Dr Heffez Deff wants me to have chiari surgery.....

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Dr Heffez Deff wants me to have chiari surgery.....

Postby africk22 » Thu Aug 18, 2011 11:28 am

I just got home from the chiari center and dr heffez said showed a dissection of my chiari where my artery n brain is pinched. It's supposed to looke like a full circle n look clear n it didn't at all there was no room! He said that's what was causin all my symtoms n I needed surgery. An I wanted to know how good he was an I'm just nervous. Cuz I'm 8 hours away how will the drive back home b after surgery b?
Rearended n Car wreck 08 back n neck w/Bulging/Herniated discs, Spinal Stenosis&Spondylosis, CM1 6-7mm, Adv.DDD,Demineralizin Vertebraes, Arthritis, Bursitis, Fibromyalgia, Insomnia, Chronic Migraines, n much more!
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Re: Dr Heffez Deff wants me to have chiari surgery.....

Postby dkg56 » Thu Aug 18, 2011 9:52 pm

I saw Dr. Heffez in June. He showed me the same MRI view - also showing the space full of brain where there should be none. But he did not recommend surgery for me since my symptoms aren't all that bad. He said I will know if/when I need surgery when it gets so bad - I agree, there is no way I would have my head cut open now based on my level of symptoms. Anyway, I think he relies on this crowding more than on the amount of herniation as an indication of whether or not your symptoms may be due to chiari. after that the recommendation to operate or not would be based on your current symptoms.
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Re: Dr Heffez Deff wants me to have chiari surgery.....

Postby Moemkate » Sat Aug 20, 2011 2:08 pm

When I had my decompression done in NY we had a ten hour drive home. We have a chevy van which my husband took all the seats out of and put a full sized blow-up matress and lots of pillows in for me. Took a couple of muscle relaxers as we took off and had a very easy ride home. Kay
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Re: Dr Heffez Deff wants me to have chiari surgery.....

Postby africk22 » Sat Aug 20, 2011 11:45 pm

I think it shouldnt rely on your herniation an it should rely on your symptoms an how debilitating it is on your life and thats how he was with me. He did a full physical exam in the office as well. I wasnt talking about the crowding portion in meaning just basically just chiari when any chiari is dissected i really wish i could rem the terms. My dad knows. But you could see it plan as dad blockin off. Im sorry Im not makin much sense. But anyway he was going alot on our physical exam as well with both neuros and my paperwork I sent in with all my numerous symptoms I was having. He was very thorough and answered all questions they were all very nice. I was wanting to hear all experiences of those whose been.
Rearended n Car wreck 08 back n neck w/Bulging/Herniated discs, Spinal Stenosis&Spondylosis, CM1 6-7mm, Adv.DDD,Demineralizin Vertebraes, Arthritis, Bursitis, Fibromyalgia, Insomnia, Chronic Migraines, n much more!
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Re: Dr Heffez Deff wants me to have chiari surgery.....

Postby africk22 » Sat Aug 20, 2011 11:46 pm

I wish I was able to do that for long drives! Man that sounds nice!Would it be better to fly? Or just drive an stop whenever?
Rearended n Car wreck 08 back n neck w/Bulging/Herniated discs, Spinal Stenosis&Spondylosis, CM1 6-7mm, Adv.DDD,Demineralizin Vertebraes, Arthritis, Bursitis, Fibromyalgia, Insomnia, Chronic Migraines, n much more!
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Re: Dr Heffez Deff wants me to have chiari surgery.....

Postby tennesseewalker » Fri Aug 26, 2011 3:54 pm

Can he refer you to a NS closer to home? There are CM specialists all over. My drive home (6 days after surgery) was bad enough at 30 minutes. Or maybe you could stay in a hotel for a week or two after you're discharged from the hospital.

You need to be close to your NS in case of complications. NS's don't want to treat someone who had surgery done by a different NS.

I was diagnosed by my twin's NS 2000 miles away, and used a local NS I was referred to by my PCP here. He did a great job, my trip home was 30 minutes, and the pharmacy was on the way home. And my DH could visit me every day after work. My twin lived 800 miles from her NS and she was there by herself because her DH had to work. She had no visitors; everyone she knew lived 800 miles away. And she had to stay in a hotel after discharge until her NS released her to fly home. Then, six weeks later, she had to fly back up there for her 6-week check-up.

So weigh it all out for yourself and decide accordingly.

Good luck.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Dr Heffez Deff wants me to have chiari surgery.....

Postby africk22 » Fri Sep 02, 2011 2:39 am

They said he cant refer me its my job n insurance job to find somewhere else. But there isnt anywhere els in my network for insurance its either KY, Ohio or Indiana. Only other place we have found a possiblity is Cleveland Clinic an I havent heard nething that great. An They said I would be in hospital 5days if ok an then I stay in hotel till day 8 for him to take out staples n make sure ok then i can b released. So I can either stay at hotel or drive home. But he said if theres complications n cant make it up there than id just be rushed to nearby surgeon. An Visits back arent that bad. But we still arent certain if going with him due to we cant afford it. I donno what were gonna do! :(
Rearended n Car wreck 08 back n neck w/Bulging/Herniated discs, Spinal Stenosis&Spondylosis, CM1 6-7mm, Adv.DDD,Demineralizin Vertebraes, Arthritis, Bursitis, Fibromyalgia, Insomnia, Chronic Migraines, n much more!
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Re: Dr Heffez Deff wants me to have chiari surgery.....

Postby tennesseewalker » Fri Sep 02, 2011 3:24 pm

Call your ins. co. They will help you get to the right place. My NS was fresh out of residency and he did a great job.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Dr Heffez Deff wants me to have chiari surgery.....

Postby africk22 » Sat Sep 10, 2011 7:03 am

they werent any help they told me to find one and they would tell me if they were in network or not! Ive had the worst trouble! lol I think im just goin crazy! An now Ive got medicaid so im truly limited! If I cant afford to keep my other insurance which is 700 a month! :(
Rearended n Car wreck 08 back n neck w/Bulging/Herniated discs, Spinal Stenosis&Spondylosis, CM1 6-7mm, Adv.DDD,Demineralizin Vertebraes, Arthritis, Bursitis, Fibromyalgia, Insomnia, Chronic Migraines, n much more!
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Re: Dr Heffez Deff wants me to have chiari surgery.....

Postby lady 59 » Sat Sep 10, 2011 6:08 pm

When I had tethered cord surgery almost 2 yrs ago the dr. said I would have to stay in a hotel for a week after because I lived 6hours away also. But after the surgery I only stayed in the hospital overnight and then went back on a thurs.(surgery was Monday) he cleared me for the drive home. It was the most pleasant ride I've ever had, did alot of stopping along the way and shifting around in my seat but I made it. So you never really know till you have it done what is going to happen. Best of luck in your decision.
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Re: Dr Heffez Deff wants me to have chiari surgery.....

Postby BstKy » Fri Jan 06, 2012 3:29 am

Hey there, long time no talk...I also sent my all my stuff to Kim w/ Dr. Heffez's office and he wanted me to come to WI for additional testing, however I just had a CINE MRI done @ the Mayfield Chiari Center in Ohio and want to send it to Dr. Heffez to view to see if he can spot something that the other nero's overlooked. I have my CINE disc, can you remember what scan / picture he was able to see it on and what I would be looking for? I am excited to hear that there may be someone out there, that thinks outside the box and just doesn't write people off as being crazy. Are you still seeing the Dr.'s in Louisville? Who did you see there? Was it someone at Norton's? Sounds promising....good luck to you and remember just keep on fighting and finally someone will take us seriously... Peace..
Diagnosed w/ SM no Chiari 4/2011
Syrinx C4-T7 6mm
chronic shoulder and neck pain, numbness in both arms / hands
chronic low back / hip pain
Lumbar Fusion L-3/ L4 -2002
Lumbar Fusion L-4 / L5 - 2007
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