Because it is so hard to find a good doctor who will really listen to you these days, I would like for everyone who has a good doctor you can highly recommend (as well as letting us know those doctors to really stay away from) to share with us here their name, title (neurosurgeon, etc.), clinic if applicable, town & state, & a very brief description. If they are one of the ones to steer away from, be sure to note that as well. We will all appreciate knowing where to go (and not go) when we need to. Thanks!!!
Kristina
Gabriel's Life » General
Doctor Recommendations - Everyone please read!
(28 posts)
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Posted 1 year ago #
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I love our son's neurosurgeon!!!
Dr. Adelson, neurosurgeon, Children's Hospital, Pittsburgh,Pa, USA
I trust, respect his opinion, promptly answers questions/referrals, he seems to appreciate organized questions/medical information, clearly answers questions, also has wonderful staff. Our experience: excise poserior fossa cyst, later programmable VP shunt. All unexpected with our 4 months old.Posted 1 year ago # -
I had problems with a faulty shunt that Dr. Fuch's at Duke University put in. It took me 14 months to find a doctor that would test the shunt all he did was reprogram and tell me I was going to have to learn to live with my body termors,speech impairment,vision lose, falling and seizures. None of which I had before I saw him. Read my story to understand a bit more or go to myspace.com/monicad1974
My doctor that finally took on my challenge and found the shunt was faulty is Dr. McLanahan in Charlotte,NC...He told me somethings may never get better but he keeps trying to help. He also encourages me to research and listens to my sugestions. He does alot of research in Germany where there shunt reasearch is progressing more than here and he perfers some of there systems too. Every shunt he takes out he sends back to be researchs to see how it could have worked better and why it failed if this has happened.
Posted 1 year ago # -
I am still having problems trying to find the right doctor for me. The doctor I went to as a child and teenager of course has retired. I had one I liked when i was in my 20's and 30's but then he moved away. I am now 46 and would love to find a new doctor in the Richmond or Norfolk VA area. All suggestions are welcome--thanks!!
Posted 1 year ago # -
I've had a few too many bad experiences with doctors. Most in which I can't recall their names. But here are those I recommend staying away from.
DR. TAYLOR
(NEUROSURGEON TEAM RESIDENT *AT THAT TIME* @ SICK CHILDREN'S HOSPITAL, TORONTO, ON)
HE WAS THE DOCTOR THAT DID THE REVISION THAT LEAD TO MY LIFE CHANGING FOREVER. I DEVELOPED EPILEPSY AND VISION PROBLEMS FROM THE SURGERY AND HIS FAULTS.DR. DRAKE
(NEUROSURGEON HEAD *AT THE TIME* @ SICK CHILDRENS HOSPITAL, TORONTO, ON)
HE WAS A DOCTOR I'D RECOMMEND PRIOR TO DR. TAYLOR'S SURGERY. BEING THE HEAD OF NEUROSURGERY, HE PROTECTED TAYLOR AND HIS WORK THE WHOLE REMAINDER OF MY BEING THEIR PATIENT. I KNOW HE CARED ABOUT ME A LOT, BUT NOT ENOUGH TO HAVE A SECOND LOOK AFTER HIS RESIDENT.OTHER STAFF
A LOT OF THE THERAPISTS, WHOM I SAW DURING MY STRUGGLE WITH THESE TWO DOCTORS, IS ALSO ON MY LIST OF HEALTH PROFESSIONALS TO AVOID. # 1 BEING A LADY NAMED HEATHER.
ALONG WITH ER STAFF AT SICK CHILDREN'S HOSPITAL, AND SUNNYBROOK. SUNNYBROOK HAS THE LEAST BED SIDE MANNERS I'VE EVER HAD. THEY DISGUSTED ME, AND I WAS QUICK TO FIND OTHER OPTIONS.
RECOMMENDATIONS:
A RESIDENT AT THE TIME, @ SICK CHILDRENS HOSPITAL. WHO'S NICK NAME IS "MONY" I WOULD HIGHLY RECOMMEND. HE KNEW SOMETHING WAS WRONG THE WHOLE TIME. HE HELPED ME FEEL LIKE AT LEAST SOMEONE IS HEARING MY CRIES FOR HELP. HE WOULD CALL, AND DO CHECK UPS. JUST TO MAKE SURE I WAS SEEN.
THE TOP RECOMMENDATIONS I COULD MAKE, IS TORONTO WESTERN HOSPITAL. THEY ARE THE KINDEST, MOST KNOWLEDGABLE PEOPLE I'VE EVER COME ACROSS. THE NURSES IN THE ER ARE GREAT, VERY GENTLE, AND OFFER GREAT HUGS WHEN I'M SCREAMING IN PAIN. THEY SEE ME PROMPTLY, AND ARE GREAT. ALSO, THE DOCTORS AT THE FAMILY CLINIC ARE AWESOME. THE DOCTORS ARE ALWAYS AROUND, AND VERY HELPFUL. AND THEY ALL CARE ABOUT THEIR PATIENTS A LOT. IF I GO INTO AN APPOINTMENT AND I DON'T FEEL GOOD. THEY'LL GIVE ME A ROOM TO NAP, AND HAVE A DOCTOR SEE ME PROMPTLY.
MY RECOMMENDATIONS ARE DR. LEMIUEX, DR. DELCAMPO, AND DR. GENTILLIE. (I MIGHT HAVE SPELT THE LAST ONE WRONG)
Posted 1 year ago # -
We live in northern NJ and need to find a new neurosurgeon. I suspect we're dealing with a faulty shunt, and our present dr. doesn't really want to hear about it. I don't even know where to start looking. Any suggestions?
Posted 1 year ago # -
i live in north jersey and i went to see a dr in philly at temple universitay he was really nice a nd then suggested cause of my age not to do the suregery instead put me on meds but me nero dr is dr gupta of milford pa take a look into him
Posted 1 year ago # -
Nikkismom, make sure you are looking on the hydroassoc.org site first. I think the nsg are the second link. I went in circles for several years not knowing how to find a nsg that knew about hydro. I drive 3 hours but alot of nsg don't want to be bothered with hydro patients because we do require more time and surgeries.
Posted 1 year ago # -
I now go to Baptist Medical Center and Dr. Cutour is a life saver. He did my shunt replacement a little over a month ago when my shunt broke back in October. I had some symptoms immediatelly but it took a while for them all to show up. My dr. in Roanoke VA who was actually my ns would not do the surgery even after Baptist said I needed the surgery. She works at Dr. Simon's office. he is on the hydrocephalus website for being a good ns in Roanoke Va. I don't know about him but Dr. Apfel at his office doesn't know anything :(
Posted 1 year ago # -
Dr. Ronald Young (Neurosurgeon-children/adults)
Indianapolis Neurosurgical Group
http://www.ingmdgroup.com/young_md.htmDr. Young is AWESOME!!! I met with him before my daughter was born and then he over saw her care once she was born. He is great with her. I have no complaints and never had. He also has a PA, Kara Baumann, that is AWESOME as well. We love both of them for all they do for our girl. If you need a doctor in the Indy area I would definitely look him up.
Posted 1 year ago # -
Dr. David Frim- U. of Chicago Children's Hospital
Posted 1 year ago # -
Dr. Smyth @ St. Louis Children's and the entire Neurology Group, Neurosurgery Group and Techs there are wonderful. There's been some tough times, but they seem to have answers with results, for us anyway.
Posted 1 year ago # -
i personally have Dr. Grant @ duke childrens in Durham NC. So far no complaints although i am beginning to question Casey's progress
Posted 1 year ago # -
Dr. Smyth and Dr. Leonard are wonderful at St. Louis Children's Hospital. Do not go to Springfield, IL for hydrocephelus. Dr. McIlhaney should have his license revoked!
Posted 11 months ago # -
In the Indianapolis, Indiana area, I would recommended NOT seeing Dr. David Steiman on N. Shadeland Ave.--he told me I had the worst case of hydrocephalus he had ever seen and "he wouldn't touch me with a 10-foot pole."
However, Dr. Michael Turner, 1801 N. Senate in Indianapolis, did do surgery on me--VP shunt 12/1993. He was wonderful and I have had that very same shunt now for 15 years.
I now live in the Atlanta, GA. area and have had one appointment with Dr. James Robinson, 2001 Peachtree Rd. NE, Atlanta. This was just to establish a relationship with a neurosurgeon, should a need arise, after moving to the area. He was highly recommended to me by a friend who is a radiologist who received nothing but good reviews from his colleagues about Dr. Robinson. I liked him very much and felt comfortable with his knowledge of my particular case after reviewing all the information I provided him.
Hope this information may be helpful to you.
Posted 11 months ago # -
Hello, I have had great and not so great experience with many neurosugeons. However I feel it is imperible to make your own decisions on with each neuro yourself, as that there may just be a miscommunication or a difference in personality to each individuals care. My daughter has had many shunt revisions, and we have been to 4 states because of moving and finding the right neuro for her. Our favorite is Dr. Harold Rekate. He is part of the Hydrocephalus associations medical board.
Now my concern for bad mouthing other Dr's is this not everyone will experience the same response to each individual case. My daughter and I just experienced an individual bad mouthing one of the neuro's that took excelent care of her and we found it to be very hurtful and infuriating since this surgeon was so wonderful to us. References I believe are a great source of help, but sometimes that surgeon may not be for you so lets all be careful in our comments.
Posted 11 months ago # -
Per my previous post, My daughter and I have been to neurosugeons in 4 states I can give great references to any one interested in Arizona, Utah, Illinois, and Iowa. I found through the years each neurosurgeon has a specialty in which they are most knowledgeable in and if your case is something they are not so experienced in then they may not be as apt to dive into your particular case. This is where we as parents and patients need to be pro-active and seek second opinions. You are not obligated to recieve only one surgeons opinion. And remember to never give up. I will be more than willing to refer anyone to the neuro's my daughter has seen and give any #'s I may have to help. Good Luck to all and God Bless
Posted 11 months ago # -
My husband and I have had excellent experience with a neurologist on the Hydro Association's board - Dr. Michael Williams - formerly at Johns Hopkins, now at Sinai Hospital in Baltimore, MD. If he feels you need surgery, he'll steer you to the best surgeon.
Posted 11 months ago # -
Definitely stay away from Dr. John McGregor at Ohio University Medical Center in Columbus, Ohio. He started off being an o.k. neurosurgeon, but after my first revision in January of 2000 he has been a nightmare to deal with. First he never told us the shunt could stop working in the first place. Then everytime except the time it became disconnected and you could see it in the X - Ray he told me I was fine. I would keep persisting and he would finally do a shuntagram and then tell us I was right and fix it. I had 3 revisions back to back and finally they said it was my stomach not absorbing the fluid properly and put in a VJ shunt which let me tell you is the worst pain ever, and one revision on that one all in less than 6 months. Everytime I have trouble the last ew years , he ignores me or tells me I'm wrong like he did with all of thoose revisions and the worst part is I've tried to go to other doctors and they will not take me because they say rhat he is the best in the area and I have to stay with him because he started my treatment. We've been so desperate we have even thought of moving to get away from him, but he sees patients in Kentucky, Michigan, Pennsylvania,West Virginia and Indiana and they say I have to be farther away than that. If anyone has any ideas or the name of someone who may be willing to take me as a patient I would appreciate it. I know there's something wrong with it and I just feel stuck thanks.
~ Heather ~Posted 10 months ago # -
oops that's Ohio State University Medical Center. Sorry typo.
Posted 10 months ago # -
I do agree with the earlier post about a lot of personal chemistry that is involved with finding a neursurgeon. Everyone has different comfort levels and sometimes personalities just don't gel. So even though we love someone, he may not necessarily be the best for you. That said, here is some information about our neursurgeon and why we are happy with him (this is after meeting with two other neurosurgeons in Ohio).
We see a wonderful pediatric neurosurgeon at Cincinnati Children's Hospital named Kerry Crone. He always takes the time to talk to my daughter first and then us. He explains things in great detail and has a wonderful staff working for him too.
We live in Columbus Ohio and are willing to travel two hours to see him. The staff is very helpful in scheduling CT's and doctor visits in the same day so that we are not driving back and forth or staying overnight.
Posted 10 months ago # -
We took our daughter to see Dr. Jay Storm at Children's Hospital of Philadelphia (CHOP). I have to say that not only did he diagnose and perform the shunt procedure exceptionally well, but the entire hospital experience was one that we felt truly blessed to have. CHOP is a top notch facility with top notch care. I'd recommend it to anyone for any issue.
Posted 9 months ago # -
A while back, I highly recommended Dr. Adelson from Children's Hospital of Pittsburgh. He has relocated to a Children's Hospital in Arizona.
Posted 9 months ago # -
Dr Philip Aldana and Dr Hector James at Wolfson's Childrens Hospital in Jacksonville, FL
Posted 9 months ago # -
For adults with hydrocephalus, I would recommend Dr. Wang (Paul is the first name I believe). However, I have not been able to locate him for several years. He had moved from Baltimore, Maryland to Mississippi and then Florida if my information is correct, but I am not certain. It worries me a bit that I have not been able to reach him. If anyone has current information on him, I would appreciate it if you would let me know.
Posted 9 months ago # -
For adults with hydrocephalus, Dr Marvin Bergsneider
at UCLA in Los Angeles, CAPosted 9 months ago # -
I highly recommend Dr. Henegar in Charlotte, NC. He has saved my life on several occasions and he is very good with the ETV procedure if you are a candidate for the procedure.
Posted 9 months ago # -
We have had bad experiences at TC Thompson Childrens Hospital in Chattanooga, TN with Dr. Boehm, who placed a programmable shunt in our daughter after birth, and it failed soon after. He promised it was working, however her condition was worsening by the minute. Had her transferred to Egelston Childrens Hospital in Atlanta, GA, where Dr. Wrubel, pediatric nuerosurgeon saved her life! Her shunt had not been working for a while. Since he has done two revisions, he is an awesome doctor. Very empathetic, and understanding. Listens to parents, as all doctors should, because we spend more time and know more about our children than anyone!
Posted 8 months ago #
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