I have a way forward! (cervical & lumbar surgery with Dr. Pimenta, Brazil)

[Katie]

Hi Carson,

LOL, you are so funny "I feel like celebrating even though I have no idea what is going on exactly."

My life is outlined here somewhere, but I'd have to dig for it. So here's the short version....

I hurt my back picking up something from my right side in 2001 or so. Conventional therapy kept it bearable for many years, up until about five years ago. Then it started hurting with a vengence.

I went to my family doctor, who prescribed some mild pain meds and PT. I did the regular stuff, and put in a request for a consult with a spine surgeon. It took almost a year to see him, only to be dismissed in five minutes with him saying that he sees half a dozen people like me every day, and to get used to taking pills, that there was nothing he could do.

A couple of months later, a friend sent me an article about ADR and Stenum, and I started my campaign to get my government insurance to cover it. Almost three years later, I've exhausted every surgeon here in Ontario, with no luck. The worst of them said my numb hands and arms were simply from carpal tunnel syndrom, and ignored all the neurological tests done before.

In between times, I travelled to NYC and saw Dr. Bitan, one of the best in the eastern US, who said I was critical; that my C5/6 was compressing my spinal cord and I was one fall away from quadraplegia. This was on top of my three levels in my lumbar causing unbearable pain.

Unfortunately I could not afford the cost of four to five level surgery in either Germany or NYC, which ranged from $65,000 to $140,000. The Ontario system would not approve coverage for out-of-country surgery, and I wasn't having much luck with surgeons in other provinces until a person on this site recommended one in the province next door. After several tests, he agreed on surgery.

Now comes the crunch. Another poster here, bless her soul, noted that I had mentioned several allergies and recommended that I have extensive testing in the US. A week before my scheduled surgery I got the results back, revealing that I am severely allergic to every metal they would have put in me for fusion or ADR. The surgeries that I so badly fought for would have done me in. So after five years of waiting and fighting, we cancelled the surgery.

Just before Christmas, yet another couple of people here recommended that I send my MRIs to Dr. Luiz Pimenta in Brazil. The first set got lost, but the second set made it through to him just a few days ago.

He has come up with metal free appliances, both for fusion for my lumbar and an ADR for my cervical. Apparently it will take at least another year before a metal free lumbar ADR will be available, and my situation is too critical to wait that long.

So I am awaiting an email from Dr. Pimenta's assistant to confirm some dates and details. That, in a nutshell, is my saga.

The long version will be out in print or movie within the year Thanks for asking....it has been a giant battle and only came about through the networking on this awesome site. Thanks to all.

[jss]

Katie,

This is such GREAT news! In my decade long quest for spinal health I've read dozens (probably hundreds) of desperate stories. All of the successful outcomes I've seen have had only one thing in common; perseverance. I see that you've been "persevering" for about as long. Interceding for a successful outcome...

I see a horse in your avatar. You're an equestrian? Do you expect to be able to ride post-surgery?

[Katie]

jss, thanks for such kind words. Perseverance is just a nice way to say stubborn, is it not? I think I resemble a bulldog some days.

And yes, I am a horse person, and had that wonderful old fellow in my avatar for twenty-nine years. I got him as a four month old colt, and after pulling our wedding carriage six years ago, he died the following year. I miss him terribly, as he was my first horse but not the last. We still have a few mares, waiting for the day when I recover. They are affectionately called 'pasture puffs'

But instead of riding, I do combined driving, using two and four wheel carriages that can travel cross country or down quiet trails depending on my abilities. I started out jogging (harness) race horses on the track when I was a teenager, exercising them but not racing them. All of this is much easier on my back than riding.

My daughters were heavily into Pony Club, jumping and dressage, and I have inherited their ponies after they left home I can't wait to start driving again...sigh....gently of course. I have spoken to a number of Stenum patients though, who have resumed their riding after multi-level ADR surgery. I'm not sure what to expect after fusion, is all. Hopefully my only real passion in life will still be a possibility.

[Lynda]

Yey, hey Katie,

That's the best news I've heard in ages. Well done to you for all your efforts, I'm really pleased for you. You must feel on top of the world?

Having met Dr Pimenta, (at the SAS conference in London) you are in extremely good hands and I am delighted for you, wish you all the very best and I look forward to reading your post op tales.

Much love

Lynda

xx

[runagain]

Katie,

Congrats. i am glad you found an answer to your condition. Good luck in Brazil and I hope everything goes check-mate good.
No problems.
Talk to Terry. He had four levels in one operation.
keep us posted.

Runagain

[Katie]

Thanks you two Every little bit of encouragement helps! I've heard nothing but good things about Dr. P, and I hope that doesn't change between now and surgery time. The floating feeling is starting to settle...like I have fifty pounds off my shoulders. But until I am on that plane and talking to him in person, I won't feel 'safe'.

I tried contacting his assistant, Rafael yesterday to start the process, but was told he was on vacation until next week. I really don't mind though, as everything is happening so fast, it feels like I should slow down just a bit and make sure I am not forgetting some important details.

For example, I remembered that we have private insurance through my husband's work. So I called them to see if they would cover any of it, and was told that I would simply need a letter from a doctor, confirming that the surgery is not available in Canada. Since this is now about appliances that I cannot get here because of allergies, it should be much easier to get through that red tape.

I will try to get that today or later this week and send it in for approval. It would cover half of the surgery, so well worth pursuing There's no guarantee that it will work, but it's just one of those stones I've got to turn over.

Thanks for the suggestion to contact Terry. I had forgotten about his marathon surgery. In the beginning, we would have been having the exact same one...I was trying to get to Stenum for the same levels. Things have changed...I need one more lumbar now, and perhaps one less cervical level done, depending on what Dr. P finds with a new MRI.

Any and all suggestions are greatly appreciated!

[Dave]

Due diligence pays off Katie. Great work and keep it up, you are almost there.

[Cindylou]

Katie,

Of course, I am just now seeing this post of yours since I have been out of town at the funeral, and I just wanted to cry. I cannot believe it. This is absolutely, hands down, some of the best news I have heard in a long time. I am sooooooo happy for you that things are finally coming together!! You are so in my thoughts and prayers. Keep us posted on your final surgery date and travel plans....I know you will.

Love you bunches honey!!!

[Patti]

Katie....

You are the messenger of HOPE. God's speed and maybe you'll be dancing on the streets at one of the world famous Brazilian carnivals

[Katie]

I truly hope that my story encourages others to keep fighting, to not give up even when roadblocks keep showing up. I've melted down more times than I can remember, but I never really truly gave up (well, OK, maybe for a couple of minutes once ) I just really believed that it was the thing to do, and that no one was going to do it for me.

There have been so many good things coming out of this journey. First of all, I've realized how strong I am, and how very strong my marriage is, how much my husband loves me. To go through all this just months after our wedding seemed very unfair, but there obviously was a reason. If there had been any other stressers like depression or children, or serious financial burdens, it may not have ended as well. We were very fortunate.

I learned about another family...the one on this board. The support I've received has been overwhelming. And without it, I would not be here today. I will never forget the help I got regarding the allergy testing which literally saved my life. And that's just one of many things for which I'm thankful....more than once I've been directed to surgeons who have made huge changes in my life. They are all stepping stones, or rather building blocks to where I am today.

I wish I could thank you all individually, to send you all a big bouquet of flowers , but you all know who you are anyway.

Thank you, and blessings to each and every one.