# Fro Ohio.......Other options besides surgery? **URL:** \ **Category:** General\ **Created:** [July 30, 2012, 11:26pm UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839 "2012-07-30T23:26:14Z")\ **Posts on this page:** 11\ **Page:** 1
**Author:** ![gama4xs](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/gama4xs/32/1052_2.png) [@gama4xs](https://forum.chiarisupport.org/u/gama4xs)\ **Post date:** [July 30, 2012, 11:26pm UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839/1 "2012-07-30T23:26:14Z")
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. Thanks, Bev ---
**Author:** ![gama4xs](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/gama4xs/32/1052_2.png) [@gama4xs](https://forum.chiarisupport.org/u/gama4xs)\ **Post date:** [July 31, 2012, 1:40am UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839/2 "2012-07-31T01:40:58Z")
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 ---
**Author:** ![wendy1](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/wendy1/32/749_2.png) [@wendy1](https://forum.chiarisupport.org/u/wendy1)\ **Post date:** [July 31, 2012, 1:41am UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839/3 "2012-07-31T01:41:59Z")
Bev, 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. Good luck and let us know how you make out. Wendy ---
**Author:** ![gama4xs](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/gama4xs/32/1052_2.png) [@gama4xs](https://forum.chiarisupport.org/u/gama4xs)\ **Post date:** [July 31, 2012, 1:43am UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839/4 "2012-07-31T01:43:26Z")
Thank you Emmaline Emmaline said: > Hi Bev, > > 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! ---
**Author:** ![Montie\_H](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/montie_h/32/1063_2.png) [@Montie\_H](https://forum.chiarisupport.org/u/Montie_H)\ **Post date:** [July 31, 2012, 1:43am UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839/5 "2012-07-31T01:43:41Z")
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. ---
**Author:** ![gama4xs](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/gama4xs/32/1052_2.png) [@gama4xs](https://forum.chiarisupport.org/u/gama4xs)\ **Post date:** [July 31, 2012, 2:44am UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839/6 "2012-07-31T02:44:06Z")
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. ---
**Author:** ![gama4xs](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/gama4xs/32/1052_2.png) [@gama4xs](https://forum.chiarisupport.org/u/gama4xs)\ **Post date:** [July 31, 2012, 2:49am UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839/7 "2012-07-31T02:49:35Z")
Thank you Wendy!! I will look into the book. wendyanne said: > Bev, > > 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. > > Good luck and let us know how you make out. > > Wendy ---
**Author:** ![Montie\_H](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/montie_h/32/1063_2.png) [@Montie\_H](https://forum.chiarisupport.org/u/Montie_H)\ **Post date:** [August 1, 2012, 3:54am UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839/8 "2012-08-01T03:54:10Z")
No way... I'm in Kent as well. I'm currently closing on a house in Munroe Falls but have lived in Kent most of my life! ---
**Author:** ![Montie\_H](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/montie_h/32/1063_2.png) [@Montie\_H](https://forum.chiarisupport.org/u/Montie_H)\ **Post date:** [August 1, 2012, 1:45pm UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839/9 "2012-08-01T13:45:40Z")
Thanks Emmaline! Yes it is a small world. ---
**Author:** ![gama4xs](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/gama4xs/32/1052_2.png) [@gama4xs](https://forum.chiarisupport.org/u/gama4xs)\ **Post date:** [August 12, 2012, 2:49pm UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839/10 "2012-08-12T14:49:06Z")
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. ---
**Author:** ![Montie\_H](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.chiarisupport.org/montie_h/32/1063_2.png) [@Montie\_H](https://forum.chiarisupport.org/u/Montie_H)\ **Post date:** [August 13, 2012, 1:40am UTC](https://forum.chiarisupport.org/t/fro-ohio-other-options-besides-surgery/1839/11 "2012-08-13T01:40:55Z")
UPMC might be worth another phone call. I've been talking with Dr. Gardners office. He's a neuro surgeon.