Can anyone refer a doctor who knows about VHL located in Springfield, IL or anywhere in Central IL? Thanks.
-Joe
Can anyone refer a doctor who knows about VHL located in Springfield, IL or anywhere in Central IL? Thanks.
-Joe
I too live in central Illinois! I can't believe there's someone out here like me! YAY! Okay, seriously, Joe, I think we may be able to help you and perhaps each other. I was diagnosed w/vhl in 2001 and have been living with it since. My tumors/lesions/cysts/growths/etc. tend to grow on my brain stem, spinal cord, pancreas, and kidneys.
Man, I am so happy to find someone here in IL!
Okay, sorry. Got distracted! I went through the metaphorical wringer back in 2001 and 2002 and still see some of my doctors out there in Springfield. I live about 2 hours away. I have a great neurosurgeon who works out of St.John's and a fantastic urologist who removed part of my right kidney b/c of cancer who also works out of St.John's. The genetisist who did the "Official Diagnosis" with the DNA and all that also worked there.
I'm so glad that I might be able to help you get help! I was thinking that maybe I should send a separate email with their info, but that's not in the spirit of why we communicate here on the internet now is it? So, for neurology stuff Dr. Michael McIlhaney was and still is my neurosurgeon. He operated on me 3 times and he's just great. He's quiet and can seem a little stiff, but he's really nice and very good. He has a very dry sense of humor and he's just a really great doctor. I have to warn you though, he is a really really early riser kind of guy so usually his appointments are in the mornings and if, God forbid, but if performs any kind of surgery and you're in the hospital, he usually does rounds at like 6am. Ugh...that was rough! Anyway, I also like him b/c I have one particular tumor on my spinal cord which he tried to remove, but found that (these are my words, not his) when he poked it, the sensors attached to my feet went bananas so he stitched me up and we talked afterward about what to do. He was very honest in that he suggested we (my husband and I) try to find another neurosurgeon who might have a little more experience with tumors encumbered with the spinal cord. I really appreciated his honesty and his advice and even though I haven't had an appointment to see him in about 2 years, I wouldn't hesitate to call on him again!
I'm sorry this is so long!
The other dr. I'd recommend is Dr. Thomas Tarter. He's a urologist/nephrologist who works with kidney tumors and such. He's got some wild ties in his wardrobe and is very upbeat and personable. He's also very good at his job. He performed a partial nephrectomy (he removed part of my right kidney) and I see him yearly to look at the kidneys to see if any of the growths still there are changing or growing.
I hope this helps you. I've also had some trouble with my pancreas and saw a Dr. in St.Louis (that's like 3 hours from where I live) and he too was great. Please feel free to email me if you want more details. I also have the information for the genetisist who did the "Official Diagnosis" thing but he usually deals with pediatric genetic things. When I was there going through the ropes and getting tested and such he did the testing b/c the person that usually does it for the adults was on vacation or something. Anyway, email me if you want or need more info.
And lastly (again, sorry it's so looonnnggg!!) I don't know how long you or whomever in your life has vhl has had it, but when I first started learning about it, I read somewhere and someone also told me that the best way to sort of take care of myself was to appoint myself as my number one caretaker b/c it's going to take a whole sort of team of doctors, specialists really, to help me b/c vhl can attack so many different organs. So that's what I did. I recently counted, and from 2001 until now, 2007, I've seen about 20 doctors and specialists, not including all the physical therapists who had to work with me after my 4 major surgeries. It's hard sometimes, but I think this website where we can use each other for help is just a God send!
Okay, whew! I think that's all. So yes, please email me if you want or need any more info.! And of course, best wishes and happy health to you and yours!
:o)
Rebecca.
Thanks Rebecca.
I have had the genetic testing and have the gene for VHL. I got the testing done because my father died of VHL in 2000 and my sister had brain surgery to remove a tumor in 1997. My sister has small tumors in her brain and spinal cord that currently do not bother her. I have never had nor currently have any symptoms, but I get the yearly barrage of testing done. I recently separated from the Air Force (actually I was medically discharged because VHL is "incompatible with the military lifestyle") and moved to Decatur. We are moving to Springfield within the next few months.
My wife and I had my son tested last year, and he also has the gene for VHL. He has had corrective surgery for strabismus (crossed eyes) which could be a symptom, but otherwise he has no problems and is a normal healthy 3 yr old. We took him to see Dr Hossam Abdelsalam at St Johns when we moved here last year to get a baseline MRI of his brain and abdomen.
When did you start having trouble? Are you the first in your family to be diagnosed? Like I said, my dad had it, my sister and I both have it and my son has it. How are you feeling/doing currently? Do you work... where do you guys live?
-jdk
Hi Joe, My husband and I live in Jacksonville, IL. My husband and my daughter have VHL. My husband has had quite a number of ordeals with VHL, but he is still here and is the strongest man i know. My daughter is almost 7, she has had her eyes checked since she was 1 year old and had her first MRI last summer. Everything has been fine so far.
As for doctors, we go all the way to Kansas City. My husband is from Missouri that is part of the reason. The other reason is because i had not heard of any doctors in springfield that knew about VHL. I would also be very interested in any doctors that you learn about. Even if my husband stays in KC, I really want to find doctors closer to home for our daughter.
AMy
Joe,
Sorry to reply so late but I haven't checked E-mails in a few weeks. Northwestern Memorial hospital in Chicago is listed as a VHL center. Dr. Robert Havey is an Internist with many VHL patients. Dr. Lee Jampol is an Ophthamologist/Retinal Specialist that I HIGHLY recommend. Let me know if you're interested in more names and numbers.
Sincerely, Marie
I apologize for not replying sooner. Sometimes I can't find the time to get online for a couple of days so if we're conversing back and forth please don't give up if it takes me a bit to get back to you! To answer some of the questions you asked...
I was diagnosed in January 2002. I had a hemangioblastoma removed from my brain stem when I was 18 at Mass General in Boston. I grew up and went to college in Massacbusetts and Rhode Island and then went to grad school in western Maryland. I met my husband the beginning of my last year of grad school and I moved to Charleston (IL) in 2000 to work at the university here in student affairs. My husband and I did the long distance dating thing, then got engaged in Jan. 2001. He came out for a Christmas time visit in Dec. 2001 and my health spiraled downward rapidly and he never moved back to Maryland. Being that most of my family is in MA, he stayed here in IL with me and we actually got married while I was in the hospital recovering from kidney surgery in August of 2002! It sounds sad, and I guess it kind of is, but at the same time, we've learned that it's really not about the "where" but more about the "what" and the "who".
When I had the surgery back when I was 18, the lab that tested the tissue that was removed got the pathology wrong which is why it took another 8 years or so for me to be diagnosed. My neurosurgeon had the pathology report and such checked and is the one who discovered the mistake. A genetisist confirmed that I have vhl, but it was my neurosurgeon, Dr. McIlhaney at St. John's that really did the diagnosing.
I'm the only one in my family to be "officially" diagnosed. My mom pretty much has the symptoms like pancreatic and kidney trouble, but no doctor ever really looked deeper into the matter and now, knowing I have it, if she were to be tested and come back positive, her insurance co. could drop her coverage. In addition, her brother and her father (both estranged) had really bad kidneys and pancreas problems including kidney cancer in both. I have two older sisters, one of which is negative and the other hasn't been tested for reasons similar to Mom's. I have a neice and nephew and neither is positive although my nephew has juvenile, or type 1 diabetes.
I used to work in student affairs. That's why I ended up here. I got a job running one of the dorms on the University's campus. I loved my job. It still makes me sad to know that I'll never be able to do work ever again. After I was diagnosed and spent a year and a half going in and out of the hospitals, I tried going back to work and I was a mess. It was too demanding physically and mentally and I had to leave and go back on long term disability. Right now I'm applying for Social security disability and also IL state disability so that we can basically live. My husband works full time, but his income alone isn't enough to keep us afloat. Not to mention that if I loose the medical benefits I have right now and we have to use the plan his employer offers, it'll just kill us financially. It also is a whole new system of doctors and hospitals and specialists. Basically we'd have to start all over. Worse case scenario is that I get denied or don't get a reply in time, and we have to pack up the wagon and move back to Maryland and in with my in-laws. They're great people, but I'm very independent and I pretty much lived on my own since my junior year of college. My parents taught us all how to stand on our own two feet. Unfortunately when I stand on them now, I can't do it for too long and I wobble so much that a stiff breeze could knock me down!
Aside from the chronic pain of the multiple surgeries (5 total, I think including one where part of my right kidney was removed) and the radiation I had to zap the tumors on my spine, I have a hemangioblastoma at T7 on my spinal cord that is causing more pain and problems. We've been watching it for the last 5 years to see if it's growing and how fast. My Dr.McIlhaney tried to remove it back in '02 but when he poked it, the neurosensor things on my legs jumped off the charts so he abandoned the operation b/c he didn't want to paralyze me. So for now we wait. As long as it's not growing (or growing fast) and I can manage the pain with the 10 different meds I'm on, we're circling the airport. Someday if the plane has to land and Mr. T7 has to get off, the surgery will go well. Right now the odds are "fairly high" that I could become paralyzed so we wait until I can't wait any more.
Whew. I think that's all your questions.
My sister and her family are in the Air Force! Okay, so it's just my brother-in-law who's actually enlisted, but they're stationed at Scott over near St. Louis. They just finished a 3 year tour in Germany. This weekend I went for my first visit and my neice and nephew have grown up so much! My nephew is the diabetic and we had a lot of talks about medical stuff. He had a lot of questions for me. He wanted to go into the military like his dad (and mom...my sister was enlisted for 6 years before a medical discharge for a different medical reason) but can't b/c of his diabetes. He told me, "It's sad that I can't do stuff and it makes me so mad because it's not my fault i'm diabetic! Do you feel like that too, Auntie Becky?" It was nice.
I'm sorry to hear about your son, but hopefully since you know and he's still so young you'll be able to catch any problems early. Who knows what or if anything would've been different with my and my family if I'd been diagnosed either as young as him or even when I was 18. Did you know you had vhl before you had your son? It's something my husband and I talk about. He says it's totally up to me which I'm greatful for. it's unfortunate we can't really decide together like a lot of "normal" people can, I guess.
Well, another long posting from me! Wake up! It's almost over! What do you do for a living and how do you feel? I'm always curious to see how other people deal with their vhl problems. I suppose that's about all for today. I hope you didn't get blown away or anything with the thunderstorms going through IL today! Merry Tuesday to you!
beccaloo.
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