Meeting someone special - Interstitial Cystitis Network Support Forum

chantal nicole · 07-24-2007, 11:16 PM

Hi everyone, hope you are all well. I'm kind of excited. Today i am meeting with an MP (member of parliament) to discuss IC.

I am mainly meeting her because I'm having such a hard time with my neurostimulator in the buttock and my specialist has proposed that as soon as Health Canada approves the new smaller model, he will replace my big one. Lets just say it's too big for me- I don't have an average sized butt.

This was sort of good news and sort of not good news. First, good because of the hope that my sciatic and buttock pain will be relieved once i recover from surgery. Second- bad- no one knows when the new one will be approved for sure. It's hoped it's in about a year, but no promises. I heard about the new device some time ago and hey, I don't know what the delay is about, and I'm no medical professional who can say if the delay is valid or just stupid. For all i know, maybe it hasn't even been presented and it's just in a pile of tons of other stuff health canada has to approve.

Anyhow, yesterday i went over to the MP's office just to find out if they provide any advocacy when it comes to Health Canada and i was offered the chance to meet with her and tell her my story today. At this point, I'm going in expecting she can't do anything for me but i will feel ok having tried and at least providing some education to her on something that matters to me. The bonus would be any help regarding this issue.

My biggest fear right now is that i won't be able to get my pain under control, that Health Canada won't approve the device till after May 2008, and that if Toronto hasn't adjusted or fixed their waiting list system, they will have used their funding all up on other people by the time the device gets approved and then I'm screwed for several more months simply because of funding. I was tols in January the waiting list system would be improved for people needing new devices but i don't know if that's worked out yet. Bottom line, i feel bad for anyone who has to wait for relief. I myself have had buttock issues for the entire time with the device, and though not severe till recently, I can't wait to get the issue resolved. I really want surgery asap. I expect to wait anywhere up to 1 year but i don't want to wait more than that. I was put on anti inflammatories recently, both which can lead to bleeding ulcers. I was only put on a stomach protector with the second one and the last dose i took a few days ago seemed to trigger a sore belly- not nausea, just pain in the belly, which isn't normal for me. I don't want to cause another problem by trying to manage the sciatic/ buttock issue, and in the end, getting my device replaced with a smaller one is the best solution. I know the battery doesn't last as long and i could see Health Canada not being impressed with that but i need a solution, and right now, this seems like the best one.

I'll let you know how it goes but again, I'll be ok if all i get is to let an important person know about our condition, about our needs, about the neurostimulator, about the great work that only 5 doctors in Canada do, and that we need her support if she can offer any.

Chantal

tigger_gal · 07-25-2007, 02:27 AM

I really hope all goes well. I have the new implant, compaired to the old one, I think it works much better. There is a gal in here that lives in Canada that has had the new implant. I am under the impression you got pain relief from your stim, that is wonderful, not many do. I got pain relief from the urgency part, but not anything else. sending hugs and hope that things speed up for you.

***ICNDonna*** · 07-25-2007, 03:21 AM

Good luck!

Donna

***DebbieB*** · 07-25-2007, 12:24 PM

Hi Chantal,

You go girl, that is just great that you took this step to see the MP, I just hope all of this works out good for you ..
I was told that it would be up to a year and half that is what Dr. H told me ..
So remember I thought that I would be getting the new one when I replaced my pacemaker and was told it was not approved as of yet ..

Oh Cindy I hope you did not think that I was getting the new one as I thought that when I went but did not get it so I have the old one , so the only good thing is that the battery will last longer then the new one now...

Thinking of you Chantal...

Hugs, Debbie

chantal nicole · 07-25-2007, 01:22 PM

The lady was interesting and it was a learning experience for the both of us. It seems she knows some about IC as she says that people with it suffer so much, and it's so great that this works for me. She is going to try to help me. With medications, Health Canada can sometimes make special exceptions to have the drug given to a specific case before it is officially approved. Unfortunately, this doesn't mean the drug will be covered by medical plans, often not. She's unsure how it goes for medical devices. She wonderes if i could perhaps get special approval since i need it asap because of the pain this one is causing me and a new old device won't fix that- we'll need doc support for this. Unfortunately, approval from Health Canada doesn't guarantee the surgery or device will be covered by the Ontario Health Insurance Plan (not sure about it).

First things first, i have to find out the model number for the new device that is hoped to be approved. She will contact Health Canada to find out where they are in approving this thing and when they feel it will happen. Once that happens, depending on the results, we might try to go ahead and gather what we need to try to get special approval for me. If that happens, then there might still be an issue with getting the device covered by OHIP- unsure. My biggest concern is that the device will be approved too late for me to get help with the next pocket of funding for these in April/ May 2008, and then i have to wait till 2009, even if with Health Canada it's a go as of July or something.

All this brings to light an interesting point- if Health Canada approves the device in lets say March 2008, it's not necessarily automatic that OHIP will give the ok at the same time or a week later or something. I am not sure if it's the truth that as soon as Health Canada approves the device that i can get it pending setting up a surgery date because we're not sure that OHIP will cover it right away or if it's another waiting game for that.

She'll try to help me but we're not sure how far we'll get. I just want my bottom to feel better soon but without sacrificing the treatment.

Chantal

***DebbieB*** · 07-26-2007, 06:38 AM

Hi Chantal,

I would like you to have some relief at the bottom as well..

Hang in there, I sure hope everything works out for you for the best Chantal ..

Hugs, Debbie

Snuph · 07-28-2007, 05:45 AM

HI,
You are in a frustrating spot. I talked to Dr. H about the funding for replacement batteries at my last visit. He told me that he is basically telling new patients to start putting money away each month for battery replacement to avoid the waiting list. At this time it costs about $4000. He also gave me some info for patient government advocacy regarding the issue. There seems to be some issues on who has the money. The government saying they have given the hospital money and the hospital saying they did not receive funding for replacement. In addition, he has about 43 patients on the waiting list for interstim- who get bumped when a person goes in with a battery change. We all need to be taking a political stand on this issue. Look how many people could have received an interstim with the money the government gave to the polo club who did not request that much. Who says we do not have a two tiered health care system.

***DebbieB*** · 07-28-2007, 12:34 PM

Hello Snuph,

Well my battery in my pacemaker stop working in November/06 almost had it for eight years and I had to wait until May 29 /07 to have a new pacemaker put in as they do not change the battery in the pacemaker , you get a whole new pacemaker unit put in .
Yes, I did bump someone off the list which I feel bad about but then again I needed it done..
Yes I understand what you are saying I looked into what the cost was and it was $6,500.00 when I called and my husband health insurance would not cover it ..
I did sent a letter to my MP and it was forward to the Ministry of Health and I did not even get a letter back from them, so I did try to do something about it , there has to be a lot of us to send letters at this point..

I had the older version of the pacemaker put back in so the battery will last another 8 to 10 years but the new pacemaker that Chantal mention is not available in Canada for another year and half and the battery life line is five years..

I sure agree that something has to be done about this as it is really frustrating at this point for anyone needing this done ...

Debbie