Help! Need a revision - Scared & Very Depressed

[annapurna]

Hang in there Linda. The Lord is walking with you every step of the way. If you pray diligently (including screaming at God), He will guide you in your decisions about your spine and you will have a feeling of peace about your decision - whatever it is.

Personally, having heard Anastatia's story, I don't blame you for wanting to remove a ProDisc that is placed way too anterior. A severe off-placement is a long lever arm for any posterior stabilizing device to counter. If the anterior removal fails, could they try a side-removal with subsequent bone graft reinforcement of the vertebral bodies?

I appreciate the help you gave me before my cervical ADR and hope that at least your neck is doing okay for you?

Don't give up hope in any case! If your pain is being caused by a combo of l3/L4 degeneration, facet arthritis, and general instability, then the fusion and L3/L4 repair could work wonders!

Personally, I'm struggling with facet and/or instability issues at both L4/L5 and L5/S1 five years post-Charite at L5/S1. Add to this a sudden diagnosis of advanced osteoarthritis in both knees and feet, shoulder instability, and chronic elbow tendonitis and I'm honestly losing hope of every being healthy again.

I'm not giving up either, though. You're a great inspiration, Linda! Let's not either one of use give up hope.

Best,
Laura Wurth

[Linda]

Thanks Laura for the encouragement. Tonight I feel like I am going to die. I tried to get up and do a little Christmas baking this afternoon and now from the thighs to my toes I am so swollen that I can not even find my knees or ankles and my feet look deformed. I sure can relate with your statement "I'm honestly losing hope of ever being healthy again." Tonight I hurt so bad everywhere that I feel like I must be 90 years old and ready to die. I am really trying to trust God for an answer. It just seems like it is not coming soon enough for my liking, but then who ever said I had to like what was going on in my "life"? Anyway thanks for the encouragement to hang in there. I needed to hear that tonight. I am so sorry you are having so many struggles and health issues. It really is no fun at all!!! I am still not sure what is going to happen with me. I am suppose to talk to the doctor tomorrow and hopefully he will have some sort of reasonabe plan for helping me. I am very scared because it sounds like a rough surgery and recovery ahead. And I though life was bunches of "fun" now????????
Bless you,
Linda

[Linda]

Laura,
I just noticed I didn't answer your question:
"Don't give up hope in any case! If your pain is being caused by a combo of l3/L4 degeneration, facet arthritis, and general instability, then the fusion and L3/L4 repair could work wonders!

Personally, I'm struggling with facet and/or instability issues at both L4/L5 and L5/S1 five years post-Charite at L5/S1. Add to this a sudden diagnosis of advanced osteoarthritis in both knees and feet, shoulder instability, and chronic elbow tendonitis"

I had a recent discogram which was positive (10) at all 3 levels L5/S1, L4/5 and L3/4. I was told that the placement of the ProDiscs were placed so poorly in a spine with facet arthrosis before the original surgery is causing an incredibly unstable painful spine and it has caused L3/4 to go bad. The facets are not looking good at that level either. I had a discectomy at L3/4 in April which has caused even more damage at that level.
The good news is that my neck is still doing good. But then I think they are in correctly. It makes a big difference I am
anxious to find out what can be done to help give me some pain relief. I feel somedays I am going to lose my mind too! I am so tired of being so drugged for pain all of the time, but every time I try to get off or cut back, the pain becomes too unbearable and all I can think of is wanting to be dead.
Anyway, let's both try to hold on to some hope.

Linda

[Linda]

Hello,
Just a short update to say that due to the holidays and the other doctors living in different time zones, and the busyness of end of year, the needed conference has not taken place. I am going in to see the doctor on January 2nd and I really don't expect for him to know anything yet but I need to talk to him about possible injections and PT for some pain relief. The patches and hydrocodone are not doing it and I am getting weaker as the days go by. I am now hoping that maybe by the middle of January the doctors will have had time to conference and figure out what they are going to do with me. I told him I don't care if it kills me, I just want them out because I feel like I am already dying in pain. He isn't real excited about doing a surgery that will kill me...imagine that??? I am nothing but a huge financial liability for my family and this is not fair to them. If they can't fix me then I hope the surgery kills me. Sorry to be so negative. I guess all the pain meds have taken their toll on me. All I can do is cry and wish I was dead. Anyway, best wishes for a better. healthier New Year for all of you.

Linda

[joeytoey]

Hello Linda,

I feel your pain and I know it's no fun. I watch my wife everyday suffering with her back. All I can say is hang in there and get the revision. I would hope you can get a second and maybe a third opinion from other doctors. I know it hurts and stinks to have to wait for something to happen. But you want to make sure the next choice you make is going to be a good choice. It looks like a fusion is in the cards for sure. I've talked to and heard about numerous folks who have great relief from fusion after previous procedures have failed. I think your prospects are good, but get those other opinions. There's a few docs here in So Calif that you may want to consider visiting, if you can.

My wife and I are hopeful that the best will happen for you. You sound like a very nice person.

Best wishes to you and God bless.

[Linda]

Thanks Joeytoey for the concern and care you are showing me. I know my Doctor has done many Charite revisions but not but a couple of ProDisc revisions. What doctors are you looking at for your wife's revision? I will keep her in my prayers. Please pray that I find out something soon or get some more pain relief somehow. Best wishes for a much better New Year in 2008. God Bless you both!
Linda

L4/5 L5/S1 Prodisks placed incorrectly in 2002 ADR trials
C5/6 C6/7 ProDisks in 2005 so far so good with these

[joeytoey]

Hey Linda, We're looking at all the Docs for revision!!! That's the problem. No "best remedy standard" yet exists to revise a well placed one-level Charite with post-op facet degradation and chronic pain from it. The docs are experimenting on us at the moment. I have not found evidence yet that the docs are collaborating with each other to work toward a "best remedy standard". They are all trying their own ideas. It's very frustrating. I'm looking for that "warm fuzzy feeling" and haven't found it yet, you know what I mean!

Of course, every condition will need a different sort of revision, most likely. Your ADR's are misplaced, some folks have subsidence, ossification, etc. etc.

So, we have to do a lot of research and legwork. I may just have to interview all the docs who have experience with ADR revisions and get a printout of their patients outcomes, if they'll give me all the data that is. However tedious it is, I'll just have to do it. So, help me find the already revised ADR patients out there (one at a time is ok) and I'll organize some sort of charting system. Hopefully we can learn how the revisions are fairing for the particular post-ADR complications. I don't know what else to do. I certainly don't want to roll dice.

Warm wishes to you,
wifey and me

[KL Aguilar]

Dear Linda,

I have been following both Anastasia's and your stories and I want you to know that I am praying for you. I saw Dr. Regan twice and I was very impressed by him; I would have had surgery with him, but he isn't on my insurance company's list and I would've had to pay out of pocket, which isn't possible. Anyway, I have high hopes that he can steer your doctor in the right directions.

Anastasia seems to be making steady but slow progress from her revision surgery although she seems to no longer be posting on this site.

[Terry]

Linda:

My heart goes out for you. I hope an answer is coming shortly that will repair your spine and get you back to a quality life.

You are in my thoughts and prayers.

Terry Newton

[Mariaa]

Linda,
After my 2nd spine surgery which was a huge and horrible failure back in '92 I was left with pain that drove me out of my mind. I had wished to be six feet under on a regular basis, probably as often as it's stated that a male thinks of sexual relations!

The horrible gnawing burning pain I was left with bilaterally in my lower extremities bilaterally (and in my buttocks) lasted nearly 5 years. Back then Elavil was the standard drug of choice for this type of pain and it helped to some degree but nothing like the Neurontin I've been using since '98.

When the gnawing burning pain finally diminished, more pain came from DDD I think and rebulging discs plus whatever else. I was bedridden most of the time and had to stop working as a Nurse Practitioner.

My PCP never saw me when I wasn't crying and yet I refused a psych referral because it was *just pain*.. I also refused a PM referral at first but she convinced me to go and when I finally did I was surprised I was actually prescribed pain medication (finally, 9 years post failed surgery).

It took another nearly 5 years to have as great a year as I did last year. I would have never expected with my spine to live even anything resembling a near normal life in terms of simple things like taking walks, being intimate, going out to eat and social sitting (to a degree).

I know you have a bad thing going on there with your spine however I want to encourage you to think that whatever you have today doesn't necessarily mean you will have it tomorrow, the next day, the next year and so forth.

In other words, have hope. I know pain is such an incredible emotional drain that we just feel life is hopeless when the pain is so horrible but I do want to tell you that where you are today isn't necessarily where you will be in the future so please just hang in there and fight the good fight to hang on.

Believe me, I personally know how tough this can be and I personally know that life can just amaze one when least expected. I used to be told back in the 90's I should just get used to having that level of pain and it would never change and the usual verbage but truthfully no one can say that for sure.

When I was feeling my most vunerable and hopeless I read a book by the author Melody Beattie ~ Reasons to Live (something like this) and I mean I identified with what was written so much, clung to it, and the words just seemed to reach out to me and hug me.

Ok, I've written far more than you probably want to read or maybe have read before as I've written about my lovely (not) failed surgical results and long haul with low back pain ad nauseum~ just wanted to let you know I care how you feel and hope there are going to be better days like there have been for me nearly steadily now for over a year~