Welcome! iSpine is online!

[mmglobal]

11/17/-6 - sticking this thread to forum top to welcome new members. Melody will be at Zeegers party on Sunday. I just sent out a mass mailing about the new forum... and want all the new browser to see the first post!

Mark
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Dear Friends,

September 19, 2006, what an incredible day to bring the new forums online:

• September 19, 1984: Doctors Karin Buettner-Janz and Kurt Shellnack implanted the first truly viable artificial intervertebral disc, the SB-Charite'. This date marks the beginning of a new era as modern spine arthroplasty was born.
• September 19, 2002: I've had 2 failed spine surgeries and have been disabled for 3 years. Fate finds me laying on the floor of a restaurant in Germany trying to explain to the frightened waiter that I'm OK, I just need to lay with my knees up for a few minutes then I'll be able to finish my dinner. My wife and I are taking our first trip overseas... not to enjoy Munich, but to have spine surgery. On September 20, 2002, I had a 2-level SB-Charite' implantation that restored my life!
• September 18, 2006: Again, I'm in a restaurant, but this time I'm in NY. I'm 2 days short of 4 years post-op and I'm having dinner with Dr. Karin Buettner-Janz and Dr. Fabien Bitan. I've met Dr. Buettner-Janz at least a dozen times over the last few years and I always thank her for her part in restoring my life. However, today is special and I get to thank her in a more meaningful way.... read on...

I have a client named Melody Beattie. She has a new book out called The Grief Club - The secret to Getting Through All Kinds of Change. This book includes stories of people going through all kinds of life-altering ordeals: I have cancer, my mother has Alzheimer's, my child died, my spouse is an abusive alcoholic.... One of the chapters is about surviving debilitating back pain... both hers and mine. She had a 2-level Charite' surgery in April of 2005, so it seemed appropriate to give her a copy of Melody's book with the following inscription:

Dear Karin,

Today is the 22nd anniversary of the first implantation of the first Charite' total disc replacement. Tomorrow is the 4th anniversary of my 2-level Charite' implantation that restored my life. Melody Beattie (the author of this book) also has a 2-level Charite' implantation and is still enjoying her new life at 1 1/2 years post-op.

Thank you so much for all your help with Global Patient Network. Thank you for your part bringing me, Melody and countless others back from the dead. For those of us who need disc replacement surgery, the work you have done has paved the way. For us it represents the difference between life, and no life!

With love and gratitude,

Mark

As many of you know, in my past life I was an active skydiver. So was Melody. We have often fantasized about skydiving again and hope that we may someday get to jump together. After I wrote the inscription in her book, I left a message for Melody. An hour later, I had a message back from her. It was funny, because when I called her back, she hadn't listened to my message and I hadn't listened to hers. I could not believe how serendipitous this all seemed that we were having this discussion minutes before I left for my dinner with the inventor of our discs, and with Melody's book in my hand.

• Mark: "Isn't it great!"
• Melody: "Isn't what great? I didn't listen to your message." I told her about my meeting with Dr. Buettner-Janz, the book, the inscription....
• Melody: "Can you believe I did it? What did you think when you heard my message?"
• Mark: "What did you do? I didn't listen to your message!"
• Melody: "I'm at the DZ. I just got down, it was great!

For you whuffos (or people who don't skydive), the DZ is the drop zone or parachuting center. As we discussed what it was like for Melody to get her knees in the breeze again, tears of joy were shed on both coasts... me in my hotel room in NY, and Melody - still at the DZ in California. I couldn't believe the timing of all of this. It was an honor and a pleasure to share this with Dr. Buettner-Janz and Dr. Bitan.

We had a wonderful dinner - all spine, all the time. We discussed so many things that I'm anxious to tell you all about... complications, revisions, new technologies, opportunities for patients.... we even discussed many of YOUR cases. However since it's 3am in NY and I have to get up early, I'm going to call it a night.

I don't know if this was the best way to say Welcome to iSpine, but the forums are ready to come online and this was my day. It's not as important to the world as this day in 1984, when modern spine arthroplasty was born. It's not as important to me as in 2002 when I was about to have the surgery that transformed me from the empty shell of a completely disabled chronic pain patient back into an active, vital man. It's not as important to Melody as yesterday was when she returned to skydiving. September 19, 2006 is the day that the iSpine discussion forums were born. Welcome!

Come in and support one another, learn and share.

All the best,

Mark

PS. Melody's skydive video is online here. The presentation is a little difficult to get through, but it's great to see and hear.

[imkathy]

Hello, I can not tell you how I happened upon this site. (But I am very glad that I did!)
I do not know what "level" I have an issue with exactly, but I have gone through the full spectrum of Chiropractor/Orthopedic/Physical Therapy/Injections/Acupuncture for over a year now with no relief. I went to a reputable doctor in Columbian Presbyterian who expressed to me that I am an ideal candidate for an artificial disc replacement; he referred me to Dr Bitan. I am seeing Dr. Bitan tomorrow- and quite frankly I am overwhelmed. I do not know where to begin with all of my questions and concerns.
What about internal organs, veins etc., during and after surgery? What if I want to have children? Will I be able to shovel snow, lift 20lbs? How painful is a discogram? What are the long term outcomes for this? What happens if this disc slips out of place- will I become paralized? (As you can see I am in panic mode.) If anyone can help with these concerns I would really appreciate it. My problem area is L4-L5-S1, I have numbness to the right knee and sometimes to the ankle. The only way I can describe my pain - is like some one has hit me inthe back with a bat.
Thanks for reading ~ Imkath

[chasswen]

welcome to the group
and for the most part all the stuff you seem concerned about is a piece of cake. now the disogram is'nt a wonderful test but is needed.
and if your seeing dr. bitan hes a awesome adr surgeon you shouldnt need to look any farer. i have never heard anything bad about him. all the people whom have seen him are very impressed and normally have him preform there surgerys
chuck

[dshobbies]

Hi Kathy and welcome,

Though this forum is new, I know of no other person, other than doctors, who are more knowledgable than Mark in the ADR world.

Your overload and panic is understood by all that went before you. You're questions are reasonable. I understand that Dr. Bitan is a top surgeon and he should be able to answer all of your questions. I suggest that you write them down, at least the ones you can think of, and bring it with you tomorrow.

You are about to enter a world that is very confusing and frustrating so take a deep breath. To the best of my knowledge, only one woman is now pregnant and there has been a lot of discussion on the subject. It was suggested that you wait at least one year post op and Dr. Bitan might have an opinion so ask him. If all goes well, you should, when sufficiently healed, be able to shovel the snow. Very few discs slip out of place and your surgeon's skill is a major factor, and you're in good hands. Yes, a discogram is painful if done without anesthesia and each doctor has his own preference, but the pain lasts for less than a second and by the time you feel it, it's over. I panicked about that for a long time and I can assure you, it was a waste of my energies.

So slow down... you don't have to hurry and there is no rush. Talk to Dr. Bitan and compile a list of concerns and try to research them until you're satisfied with your own knowledge. Let us know how your consultation went and we'll see how else we can help. I think you'll find adr people very sympathetic and full of ideas and knowledge to help you through this.

I wish you good luck, Dale

[mmglobal]

Kathy, welcome to the forum. I'm so glad that you found us. I'm also glad to read that you understand the importance of the decisions that you'll be making. It's my recommendation that you take a step back and don't consider yourself hurtling into a surgical decision. Consider yourself immersed in the process of trying to gather the information you need to make an informed decision about your treatment. Don't make the surgical decision until you are ready and have all of your questions answered.

You might not like all the answers you'll get, but you'll still need to take responsibility for the decision... so slow down, make sure you understand the relevant issues. Then, when you do decide, hopefully, it will be without that panicked feeling.

I have one client who has had a baby and returned to a normal life after ADR in her mid 20's. She had a 1-level Charite' with Dr. Zeegers at the AlphaKlinik in 2002. That was a wonderful success. She has a wonderful baby boy. Unfortunately, her cervical spine went south and 3 years after coming back to life, she found herself disabled again. Fortunately, she was able to go to Dr. Bertagnoli for a 3-level cervical procedure and that too was a wonderful success. Hers was a very unusal case and I hope to put more on her story page. Take a look here. I'll see if I can get her to come and post about pregnancy and delivery after lumbar ADR.

Again... welcome!

Mark

[Michelle]

This is the first time I've read this thread-thanks for moving it. I find it funny how often the date of Sept 19 came up in it. Funny to me because that was my surgery date, and the start of my new life.

Great updates on the site Mark!!

I would personally love to hear from anyone who's had a pregnancy after a lumbar ADR as that's my goal. My surgeon said at my 6 week follow up that I could start trying for a baby as soon as I was ready. (Gotta get off the drugs first)

It amazes me how different results on ADR are. I feel it's a miracle for me!Some people having continued nerve pain, but no back pain. I have very little nerve pain, mostly back. (`Course, I'm only 9 weeks out, and doing full rotations through the gym at PT) And the difference in disc height-I only had 1\6 of my disc left. (4mm-now up to 25mm) Shouldn't I have 5\6 of the leg pain? After 8 years of dealing with it, I'm amazed how little I have. So funny the differences!

Kathy, I was quite worried about my disc slipping until I read the thread here about the keel slot process. It was very informative, and put my mind at ease. I'd post a link here, but don't know how. I know it's on this forum tho because the info Mark had on it was great!!! Keep doing reasearch and talking to people here, you'll feel a lot better, I'd bet.

[grima6]

Hi Dale, just read your response to Kathy and was interested to hear exactly what sort of pain ur' having. I have had a 1 leval "Maverick" adr at L5-S1 and things have gone downhill since! My leg pain is in both legs from hip to toes and feels like burning steel!! I have had a Neurostimulator inserted on the 20th Ictober this year but doesn't seem to be doing the job. I have just sent all my MRIs' and info to the ALPHA KLINIK and am getting them to review my case before I make the trip over there (from Australia)!! Seems like everyone on the isine sit has had charite adr success but has anyone had Maverick success?. Please contact me on grima6@bigpond.net.au if you have the time Dale. I feel like no-one understands my pain and i am sooooo sick of pts and Drs telling me to"get used to" chronic pain like I am a whinger!! I have had 4 kids naturally with no drugs, I can handle pain but if only they knew! Dale, is there anything you do ( besides heatpacks) that is working?? Thanks for your patience! Merry Christmas Everyone!!! Lorna

[callmejane]

Hi, I just joined forum finally & will post later, as I have an appt. now, but the short version is that I am now 6 months postop from a successful L2-S1 PLIF fusion. Thanks to my supersurgeon am almost pain-free and working on my new lifestyle/range of motion. I was not a good candidate for ADR & had mitigating financial/insurance circumstances, so I chose a surgeon stateside who does latest/newest procedures (even trialed an ADR). I am very happy with my outcome & will be glad to respond to questions about how I feel about my fusion. Bye for now.

[sunrisa61]

Sure hope I am doing this right. I am RN 27 years now.
Back in May 2014, I started to have severe shoulder pain in the left arm that brought me to tears. I was working at the time, and pain was interfering with my work. I went to the ER and they did a xray sent me home with flexeril and tramadol. I continued to work. Couldn't function. At work I noticed that my left hand was having tremors and uncontrolled movements. So I went to the walk in clinic. The doctor there tried to say it was carpal tunnel. He referred me to a regular MD for primary care. I didn't have a doctor as I had just moved to Iowa, from Florida. I showed my hand movement to this MD she ordered an EMG. That's where my life began to change. The EMG showed nerve conduction issues in left arm and hand. None in the right side. The neurologist that performed the EMG, sent me for an MRI. There they found that I had severe stenosis @ C5, C6. C7 and T1. Referred to a neurosurgeon. She told me permanent paralysis would occur if I did not have the surgery. I didn't want to do it. My Dad was with me and he had a successful cervical fusion and encouraged me to do it. I was working towards my masters in nursing to be a nurse practitioner so I decided I would do the surgery, thinking my life would get back to almost normal. The cervical fusion was done in september, post op 10-12 hours I started having numbness in my feet. My hand uncontrolled movements became far worse. My balance became terrible. Walking was so hard as was going up and down 2 flights of stairs to walk my dogs. Post op follow up the surgeon said she had never seen anything like this and even made me feel like I was being somewhat deceptive. She ordered another MRI and there it was still severe stenosis.
Since then I now have dytonia (uncontrolled movements) in both hands and it has spread to my toes, clonus like. The last few weeks the pain in my legs has become unbearable at time. I walk so slow now, after a short time I am so worn out. I have pain management that does indeed help but leaves me groggy constantly. My restless leg sydrome occurs all the time now, if it is that. What I want to know has any of you had these issues post surgery and if so, have you been able to resolve them. The neurosurgeon says there is nothing she can do for me. Thanks for reading.

[dshobbies]

My first thought is to get another opinion, possibly a couple of them. The skill of the doctor matters more than you might think. If you're in worse shape than prior to surgery and your doctor claims there is nothing they can do for you - I'd say, dump the doctor.

I don't know where you live but ask this forum if they know of someone great in your area - or perhaps you can travel to one of the heavy hitters already recommended on this forum.

To keep it short, my nerve to my left leg was somehow disrupted (for a lack of a better word) during my surgery and other than extreme pain, I had no feeling in my leg and could not move it. They started me on neurontin and slowly it began to come back. After physical therapy, I'd say my leg is now about 60-65%. The time span was almost 2 years of healing. However, though limiting, it's nothing compared to my life prior to surgery and it does not sound similar to your symptoms.

I'm not a doctor and certainly no expert but it sounds like your doctor didn't do something right - or even worse, did something wrong. A second opinion is very definitely your next step. Good Luck - Dale

[Maria]

I too think you need to see someone else and maybe several other doctors. Have you tried a University setting where you might get a multi discipline type of work up?

I've had cervical issues tho thus far not severe enough for surgery and have had 2 discectomies on my low back and recommended for further surgery on low back but never did any thing else. Have been on low dose opioid pain management therapy for 13 years re chronic pain (trying to wean off still) and was taking Neurontin 1800mg/day for 12 years re nerve related pain (plus 5 years of Elavil before that for same thing) which I stopped back in 2009 I believe.

I was an RN when originally injured. Went back to school and got my NP and had to go out on permanent disability in 2000 due to the degree of pain I was dealing with and inability to function in a work setting (back then barely in a home setting).

Sending you good thoughts and hope that you will find the doctors you need to give you better answers. Please keep us posted if you feel so inclined and let us know how you're doing and what you're doing. Maria