PLEASE HELP!!! I need a respected Neurosurgeon in Akron area!!! (Cleveland: insurance, neighborhoods)

[fyrfytr]

I am currently looking for a respected and reputable neurosurgeon (possibly just a neurologist) in the Akron area. My sister is mentally disabled and has been having an extreme change in her seizure pattern lately. In addition she is diagnosed with agenisis of the corpus callosum, as well as aicardi, which many doctors, neurologists, and many affiliated with healthcare haven't even the slightest clue of what this is. The very few who do, obviously they are only located up in Cleveland Clinic. Recently in the last two weeks she was transported to emergency because of massive amounts of uncontrolled seizures. First trip they upped her meds and sent her home. A week later back to different hospital, who did CT (discovered 6cm mass on midline of brain) and transported and admitted to another hospital. Unfortunately her current neurologist is incompetent and once he finally saw her he said "I think" it's just a calcified mass, and it "probably" isn't anything to worry about. We insisted he get prior scans and test results to compare them to. Next day he had the nurse relay to us that my sister was being released because he looked at the scans and everything looked normal as well as he rose her medication levels again since the week prior. Yesterday my mom went to go meet with the neurologist to compare scans with her own eyes to set her heart and mind at ease, and beleive that she can trust in this doctor. This dumb idiot that released her never compared scans, doesnt know if the mass was pre- existing and/ or growing, malignant or begnign. Basically he went to school for GOD knows how long to not even have the desire to do his job accurately!!! So I am in search of an exceptional neurosurgeon (as the only advice the neurologist did offer is "you would be better off finding a neurosurgeon to take over case since he would have more education, and probably would understand more" ) to be able to do his job without having some uneducated (as far as neurology goes) family members tell him what and how to do his job accurately. With the diagnosis of Aicardi the longest living documented case was 42 years old... My sister is turning 40 years old in a couple months, and this very much worries me. I need a neurologist or neurosurgeon that is determined to help, and not just continue to up her meds and turn his back. Please if anyone can help, let me know!!!!! PLEASE HELP

[SquareBetterThanAll]

Originally Posted by fyrfytr

I am currently looking for a respected and reputable neurosurgeon (possibly just a neurologist) in the Akron area. My sister is mentally disabled and has been having an extreme change in her seizure pattern lately. In addition she is diagnosed with agenisis of the corpus callosum, as well as aicardi, which many doctors, neurologists, and many affiliated with healthcare haven't even the slightest clue of what this is. The very few who do, obviously they are only located up in Cleveland Clinic. Recently in the last two weeks she was transported to emergency because of massive amounts of uncontrolled seizures. First trip they upped her meds and sent her home. A week later back to different hospital, who did CT (discovered 6cm mass on midline of brain) and transported and admitted to another hospital. Unfortunately her current neurologist is incompetent and once he finally saw her he said "I think" it's just a calcified mass, and it "probably" isn't anything to worry about. We insisted he get prior scans and test results to compare them to. Next day he had the nurse relay to us that my sister was being released because he looked at the scans and everything looked normal as well as he rose her medication levels again since the week prior. Yesterday my mom went to go meet with the neurologist to compare scans with her own eyes to set her heart and mind at ease, and beleive that she can trust in this doctor. This dumb idiot that released her never compared scans, doesnt know if the mass was pre- existing and/ or growing, malignant or begnign. Basically he went to school for GOD knows how long to not even have the desire to do his job accurately!!! So I am in search of an exceptional neurosurgeon (as the only advice the neurologist did offer is "you would be better off finding a neurosurgeon to take over case since he would have more education, and probably would understand more" ) to be able to do his job without having some uneducated (as far as neurology goes) family members tell him what and how to do his job accurately. With the diagnosis of Aicardi the longest living documented case was 42 years old... My sister is turning 40 years old in a couple months, and this very much worries me. I need a neurologist or neurosurgeon that is determined to help, and not just continue to up her meds and turn his back. Please if anyone can help, let me know!!!!! PLEASE HELP

Wow. That's a little more involved than giving reviews of neighborhoods or referrals for mechanics. I would try to hunt down a forum or website on the net of people who have dealt with those issues before and ask for a referral. I think you'll get a better response. Good luck!

[fyrfytr]

I have done all of the above but, I also didn't want to limit my options to only those areas. Thanks for your advice!

[Alaskapat528]

You've mentioned hospitals but didnt specify. I assume you have tried MetroHealth Hospital? Dr. Susan Chester was an excellent Neurologist at Metro but my quess is that she has since retired, but it wouldn't hurt to check.

What about the hospital in Canton; I think it's Aultman Medical Ctr.?

[Alaskapat528]

Also, IMO Cleveland Clinic is great, but only if you are rich, well known, or a dignitary from another Country. I know the medical system well there since I am a Native Clevelander and worked in the health sector.

[fyrfytr]

The hospitals that were recently visited with no success was Akron City, and Akron General. My sister was studied for 10 days at Cleveland Clinic Epilepsy unit and that is when her disorders were diagnosed approximately two years ago. I am hoping to be able to find something close by since I work three jobs and don't really have much time to travel back and forth to Cleveland Clinic. I'm not too sure about Aultman I have never heard anything about a good neurology unit or nuerological surgeon from there, so that is why I'm looking for referrals hopefully from someone who has had experience with a specific one, or maybe has a family member in this field, or maybe a good doctor with a good doctor friend who specializes in this disorder would be able to refer someone. I will check about Dr. Susan Chester, I do greatly appreciate the advice!

[fyrfytr]

Dr. Susan Chester is no longer working for MetroHealth, I beleive she is retired based on any info I could find but, thank you anyways!

[akachinski]

Go to Dr Jose Refacus he is across the street from Akron Childrens Hospital. VERY GOOD DR.

[Mrs. P]

Originally Posted by Alaskapat528

Also, IMO Cleveland Clinic is great, but only if you are rich, well known, or a dignitary from another Country. I know the medical system well there since I am a Native Clevelander and worked in the health sector.

Uh...what? My insurance covered me whether I went to Akron City/aka Summa or Cleveland Clinic. Same coverage.

I assure you I did not qualify as rich, well known and a dignitary from another country..

I wouldn't consider going anywhere else for a serious issue.

[fyrfytr]

Dr. Binghaman from the cleveland clinic was the neurosurgeon who ended up operating on my sister. All went well now we are treading the road to recovery and rehab. Thanks all!!!