Getting referred to the correct hospital

cattipat
on 1/24/20 2:28 pm - Etobicoke, Canada

I have a 15 year old gastric bypass. I'm gaining weight again and my diabetes and sleep apnea are back. I also had a gastric band which did nothing except cause trouble with reflux and food regurgitation. That was removed on Dec 31/19. The surgeon *****moved my band told me I need a Duodenal Switch and referred me to the Ontario Bariatric Network, since my family doctor was refusing to do so for 2 years.

I just got a letter from Toronto Western Hospital, where I was referred based on my postal code. I have to go in for a seminar next week. I checked their website and they only do the gastric bypass and the sleeve. I don't want a sleeve! I'm getting older (mid fifties) and I don't want to have to fight for years again in my sixties to get a DS after the sleeve fails. I've done a lot of research and everything I've read says the DS is far and away the best option for a RNY revision. I called this hospital but they wouldn't give me any straight answers and just said "come to the seminar anyway".

How do I avoid getting railroaded into getting a surgery I don't want at a hospital I don't want? This hospital is also in a bad location for me because transit there isn't accessible (I use a walker), I have to walk 20-30 min from the nearest accessible transit to get there and it's two hours' trek by transit each way. I don't want to waste years going back and forth for lectures, tests, consultations etc. at the wrong hospital only to end up being sent to a second hospital, jumping through the same set of hoops a second time, and waiting more years for a surgery. I could die of old age first.

Has anyone else had the experience of being sent by OBN to a hospital that doesn't offer the kind of surgery you need? I know they do it by postal code, which IMO is asinine, in fact there's another OBN hospital that's a lot closer to my home. What happens? Is there any way I can get sent to the correct hospital now? Or does the first hospital send all of your results to the second one where the procedure is done? Is St Joe's in Hamilton the ONLY Ontario hospital doing the Duodenal Switch?

Leslie W.
on 1/24/20 4:12 pm - Cobourg, Canada

If you switch centres you usually need to restart process from orientation as each centre operates independently. Hopefully someone will respond to what centre provides what you want and you can request transfer. No guarantee that you will get what you want. Do your research and have your arguments ready to support what you want. RNY remains the GOLD standard in Ontario

    
Referral: August 2010 Orientation TWH: May 25, 2011  NP: June 8/11, f/u sleep clinic June 7, abd u/s June 14, SW: June 28/11  Nutrition Class: July 5/11, Dietician Aug 09, Psychologist Aug 25 Surgeon Sept 16th Surgery Date: Oct 11/11 HW:287, Opti wt: 260 SW: 242
My Angel is Sheri TK   
cattipat
on 1/24/20 6:21 pm - Etobicoke, Canada

Thanks for the info! It's just what I feared, I'm being railroaded into going to a useless hospital that doesn't do the surgery I need and I can't even get to because transit there isn't accessible. I checked the Toronto transit website tonight, I'd have to walk almost 2 kilometres through a bad neighbourhood to get to this hospital and next week's orientation ends at night. The worst part is that OBN totally stonewalls patients and doesn't give us a way to contact them directly. I already know that talking to anyone at that hospital is useless.

I refuse to waste more time on Toronto Western Hospital. Today on the OBN site I noticed that referring doctors can specify which centre to send the patient to. I'm going to call that doctor's office tomorrow and ask if they can submit another referral specifying that I need to be sent to a centre that does the DS, and that the Toronto Western site is inaccessible to me because of my disability. At least the doctor can contact OBN directly. I know it's done in Hamilton at St Joe's and I can get there by GO train. RNY is out of the question for me, I already had that surgery 15 years ago and there's no such thing as putting an RNY back together, it has to be redone with a DS.

selkiem
on 1/26/20 1:31 pm

I had my RNY at TWC last June - fantastic experience. The RNY is considered the "gold standard" - their words and is the preferred surgery of choice. They do the sleeve ONLY if there are compelling medical reasons NOT to do RNY - so I don't think you have to worry! I may be confused about what you had done? Did you have the RNY already?

cattipat
on 1/26/20 2:54 pm - Etobicoke, Canada

I'm glad you had a good experience with TWH! In my case, yes I already had the RNY 15 years ago so I can't have it again. The Duodenal Switch is the gold standard for RNY revisions. It provides the most weight loss for the longest time. But - there aren't many doctors who do it because it's a complex surgery. So far the only one I know of is at St Joe's in Hamilton. I know TWH also does the gastric sleeve. I'm a bit concerned they may try to force the sleeve on me, because it doesn't provide enough weight loss and it only works for a few years. It's not much better than the gastric band which I just had removed.

I was pretty upset when I wrote my last post because it has taken me two years of fighting with doctors just to get the referral to OBN, and I had to fight every step of the way to get my RNY as well. I've calmed down a bit since then. I went on the OBN website and read through the physician section of the site. It turns out that they send you to the hospital based on postal code at first, and at that hospital your needs are assessed and they decide if you need to go elsewhere.

So I'm going to their orientation next week. It's going to be interesting. Now in Toronto we have the first case of the coronavirus and everyone's freaking out. You can't find a mask in any of the stores or online. I'm worried because I'm still recovering from lap band removal surgery a couple of weeks ago, and TTC doesn't provide accessible transit to the hospital (I use a walker). I will have to walk almost a kilometer from the nearest transit to the hospital, in the dark, through Chinatown and a bad neighbourhood with a homeless/addict drop-in. I'm afraid of being mugged or picking up that virus. I have one of those respirator masks with the big filters on the sides, that's what I'll be wearing when I go.

Grim_Traveller
on 3/15/20 3:46 pm
RNY on 08/21/12

Revision to DS or VSG from RNY is very complex, as you said. You can probably count on one hand the number of surgeons who have done enough of them to be worth talking to.

To revise an RNY requires dismantling the bypass and putting everything back together the way it began. THEN they do a sleeve, then the switch part.

I wouldn't be too worried about having a sleeve forced on you. Taking down an RNY and doing a sleeve is incredibly complex and risky, both for you AND the surgeon. Adding on the switch is not much extra work or risk if all of that is done.

Be really careful who you go to for this kind of revision. It is very risky.

6'3" tall, male. Maintaining a loss of 280 pounds.

Highest weight was 475. Consult weight 04/12 was 411. RNY on 08/21/12 at 359 lbs. Current weight 195.

M1 -24; M2 -21; M3 -19; M4 -21; M5 -13; M6 -21; M7 -10; M8 -16; M9 -10; M10 -8; M11 -6; M12 -5.

StevesGal
on 2/6/20 1:00 pm - Hamilton, Canada

I'm from Hamilton. I had an RNY in 2011 and lost approx. 120 lbs. Over the past 4-5 years, I have regained about 80 lbs. Now I'm heading for revision surgery. The only way to get a DS is to have a sleeve. As far as I know, DS is not/cannot be done to an RNY. Dr. Hong is the only one there that does the revision surgery (RNY to Sleeve) - he also did my RNY. About 8 - 12 months later, I'll see if I need the DS.

If you haven't had the RNY, I don't see why they're recommending the sleeve first, unless there are other issues that you haven't mentioned or don't know about (scarring from the band, other co-morbidities). You need to trust your doctor to give you what you need, not what you want.

If you do end up switching to Hamilton, you should know that the appointments are not at the hospital (downtown) but up on the mountain (West 5th & Fennell). You will need to take a bus there from the GO Station. Surgeries are done at the hospital.

Good luck whichever way you go.

Beth

Former RNY patient revising to Sleeve then DS.
Appts: Dietitian - January 21/19; July 16/19, August 13/19, September 17/19, October 15/19; Social Worker: August 23/19; DS Orientation: March 20/19; Internist: September 30/19; Surgeon: November 13/19 (signed consent).
Surgery Date: February 28/20.

MY RNY DIDN'T FAIL ME - I FAILED IT.

cattipat
on 3/13/20 4:44 pm - Etobicoke, Canada

Thanks for the info! I didn't reply because I wasn't sure what would happen with Toronto Western Hospital. They had booked me for a consult with their surgeon which I had today.

Dr Hong is the surgeon I had heard of who does the DS surgery. I wasn't aware that it's done in two stages. My research indicated that when they do a RNY to DS they convert the stomach pouch into a sleeve during the same operation in which they "rearrange" the intestines. I guess different doctors do it differently. I wouldn't object to doing it in 2 stages if that's what the doctor does.

As long as I can get to the appointment by public transit, that's all I need. Predictably, the Toronto Western surgeon I spoke with today told me they can't do anything for me, and then spent half an hour trying to talk me out of a DS and talk me out of any kind of bariatric surgery. I refused to accept that and told him to go ahead and refer me to Dr Hong and I'll make the final decision with the doctor who knows what he's talking about when it comes to DS.

ladygodiva1228
on 3/16/20 12:03 pm - Putnam, CT
Revision on 02/04/15
On January 24, 2020 at 10:28 PM Pacific Time, cattipat wrote:

I have a 15 year old gastric bypass. I'm gaining weight again and my diabetes and sleep apnea are back. I also had a gastric band which did nothing except cause trouble with reflux and food regurgitation. That was removed on Dec 31/19. The surgeon *****moved my band told me I need a Duodenal Switch and referred me to the Ontario Bariatric Network, since my family doctor was refusing to do so for 2 years.

I just got a letter from Toronto Western Hospital, where I was referred based on my postal code. I have to go in for a seminar next week. I checked their website and they only do the gastric bypass and the sleeve. I don't want a sleeve! I'm getting older (mid fifties) and I don't want to have to fight for years again in my sixties to get a DS after the sleeve fails. I've done a lot of research and everything I've read says the DS is far and away the best option for a RNY revision. I called this hospital but they wouldn't give me any straight answers and just said "come to the seminar anyway".

How do I avoid getting railroaded into getting a surgery I don't want at a hospital I don't want? This hospital is also in a bad location for me because transit there isn't accessible (I use a walker), I have to walk 20-30 min from the nearest accessible transit to get there and it's two hours' trek by transit each way. I don't want to waste years going back and forth for lectures, tests, consultations etc. at the wrong hospital only to end up being sent to a second hospital, jumping through the same set of hoops a second time, and waiting more years for a surgery. I could die of old age first.

Has anyone else had the experience of being sent by OBN to a hospital that doesn't offer the kind of surgery you need? I know they do it by postal code, which IMO is asinine, in fact there's another OBN hospital that's a lot closer to my home. What happens? Is there any way I can get sent to the correct hospital now? Or does the first hospital send all of your results to the second one where the procedure is done? Is St Joe's in Hamilton the ONLY Ontario hospital doing the Duodenal Switch?

You're probably not going to be happy to read what I have to say, but here goes.

First off you have had 2 WLS and it appears both of them did not work. What you need to figure out before you have another WLS is why did the first two not work? Was there a mechanical issue with them or was it that you stopped following the plan?

Any WLS is just a tool and if we do not learn how to properly use the tool then we will gain the weight back.

If you are dead set on getting a revision from bypass to DS then it would be in your best interest to look at the very few doctors in the US that perform those surgeries. Going from bypass to DS is a very complicated and serious surgery. If you put your faith in the wrong doctor you could very well end up dead on the table.

Dr. Sanchez Lapband 9/12/2003
hw305/revision w280/cw197/gw150

Revision from Lap Band to Bypass on 2/4/2015 by Dr. Pohl

    

LisaK/ UnstapledLisa
on 3/16/20 5:00 pm - plymouth, MN

I know of patients who had a rny converted to DS without having to have a takedown of their rny (which I had to have a reversal of rny, long story and while rny reversal patients do get converted to VSGs, that's more in part to prevent getting Gastroparesis vs. concern about regain, in most cases but my surgeon who did both rny and reversal here in the states would've never considered doing anything but a takedown/reversal).

I don't know much about Canadian healthcare.

I also don't know if you converted from vertical banded gastroplasty to rny and while you don't have to explain, once you hopefully can find a surgeon *****vises to DS from RNY, others can chime in how that went, just know you aren't the only.

Also check out the revision and DS boards both on here and as much as I love OH, it might help for support for yourself, to check out the other bariatric websites that provide patient support on the internet and maybe checking social media, like Facebook.

One other thing to keep in mind, I had a parent revise from rny to DS and in his case, it didn't work but in his case he never got help for emotional eating issues and unfortunately when his adhesions were removed, when that happened, during his revision, it actually made it easier to eat.

At the time of my rny in 12/2001, rnys being done lap was fairly new, DS were not done lap, then.

As much as RNY IS considered to be the "gold standard" a lot of patients I know who had DS were thrilled and had long term success, with that being the only bariatric surgery they ever had.

Your limited mobility you can't fault or blame yourself for, hopefully you'll find both support and a surgeon who will determine that it's the right process for you and I wish you the best of luck and am sorry for the frustration and health issues you've been experiencing.

peace, lisa

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