Hey guys. I need some good advice and no better place to go than here. I posted recently that I had a consultation with a neurosurgeon that would not treat me and I was just going to try and wait to find a new doctor but unfortunately I feel like my pain is getting worse in some ways and that maybe I need to go ahead and get some things in order before I am in too much pain. I also feel like my chiari is affecting my speech. Does anyone else feel that they have that problem? I have to pay close attention sometimes to what I am saying just to be able to pronounce the words correctly and it will be words that I say on a regular basis. As far as the doctor goes I live in North Carolina and don't really know who is good in my area. Do you guys have any suggestions??? Anything would help. Thanks in advance
I know NC is a big place, but have you looked into Duke? Theya re doing research there, so they should have a dr or two whose familiar.
Dr. Rosner comes highly recommended.
Dr Rosner is wonderful he picked up an all of my abnormal neuro findings he sent me to see Dr royce Bailey for Dysautonomia/pots also wonderful. The staff at the hosptial are very nice. He is hendersonville.
Hi Shannon,
My NS in Pittsburgh speaks very highly of Dr Rosner. That says a lot. My NS is the Godfather of Modern Neurosurgery. I believe if you have to have surgery you should see the best and Dr. Rosner is one of the best NS's in the US. If I had to see another NS it would be Dr. Rosner or Dr Ray Secola in Pa. or Dr. Kenneth Casey in Detroit. I also know many NS's and work with many. I don't want anyone to think we choose one NS over any other, if you would like additional recommendations please let me know. There are other great NS in NC. Also not every NS is a good fit for every patient for many reasons. I have met one I had such a personality conflict with I wouldn't recommend him to anyone. Please do not feel bad about asking for additional names.
It’s good to meet a N.C. person I live in Waynesville N.C. It’s near Asheville.I have a great Dr. To recommend to you Dr.Rosner in Hendersonville.I just had decommpression 6 months ago with him and so far I’m doing pretty well of coarse I won’t know for a year all the results.He is a pioneer in this field even though he always faces controversy from the mainstream medical communities for me there would have been no one to help me.I was told my chiari was boaderline even Dr.Rosner told me the MRI did not look too bad but he goes on symptoms without judging but believing what the patient tells him.He really believes what we tell him imagine that!!what a surprise that was to me.My journey lasted 27 yrs.without much help except trying all kinds of drugs and that was’nt much help.The NSs could not do anything for me,they go on tests alone and they do not do the same things Dr. Rosner does nor do they listen to patients.Have you had a tilt table test? It is one of the test he does.My chiari was worse than even Dr. Rosner thought he was glad we made a good decision and so was.I have not regretted it,because I have finally been helped.I want to hear more about you friend me if it will be o.k…
Shannon,
I have been doing the same thing with my speech, there are also times I will say something and then be told that is not what I said. I really have to think about words sometimes and many times I pronounce them wrong and try to cover it up by repeating the correct word. I have also have had I guess you would call forgetfulness, many times I will forget to put an ingrediant in a dish I have made for years.
As far as a doc I wish I knew one. Hope things get better for you and you can find a great physician.
I have also been having terrible forgetfulness. I thought maybe it was all of the topamax that my neorologist has me taking now for my headaches. I also have no get up and go anymore. I just want to sleep allday which makes no sense to me. I went from some one who was going to the gym 6-7 days a week, being an amazing single mom of two boys, volunteering all of the time, working, going to school part time, taking care of my own home, yard etc.... to working and feeling like I am skating by by the skin of my teeth on my housework with help now, barely passing some of my schoolwork, not volunteering as much if at all and having help with my kids and having someone else do my yardwork all together. Life has changed dramaticly and I can't help but feel like most of it is meds. I truly don't know how to feel about my chiari bc I have never been treated for it nor have I felt like I have been taken seriously about it. No one knows how to treat me. I have always been very suffiecient and capable but like even this morning I went to raise the window over the sink in the kitchen and that movement alone was so painful for me I was out of breath, never got it completely raised and ended up that i had to shortly thereafter take a break from my cleaning and take a pain pill. My pain at this particular span of my life is in between my shoulder blades. Why???? I couldn't tell you!!! I don't know if this is normal from pressure?!? If this is my bulging discs?!? I just don't have the answers and no one including my orthopedic dr can tell me.
What dose of Topamax are you taking ? It will cause brain fog and severe fatigue, word and memory loss. I took it and Neurontin and threw it away. I couldn't live with the side effects. They actually caused me to be diagnosed with Narcolepsy. It was horrible. After I threw it away my pain wasn't worse without it than with it. This was pre CM surgeries and I was on 3600 mg of Neurontin and 200 mg of Topamax a day and would never recommend it to anyone. I would get to work and have no idea how I got there or sleep for 20 hours at a time when possible. It was a very dark (no pun intended) period over four years when I was trying to get a correct diagnosis. I also have Complicated Migraines where you have stroke symptoms and you can speak but not make sense at all. Are you having headaches when you are having speech problems?
Tracy Z.
I am taking 100mg of topamax at bedtime and 50mg when I wake in the mornings. I also take 50mg of Amitriptyline and 60mg of Cymbalta at bedtime. I feel like I am a zombie most days. I actually do not have the headaches right now but still have the speech problems.
Happy Saturday
I am seeing Dr Asher @carolina neurosurgery and spine in Charlotte.
Very pleased with initial visit, and pre-op stuff. Surgery is 6/11.