DOES ANY ONE HAVE A SUCCESS STORY TO SHARE

Dear Justinlowe,

I am sorry to hear your news, it must be terrible though, are you living in the UK, QE Hospital was voted to be the best neuro in the UK (Birmingham) try to get the doctor to refer you there, otherwise, if you are in the US..try to get information from MAYO clinic - I personally do believe so that your symptom if due to chiari..think about it..you do not know how long the brain being squeeze due to herniation..that itself damaging the nerves around the brain (GOD knows - what else ...) so be firm to your health care professional but pleading you need them to help you.... ITS DEFINATELY CHIARI'S SYMPTOM

 Hi. I feel it has similar symptoms too. It’s just hard for me to understand because I did not have any of these symptoms when I was a teenager, when I first found out I had Chiari 1 malformation. I live in California, US. I had a good doctor that understood that then, that gave me a symptom free and drug free life for 20 years. Now it’s hard to get the doctors to look into it. I have lots of MRIs of that area, to be looked at. Luckily, I get to see a  Neurologists on Friday, I will see what he/she has to says. 

Hi Justin,

Just make sure you be so assertive tell them how suffering you are, and ask them to help you - I would get decompression if I were you giving the chance or if they do not give you suggestion.ask for it.as it is only going to get worse..let us know how you are getting on

 Yes, I know, I will get the surgery if that’s what’s needed. We’ll see. I am hoping it’s just another decompression surgery that I need. That’s causing these symptoms. I don’t know yet until tomorrow, so I will find out and let you and everybody know, what’s going on.  The only thing I have to go on, is that my fourth ventricle is enlarged (which was only found by a neurosurgeon, when I pointed it out to him) giving me a trapped/isolated fourth ventricle. which is a risky surgery because it is so close to the brain stem. And I was told that it did not produce these symptoms, which I found how is false. 

 I just got back from the appointment at the neurologist. It was a joke, he came in wanting me to do exercises for my balance and get surgery for my eyes (double vision). He did not look at my MRIs and he did not look into it. He says it’s a developmental thing, but I had that treated in the 90s. He just wants me to see a Nero-ophthalmologist for my so called double vision.  I need to find somebody that will look in to my symptoms. I really don’t want to go to another state, because I have no way to get there. 

 It says your post has been deleted. So, I can’t see it!