Finding Doctor for Rare Disorders

• By graciewt
• Posted February 19, 2007 at 9:52 am

I live in a town of 2800, in a county of 62000. Our local hospital does routine- type surgeries only, and we travel to see specialists. I go to a city that is almost an hour away. There is a closer city, but no one there who specializes in my area of neurology. I asked my family Dr to refer me to a specific specialist when I moved to this area and met a neighbour who had received care from this particular specialist. I have had this condition for over 30 years, so I have become very familiar with how the medical system does and does not work. As patients, we need to take more responsibility for our own care. I had been sent originally to a different specialist in a different city, but after 2 years of feeling uneasy about the care I was getting, I switched.

I was having 1 visit for an MRI annually, followed by 1 visit to the specialist who was monitoring the results. My treatment plan has escalated due to a large tumor that may need surgery if that is possible.

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• By elainef66
• Posted February 19, 2007 at 10:40 am

Maybe this set of questions could be turned into a survey form? It would make it easier to process the results for your paper, and maybe quicker to respond to.....

I find myself wondering how to quantify "how rural is my area?"
Town of 2'200, in a county of 48'000 (New England)

Several small hospitals are within an hour, but we travel 4 hours round trip,.2-3 times a year for all scans and results to a good center with competent specialists.


I've had to introduce the family to my husband's GP and our pediatrician. I contact them first by phone with very basic info (familly history of VHL, husband has this and that...) to give them a chance to look it up - and see if they do or not . At the first appointment I'd bring a copy of the handbook, and let them know that I refer to the VHLFA a lot, and give them the website info with the specification that there is a section for medical professionals...

GP was bypassed when our health insurance lapsed (all he ever did was write referrals to anyone we'd pick). Pediatrician has been awsome - he'd actually had a couple of VHL patients during his internship out West. He looks up everything and goes well out of his way.

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• By Christol7
• Posted February 22, 2007 at 2:30 pm

gracie,

Thank you for your comments. Is your primary care doctor good at cordinating all of your appointments?

Is there issues with you medical coverage due to the fact that you have to travel to other areas for assistance?

How did you educate your local doctor about VHL? Did you have to try more than one physician inregards to this?

Thank you for your help.

Christol

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• By Christol7
• Posted February 22, 2007 at 2:35 pm

Elaine,

Thank you for your comments. Joyce has been great and suggested a survey on this site which I am working to complete now.

Did you have to search out a new GP or did your exxisting one work well with you in learning more about VHL? The same question in regards to your pediatrician? Does your pediatrician read the films or does he prefer to have them read by others.

Would you be confident with your current medical team to know about the latest and greatest opportunities? Do you feel that it has been put back to you to keep the doctors abreast of the newest treatments that are available to you?

Thank you so mcuh.

Christol

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• By graciewt
• Posted February 22, 2007 at 4:27 pm

Hi again - have difficulty typing, so will use few words - just started seeing new doc so don't know about co-ordination. - only live less than 1 hour from specialist now, who seems quite familiar with vhl (lots of excellent specialists in a densely populated area) - no medical coverage issues since I'm Canadian

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• By elainef66
• Posted February 23, 2007 at 11:01 am

I'll be looking for the survey - I spent years in research so it's easy to sink into the "rut" of creating a meaningful database ;-)

The GP we had at first diagnosis was new to us (my husband went in for his first ever physical with the name of this disease his mother died of 20 years earlier, which led to an eye exam, which pretty much up-ended life as we knew it at the time). Although that doctor indicated interest in following the case, mis-communications within his office brought things to an ugly end before the year was over... The next one also evidenced interest, but really just served as a referal dispatch for anywhere we chose to go. Generally they all expected us to find the info and they'd take it into account , refer us or ignore it. Since we currently lack insurance he hasn't had a GP to speak of - his specialists see him without referals...

Our pediatrian is a different story: (the kids do have insurance) - he's very involved and proactive, and will contact specialists to follow up on any question I have; he looks at the results, and runs them by the appropriate specialist too, to confirm his conclusions. I'd love to find a GP for my husband with the same dedication and open mind.

I am fairly confident that the current specialists he sees are well informed and pro-active - probably in part because it is a teaching hospital - they're working at the leading edge. More important to me is that they are open-minded to at least discuss alternatives (even when it isn't something available there) and they have been willing and comfortable with our desire to get second opinions from NIH (just going over scans and surgury plans).

I do feel that it still is on us to be as informed as possible - because this is the the only medical issue we are dealing with, our focus is better and we have more time than a busy doc with thousands of patients with hundreds of ailments... And because our docs are in reaserch groups their focus will be on their special subject, which isn't VHL for any of them (we're not going to a VHL clinic)
Some days feeling like we have to manage all the scattered pieces is a really BIG job though.

My pet peeve is indifferent medical professionals who aren't interested or open-minded enough to pick up on new info if it is brought to their attention by us or any other source.

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