I posted a couple of weeks ago about the neurologist who diagnosed me saying that it was impossible I was having symptoms from an 8mm chiari malformation. I sought a second option from a neurologist at WVU and after driving 4 hours to see this guy was told the exact same thing.
He says chiari type 1 NEVER has symptoms. He also said that the American Academy of Neurology states that chiari type 1 should NEVER be considered for surgery. I'm not saying I want surgery I just want straight answers on what is causing my issues!!! He also wants me to drive up there again for an EMG even though I've had one already and it was normal. He says he can't trust an outside EMG.
His suggestion is that I get blood work done for thyroid and to rule out autoimmune problems that could cause neuropathy. Seeing as I've seen an endocrinologist, immunologist, orthopedist, rheumatologist, and countless primary care doctors and have had thousands of blood tests done I think I can safely say these aren't my problems. In the meantime he put my diagnoses down as chronic fatigue syndrome.
I'm beyond frustrated. I have now seen two neurologists and have been told chiari isn't my problem. My husband surely thinks I'm the crazy one for insisting it is. I really think I'm just going to give up and live miserably with "chronic fatigue syndrome". I can't handle being dismissed by yet another doctor.
This is outragious. I know I'm just starting on this journey but damn. How can you say that type 1 does not cause symptoms when supposedly your a neuro specialist. I do not understand the idiocy
I agree and aplaude everything that Beeba said. You need to see a Neurosurgeon who knows about and operates on people with Chiari. You need a Cine MRI to show how much Cerebral Spinal Flow you have. You can get 'The Chiari Book' by John Oro on Amazon that explains the symptoms,treatment ect.. What are your symptoms? Don't give up. There are people out there that can help you unfortunately they are hard to find.
i AGREE WITH BEEBA. GO TO UR PCP AND REQUEST FOR A REFFERAL TO SEE AN NS. TAKE UR FILMS AND SEE IF U CAN GET ANOTHER MRI DONE...FOR THE DOC TO SAY TYPE HAS NO SYMPTOMS IS INSANE...MY QUESTION TO HIM WUD OF BEEN WHAT CEREAL BOX U GOT UR DEGREE FROM BCUZ EVERY ARTICLE U READ IT TELLS U THE SYPMPTOMS FOR TYPE 1.MMSMH...I HOPE U FIND UR ANSWERS OUT SOON
Headaches, neck pain, pain in shoulders (especially right), hands and feet going to sleep, random tingling spots all over, burning spots, whooshing sound in my ears, dizzyness, lightheadedness, and extreme fatigue.
Sadly I'm having a hard time getting the insurance to allow me to see a doctor out of state and in state WVU is apparantly the best we have. :( I'm waiting to see if I can get approved to see an NS at UVA, I had to literally cry to get that referal from my last NL and now the insurance doesn't want to ok it. The guy yesterday flat out said no way would he even consider letting me see a NS.
Oh good grief. That is absolutely absurd! I had major symptoms with a 7 mm herniation. My NS did not hesitate to operate saying he goes much more by what his patients tell him! He also said post surgery that it was much worse than the MRI showed. He had to do microscopic lysis of adhesions where I had been blown off by my PCP for over 20 years! I still have scar tissue on my spinal cord. Please keep searching for thr help u need. I had to finally go to.an Urgent Care n stomp my feet n demand a MRI which picked up on it instantly. Please please yell,scream,stomp ure feet or do whatever u have to do to get some medical ‘professional’ somewhere to take u.seriously!
All your symptoms are Chiari symptoms. Women have a double edged sword when it comes to doctors. They treat us like we are hysterical house wives or hormonal or depressed hypercondriacs. I know men are also dismissed when it comes to Chiari but women face extra challenges. No one is going to fight for your health except for you. I wasted too many years I and my family will never get back, suffering in silence. I was called every name in the book and humiliated more times than I can remember. So I gave up until I couldn't hardly get out of bed anymore. I was in so much pain I couldn't think straight. Please don't make the mistakes I did. Someone is out there to help you. This is a great resource that I wish I had found sooner. We are here for you Anglyn said:
My symptoms are:
Headaches, neck pain, pain in shoulders (especially right), hands and feet going to sleep, random tingling spots all over, burning spots, whooshing sound in my ears, dizzyness, lightheadedness, and extreme fatigue.
Sadly I'm having a hard time getting the insurance to allow me to see a doctor out of state and in state WVU is apparantly the best we have. :( I'm waiting to see if I can get approved to see an NS at UVA, I had to literally cry to get that referal from my last NL and now the insurance doesn't want to ok it. The guy yesterday flat out said no way would he even consider letting me see a NS.
I'll keep trying to get in with a neurosurgeon. I told my doctor that I wanted a NS and she sent me to an NL instead. He assured me that if I saw one of WVU's NS that he would tell me the exact same thing but that he wouldn't dream of referring because my symptoms were so clearly not caused by chiari. I'm just furious angry. Especially since everything I read says they are. His answer to that was that he went to school for this which means a lot more than a Google search (eyeroll).
The worst part is that my husband was with me and heard all this idiot said. So now he's torn as to whether to trust me, an accountant, or this neurologist at what is supposed to be the best medical center in the state.
I just keep praying that I can get the ok to see the NS at UVA. If they won't see me or the insurance won't ok it I just don't know what other options I have being stuck in WV.
I too struggle with insurance issues. I have been denied for referrals that are still in the network, U of M which is 45 minutes and told that I can see a NS at Wayne State University - 2 hrs away. My guess is that Wayne State being a teaching hospital is cheaper. The NS is pretty good though. I had wanted to go to the Mayfield Clinic out of state and the insurance board reviewed and denied. My Insurance has no out of state coverage unless approved.
The first NS I saw said that I just need a pain clinic to learn to deal with my problems. The second said he would do surgery but would rather wait until I thought the symptoms become unbearable as I do has sufficient CSF flow, even though it is noticeably slower, it is still getting through.
Good luck with everything ~ I know it can be overwhelming.
Let me reassure you...You ARE NOT crazy! My herniation was 7mm and I had severe symptoms. For me, it wasn't the length of the cerebrall tonsils, it was the width that was completely blocking my CSF flow. There is a list of symptoms on here somewhere, it maight be helpful to show the list, along with our posts to your husband. We all face ignorance at some point, which is hurtful and frustrating. I hope you can gt to an NS soon. I wish you the best!!!
Thanks for the info. Huntington is about 2 hours from me so it's definitely do-able. I called and they only take patients upon referral so now I have to see if my doctor will refer me. I feel like where she sent me to WVU and they said I don't need a surgical consult that she probably won't. As WVU is supposed to be the best in the state I fear she will take that guys word for it. :(
If worse comes to worse and you can't get a referal I would call back and or write them and tell them what you are going through and that you are getting worse with no help and no one believing you.Ask if there is a way around the referal or do they have a nuerologist that they work with that knows something about Chiari. I still had a bad experience when I asked my Nuerosurgeon to refer me but it's worth a shot. If the NS does treat people with Chiari the story would be a familiar one. It's worth a shot. I am praying for you and I wish you luck. Sending you a hug ....Wendy