Karen,
Best wishes for great success w/Zeegers surgery!
Sometimes having a spouse doesn't exactly mean being supported, in any manner of the word or at least it can feel that way. And then sometimes even when the spouse is trying, it doesn't seem like it. I think that's where "we" are at... I'm trying to be more patient when I see some changes tho~ Patience.. after 20 plus years w/back pain I think I've finally gained some!

Diane, thank you very much for sharing this letter us~ I would have liked to heard you speak re being spouse of chronic pain pt. at the spiney conf. ~ maybe in the future at another one closer to home ...

I was just cleaning up some old email and ran into this message from the day after the seminar. It is from Peter Beckwith, who was originally scheduled to speak about being the spouse of a chronic pain patient. He could not make it because of his own pain. He had a single level Charite done by Dr. Regan on Tuesday.

His wife went to Germany in March for a 3-level cervical ADR. After 2 failed surgeries, she was completely disabled. He was uniquely qualified to speak, not only as the spouse of a disabled spiney, but as a chronic pain patient himself.

Here is his email to Diane:

quote:

Diane,

Mark sent me a note this morning letting me know that you spoke at his conference and WERE A HUGE HIT!! When I read Mark's e-mail, my first thought was..."WOW!! Much better choice than me!" I can't imagine what it must have been like for you with Mark "down" and three kids to raise. There are times when I think I'm going to lose my mind with one!!

I don't think it will come as any surprise to you that I believe the stress of a loved one falling victim to pain can leave some severe emotional wounds on us spouses. And those emotional wounds..similar to severe physical wounds�.can leave an indelible mark on our lives. (There is a part of me that thinks we actually have it tougher sometimes because the world doesn't see our brand of suffering. It's almost like what we go through is invisible.) I also believe, however, that, very much like physical wounds, emotional wounds can be the source of tremendous strength and inspiration�if we chose to acknowledge them and put time and effort into healing them. It sounds like you are a living, breathing example of that what I'm talking about.

People like you are a big part of healing for those of us who are still "in it" and we all appreciate you for your willingness to give your time to us. It gives me tremendous strength to know that you endured what I am enduring and came out the other side with your mind, body and spirit in tact. I'm sure it took quite a bit of courage for you to get up in front of that group yesterday and you deserve all the applause you got simply for having had the guts to do it. You provided immeasurable inspiration to the people at Mark's conference by being willing to acknowledge how hard it is, and showing them, simply by the act of standing in front of them, that there is always hope.

I hope you take a minute today to be proud of yourself for what you did. Not only did you give hope to the people in that audience, you also gave hope to the hundreds (and maybe thousands) who will hear about you over the coming weeks as the audience members tell your story to thier friends, family members and chat room comrades who are still suffering. Some of those people who hear about you will be parents. And because you had the courage to do what you did, those parents will find the strenth to read a book, play a game, or have a cozy conversation with a child who otherwise might have gone to bed lonely.

That's important stuff.

From the bottom of my heart, thank you for filling in...

Peter Beckwith

Amazingly enough, Peter went home from the hospital the day of his ADR surgery and is recovering nicely. Christy is having a slow recovery from her 3-level cervical ADR, but is much better off than before the surgery and is coming back to life.

If anyone wants to contact Peter, his website is www.pbeckwith.com.

Mark

Congrats Peter! And thx for sharing this Mark. BTW: I could not access Peter's site, but that may not mean much, considering my luck with reliable web sites...

Thanks Richard... link repaired.

Mark, very compelling; thanks.

Thanks for the nice welcome. Here is our story which I tried to make as brief as possible.

My husband had a 3-level ADR done in Vienna, Austria on January 8, 2004. Years ago he was diagnosed with spinal stenosis and had calcifications removed from his spine. I don't remember the exact year on that. Everything seemed to be going fairly well until April of 2003 when he had a bout of Shingles. During that time he developed severe back pain which continued long after the shingles were gone. We made the rounds of doctors, MRI's, injections, physical thereapy, and all sorts of tests were run. Along with the spinal stenosis, he also had a herniated disc.

All the doctors recommended a spinal fusion or just plain told us there was nothing more they could do for him. Out of desparation I called my Endochrinologist at Yale asking him to recommend the best Orthopedic Surgeon he knew of. He put us in touch with Dr. Yue.

Dr. Yue gave us hope that ADR would work for my husband. What a relief to talk to a doctor that really understood what we were going through. Arrangements were made for us to go to Rudolfinerhaus in Vienna for surgery.

The care my husband received from Dr. Bertagnoli, Dr. Fenk-Meyer, and numerous other doctors, physical therapists, nurses was top-notch. Two days after the ADR there were some complications which required some more surgery but everything did turn out ok, although it was a very scary time for us.

The one real problem he developed afterwards was numbness in his right leg, Therefore he needed (and still needs) two canes to get around. We were told that the reason for the numbness was probably from scar tissue. The numbness goes from his toes to just below the knee. He has feeling on the bottom of his foot, but not the top. This also causes his foot to drop unexpectedly which makes it impossible for him to drive without a leg brace.

When we returned he went through months of physical thereapy, but there was not a lot of improvement in his mobility. His job was physically demanding so he was not able to return to work.

So, do we think the surgery and the expense of all this was worth it? We have talked about it and without a doubt feel it was a good decision. Despite some difficulties he is virtually pain-free and that makes our lives so much easier. As far as we are concerned the surgery was successful. He was in agony and there was no other alternative. He was 62 at the time so he was pretty close to retirement anyway. "Bottom line" if there is something he wants to do, we manage to find a way to get it done.

I have to say that Dr. Bertagnoli and Dr. James Yue (our doctor in New Haven, CT) are two of the finest doctors we have ever had to deal with. They treated us with the utmost respect and actually cared about our opinion (which is more than I can say about some doctors).

MaryLou

I WANT TO THANK MARK AND DIANE FOR THERE OPENESS, MY HUSBAND AND I HAVE BOTH ALWAYS WORKED MAKING GREAT INCOMES, BECAUSE OF BACK PROBLEMS I CAN NO LONGER WORK AND I FEEL GUILTY FOR HIM HAVING TO WORK SO MUCH AND TAKE CARE OF THINGS I CANT ON HIS DAYS OFF I WANT HIM TO TAKE CARE OF THE KIDS BECAUSE OF MY PAIN LEVEL. HE UNDERSTANDS BUT SOMETIMES I THINK HE IS RESENTFUL TOWARDS THE SITUATION, HE LOVES ME AND I HIM MORE THAN ANYTHING IN THIS WORLD AND WE WOULD DO ANYTHING FOR EACHOTHER THERE WAS A POINT ABOUT FOUR YEARS AGO HE LEFT ME BECAUSE HE COULDN'T HANDLE IT ANYMORE, WE HAVE WORKED THROUGH THAT AND HE FEELS ASHAMED AND I STILL WONDER IF HE MIGHT COME TO THE POINT WHERE HE WILL WANT TO LEAVE AGAIN, HE IS A GREAT HUSBAND AND DAD BUT HE FEELS SO BAD FOR ME HE DOESN'T ALWAYS HANDLE THINGS IN THE BEST WAY.PLUS LETS FACE IT WHEN YOU HAVE CHRONIC PAIN YOUR NOT ALWAYS IN THE BEST OF MOODS.

All I can say is WOW! I've been reading this site voraciously for a few weeks now. What an incredible community. Thanks Mark, Diane and Susan for such a meaningful post that has touched my heart and opened my eyes to what was happening to my wife and family. I had no idea. When I showed her this post, we cried in each other's arms. After a few minutes, she gently sobbed, "that's us." What more can I say.

Thank you!

gary

PS. This is my first post. I hope this worked.

Gary, thanks for finding us. Let me know if I can help.