New here and on a mission

**Hal** · 10-08-2011, 11:55 AM

Hi everyone, My name is Debbie and I am trying to find out as much info as I can regarding ADR. My husband has progressivley gotten worse over the last eight years, he has DDD in L2/3 and L4/5. We recently heard about Stenum and there team of Dr's. So far have read a lot of good things, but would like as much info as possible. We have submitted his exrays and MRI and now waiting for reply. We live in western Canada, and was wondering if any one on this site is from this area. I am trying to figure out if our medical system will help with financing for out of country. Any help would be much appreciated.
Thank You All
Debbie

**KBear** · 10-08-2011, 09:05 PM

Welcome Debbie! Sorry your husband is going through this, it's hard living with spine problems. I've heard wonderful things about Stenum and there are several on here who have been and had excellent results. trkdoc714 (Bob http://www.spinepatientsociety.org/f...s/trkdoc714-9/), our super moderator, had a great experience there and I'm sure will pop in soon with information.

Have you gotten surgical opinions from anyone else? We generally recommend getting at least 3 opinions, to make sure you pick the best surgical option for your husband. There are contradictions to ADR and it's not best for everyone. Sounds like you are on the right track researching your options and learning all you can. It's overwhelming, but well worth the time investment.
Best of Luck,
Kathy

**trkdoc714** · 10-09-2011, 06:22 AM

Welcome to SPS Debbie and Hal.

I can't be of much help with the Canadian health system and what they will fund in regards to overseas medical procedures.

If you need an opinion of Stenum, I'd make the same choice as I did 2 1/2 years ago. The staff and facility are top notch and geared toword the success of the recovery and the surgical team, in my opinion, is the best in the world.

Bob

**Katie** · 10-09-2011, 08:51 AM

Hi Debbie,

I'm from Ontario, but lived in BC for many years. I first had Stenum on my radar five years ago (check my signature at the bottom for history), but had trouble affording them and in the end, I needed someone who could give me metal free devices. Dr. Pimenta in Brazil was my only and best option. He is a world class surgeon as well, and addressed my problems quickly and with great compassion, and was more affordable for me.

As you have probably already discovered, the Canadian system cannot help unless you find an exceptional surgeon. I did find one in the Vancouver area, Dr. Mark Matishak, but he couldn't help in the end because after word got out, he was swamped with people from his own province and decided to fill that need first. I haven't learned of any in Alberta.

There are a number of people on here who have gone to Stenum....a lady from Alaska, one from the Yukon, and others that I can put you in touch with from northern BC. It was someone there who first put her story in the local paper, and it was forwarded to me by a good friend. That's when I first heard of ADRs and Stenum, and where my journey started. It's been a heck of a ride, but very successful in the end.

If there is anything I can do to help, please just ask. There is a Facebook page about the people who have gone there, or had Maverick discs in general I think. Look up this page. The Maverick family. Artificial Disc Replacement support group. Lurinda Martin was the first and the one I contacted. Bob, you may be interested in linking up with this as well...sorry, should have offered it sooner!

Debbie, you have had the good fortune of finding this spine site. You couldn't find a better group both for support and for information. Most of us have been there, done that, or are in the middle of finding our solution. Take care of both yourself and your husband. You will get this sorted out.

**Katie** · 10-09-2011, 08:56 AM

PS: May I add...please consider getting metal allergy testing done before any surgery. It was potentially life threatening to me, even though my only symptom was a rash from jewellery. One lady here is now trying to sort out having a revision done, getting her ADR removed because of that, and another saved herself that misery by having the test beforehand and finding out she was positive as well. The lab is in Chicago, and you simply send them some blood samples through a kit that they send to you.

**Hal** · 10-09-2011, 12:14 PM

Thanks to everyone for your help. My husband has been told for years that he was inoperable. He was told this was something he had to live with, there was something about fusion but he did'nt want that. He now lives on percocet and morphine. They just started with the morphine the last couple weeks, He does not like it at all.

**KBear** · 10-09-2011, 06:10 PM

Originally Posted by Hal

Thanks to everyone for your help. My husband has been told for years that he was inoperable. He was told this was something he had to live with, there was something about fusion but he did'nt want that. He now lives on percocet and morphine. They just started with the morphine the last couple weeks, He does not like it at all.

Sadly most of us have a long road of misdiagnosis, or just complete denial of having a problem. I was told that I was too young for fusion and the doctor I saw at that time didn't believe in ADR, so I had no idea that it was even an option. Before surgery I had been on Fentanyl patches, and the moved to time release morphine, plus hydrocodone and array of other drugs. It's hard living like that, and luckily there is help available, you just have to fight for it.

**Kimberly** · 10-10-2011, 07:27 PM

Debbie and Hal,

Welcome to the forum

Unfortunately I don't have much experience with ADR as I was not a candidate (and I didn't travel internationally for my surgery.) So I guess I'm not much help with those specifics.

But I do understand what it's like to have to be your own advocate. Continuing to push ahead until you are satisfied that you are getting the care you deserve/need is so hard when you are in pain, but unfortunately it is often the only thing that moves you forward toward the correct diagnosis and treatment. I had three different surgeons look at the same exact MRI images and give me three very different diagnoses (from "your scans don't look that bad" to "you have some pretty severe pathology here and you need surgery.) So frustrating.

Keep asking. Keep seeking. Hang in there. Don't give up.

Kimberly

Kimberly

**Katie** · 10-11-2011, 04:43 PM

Debbie, I was told that right from the get-go. I waited a year for my first appointment with a neurosurgeon and he spent five minutes with me, and the visit ended with what you two were told, to go home and take more pills

That he saw hundreds of people just like me all the time. It seems like they have quite the racket going on, hey....get paid untold thousands to say that to 90% of the patients that come through their doors.

It took me a few years to get my case sorted out, but I am doing great now, despite our health care system. My advice.....don't listen to them! Find someone with a positive and qualified opinion. Canadians are getting a bum rap, spine care wise.