I have seen Dr. Dowling at Wash U in St. Louis a couple of times. I am not ready for surgery, but he has done many of these an is such a nice man. And if you don't know, these surgeons are very well respected nation wide. People come from all around the country to Wash U doctors. He is very conservative though. If you are atypical, he may not consider you a candidate. Here is his info.
KC: We don't list doctors, but we do outline how you might go about finding one that somebody else has had good experience with. First off, try entering names of a few large cities that you can reach conveniently, in the search window at the top right of this page. Then follow up with previous posters who name a doctor they've found to be recommended.
I have an Aunt who has suffered from Atypical TN for years until she began seeing Dr. Thorklid Norregaard at the University of Missouri, Columbia (573) ■■■■■■■■.
I'd say, keep looking for help from specialists until you find one who's right for you.
I had minimally invasive MVD last Nov and have been pain free so far. None of the docs I consulted in Colorado would consider anything other than "exploratory brain surgery" because my compression was in Meckle's cave - a very deep part of the brain stem. I found a great doc in California who had done over 1800 of these and uses some cutting edge techniques for quicker recovery. He was amazing and my experience was very good although I certainly had some unexpected and odd side effects from the surgery- details if you want them. The worst part of using him is that he does not participate with any insurance companies and although mine pre-authorized the procedure, they later refused to cover it leaving me with $90,000 in medical bills. While I am very grateful and relieved to have had a (so far!)good outcome for my terrible pain, this has been an enormously stressful situation. I would highly recommend my surgeon for his technical expertise and kind and caring attitude but would also urge you to research the financial end to protect yourself from the devastating effects of enormous medical bills.
I had an eperdermoid tumor/cyst removed in May and NOT a MVD. My surgeon was Dr George Bovis, Advocate Lutheran General, Park Ridge,IL. (Suburban Chicago). There are a lot of excellent medical facilities in Chicago area.
Comment to Jerry Parker: Have you located any specific neurologists or neurosurgeons in the Chicago area that you would recommend to a patient who needs to change doctors?
I was seen by Dr. Douglas Anderson, Head of Neurosurgery at Loyola University Medical Center in Maywood, Illinois (right on the edge of Chicago). He was recommended to me by a friend whose brother was a patient of Dr. Anderson. He, unlike that dentist you were mauled by, is more concerned about his patient's welfare than his checkbook. Loyola is a teaching hospital - you can google it - with an excellent reputation. He actually follows the progress of his patients after surgery and will tell you if you are or are not a surgical candidate. All you have to do is bring a dvd of your latest MRI for him to evaluate. You will also have a through physical/neurologic exam.
I was determined to not be a surgical candidate by him. He informed me that he won't do MVD surgery on Atypicals, although it is recommended on Type I patients. According to the outcomes of previous patients, he said it can work for a while, not work at all or make the pain worse on a permanent basis. I'm so grateful I saw him instead of someone who wants to "line their pockets with money". Be aware that many neurosurgeons are on "retainer" with neurological surgical equipment companies and they get extra money when they use their surgical equipment...much like doctors who are on retainer with pharmaceutical companies for pushing their medications.
Good luck and I hope you are as lucky as I was. The thought of going through a brain surgery and all the possible complications when it won't help me is horrific. There are so many Atypicals in this group who had MVD and the pain has returned and it makes me so angry to think that some doctor out there was either untrained enough on the latest research or more concerned about their bottom line than what the patient really needed.
I'm in Wichita, KS. I had a fantastic surgeon do the MVD in may. I am pain free. Not before 6 years of mis-diagnosis and a gamma knife that only helped for a few months. The surgeon left the practice he was with. I will do a little research and let you know where I find him.
I have been pain free for 4 months and its amazing. Off drugs for 2 months.
The doctors I met that I would recommend: Dr. George Bovis, Advocate Luther General, Park Ridge,IL he was my surgeon and my operation was a success. Dr Rosenblatt, Alexian Brothers, Elk Grove Village,IL,; he gave me an excellent evaluation, but he concurred with Dr Bovis.
I spoke with -2- staff members at Northwestern Memorial, impressed with both of them. Dr Getch & Dr Rosenow. Bovis & Rosenow were on a national board for Trigeminal.
Northwestern Memorial is fantastic facility, they are nationally ranked #12 in Nuerology. They are a must interview in Chicago.
Best of luck to all,
Richard A. "Red" Lawhern said:
Comment to Jerry Parker: Have you located any specific neurologists or neurosurgeons in the Chicago area that you would recommend to a patient who needs to change doctors?