I am 54 years old and was diagnosed with Chiari Malformation 1 April 2012. I am waiting for my NS to call me with my MRI results. My question today is, if he does not recommend decompression surgery, what else is there?? I have heard steroids but am concerned since I am diabetic and the effect they will have on my sugar level.
I live n Ohio and went to the Cleveland Clinic, waited 3 mtns to see Dr Luciano for my first NS appointment. My MRI's were on July 20 and hope to hear his recommendation this week.
Any suggestions for the Akron/Cleveland area on a 2nd opinion? I have recently found out about The Mayfield Chiari Center and would like some feedback if any one has any.
My symptoms are headache, cough, sometime hard swallowing, itching, ear ringing, forgetfulness and memory, reading something and seeing seething else than what it says, constant middle back aches, recurring shingle in my left hand
So sorry you're dealing with Chiari and Diabetes. I have Chiari and my son is Diabetic and neither one is fun to deal with never mind dealing with them together. Medication helps deal with some of the side effects. Some doctors prescribe Migraine meds to help with headaches or seizure medication like Topamax and Neurotin to help with pain and headaches. Pain medicine helps if you can get a doctor to prescribe it. Also Cymbalta and Lyrica are prescribed sometimes for muscle pain. Botox is sometimes used for headaches. They do a series of shots around the crown of your head. I'm sure there are other medications but that's all I could think of.
Surgery isn't a cure it's a treatment it's done if the symptoms are serious enough to really effect your life and stop the progression of the damage done by the herniation. Some of us need medication like the ones listed above after we have had surgery also.
There is a great book that talks about how to live with Chiari it's called Conquer Chiari by Rick Labuda. It's packed with great information. Abby recomended it and I have learned alot from it.
How are your symptoms? It really depends on how you are presently managing. Some do fine, others have to go the surgery route. I'm in NY, so I can't comment on Ohio, but maybe someone here can. Good luck!
I'm from Ohio and so far had no luck with getting a proper diagnosis... If I find one I'll let ya know. So far UPMC has been awesome but I'm getting an cineflow MRI prior to seeing them. Once I get that done I'll be seeing them. The Cleveland Clinc has been of no help thus far. They have fought me over and over but finally I have an apt to see Violete Racinos. Only problem is its not till OCT. I have read on here good things about Mayfield.
Yes, it took me from April to July to get into CC, now my follow up is in October. I am in Kent , where are you?
Montie Hardman said:
I'm from Ohio and so far had no luck with getting a proper diagnosis... If I find one I'll let ya know. So far UPMC has been awesome but I'm getting an cineflow MRI prior to seeing them. Once I get that done I'll be seeing them. The Cleveland Clinc has been of no help thus far. They have fought me over and over but finally I have an apt to see Violete Racinos. Only problem is its not till OCT. I have read on here good things about Mayfield.
So sorry you're dealing with Chiari and Diabetes. I have Chiari and my son is Diabetic and neither one is fun to deal with never mind dealing with them together. Medication helps deal with some of the side effects. Some doctors prescribe Migraine meds to help with headaches or seizure medication like Topamax and Neurotin to help with pain and headaches. Pain medicine helps if you can get a doctor to prescribe it. Also Cymbalta and Lyrica are prescribed sometimes for muscle pain. Botox is sometimes used for headaches. They do a series of shots around the crown of your head. I'm sure there are other medications but that's all I could think of.
Surgery isn't a cure it's a treatment it's done if the symptoms are serious enough to really effect your life and stop the progression of the damage done by the herniation. Some of us need medication like the ones listed above after we have had surgery also.
There is a great book that talks about how to live with Chiari it's called Conquer Chiari by Rick Labuda. It's packed with great information. Abby recomended it and I have learned alot from it.
I got my recommendation from the Cleveland Clinic, I am to go for physical therapy for my hands, to help strengthen them and pain management for my headaches, then go back in October for a follow up. Hmmm, not allot of answers....
I have contacted the Mayfield Clinic in Cincinnati for a 2nd opinion and will be sending my MRI results to them this week.