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We have a member who has just relocated to Chicago, and who is having trouble with what sounds like an endolymphatic sac tumor (in the inner ear).
Can you suggest a specialist in the Chicago area who is good with ESLT's? He would very much appreciate a referral to a doctor who is familiar with these and good at working with them.
Thank you!
Joyce
I live in Chicago. I don't have ELST issues, but Northwestern Memorial Hospital (downtown) is a VHL Clinical Care Center. I see all my docs there. Dr. Robert Havey is an Internist with many VHL patients; maybe he could refer an ear, nose and throat specialist. Let me know if you are interested in more information. Can/should I post phone numbers here?
Marie
Thanks, we did contact Dr. Havey and he was extremely helpful.
The reference I received from two ELST specialists is Dr. Richard Wiet at Northwestern.
Best wishes,
Joyce
Thanks to all for the information. For reference, here are the doctors I've been working with.
Dr. Havey, Internist
http://www.clsma.com/physicians/havey.html
Had complete physical checkup. Bloodwork, 24 hr urine test for pheo, plus all the other stuff typical for a 40 yo male (not all, uh... shall we say, pleasant?). He has some 60 VHL patients under his care. He describes VHL as a surgical disorder, but welcomes his role as "Quarterback".
Dr. Chadler, Neurology
Not much help. Takes a "wait and see" approach. Sat on my previous scans for 11 days without looking at them, knowing that I'm losing 10 decibles of hearing per week. His triage nurse is rude, bothered, and put-out by "special requests". If it doesn't fit her job description, she simple says, "I don't do that". The overall lack of urgency is troubling and bordering on malpractice.
Dr. Alan Micco, Otolanrygology, cochlear implants:
Fast out of the gate. Scheduled MRIs and prescribed steriods sight-unseen, which was very comforting. However, that was a month ago, and I need to get these tumors removed damnit! I'm honestly not sure if we're wasting too much time pursuing this cochlear solution for my right ear, which has been at 8% for 20 years. I want to save the remaining 50% in my right, which is on a steady decline. I really need to have my ELSTs removed. All-in-all, sharp guy, like him a lot. Knows VHL, but very busy and lack's urgency.
Dr. Ishiyama, UCLA Otolaryngoloy:
Went for a second opinion, which was pretty close. However, he Studied at Northwestern with Dr. Micco, so should I be surprised that they have the same approach? Both are eager to put a cochlear in me ($60k total). Sharp guy, liked him a lot. Knows VHL.
Drum role please.......
Dr. Richard Loser, NIH
I pursued every avenue. Scoured the internet. Read published articles. Reached out the VHL staff. This guy kept coming up as one of the foremost experts on ELSTS. I'm scheduled to do a full battery of tests/scans later this month, and removal of the first ELST first week in October at NIH. So far, I have been very impressed, but have yet to meet him face to face. I'm flying down for a meet-and-great with Drs. Lonser and Kim next week. I think I've found my team.
The staff at NIH are AMAZING! They are scheduling everything down to the finest detail. If you ever have a chance to meet Rene Smith, pop your head in and thank her for all her hard work on behalf of VHL patients. She makes the whole unbelieveably complicated process very easy.
Our bodies and our condition are our responsibility. I've treated this latest round of problems like a full-time job for the past 3 weeks. It has been difficult at times, frustrating, educational, often surprisingly rewarding, and quite frankly, at times the level of general apathy in our healthcare system can be profoundly appalling, troublesome, and disgusting. There are good ones out there, and we have to work tirelessly to find them, because they are rare. Don't always accept what you're given on the first try. Always keep your cool, dress for doctor's appointments like you would an interview, practice quiet, pursuasive, polite, persistent, insistance, and you'll get the job done. Never take no for an answer, rather ask how a different solution could be found.
Wish me luck at NIH!
Great work, Brian! I hope everything goes smoothly. Thanks for sharing this great feedback.
Please give our best regards to Dr. Lonser and Dr. Kim.
All best wishes,
Joyce
Wow Brian! Great job in seeking out the best care. I'm surprised, but not really, that Northwestern didn't provide better care and listen to your needs. The reason I say that I'm not very surprised is because I've had a debate with almost all doctors regarding VHL. Also, I too have dealt with nurses that make you feel like you're putting them out if what you ask excedes routine protocol (in their mind). The more research you do, the more you realize that you need to ask questions, ask questions and ask questions.
Sincerely,
Marie
Hi Brian - I'm kinda late to the 'party' but wanted to offer my 2 cents. I think you're heading in the right direction by choosing Dr. Losner and NIH. He performed my ELST surgery and I have only good things to say about him. Likewise, Dr. Kim and Rene Smith. Really everyone at NIH is top notch. You'll be in good hands! On a related subject ... in your posting you mentioned getting a cochlear implant. I have one also so I might be able to offer a comment or two. In my experience if you're considering getting one you need to investigate what the future testing requirements are concerning ELST's. I would make it a point to discuss it with Dr. Kim with him knowing your possible plan. Although your the actual implant doc's you are considering may be familiar with VHL they may not be aware of the future testing requirements involved. In my case I got the implant BEFORE we found the ELST. As you are undoubtedly aware, the cochlear implant itself (below the skin) is connected to it's headpiece (above the skin) by way of magnets. The headpiece then connects to the processor. Obviously, the implants magnet makes an MRI impossible. NIH would NOT perform my surgery without an MRI (it is my understanding an MRI offers a far superior 'look' at the IAC's). In my case I had to go through the surgery to have the implants magnet removed just so I could have an MRI and the subsequent surgery. The time lost, stress involved, and financial cost was substantial. It is my hope you can avoid any or all of this by asking the right people/questions now. Good luck! By the way ... I'll be at NIH in early Oct. myself having kidney surgery. Maybe I'll see you there! Take care! Mark
Thanks Mark!
After further discussions with my cochlear implant doc, I've taken it off the table for the immediate future. Firstly because of the MRI issue. Secondly because those who have some hearing left in a "good" ear have difficulties with an implant in the "bad" ear. There's just something about the difference in sounds that are interpreted by the brain.
I'm going to get these tumors out of my head, that is my immediate goal. I'm going to make sure Dr. Kim is aware that I need to preserve as much as possible in case I NEED the implant in the future.
I'm encouraged by all of the positive feedback for Rene Smith and Drs Kim and Lonser. I'll definitely be sure to let them know!
Cheers,
Brian
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