This thread is more of a system to HELP eachother if we have to move (or trade in because of changes in insurance...etc.)

Me. I have a wonderful neurosurgeon who I will reccomend to anyone without hesitation.

His name is Dr. Roman Filipowicz and he works in Indiana (roughly the northern half of the state). He has a great personality and treats his patients with compassion and understanding. I have never seen him in a bad mood. If you need to see one in an emergency, I HIGHLY reccomend him.

Good idea! I live in the UK and I know there's not many of us but anyhow! My current surgeon, Laurence Watkins, is definately the best I've had. He's understanding, doesn't patronise, LISTENS and works with your symptoms rather than going by the textbook. He doesn't fob you off if the answer hasn't been found yet...he wants to resolve things for you, not give up. He also has all the newest gadgets including the NASA infra-red hand-held scanner which can give an indication of blockage/shunt function without x-rays or invasive procedures and the new gravitational shunt which I've just had fitted. He's very jolly and fun to boot. He works from the National Hospital of Neurology in London and I'd recommend him to anyone.

Sounds like you two have some awesome Docs. I wish I was in UK. I wouldn't mind trying out that infrared...

Well, I've been seeing my current neuro in Milwaukee at Froedtert. He's a professor of neurosurgery at Medical College of Wisconsin. I've seen him since my pediatric neuro retired in... 2001 (? -- Hailiesmom, help me on that, would you? Hailie's 1st neuro was Dr. Dunn) he was a GREAT doctor. Fun & easy to talk to. Had his own private practice downtown Milwaukee. Often we talked about (as I got older) the possibility if I could go shuntless or if there was a pill developed to help hydro could I try it...this was before ETV and everything...

In the last year, I found out I CAN NOT go shuntless unless I wanna be falling over myself after 24 hours...my current neuro Dr. Wade Mueller put me through a bunch of tests..and I had my 1st revision in 23 yrs this past August. At 1st I didn't trust Dr. M, but after all this, I'm really glad he waited until he was sure I needed a new shunt. Thats' the only thing about going from your ped neuro to an "adult" neuro...probably general neurosurgeon would be a better word, I guess...he DOES see kids for epilepsy, tumors & stuff, but...anyway...the general/adult neurosurgeon isn't going to really know your case if there's something going on right off the bat like I believe was my case all this time....

I don't know how I got so lucky to get to see mine because he doesn't normally accept chilren.(I was 13) What can I say, he's great!

This is a great idea.

First the good we've seen: Dr. Ann Ritter (our favorite) who is currently only working at Dupont hospial something-or-other in Wilmington, DE for one week per month though.

So far we love Dr. Myseros at Children's National Medical Center as well, though he has not performed any of Becca's surgeries - we're new here and hopefully she will not be needing any!

The Bad: This comes from the mouth of a doctor, though I do not have any personal experience with him: Dr. Magram of Inova-Fairfax is a kind, great man - but is a BUTCHER. Supposedly he sticks shunt peices in very odd places that can be dangerous to nerves. etc (like FACE!) - and leaves some awful scars.

I think I would rather have a jerk for a NS that does things well and neat, than a nice butcher - how about you? Our original referral was to him from our insurance . .. and I QUICKLY got that changed.

Peace,
Kathleen

We have been so happy with our ns. He is Dr. John Treves at Midwest Neurosurgery. We met him before Megs was born and he has never made a decision I have felt uncomfortable with or like I wasn't a part of. He has called us when he isn't on call to check on us, called us on his way home to answer questions after being in surgery all day, hugged me when I was a devastated mommy, remembered our names every visit, and talks to Jack too. The office staff there (esp. Dr. T's scheduling clerk) is excellent too. Sara (the sch. clerk) remembered my name the first time we went there! She is great. There have been 2 other ns's that have taken care of Megs when Treves was out of town. Dr. Puccioni was also excellent and is in the same office as Treves. I don't remember the other guy's name cause he was just covering for the weekend and only did an externalization. He was really nice though and waited to do surgery at my request because he looked so tired I didn't want him cutting on my daughter. He came back the next day looking much better and then did surgery. I haven't heard any bad names around here... but I don't like the way Dr. Hellbusch spoke to me. He is supposed to be "the" doctor to see, but he is rude. I also think he is retiring. I have heard many more doctors NOT to see as far as neurologists. We love our neuro though. Dr. Pavkovic is great. His office staff needs work, but at least his nurse is nice.

Kathleen,
Did Ann Ritter not practice in Winston-Salem,NC? When my mom contacted hydroassoc they gave us her name and my current nsg Dr. McLanahan both were about 3 hours away with very good reports. I chose Dr. McLanahan. He saved my life. I had a very faulty shunt for 14 months before we found him. Very good nsg, very consertive with shaving hair. Tried to leave as much as possible. And he is very easy on the skin. Uses desovable stitches,glue and/or tape. Even cleaned up major scars left by other nsgs.
I'm going backward. Dr. Jackson in SC just never tried too much. Did not test a bad shunt I had just took another nsg word it worked.
Dr. Fukes at Duke University.The nsg that put in my faulty shunt and told me I'd just have to learn to live with seizures,tremmors, suisidal thoughts,headaches,balance and motor problems. I had never heard of hydro and he did not offer to give advice. I had to go throught the er just for emergency adjustments waiting up to 11 hours in the waiting room looking at gun shot and stab victims. Always insisted from pushing on the shunt it was working fine. He was a ped nsg and should never have treated me because he did not understand hydro or aldult hydro. And he left me buchared with bad scars. I can deal with pain but I don't know why I didn't die under his care. Dr. McLanahan said for as long as I had the faulty shunt he was not sure what all damage could be reversed. It's taken a while but I am getting better. Still a ways to go but better.
I was sent to Duke by my old nsg in Asheville that just didn't know enough about my problems. He put in my 1st shunt in 1983. Very caring and assumed the shunt did not work after 2 years or so. Dr. Lumus is a very caring nsg but just not very skilled in hydro. But last I saw him was in 2002. I know there is another nsg on the hydroassoc board in Asheville...I think his name is Dr Roden. I'm not switching unless I have to but my ns in Asheville has assured me he knows hydro very well.
Dr. M told me when he was planning to clean up my scars during a revision that now they do the cuts side to side not up and down they don't cause the major scars. One nsg put staples in my abdomen and cause even worse scar. They hurt majorly too...
I have an online friend that Fukes caused issues with and told her too she would have to learn to live with it. She had distal tube wrapped around organs in her belly. Dr. M is also her nsg now.

Dr. Mark Souidane (sp?), Cornell-Weil/NY Presbyterian - can't recommend him highly enough - my son's surgeon for an ETV (of which he performs many); during a shunt implant a year later at another hospital when I couldn't get an answer from the neuro. performing the surgery, I called Mark and he called be back (twice) between his own surgeries, with great advice. Doesn't get any better than that.

John Hopkins, MD.
Has a hydrocephalus center. There're also rated the best in the nation.
The NS, are wonderful.

My surgeon Mr Selway is at kings College Hospital London uk is the best!I wouldn`t be here if I had gone to my local hospital!