I live in NC. I am looking at 3 Drs. I am considering Gerald A Grant from Durham, NC. ; Dr. Rosner from Hendersonville, Nc and Dr. John Jane Senior from Charlottesville, VA. Anybody have any information or experience with them?
I would start by calling their offices and see if they would be willing to see you. That sounds obvious but, Dr. Grant is a pediatric neurosurgeon and I don't think he sees adults(he may, but past pediatric neurosurgeons at Duke didn't). Dr. Jane Sr is semi-retired and I'm not sure he's seeing new patients. So, of the 3 you mentioned, Dr. Rosner may be the only one taking new patients. I will defer to patients who have seen these MDs concering the actual patient experience. If you want a third in that area John John Jr is at UVA as well and has taken many similar patients in the past.
I consulted with Dr. John Jane Sr. I really didn't feel comfortable with him and went to the Mayfield Chiari Center for a 2nd opinion and feel much more comfortable w/ Mayfield.
Dr. Jane basically said to call him if I wanted surgery that he didn't have an opinion one way or the other. He also said chiari only causes my headaches and none of my numerous other symptoms so I could only expect surgery to help my headaches. I left feeling pretty disillusioned and uncomfortable with the visit.
My herniation is 8-10mm (the CINE I had latest showed 10). It's possible if you had a bigger herniation you'd be taken more seriously with Dr. Jane because he did my friend's surgery (22mm herniation) and she was very pleased with him which is why I asked for a referall in the first place.
Thank you so much for the input. Last year, Megan's herniation was 5mm. We never had any testing done. From what I understand, the size of the herniation doesn't matter, small ones can be very troublesome too. I hear it the herniation is round or larger in circumference it will be like a cork interfering with the fluid flow.. I just found out tonight that my friend used Dr. Rosner. She is a month into recovery .She really recommends him and is so glad she got it done. She said her memory is improving and she is regaining so many things that she lost or didn't even know she was losing. She said she feels better emotionally too and can deal with things better than she used to. So if we get on the military insurance, we will be making a trip to see Dr. Rosner from Hendersonville, NC. I was told that he spends a couple hours with you on your first visit, and will make sure you get all of the proper testing. I have heard so many good things about him. I guess Dr. Jane doesn't understand Chiari. I am not medically trained, and I feel that it would be almost common sense to know that if pressure is being put on various nerves, it affects what is being pushed on. Also, I wonder what is being affected that we don't know about. Also, I got an immediate reply back from Dr. Rosner's office when I asked him different questions. Depending on where you are, you may want to give them a call and see what you think. Keep in touch. Love to know how you are doing.
I wanted to give an update. Megan had her surgery on Dec. 19th 2012. We went with Dr. Rosner and used Park Ridge Health hospital. She is doing wonderful, the hospital experience was better than one could ever ask or hope for. The cardiologist at this hospital was wonderful too.
Update on Megan:
Megan is 2yrs and 3 months post op. She is doing wonderful. She takes no pain meds. There are ups and downs with all of this. The negative effect on her (due to the Chiari and not the surgery) is her memory and reasoning ability. Those two issues were the worst and is slowly improving allong with her stamina. She does have headaches periodically. She has regained her balance, most of her sensory is back, the scoliosis is gone, and she has had no more incidents of her heart stopping on her.
Donna,
That is WONDERFUL news!! I love hearing success stories and seeing them spread! Sometimes in a place like a support group, so many are experiencing the downfalls and negatives. It's great to have positive reviews and outcomes! XOXO
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Thanks so much for sharing Donna! What a wonderful thing and I am sending positive thoughts your way that things continue to improve.
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