Determined to find a Wegs expert

[LisaT]

Hi, all, I've been floundering around and trying to figure out what to do about the fact that my diagnosis is uncertain, my treatment is somewhat different from that of many others I've read about, and there does not appear to be any plan for follow-up regarding my subglottic stenosis. I've finally realized that it's more important to get the best, most specialized opinion and care that I can, as soon as I can, than to worry about whether one or more of the doctors I'm seeing might get hurt feelings or bruised egos. So, why not start at the top? I emailed the head of the teaching hospital/vasculitis clinic in Toronto that appears to be the centre for vasculitis care and research in Canada. I tried to keep it brief, but gave him a quick history and asked for his advice and who he would recommend here. I've received a few names from others who are here but I really wanted to know who this gentleman would recommend. My rheumatologist has a very good reputation and patient reviews, I just haven't been able to determine whether he's treated many Wegs patients and has the expertise in vasculitis. The other two I've read about here have received mixed reviews from patients, some of them very negative. So, we shall see what if anything I hear back. Failing a recommendation from him, I am going to dinner with a British Columbia Wegs support group on June 12th (so excited! My first close encounter of the Weggie kind), and I will definitely be asking about doctors. Just thought I'd share in case anyone else out there is thinking that being polite and caring for their doctors' egos trumps ensuring they get the best possible care. It took me a while to come to this and time is precious!

[Dirty Don]

As much as our cultures have taught us to respect and even be in awe of medical professionals, they are STILL our employees at the end of the day. They do not go home at nite and think about us...they have lives too. So, you're absolutely right and it's a hard lesson to overcome and get the best for yourself. Like how you're going about it...many on here have to put together their own teams and it's not easy with a disease that few know about or are scared/uneducated to treat. Best to you!

[windchime]

I've had good luck in getting replies from Dr. Loyd at Vanderbilt and Dr. Specks at Mayo/Rochester. They both responded back in a very timely fashion. So good luck with your guy.

[pberggren1]

Lisa, I would check with UBC. I would search out a nephrologist there that teaches.

Who did you e-mail in Toronto? My doc did some training in Toronto.

[LisaT]

Lisa, I would check with UBC. I would search out a nephrologist there that teaches.

Who did you e-mail in Toronto? My doc did some training in Toronto.

Dr. Simon Carette, he's head of rheumatology and director of the vasculitis clinic at mt. Sinai hospital. He's on the Vasculitis Foundation list. My rheumatologist is affiliated with UBC (he's a professor I think), but there's another guy there whose name I've come across quite a bit who I might get in touch with. Dr. Kam Shajania. I think I'll just give Carette a bit of time (his email reply said he's away til the 24th) and see what the support group people suggest. I have a feeling the best dr here is the one I saw for my insurer and I can't call him because of the legal action. I'm still hoping he will produce a report that will be helpful.

[drz]

As much as our cultures have taught us to respect and even be in awe of medical professionals, they are STILL our employees at the end of the day. They do not go home at nite and think about us...they have lives too. So, you're absolutely right and it's a hard lesson to overcome and get the best for yourself. Like how you're going about it...many on here have to put together their own teams and it's not easy with a disease that few know about or are scared/uneducated to treat. Best to you!

And like any employee how much slack you cut them depends upon how hard it will be to replace them. Some times the options are limited or not worth the cost so you might keep a marginal one instead of firing them. And some times a major league all star has an off day too.

[Christina32]

Hey Lisa! Did you get a response from Dr. Carette? What was his recommendations?

[LisaT]

Sorry I've taken so long to respond, Christina! I'm going to look back through my emails but if I remember correctly, he recommended Dr. Kam Shojania. I have been so busy with the school strike on and almost constant headaches and fatigue that I haven't followed up on much. My head MRI came out ok but I'm going to ask my GP to refer me to a neurologist to see if we can figure it out. I'm still waiting on two other referrals, someone seems to have dropped the ball. Getting this all sorted out/followed up will be my first priority when the kids are back in school. I haven't answered your email yet but HOW did you manage two little ones at home and immobility due to your foot? I can't even imagine.

Im way way way behind on forum posts... I'm sorry I've sort of disappeared and plan to have a big catch-up session when I can. I'm not getting emails from the forum for some reason. Anyways if anyone needs me try FB if I'm not on here but I will catch up someday soon. I haven't forgotten you all, I'm just so tired by the time I get any free time that I can mindlessly cruise FB but not sit up and type.

[cutehair2013]

Hi Lisa
I actually see Dr. Shojania when I moved back to BC he was recommended.....I have had seen him three times...and to be honest with you he is one confusing man! My initial appointment was while he was on holidays so I had his fill in...good lord what a waste of a trip that was....pretty depressing as his fill in decided that I was under medicated and wanted to increase all my meds...slow down boy! On our first meeting no offence but not increasing my meds.
My next appointment was with Dr. Shojania and his colleague (name I can't remember) she is a dermatologist, overall it was a quick meeting not that informative they both were more concerned with the Nodules on leg. At one point he even said "does she has WG" Hello you didn't read my file???? The end of the appointment he said to hang in there and he will see me in 3 months.
3 months later I see him and the dermatologist again at that same time, they decide this time to biopsy the nodule on my leg, no discussion around how I was doing otherwise. She did her biopsy and that was it. He scheduled a "phone consultation" for me in three weeks time for the results of the biopsy, I called on the date and he said everything was fine and I could call back to the front desk to make a follow up appointment. Perfect. I leave a message no return call until about 3 months later when I get a call from Infectious Disease asking me to do a TB test....lol Ok so I do the TB test which was negative, I call the his office back to book an follow up to see why I needed this TB test and the front desk said they had a mix up and I did not need a TB test, and Dr. Shojania said I can call when I have issues otherwise no need to see him. Turn outs this TB test was to see if the other person could go on a different medication that reduces the risk of damage liver and kidney...sounds like something I would like to know more about as well?!?!?! When I asked if I was some one that could be considered for this, I was told by the front desk staff I was "sick enough" I am sure he a great doctor if someone presented with flare up, but as I person in medication remission I don't feel like he is the one to treat me, he did mention that he has other patients that have WG.

Needless to say I am less than pleased with his treatment, I live in Abby and the drive to Downtown is crazy plus parking is a nightmare and the parking ticket is approx $65.00 so be careful! I am a few of them...hate vancouver parking! I am currently shopping for a new Rhemy as well that has to be someone out there that is able to provide care for WG patients, as this Rhemy doesn't seem to think I need to be followed at this time.

I have never heard of a person with WG "not being followed" just give us a call when you think you don't feel well. I am honestly considering returning to the specialsits I had in Calgary they were amazing and saved my life....here in BC I am not sure I will get the medical care I need.

Hope this helps and let me know if you have any other questions about Dr. Shojania.

[annekat]

Returning to Calgary sounds like a good idea. I have no idea of the distance from where you are to there. But I saw something about a vasculitis specialist center in Calgary, not sure if it was on here or on Facebook and don't know why I didn't share or save it. Was tired, I guess... I can understand, though, why if you are in medicated remission, there'd be no urgent need to travel to a specialist center, and it seems like there should be a rheumy competent to handle this closer to home. You should be getting more professional treatment than what you described.