*New - 2 year update below!!!*
Read about Melanie's
visit to California - January 2006
Posted by Melanie D. on the ADR Forum
August 6, 2004.
I was refused ADR surgery, over and over. Now I have a date!!!
Many of you have probably seen my recent post in the upcoming surgeries thread. I'm having surgery next month in Straubing with Dr. Bertagnoli. Although I have not posted much for a long time now, I was one of the very early members of this group last July when we started it. At that time, I had been completely abandoned by the Canadian medical system. After 5 spine surgeries with 3 levels fused, they labeled me as failed back surgery syndrome and told me to go away and simply deal with it as I was losing the strength in my legs, control of my bladder and living with unrelenting pain.
I had presented my case to everyone I could think of: all the Canadian doctors I could get in to, Bertagnoli, Hoogland, Zeegers,Marnay, etc. Nobody would take a second look at me and I was getting very discouraged. Then, Stenum offered an option that seemed so unreasonable and was priced uncharistically high as if they just wanted me to go away. They suggested revising the fusion at levels that everyone else agreed were stable with good fusion, yet topping off the fusion with another fusion at the newly degenerated level! I had exhausted all my options and still had nothing to look forward to except a wheelchair, diapers and drugs.
A year ago, Mark (mmglobal) called me up and said that he'd be seeing Dr. Bertagnoli personally and would show him my films. I was ecstatic and sent him my films right away. The next few months were filled with frustration and anxiety as I continued to get negative responses from Dr. Fenk-Mayer (Dr. Bertagnoli's assistant.) Again in October, Mark presented my case personally to Dr. Bertagnoli and we continued to get negative responses from Dr. Fenk-Mayer. At that point, I thought I was done.
In December, Mark called me from Vienna. He was there to observe Cervical ProDisc surgery and would be spending more time with Dr. Bertagnoli. He wanted to ask me some questions about my case because he wanted to present me again to Dr. Bertagnoli. I sat down and cried after I hung up with him. I could not believe that Mark was still thinking about helping me after we'd heard "no" so many times. Everything up to this point was just Mark helping a spiney friend, but in December, he started Global Patient Network and, I believe that I became his very first client.
Again, we got a lot of resistance from Dr. Bertagnoli's staff, so we started on plans B and C. Plan B was for me to try to get to see Dr. Bertagnoli on a trip to NY. This was very difficult to set up and I came very close to spending over $1000 on a trip that would not have been very effective because there was no new data for us to deal with. Mark's ability to communicate directly with Dr. Bertagnoli saved me the $$ and the very difficult trip that would have likely been unproductive.
Plan C was for me to try to get to see Dr. Yeung to try for a good diagnosis. (I never would have thought of seeing Dr. Yeung.) Just as we experienced with all the other doctors, we got nothing but resistance. My case looks too complex with too poor odds of success. It was clear from dealing with his staff that I was not going to have an easy time getting help. Mark first contacted Dr. Yeung about my case in December and in March we were still trying to take that first step. Finally, in mid-March I was in Phoenix having diagnostic injections, imaging and a discogram with Dr. Yeung. He made it very clear that there was no way he would have ever seen me without Mark's involvement (or badgering.)
Amazingly enough Dr. Yeung found that I am a normal person with a normal pain response. L2-3, sitting atop the 3-level fusion has been dominoed and was clearly responsible for many of my symptoms. He recommends a total disc replacement. Based on Dr. Yeung's diagnosis, Dr. Bertagnoli would now consider implanting a ProDisc, hopefully reducing my advancing symptoms and insulating the rest of my spine from the long fusion.
My next step was to make one last attempt at getting Canada's system to pay for the surgery. I thought that this would be a straightforward, yes or no process, but something interesting happened. Based on Dr. Bertagnoli's offer for ADR, my Canadian surgeon said that I shouldn't go to Germany, he would implant a Maverick! I asked him how many ADR's he's implanted and he replied, "Thirteen!" Great news, 8 months after everyone in the world told me to go away, I now have offers from 2 ADR surgeons: possibly the top guy in the world, and Dr. Thirteen Mavericks! I'm not going to go with Dr. Thirteen, but it took me several months to run the gambit of being denied by the system. My symptoms continue to advance and it's clear that I can not get it paid for, so I'll be spending my retirement money and heading to Straubing next month. I understand that I am still a serious case and that my history gives me a reduced chance of success, but I am certain that ADR with Dr. Bertagnoli is my best option.
Sorry for the long post, but I think that my story may be important for many other spine patients. Keep searching. If you are having trouble, get some help. Thanks to Mark and GPN, I now have hope where there was none.
Melanie first contacted me in March of 2003. This has been a long and difficult process. She has certainly been one of my more challenging clients. However, no matter how bad things seemed, she has always maintained a clear focus and an excellent sense of humor. It has truly been a pleasure getting to know her. My hope is that our efforts result in pain relief for her. --- Mark
September 14, 2004
I just got off the phone with Melanie... she's not even 1 day post-op and already has her laugh and sense of humor back. I guess that with the higher surgeries (L2-3), it doesn't hurt as much to laugh (as it did for me!)
She has all the normal complaints... wants coffee, wants to eat.... Those who've been there, know what it's like. I told her a funny story about how another friend finally got some food.
I also spoke with Dr. Bertagnoli at length about her surgery. She had a big 'ole tear in the posterior annulus AND in the PLL. This is great news because this was likely VERY symptomatic. She required a fair amount of decompression. He did the access portion of the surgery because of her prior surgeries and because of the difficulty in getting to L2-3. All went well.. not too difficult.
So, it's all good news so far. We'll see how good she gets... does she have other pain generators? Will she have surgery induced leg pain? If so, how long will it last?.....
So, many of the questions are still there, but for now, all the news is good.
September 16, 2004
I just spoke to Melanie. She's just over 48 hours post-op. She was laughing and telling funny stories about her experience in Germany.
She has been off the pain pump for many hours.
She is taking short walks.
The pain in her leg is mostly gone!
She can lift her leg in ways that she could not... Strength is returning!
She has some new pain across her left thigh, but describes it as minor and we all know about all the strange pains we experience for many days post-op... nothing to worry about here.
It's only the long-term success that matters, but everything looks great so far!
September 19, 2004
I just spoke to Melanie. She's just now 5 days post-op. As usual, she was in good spirits, but that is not saying much for her... no matter how bad things got, she was in good spirits!
Her short walks are now long walks.
She does not drag her leg behind her... her gait is almost normal!
Her bladder incontinence is GONE!
She is having some trouble with water retention and swelling, but her team is on it and she's not worried about it at all. Still good news from Straubing. (Also, her husband and daughter are having a wonderful time riding bikes all around Straubing, and along the Danube.)
September 24, 2004
10 days post-op. She is being released from the hospital this morning. They'll stay in a nearby hotel for 2 nights, then the long trip home. She sounds so great. She is taking 2 hour outings into town. Her leg hurts when she walks a lot, but she has disuse atrophy... it's been so weak for so long, but it's back and getting stronger. Leg pain still almost gone. Back pain still almost gone. Bladder problems GONE! Her gait is NORMAL. Her husband is complaing that he won't be able to keep up with her anymore!
Unless she does something dramatic, like going clubbing all night, the next update will probably have her back at home!
I'm so happy for her and her family. Thank you to Dr. Bertagnoli and Dr. Yeung for making this happpen!
Posted by Melanie's daughter on the GPN guestbook, September 28, 2004.
Well a very special thanks to all those who supported my mother.
Mark, I do not think that works could express how I feel. You love and support has been truly incredible. I know that the phone calls to my mother in the hospital were exactly what she needed.
I watched my mother do an Irish gig (well.. a very special little dance) the day she was discharged from the hospital. I am amazed at her recovery.. My mother actually outwalked my father and I in Germany.
There is still a lot of work and recovery ahead, but I have total faith that she will be better than before.
I am so proud of my Mother. She has been through so much and has shown so much courage through everything.
Thank you to Dr. Yeung and especially Dr. Bertagnoli.
Posted by Melanie on the BPSG ADR forum, September 28, 2004. She's back in Canada!
Thank you for all your thoughts and prayers. Thank you, Mark, for your hard work, support and friendship! One day, I hope I have the opportunity to meet you all. Mark has been totally wonderful through this whole lengthy ordeal. I know without his expertise and persistence, I would still be home wondering if this was the day that incontinence would be a permanent fixture in my life as well as pain. He was the only other person who seemed to believe as I did that this new problem was just that, new; not failed back surgery. Mark kept my family and friends updated as well. It took the pressure off my husband and was truly appreciated.
The physiotherapist visited the day before surgery to show me how to get out of bed. He came again the second and third days after surgery for short walks, and then the fourth day for instuction on two exercises.
The last time I saw Dr. Bertagnoli, he had been in surgery with 41 doctors from all over the world. They were watching him implant an artificial disc. He truly is a miracle worker. As he left he joked that he was discharging me into the capable care of Mark Mintzer.
This surgery seems to have solved all the pre-op problems, keeping my fingers crossed that there won't be subsidence. Apparently, the first day, pain was a bit of a problem. The anaethesist visited and increased the pain meds. I don't remember this, all of the first few days are pretty much a blur. I had some problems with low blood pressure and dizziness for the first two or three days, then a considerable weight gain with swelling of both legs and feet. There was also a bout of incontinence that threw me into a total panic. The doctors assured me this was totally normal. All problems resolved quickly.
Prior to the surgery, my right leg was so weak, that I dragged it along most of the time. The first day out of bed, it was obvious that pressure on the nerve had been relieved. This leg is still a bit weaker that the left, but my gait is unnoticeable now. This is just amazing considering the problem with the new level started in Dec./2001. My husband spent at least the first week looking down at it functioning normally. My balance is still off a bit. Leg and back pain are virtually gone. There are some odd pains that come and go, but they aren't severe and don't last, and are not similar in any way - location, duration, severity - to preo-op pain.
One nurse warned me that distraction pain doesn't always come on immediately, that I still may or may not experience it. The staff were wonderful. The hospital is very modern and immaculate. My roomates didn't speak English, but we managed with an electronic translator and dictionary. I thought three years of high school German would have been helpful, but it really didn't return.
Thank you all for your tips for our stay in Straubing. My family stayed at the Romerhoff Hotel. Eckhard the owner, speaks excellent English and went to great lengths to assist in any way he could. They have internet in the lobby, available to all the guests.
I have slept for two days now, and it is time to think about unpacking. It is also time to make some solid plans to get off pain meds. Many months ago, I had hope, this forum and Mark working tirelessly to help. This has been a surreal experience.
November 3, 2004 - 7 weeks post-op.
Mark here... I just spoke with Melanie. She continues to do well, saying that it seems the surgery was a year ago... not just 7 weeks. She is already in better shape than she thought possible. Her bladder control problems are just gone. She seems to have no walking limit, whereas she could not walk 200' without increased pain before the surgery. The strength in her legs continues to return, although she still suffers from disuse atrophy of many muscles, but she expects that to return. (It appears that the neuro-deficit that was causing this is gone.) She has started PT and her therapists are amazed by her progress.
Remember that this was her 6th spine surgery and that she had 3 levels fused before Dr. Bertagnoli topped it off with a Prodisc. Remember that her last surgery was in 1998 and that she has been on pain medication for over 10 years. She considered her 1998 surgery a success and until a few years ago, she was very functional, in spite of limitations and the requirement for pain meds.
At 7 weeks post-op, she is already better than she was in the 'successful' years after her last surgery! Symptoms that she thought were permanent are gone. She is already down to the lowest dose of pain meds than she has been on since before her 1998 surgery. She doesn't know how low she will be able to go. Remember that with such a lengthy history and so many serious problems, the expectation is not pain-free, med-free. Having said that, she is still one happy camper. It's stil early to be celebrating success and the long-term outlook is unclear, but if you had to script her recovery, it could not be better!
November 30, 2004 - 11 weeks post-op - posted by Mark.
I spoke to Melanie today. She had very realistic expectations about her possible outcomes. After 5 spine surgeries and 3 levels fused, she knew what she was getting into. Her highest hope was to get back to where she was after her last surgery. She has been on opiates continously since 1985... until yesterday. She is now completely off pain meds for the first time in 19 years. This is incredible.
February 25, 2005 - 24 weeks post-op - Email from
I will be 24 weeks post-op this Tuesday, March 1, 2005 and am happy to report that things are going so well, I have to keep pinching myself to be sure that this is really my life. My thoughts have begun to catch up with my body. In the early weeks post op, even though doing well physically, my thoughts were still those of someone disabled. Everything I did was planned ahead to accomodate pain, inability to walk any distance, etc. I still watched the ground when walking because it had become my habit as tripping would have laid me up for weeks prior to surgery.
It took many incidents for this to slowly change. I slipped on the ice in my driveway and jarred my back and surprisingly nothing substantial happened. I did 6 hours of housework without a break and was mildly stiff the next day. I stayed up all night and the next day, to look after a loved one with no ill effects. I cooked and served and hosted a houseful of people from out of town almost daily for over a week and didn't need time to recover.Walking is no longer a problem. Actually, all symptoms are totally gone.
Monday, I will be applying for a part time job. I haven't worked at a regular job in many years.
I had forgotten what it was like to have energy and look forward to life. I am grateful for every day. Life without pain, medications and disability is better than I ever remembered it.
PS from Mark: I spoke to Melanie's husband a couple of days ago. He remarked about how much his life had changed too! For many years, they were tied together. She could not go out without him because her tolerance for any activity was so low, she could not function on her own. Now, she has her own car. When I called, she was out visiting a friend that was over an hour's drive away... something not possible for many, many years. What an incredible transformation for both Melanie and Rick.
September 18, 2005 - 1 year post-op - Email from
As you know I just had my one year post ADR anniversary. The difference in my life is so dramatic. One year ago, I couldn't walk
properly; I dragged my right leg. I was taking a lot of medication, codein
and rivotril. I was having episodes of bladder incontinence that were lasting
five hours. All in all, contemplating living the rest of my life like that
was pretty scary.
Now, one year later, I can walk for as long as I choose with no limp. I
was able to come off all pain medications in Dec./04, for the first time
20 years. There is no longer a problem with incontinence. I am better
than I ever dared to dream possible before surgery.
I am doing a retraining
course to return to my volunteer job with hospice. I am also, running my
small internet business and looking for a contract
job. I have further committed to pursue my art. This summer, we invited
our grandchildren to spend a week each for the first time. Rick and
I have taken road trips to New York City, North Carolina, Ottawa, Ontario
and Brantford, Ontario this year. None of that would have been possible
before the surgery.
We are grateful to you Mark. Without you, this surgery would never
have been possible. We are also grateful to Dr. Yeung and Dr. Bertagnoli.
has changed my life. As well, the spine and artificial disc forums
such a huge difference in my life. The members were always supportive
through all the stages one goes through dealing with these problems.
They also went out of their way to support me through the surgery.
I don't know
would have had the courage to pursue any of this if there hadn't
been others who had gone before.
January 18, 2007 - more than 2 years post-op - Email from
It has now been more than two years since I had surgery in Straubing, Germany performed by Dr. Bertagnoli. I continue to be pain free and medication free - except for the occasional Motrin.
I can barely remember what life was like on a daily basis prior to this surgery. I had been on pain meds for so long and never dared to even hope for this kind of recovery. I couldn't even get a surgeon to do the necessary tests to diagnose the problem.
I have two part time jobs now and spend many hours per week pursuing my latest passion - pottery. I am also walking for exercise.
Rick and I are hoping to drive to Arizona again this February to visit family.
I am saying all these things to you so casually, like they are perfectly normal - and really today they are. However, without you, Dr. Yeung and Dr. Bertagnoli, I would still be housebound...waiting. Keep doing what you do, there are more spine patients with very little hope left out there.
Mark, thank you again.
about Melanie's visit to California - January 2006