! I felt very comfortable from day one talking with him and he gave me all the statistics and what the outcomes could be, he didn't sugar coat anything. Hope this helps but if your not close to Augusta, Ga I'm sorry i don't know anyone else. But yes get all your facts staight and if you don't feel comfortable with the doctor seek out others!
It’s true…there are not many doctors that are experienced with Chiari. I respect your Neuro for admitting he lacks knowledge in Chiari and wanting to refer you to someone that does. If you go to the doctors tab at the top of the home page, you will find a discussion by Abby (one of our moderators) that has a couple of links for lists of patient recommended doctors. I hope this helps and you find an experienced NS soon!
Welcome to the group. We are fairly new as well and everyone on here is very informative. Please research Chiari but don't let yourself get overwhelmed. I am a nurse and I think it's easier for me to understand the terms and statistics, but I don't have to accept them! Prayers, lots of them, is how I move forward everday. You will know when you find the right MD. Please don't hesitate to ask anyone questions on here, that's why we're all here. I'll be praying for you.
Welcome to the site! I've only been here a short time, but I've learned so much and received a lot of comfort from those on here. There are great caring people on this site! Hope you find an experienced doctor soon and you can get some relief.