Neurosurgeons: the good, bad, and downright aweful
 

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.

Neurosurgeons
 

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 AM lucky!
 

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.

I can't say I have too many complaints......
 

about Ms (yes she is married) Maixner and her predecessor, Mr Klug. I have had one other neurosurgeon who performed my first shunt replacement while we were in Canada, but I was only three then, and so can't remember his (I think?) name. Both Ms M and Mr Klug have been fairly reliable, although I wonder whether Mr Klug's skills were not quite so sharp when he performed his last operation (unless he allowed another intern to do the op, but I don't know).

They are both/have been fairly blunt and to the point, which at times does not inspire a lot of hope for the future (:( ), but I guess that is necessary. Better to be blunt and to the point than tell a lie. I think part of the problem may be that they are not that acquainted to talking to adult patients, which may require a different tack than the one they normally use.

The main thing is that Ms M can do her job, and do it well, which she seems to be able to do, seeing I have not had any surgery in nearly 6 years - keeping my fingers crossed!

Nat.

Great thread!

We've been very happy with Dr. David Frim at the University of Chicago. Great bedside manner, always has plenty of time to discuss concerns/questions--even on busy days. He actually spent over an hour with us at a pre-op appt and 45 min going over post-op scans. We also like his partner Dr. Curry, although he's not done any of Molly's surgeries we have seen him in the hospital.

LOVE our neuro Dr. Kohrman also at the University of Chicago. Its hard to get an initial appt with him though. It took us about 4 months, but well worth the wait. We like our neuro and ns so much we plan to travel to continue seeing them despite our relocating out of state.

The bad...Dr. Oliver a ped neuro. He always treated us like we knew nothing about our daughter and he didn't seem to care what our opinions were.

Lori

Absolutely travel out of state to see a doctor you like. I think that is the way things are going for me because I haven't been told otherwise. Heck, I am thankful that things "cooled down" neurologically for me douring the gas price "spikes"!

My nsg, whom I have known all my life, is 2 hours away from me, in MA. I would never see anyone else as long as he's practicing (although he's ~75 yo or so, so I don't know how much longer that'll be :( ). If you get a nsg you trust, wherever s/he is, count your blessings and stick with them!


LIZARD :)

Neurosurgeons
 

I have lived in Massachusetts all my life and the best NS I have dealt with are in Boston. They take cases from all over the country and all over the worlds for that matter. I hope you all search for the best that you can find. They are worth the search and you will not regret it. Make sure they are board certified in NS too.

My nsg is Dr. Francis X. Rockett at Newton-Wellesley. I've known him all my life, and before I even told my husband I was preg with my daughter, I called him! :D He's the best in the world. :) Who do you see?


LIZARD :)

Neurosurgeons
 

Dr Peter Black is one of the best in Boston

I have heard that. :) I know several of his patients.



LIZARD :)

must also add
 

Dr. Mahmoud Naghib Minneapolis Children's Hospital.. Saved my son!

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.

Wow, this is a great idea. Well, I live in Georgia and the neurosurgeon I had from the time I was 3 months old(when I was diagnosed as having an inoperable cyst at the base of my brain that was causing hydrocephalus) until I was 17 was Dr. Mark Obrien. He was pretty good, but he was also all I had ever known so I was use to him. Last I heard he moved to arizona or arkansas because the malpractice insurance was cheaper there and he was in his 70s by this time. Then I had Dr. Mapstone from the time I was 17 until just after my 19th birthday when he moved to Oaklahoma. He was very into the(I guess its the neurosurgeon frame of mind) that I was a puzzle to be figured out and that if the CT Scan didn't show a problem then there certainly can't be one(news flash, definitely can be huge problems no matter what the CT shows!!!) and he was also always very quick to suggest exploratory surgery. Now the one surgery he did of mine he did good on, but it took forever to get him to listen to me(and I was 18 at the time) that there was a problem no matter what the CT showed, and it ended up with him taking so long to agree with me that I almost had my sight permanently damaged because the fluid had backed up and was pressing on them.
Now the neurosurgeon I have now is awesome. His name is Dr. David Wrubel(he and all of the above I've had out of Egleston Children's Hospital in Atlanta Georgia although Mapstone and O'brien are no longer there). He actually listens to me and doesn't treat me like I'm a puzzle that needs to be solved. He treats me like a person who happens to have a problem that needs to be solved(if you've ever been treated like a puzzle you know what I'm talking about). He took over my care when Mapstone left when I was 19. He is slow to operate, which I love because it means no uneccessary surgery and willing to try whatever he can to avoid operating. He also will listen to me and no matter what try to find the problem going on. Recently I started with bad headaches and had seen him after I went to my primary and ruled every thing else out. I was getting totally discouraged because the CT came back clean and the Nuclear Medicine Radiation treatment came back clean as well. He also tried adjusting the pressure in my head(I have a programable valve) and that just seemed to make things worse. So finally he scheduled me for an MRI, which is something all my other doctors had told me I couldn't have. He did that yesterday and low and behold it shows that my cyst is larger than it was before and because the catheter isn't as far into the cyst as it needs to be, its causing a chiari malformation which was causing the pain in the back of my head. So nothing but good words about Dr. Wrubel, an "eh hes ok but hes kinda old now for Dr O'brien, and a stay away if you like actually being listened too for Dr. Mapstone

I will never understand how some nsgs believe CTs are gospel. :mad: :rolleyes: They can LIE. When I went in with classic failure symptoms at 13, long before MRI (I didn't have that 'til 25!), I had three CTs to find the blockage. NONE of them found it. I wasn't actually found to have one until I was opened up. Any nsg who insists CTs tell all needs a new job!! :mad:

LIZARD :rolleyes:

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.

One of the best
 

Hey,

I know of Dr. McLanahan.
My neurosurgeon since December 2002 has been Dr. Martin Henegar of CSNA in Charlotte, NC. He is very good and has saved my life on several occasions. He has done the ETV procedure and has considered all his options and my opinion before he does something different. Also in High Point, NC there is Dr. Victoria Neave.

My only options now are the ETV procedure if I continue to have more scar tissue or the VA shunt in my 3rd and 4th ventricles.

The Hydrocephalus Association website has a list of all the children and adult neurosurgeons that participate in funding all kinds of research and new procedures. You can find them by going to the website and putting in your state for example NC.

Hblank89

I have to agree, this is a great thread!!

I am too from the UK.

for all you guys, with children under the age of 18, Great ormond street is surely the best hospital you could possibly be referred to.

I have a great NeuroConsultant/Surgeon.
Mr William Harkness
Others at GOSH include:
Professor Richard Hayward
Mr Dominic Thompson.

:grouphug:

Hey! What an awesome idea for a thread! I personally live in Georgia(USA). My neurosurgeon is awesome. He actually listens to me and cares about me. He also goes way above and beyond to find shunt problems where the 2 neurosurgeons I had before him(one retired and referred me to another who moved out of state who referred me to the one I have now) were more of the mind set that if the CT scan and shunt series doesn't show it then the problem doesn't exist. For any in this area his name is Dr. David Wrubel with Scottish Rite hospital. ~Melissa~

etv
 

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!