DDD S1 and more?

[Gil Denis]

Hello Spines

I have severe DDD at L5- S1 the disc is almost gone with nerve pain in the left leg sometimes right with other issues at other levels.

Three different Doctors one FUSE, one NS no HELP, one Injections and wait?

How long should I wait before surgery

If I wait to long would I still be a ADR surgery or would I have a fusion?

I understand a fusion at L5-S1 is not a big issue but the other levels are also going to hell

I am getting to the end of my rope and am trying to make a decision

Thanks

Gil

[Katie]

Hi Gil,

I so totally understand your predicament. I have been fighting for what I thought was the right thing...ADR at the bottom three levels, and two ADR at the cervical as well. I am so afraid of the adjacent discs breaking down, and they are well on their way, it seems. The latest doctor did say that the L2/3 was fine though.

Can you get at least one more opinion? That's what changed my mind. I sent my MRIs out to at least three more surgeons, and finally decided that the fusions at the two lowest lumbar levels and then the ADR to take the stress from above would make sense for me. But the last few weeks that I spent coming to this decision were very stressful.

If you would like to chat more, feel free to PM. Since one doctor has no opinion, he doesn't count, does he So you really have only had two so far...time for more!

[Terry Allen Blackburn]

I commend Katie for doing her research. It's important to be assertive in looking out for ourselves and our medical treatment. I second her idea of getting more than one opinion. I got several before making the decision to go overseas to have 4 discs replaced. I am doing well today and pleased with my decision and my recovery. It sounds like you are right on the cusp of needing to decide where to turn to next. I would suggest getting some more opinions and ask about the surrounding discs to know what your decisions may affect in the future.

Hang in there Gil.

Terry Newton

[New-disc]

Gil, and others

Due to my doctors in Maine not offering me any options, I waited 7 years before getting surgery.

Waiting, and walking with a limp for all those yrs before surgery has led to hip problems

*(No limp post-surgery)

There is a fine line of having surgery to soon, and a fine line waiting to long.

Research as much as you can... see what the doctors, and more doctors have to offer you.

It really all comes down to .... are you ready for the risk?

Personal choice... when, where, what type of surgery, cost, Ins... = ----> life changing surgery

Please keep us all posted.....

We're all here to support you!!!

Todd

[treefrog]

Yes, I agree, you need more information/opinions.

You say that the L5/S1 disc is almost gone. I would be afraid that having disc replacement may not be possible at this point, because of this. Have you talked to any surgeons that do ADR? What do they say?

Have you had injections, a discogram? What were the results of these?

[cls]

Hi Gil,

After going through my L5/S1 problems I have to say that waiting was not in my best interest. I really wish that I had gone for the fusion 5 months ago when I got my MRI report back which clearly showed little to no disc left. ADR was not an option because of the lack of disc and I was too afraid to have the fusion for fear of nerve damage. I continued to wait making myself live with the pain (it was only back pain 5 months ago) then the neurological stuff hit big time and after two months post-op it still has not resolved itself. I am terrified that I will live with a limp forever from the weakness in my right leg. I have to agree with others who have posted. Gather more opinions, maybe a hybrid fuse L5/S1 and ADR L5/L4. But get after it and I wish you well!!

[dshobbies]

Gil,

The ineveitable crossroads has hit you as it has most. What, who and when is a big question.

Who is your first decision. Any doctor who performs ADRs also does fusion. The converse is not true and opinions of doctors who do not perform both surgeries is likely to be tainted. Three opinions from doctors doing both will give you a better of idea of what needs to be done and when. The skill of your surgeon has a direct bearing on the success of your surgery.

What, if the disc is almost gone, and ADR may not be possible. Again, the skill of your surgeon is the important decision is determining what. However, the longer you wait, you may limit your your choices.

When, when you've had enough. When functioning on a daily basis becomes difficult. When the pain rules your life. Keep in mind that nerve damage is tricky. Will it heal, will it eventually go away?

Personally speaking... I'd get opinions from the known heavy hitters and do the surgery sooner rather than later because I have permanant nerve damage. Others feel living on meds is better than taking the chance that surgery will be successful. Since you have to live with all consequences, this must be your choice, however difficult, which is why we say, educate yourself till the cows come home - and then some.

Good luck, I know it's tough, Dale

[Maria]

Gil,
Have you had a discogram and CT scan? Do you know if the facets are good? Have you had a bone density test to make sure you don't have osteoporosis (yes, males can have it as well)?

RE pain you sound like you're ready. As mentioned think about who you'd want to do your surgery and then maybe when will come to you.

[Gil Denis]

Hi

Thanks for all your replies

I have done all the test MRI, CT scan, bone density o.k, Xrays, Melogram very bad headache, the only one left is disco

Stenum would do L5-S1?

Dr B. would do L5-S1 L4-L5 maybe more

Dr Zegers still no real reply.

Insurance well you know the rest.

Money is tight,still trying to work and support my family.

Trying to get in to see Doctors at University of Salt lake

Thanks Again I will keep you posted

Gil

[Justin]

Hey Gil,

Sorry you are getting to the end of your rope. I also understand about money being tight. Have you thought about being part of a clinical trial? Maybe the Activ-L?

You should inquire about multilevel procedures. I know they are only doing single levels right now, but they might open up a multilevel arm.

1. Christopher Ames, MD University of California San Francisco Hospital San Francisco, CA
2. Domagoj Coric, MD Carolinas Medical Center Charlotte, NC
3. Dzung Dinh, MD OSF St. Francis Peoria, IL
4. Federico Girardi, MD Hospital for Special Surgery New York, NY
5. Glenn Butterman St. John’s Hospital Minneapolis, MN
6. Harel Deutsch, MD Rush University Hospital Chicago, IL
7. Mick Perez-Cruet, MD Providence Hospital Detroit, MI
8. James Yue, MD Yale New Haven Hospital New Haven, CT
9. John Regan, MD Century City Doctors Hospital Los Angeles, CA
10. Rolando Garcia, MD Aventura Hospital Aventura, FL
11. Scott Blumenthal, MD Texas Back Institute Dallas, TX
12. Steve Dennis, MD Hoag Memorial Hospital Newport Beach, CA
13. Vikas Patel, MD University of Colorado Health Science Center Denver, CO

Prospective participants should contact Jill Ellis at 901.201.7894 or
jill.ellis@aesculap.com

Of course, you would have to meet other inclusion criteria.

Clinical Study to Evaluate the Safety and Effectiveness of the Aesculap Activ-L™ Artificial Disc in the Treatment of Degenerative Disc Disease

The study is now being conducted at clinical sites nationwide. For additional information, or study locations, email your request to AISActivL.us@aesculap.com

ClinicalTrials.gov Identifier: NCT00589797

Study ID Numbers: ASC-01

Study Type: Interventional

Study Design: Treatment, Randomized, Single Blind (Subject), Active Control, Parallel Assignment, Safety/Efficacy Study

Official Title: Clinical Study to Evaluate the Safety and Effectiveness of the Aesculap Activ-L™ Artificial Disc in the Treatment of Degenerative Disc Disease

Last Updated: 03/25/2009

EDIT: Bummer...I just saw your previous laminectomy in your signature...it's an exclusion for the trial.

[Kathy]

Gil,
I agree on getting more opinions. As mentioned, an ADR surgeon can do fusions as well. I was told by my surgeon that if he got into surgery and saw something that would make me not a good canidate for ADR, that he would do a fusion (say my facets were worse than expected). At first this scared me, but then, I would rather my surgeon do a fusion and not ADR, rather than do the ADR, only to need a revision later.
What does your MRI report say about L5/S1? What does it say about the other levels?
As you probably know, I was in the Active L clinical trial. Dr. Rolando Garcia in Florida was my surgeon. He and Dr. Yue invented the Active L disc. I really liked him and feel he did a great job on my back. I know he had 5 or 6 spots left open in the trial, at his location. The trial is in it's 3rd year of trials and is wrapping up. He said he was seeing his first patients for the 2 year follow ups and that the trial has been very successful. If you would like any more info, pm me and I would be happy to help.
Last, I will re-post what I posted earlier on the other Cathy's thread, regarding the timing of surgery....
As far as when to have surgery and is your pain bad enough. I think that it depends on the person. Prior to surgery, my pain was usually less than 5 with meds, it would go up to a 9 or 10, if I didn't take meds at the first sign of breakthrough pain. I didn't want to live like this, why should I have to take drugs to be 'normal'? I knew that this had taken a huge toll on me; but never realized how much. My husband told the surgeon, prior to surgery, that this has aged me 10-15 years. He never told me this, I'm sure not wanting to depress me more than I already was. He went on to say how full of life, energy, happiness I was before this and how I am now. I'm sure your loved ones have seen a similar change too.
Not to mention, your facets aren't getting any better. I was lucky, in the sense that all 3 of the surgeons I saw, agreed that my facets were not yet bad enough for ADR surgery; but they all also agreed that I didn't have lots of time left. Plus, the osteoporosis, osteopenia issue. I was also told that my age would be in my favor too. So, it goes to reason that the sooner you do it, the younger you are, the faster you will heal.

[Gil Denis]

Hi Kathy

I agree with you all. But I am no spring chicken 50 is not old and not young

I received another injection at S-1 with small amount of relief follow up on tues 21 maybe an other one?

The last one was the most painful one ever sweats and nearly lost my cookies

Trying to go to University of Utah Hospital for more opinions

Keep you posted

Thank You All

Gil

[Kathy]

Originally Posted by Gil Denis

Hi Kathy
I agree with you all. But I am no spring chicken 50 is not old and not young

I think this is yet another reason to decide to either have surgery now or never. As I have read over and over, many a person has waited to the point of no longer being a canidate. I'm not gonna lie, it's not an easy surgery, it sucked. I prayed to die for 2 days I hurt so bad; but I would do it again.

[Gil Denis]

Hi Kathy and others

I Know I neeed to do it BUT BCBS is #%%^$^etc, and our Budget is well not there, Trying to sell a house and the market sucks, just lost a large project bank not willing to loan construction projects.

Life moves on

I will keep moving forward

Gil

[Kathy]

What about a clinical trial? I know that sounds scary, like a guinea pig. But, the thing is, most if not all of the discs in trials here are and have been being used in Europe for some time. Second, all of us having ADR are 'research' so to speak, because we really don't know alot about the long term, why they work for some and not others, and I could go on and on. I didn't have the money to pay for the surgery either. I didn't have any savings (as it has been exhausted for my care up to that point), don't have enough equity in my home for a home loan (bought it 2 years ago) and no way to borrow the money. That's why I decided to go into a trial. It was a stretch for us to pay for the travel, which I had to pay with a credit card. It's worth checking in to.

[Nairek]

Originally Posted by Kathy Earhart

I think this is yet another reason to decide to either have surgery now or never. As I have read over and over, many a person has waited to the point of no longer being a canidate. I'm not gonna lie, it's not an easy surgery, it sucked. I prayed to die for 2 days I hurt so bad; but I would do it again.

Oh yeah, that's how I felt after surgery until they got my pain under control!

[Gil Denis]

Hi Nariek

Trying to get in contact with Dr Bitan Any suggestions?

also sent you a P.M.

Thanks

Gil

[Nairek]

Gil,

I sent you a PM.

Karin

[Gil Denis]

Hi All

Just had more injections at S-1 and still no help a little at first seemed to taper off. My PM Doc stated that I could receive as many injections as needed to relive the nerve issues. When i asked about tissue damage her reply was no
Still trying to see more Doctors with great experience in spine issues but they seem to all be cut happy its all about paying for the porche

Just keep moving forward

Gil