Hi, all!
After my interventional neuroradiologist embolized a large fistula and an AVM, he was unable to get to three additional vessels that were spawned, so he's recommended surgery. The neurosurgeon he recommended is out of my insurance network. Besides, I like to research what the patient's think, not just who is associated with the same hospital as my doc (though I'm certain his recommended surgeon is excellent). Anyone out there have thoughts on Houston Neurosurgeons? We've got such an exceptional medical community here - I'm sure there are outstanding docs here who take BCBS.
Thanks!
Susan
Hi, Susan,
My surgeon is Dr. Dong Kim, Director of Mischer Neuroscience, Chief of Neurosurgery @ Memorial Hermann, Chair of Neurosurgery Dept @ UT Health Medical School in Houston. He is Gabby Giffords sugeon--he's the one who did the press conferences about her flying to Florida for the shuttle launch & when they were putting in the artificial skull piece.
I went to him April after my AVM diagnosis. I had GK in June & he did my craniotomy in July to clip 2 aneurysms.
I definitely recommend him!
I have BCBS through my school district.
Thank you! Doesn't sound like they get any better! I hope he will take new patients. SE
Hi Susan E. Here is a link you might find uesful…
http://www.avmsurvivors.org/profiles/members/search?location=houston
You can see members who live in your are and see if their profile pag recommends someone.
One of our moderators lives in Magnolia, TX…
http://www.avmsurvivors.org/profile/KellieCalvit
Plus some live in Katy…
http://www.avmsurvivors.org/profiles/members/search?location=katy
And Tomball…
http://www.avmsurvivors.org/profiles/members/search?location=tomball
Hope this info helps!
Susan--Dr. Kim sees patients in the clinic on Tuesdays. Wednesday is Gamma Knife Day. Thursday is a surgery day.
My AVM (unruptured) was found on a Friday. My GP wanted me to go straight to an e.r. & had the lab stay open late so I could get a disk with my MRI scans. I went to the e.r. where my FIL's neurologist has priveleges & they sent me home that night without looking at the disk since I wasn't presenting with any symptoms that night. (The neurologist didn't come in that night). My GP started researching surgeons on Saturday & sent us Dr. Kim's name. My husband popped the disk into the computer & took a look at my MRI scans (he's a marine biologist & was fascinated). He chose the scans that he thought best showed my AVM & emailed them to Dr. Kim that Sunday. Then, while I was at work on Monday (my husband works from home), he called and called and called Dr. Kim's assistant until she got us booked in for a consultation the next day. We didn't know at the time that Dr. Kim was treating the congresswoman. We just knew that my GP picked him & his credentials looked good. And my husband wasn't going to give up until they scheduled us in.
HI SUSAN...MY HUSBAND SURGEON IS DR. MAWAD..(ST. LUKE EPISCOPAL HOSPITAL)..A VERY VERY GOOD DR. THE BEST!!MY HUSBAND HAD HIS SECOND EMBOLIZATION AND FINAL,ON SEPT 15,HE IS DOING GREAT!!!!
AND MY HUSBAND WAS AN AVF TOO...
Thank you for your recommendations! I have contacted Dr. Kim's and Dr. Mawad's offices and hope to talk with them both. (Really feel a need for a couple of good opinions at this stage.)
I hope they get you in soon.
thanks for the discussion....I am just diagnosed after am MR ordered by an ENT I was seeing regarding balance issues ...I may need to go to Houston for my treatment. I will check with both Dr offices...
We are fortunate in Houston to have extraordinary doctors. You are about to learn many things, both from research and experience, and this community will help you in every way we can. I started out with an interventional neuroradiologist trying two embolizations. This was originally recommended for me because they thought there was just one AVM and that they could, without surgery, seal (glue) the rogue blood vessel and be done with it. The procedure is less invasive than surgery - they go in through the groin, going through the blood vessels to get to and close off the culprit. When things get more complex, they can't always reach or seal everything this way, however.While I did not use Dr. Mawad, who is an intrventional neuroradiologist - I learned of him after it was determined that embolization was not a viable solution for me - I talked with Dr. Mawad's staff many times, and they were amazing.
If you have to have surgery, Dr. Dong Kim and Dr. Roc Chen (also an interventional neuroradiologist) at Mischer Neurosciences/Memorial Hermann are my heros. Others will recommend the doctors who saved their lives, but I personally think these gentlemen "hung the moon". I've never experienced such caring expertise.
Whoever you choose, if you have the opportunity, I recommend interviewing several doctors before you decide on one. When I first learned of my AVMs, I was so scared that I just followed my PCPs initial recommendation. After two embolizations, I talked with four surgeons before selecting Dr. Kim for my surgery. The four surgeons had three different approaches to solving the problem. Ask all the questions you can and make sure you are comfortable.
Please let me know if there is any way I can help!
thanks so much for your reply...my avm was discovered accidentally as Ive been having balance issues and my mri was ordered by an ent. I dont even know where my avm is yet although Im gonna guess cerebellar since my symptoms are neuro sensory/motor in nature. At age 65 I suppose I've had this thing a long time....as an active college athlete and ooach all these years I'm amazed I/ve not had a bleed. thanks again for getting back to me....Mike(bballokie)
Mike -
I'm 63 and they found mine because of some "visual events" I had last July. You'll find that we are the exceptions - most AVM patients are far younger. They think mine started 29 years ago when a horse fell on top of me with an I-beam on the other side of my neck. I, too, was WAY overdue for a bleed.
My recommendation - have Dr. Chen (or your selected interventional neuroradiologist) do an angiogram. MRI's are good starting points, but angios provide a great deal more detail. In my case, even two MRIs and two angios didn't show the key problem. They found it once they opened up the spinal column and removed the dura. The great news is that we live in an age in which the knowledge and equipment exist to handle these problems.
Susan- really good of you to respond. Im an ex college basketball player and coach and tourney level racaquetball player. I had my first issue at age 29....some sort of event where the next day I had my 1st ever balance/eye issues. Was given an "guess" of possible early MS but a Lubbock neuro. The symptoms abated in a few months and Ive basically lived issue free other than what I thought was a slight nystagmus which I just learned to "live with" and accomodate. Recently I felt horrible and imbalanced for a few days...then slightly better. Still unbalanced I went to an ENt who sent me for an MRI...thus my diagnosis. Im in OKC and have a angiogram scheduled with an OKC radioneurologist next week. My sister lives in Houston so I'm checking there as Im guessing I can get a more experienced team for this issue down in Htown. I'n hopeful if this thing can be killed I will gain back some of the cerebellar function loss I've had...thanks again for your response....bballokie
Susan-am I assuming you had a "crani" as it is called on this site. The thought of that takes my breath away....and I'm one of those old West TX indestructable types and that idea has no appeal to me....maybe I will get lucky and can be helped with the less invasive approach....LOL...bballokie...Mike
I'm with you on that, Mike. I've always said, "My brain might not be the best, but it's the only one I've got!" (They thought I had a brain tumor 40 years ago, but couldn't find it to do surgery.) My AVMs were at the skull base and inside the spinal column, so mine was not a classic "crani". Embolization may work for you, and it's certainly preferable if it does. I had too many of the little buggers and they were in the wrong places for embolization to solve the problem, but everybody is different. I'll root for a nice, straight-forward groin job for you! :-)
Susan- time will tell....at age 65 there is a piece of me that wants to just roll the dice with the whole thing....I know I wont do that but the temptation is sure there....I think I'm going to find, however, that my avm is in my cerebellum and may be the culprit in the neuro type issues I've been dealing with... if so I cant just run out the clock as this neuro function will continue to degenerate on me...really appreciate your insights...you are quite a source of information not to mention inspiration....Mike
Mike,
Dr. Kim & his team from Mischer Neuroscience have taken GREAT care of me. Since my first consult with Dr. Kim in April 2011, I have had:
angiogram (performed by Dr. Chen);
Gamma Knife Radiation #1(with angiogram);
craniotomy to clip 2 aneurysms;
Gamma Knife #2:
Gamma Knife #3.
Yes, the thought of a crani is scary, but it wasn't THAT bad. I did spend 2 weeks in bed & taking narcotics, but I've had some nasty migraines & wasn't any worse than those. I was at the BIG dog show in Houston 2 weeks post-crani (in a borrowed electric wheel chair because I was still pretty weak); at a dance class 4 weeks after surgery; and back in my classroom for Back to School Inservice 6 weeks after surgery. I scheduled the 3 Gamma Knife treatments for school breaks.
If you do decide to come down to Houston, definitely try to get in to see Dr. Kim.
1 Like
I sent information to Dr Kim today....or at least to his website....my sister lives in Houston and could provide transport to and from, etc. Im scheduled for an angiogram in OKC on Tuesday(June 26). In the event I can get into Dr Kim would he take this record or want his own staff to start at square 1 and do another angio? Maybe you dont know that as it seems his team started your entire process....I have no desire to do an extra angiogram if I dont need to....I am almost sure my avm is in my cerebellum....as you describe the location of yours i cant imagine a tougher place for it to get to for treatment....bballokie
1 Like