Mike -
I didn't start with Dr. Kim. After 2 unsuccessful angio/embolizations elsewhere, I asked for references (You're so far ahead of me!) and Angela Collins recommended Dr. Kim. He's hard to get to see - he's the doctor who put Rep Gabbie Giffords' head back together, so he's swamped with people wanting his services. I didn't get a response from the web or calls as quickly as I wanted, so I wrote a letter starting with the fact that Angela recommended him, included the films from my MRIs and Angios, and hand-delivered it to his office. In my case, the prior angios gave him enough information to cut, but he found the real problem once he was in. If you don't hear back right away, use Angela and me as references. If you call, ask for Florencia, Dr. Kim's patient manager - she's absolutely wonderful! (Tell her that I told you so.)
Best wishes for a successful procedure Tuesday! I was scared - more like terrified - before my first angio. I know you won't be because you're a big, tough, West Texas dude, but, even if you weren't, there's no need to worry. Angios are cake walks. :-)
Susan- it is due to this site that Im "ahead" of the game as you phrase it....I feel like I'm so far behind I may look like I'm ahead. Don't mistake.. I emailed the Dr off his website...as you say I'm sure he gets 100 a day of those...thus I dont really think I'm past square 1 in getting to him. I'm still totally in the dark regarding size and location of my avm...diagnosed last Friday(June 15) and the Dr who is supposed to do the angiogram is out this week...she was also the radioneurologist who read my mri...I'm trying to get in to see a neuro this week just to get my firms read....no luck yet. I'm in a time crunch as I'm guessing a DR like DR Kim would start at square 1 with angio....I have no desire t do one here on Tuesday...then get accepted by DR Kim and have to do another one. Im a basketball guy(scout for NBA)....I want to see a real varsity coach for this issue...my guess is that these are so rare it would be real easy to start with a guy who has very limited experience and I dont want to be a practice patient. At my age if I cant get a pretty good feel that whatever procedure ends up being recommended will make things better without much odds of residual damage of ongoing headaches or other issues I might just decline treatment....your experiece is a great tool for me as i move forward...Im bad at these things...I basically been blessed with ridiculous good health...hell, I didnt even have a primary DR to refer me to an ENT when this series of events was put into motion....thanks a MILLION for your guidance....If you wanted to call me that would be great(405)■■■■■■■■ I talk much better than I type and would love to pick your brain on some of the details and "inside basketball" ....I'm sure you could save me lots of false steps....thanks again...bballokie Mike
Mike--I had only had a CT & MRI before seeing Dr. Kim.
I actually had a disk of my 1st MRI. When my PCP rec'd the results (on a Friday afternon), he called the house & asked if I had a neurologist (I didn't at the time.) I called my mother-in-law to find out who my father-in-law's neurologist was & where he had hospital privileges. My PCP had the lab stay open late so that I had time to get there to pick up a disk with the scans to take with me to the e.r. The e.r. sent me home since I didn't have any signs of a bleed. My PCP was furious! He spent a couple of hours on Saturday doing some research & called us back with Dr. Kim's info. On Sunday, my husband looked at the scans, picked out the ones he thought were "best" & he emailed those to both Dr. Kim & Florencia. Then he made several phone calls to Florencia on Monday convincing her to fit me in the next day. (This was before I even realized that Dr. Kim was Rep. Gifford's neurosurgeon--my mom recognized him on the news a couple of weeks after my first consultation with him.)
Before I left Dr. Kim's office, he had scheduled me in with Dr. Chen for my first angiogram so that he could make the best plan for my treatment. Based on the angio, he determined that my AVM would not be a good candidate for either embolisation or removal via crani. It was too large for embo & was too risky for crani, so Gamma Knife was my best option.
They did another angio a month later when I had my 1st Gamma Knife treatment so they could specifically plan the GK.
Angela- I spoke with Susan at length earlier today.....and since our conversation have emailed Florencia about my case. I have a disk but I'm not techie enough to email it to her. I asked for an overnight receiving address from her so I can fedex it to her....hopefully she will have a level of interest that will warrant her at least having the Dr look at my disk. After reading the posts from you and Susan he is my 1st and 2nd choice to handle my case. The rarity of these avm makes me believe that many even experienced neurodocs havent seen many of them....I want to deal with someone like Dr Kim who have dealt with many ....thanks for getting back to me....you and Susan have shortened my learing curve a lot...and I still dont feel I'm even at 1st base yet....bballokieMike
Angela- what have been your after gamma knife experiences....seems lots of folks here have issues with necratic tissue, bad headaches a long time after the knife etc....reading your treatment log gives me chills....at age 65 just roling the dice looks better all the time...LOL....my problem is I think my avm is eating at my cerebellar function and I can just run the clock out without ending up with a real loss of quality of life....thanks for your posts and inputs....the comments I get from you and Susan are much more helpful than academic writings regarding statistics, etc....bballokie
Mike--since I'm dealing with both GK for the AVM & had crani for the aneurysms, it is difficult to tell which is causing what.
I've had migraines for YEARS. I think my first one was 30 years ago, at age 14 & the second at age 17. They became frequent in college & more so once I started teaching. But even before that, I had a lot of headaches, even in junior high & high school.
I had my first GK last June, then had the aneurysms clipped in July. Then in September, my migraines started to change. I had frequent aura, that if I took a Maxalt & a coule of Tyelenol right away, might not actually turn into a full-blown pounding migraine. Before, my migraine pain was always focused behind my right eye. Starting in September, the pain is sometimes closer to the back of my head--I'm thinking nearer to where the AVM is.
I went for another MRI in September. Things were good--brain was remodeling. Dr. Kim referred me to one of the neurologists @ Mischer, Dr. Anita Madan. She said that I'd probably have migraines even w/out the AVM & aneurysms, but they were probably making hte migraines worse. She prescribed me Nortriptylene, and anti-depressant that is sometimes used for chronic pain. She also told me to practice good sleep hygiene--turn of t.v. & computer an hour before bedtime. This combo really helped, and my migraines were far fewer & far less severe than they had been in at least 15 years.
I actually revoered fairly quickly from GK#2. I had it on Wed, Dec. 14. Then my mom (who was staying with me that week because of the GK), rec'd a text from one of my brothers that he was bringing his kids & his girlfriend to Houston to see a Texans game & wanted to come by the house. I was sweeping up dog hair on Friday, shopping for my nephew's gift on Saturday morning, then sweeping again to mop my floors Saturday morning. The cleaning lady we had been using was supposed to be there on the 14th, but didn't show up.
I was good until the end of the school year (took one 1/2 day with a migraine & that was it during the entire 2nd semester). It isn't unusual for me to get migraines at the beginning of school breaks-when I no longer have a set time to eat lunch, go to sleep, etc, so I wasn't worried when I had migraines the Sunday, Monday, and Tuesday afer school let out. Then on Wednesday--Gamma Knife #3 day (June 5)--I felt fine until the halo came off--which, for me, has always been the worst part. I figured I'd have a couple of days being cranky & maybe a bit headachy & I'd be fine. Instead, I was very headachy & was crying with the headache Saturday morning. I went to the e.r. They did the basic neuro tests--follow my fingers with your eyes, raise your eyebrows, smile real big; did some blood work; kept an eye on me for a while, then sent me home with a prescription of Norco, which they said to take every 4 hours for 2-3 days, then follow-up with Dr. Kim. I took it for several days, then cut it back to 1/2 pill a couple of times a day & still felt bad. I was afraid of getting rebound heacaches (which I used to get form Fioricet) & really didn't want to start becoming dependent on the narcotics. Between the pre GK migraines & the post-GK headaches, I pretty much spent 2 weeks in bed with ice packs. Dr. Kim doesn't feel it was related to the GK & said to see Dr. Madan (who I haven't called to schedule an appt. with yet).
This week has been much better. I've been a little headachy (but not enough to actually take any meds). We've had some weather systems move through, and that can give me headaches. I've attended two days of professional development on teaching grammar--actually kind of fun because we have a GREAT English Dept. Chair.
Angela- I'm amazed as I read your last post....the twists and turns of your treatment....you and Susan are much tougher than i am...I can't imagine doing treatment after treatment like you guys have.More and more I get this feeling that I might just roll the dice with my avm if my teatment is going to be a high-wire act. I see so many posts where people have as many post treatment issues as they had pre-treatment....talking non-rupture people that is. I guess I've been lucky to beat the odds all these years. I'm hopeful I can get in with Dr Kim.....I thinking even very experienced neurodocs may have almost zero experience wth avm. I'm going to be sure whoever I end up with has extensive experience in treating avm. I'm still not 100% sure where mine is....although based on symptoms Im guessing cerebelum. By the way I did time as a public school teacher/coach in my early coaching days out in West Texas. I totally hope you get around the corner with these migraines....having a migraine every day sucks I'm sure....I can remember as a kid my grandmother had them....they totally wiped her out when she had one....thanks for taking time to post...slowly I'm getting a better grip on this thing...I'm rooting hard for you to get past these damn headaches....I am amazed at your stamina and toughness ...to you ever wish you had not started down this treatment road....bballokie Mike
Mike -
This is Mother Eckles speaking ... some good old-fashioned none-of-my-business comments.
1. AVMs are well-known to neuro docs. Of course, you want to have the best when someone's poking around in your brain, but Dr. Kim is not the only exceptional brain surgeon around.
2. There are pros and cons to the plethora of information available to us on the web. Like you, I analyzed my case and determined treatment and on and on. ALL of my self-diagnosis and self-determination of appropriate treatment was wrong. I walked in the hospital Monday morning, walked out of the hospital Wednesday morning, and am pain-free and symptom free.
3. I was scared @#$%less when I started reading people's experiences on this site. There were some advantages to the lack of information and knowledge available in "the old days" when we learned what little we knew from the experts who spent their lives studying a narrow body of knowledge and told us only what they determined we needed to know.
4. I understand completely how, as you study the worst possible cases and determine without a doctor's guidance what your post-treatment problems are likely to be, that you are seriously considering not doing anything. I did that, too. Treatment vs. no treatment is the most personal decision possible, so I'm not trying to tell you what to do, BUT one conversation into a friendship, I see you as an incredibly vibrant, dynamic guy who has succeeded in life because you dared to try. You don't strike me as a guy who quits the game without trying, just because you've got a tough opponent.
5. The waiting when you've got no real information is absolutely the worst part of this process, and that's where you are right now. Get real information as soon as you can - not from the web, not from us, but from real docs - the neuroradiologist doing the angio, the guy from OU, Dr. Kim, and/or others. They can take one look at your films and tell you treatment options, risks, benefits, etc. They may give you different answers, just as your evaluation of a prospect might differ from Lynn Lashbrook's, but all are valid.
Enough of my babble. 'Got to get to work.
Susan
PS - I've never regretted taking the bet.
Susan- read your post...not one thing to argue with. Facts are key and they are slow to come by. For sure treatment.no treatment is the end game to it ...and for sure facts beyond all my guesswork will be the final ingredient for me. Finally got my fim in front of a neurodoc Friday(friend of a friend) who ducked out of his office for a quick look. LOL...I told him what i thougt Id seen...he quickly told me I flunked radiology class....not in cerebellum....more in right parietal and slightly sub parietal bordering on the cerebellum...he used the term "substantial" but offered no more saying he is not a surgeon. He has me set up to see a neurosurgeon in his neuorgroup on Monday so Ill be getting the first of at least 3 opinions I will get....Im sure an angio is in my immediate future as well. Im going to press hard to see if there is a likely connect with these avms and the imbalance that sent me to the neurotologist who ordered my MRI which started this ball rolling on June 15. Thanks for the investment of time and "give a &*&^ on your part...I read all you say...as the voice of reason (and experience) with all this. I know I get all over the place regarding this damn AVM....but for sure when I do make a final decision to treat or non treat it will be based on facts of medical testing...probabilities spoken to me by neurodocs...and then my decision based on my own judgement...thanks a million for your posts and guidance...bballokie mike
Mike - I'm so glad you recognized that my rant was giving a #$%@. I was worried. Call me when you get back from the surgeon tomorrow. (713-995-8455) Are you still having the angio Tuesday?
Susan- good seeing your post....I'll touch base tomorrow....as of now the angio is still on.I'm betting this neurodoc I'm seeing tomorrow will want his own person to do the angio(to get me in his pipeline)and try to get me committed to some sort of plan based on angio results. Getting the angio does not bother me one bit....it bothers me that I've had no contact from the Dr office(the neuroradiologist) and I'm supposed to be there 6am on Tuesday for the angio...apparently with no consult at all from the Dr. I see several people here who have had embos done on the initial angio....not saying Id want or not want(if Im even am embo candidate) that but I'd think it would at least be a point of discussion before the fact. Another huge issue for me is the imbalance that sent me to the ENT which led to my MRIwhich kicked thi whole AVM issue off.Imbalance is the issue that is making my life miserable right now....and I cant imagine the AVM is connected....but...I'm learning not to prejudge(from my advisor).....but Ill sure be asking this guy tomorrow about that. I dont think Im prone to going on and easter egg hunt for this AVM when the biggest day to day issue in my life is severe imbalance....If he cant give me with any legit % if certainty that the two are related my #1 priority is going to be pursuit of the imbalance isue...Im about 50% functional with a very busy July scheduled.I totally realize the roll of the dice to this....ob well, maybe I will get lucky and find out some more definitive things tomorrow...Im not betting the ranch however...Im beginning to find that the Dr rue the idea of making "written in stone" statements that could later bite their %^^*...and in fairness I dont think these neuro issues lend themselves to much of that LOL...I feel like I am in this box and cannot find the escape hatch...I dont mind looking hard for it...I know the danger of the AVM...I'm anxious to get a trained DR to tell me how connected or non connected the AVM and imbalance might be(or not)....my money is on some squishy answer like "we cant be sure"...but "we need to address this AVM". The bad part of that is likely that is the best answer he can give...and probably honest on both counts. My reality basically sucks right now....thanks for hanging in there on this...bballokie mike
I actually have seen almost every neurosurgeon and interventional neuroradiologist in the city of Houston. Please call me at 281 ■■■■■■■■. I have a 22 year history with docs in Houston--and I am in the medical field. So, perhaps I can help you. I have a baseskull AVF that is quite difficult repair. So, I am watching it.
Barb toman
Thank you so much, Barb! Mine is done, completely successfully we think, with the final surgery being done by Dr. Dong Kim (neuro surgeon) and Dr. Roc Chen (interventional neuroradiologist and skullbase specialist) and their team. I can't say enough good things about them. I do hope others who see this post will contact you, however. It sounds like you're a wonderful resource!
Susan
I saw dr Chen. UT all agreed that dr michel mawad was THE most capable I’m Houston. He has been doing it longer than all in this region–if not the world. But I am still not ready.