Help! Need a revision - Scared & Very Depressed

[Linda]

Hello,
I haven't posted for awhile. Just to update, it has now been confirmed by 3 doctors that my lumbar ProDiscs are incorrectly placed and are causing me some excruciatingly painful problems. I am so disillusioned with the whole medical profession because I have been lied to for over 5 years now by Dr. Rashbaum from TBI and although Dr. Zigler has admitted that my discs are not placed correctly, he won't admit that the placement is what is causing my issues although Dr. Bertagnoli and Dr. Peloza both say that they are causing me all kinds of issues. It has caused L3/4 to go bad and they have caused a sacral and an ileac/sacral problem along with extreme pain in my left knee caused by walking weird to keep the pain level down in my low back. I have basically been in bed most of the time since the end of September 2006 because it hurts too bad to be up for any length of time even with the fentanyl patches that have been a constant companion in my life since last September. I was told by TBI that I needed another disc at L3/4 back in April 007, but they could not do it since I already had 2 lumbar levels and 2 cervical levels, so they did a discectomy which has not brought me any relief at all. I recently had a 3rd discogram (ouch!) and L3/4, L4/5, and L5/S1 were all positive pain generators. I now have a really bad problem at L3/4 and my facets are shot but I learned that they were shot before I ever had my first ADR surgery at L4/5-S1 back in 2002 and should never have been considered a candidate for ADR in the first place because of the added burden ADR places on the facets. I am so angry, but there is nothing I can do about it. I went to see Dr. Zigler the principal investigator in the ProDisc study I was in, and he said, "Yes, they are in incorrectly but that is not what is causing your issues. Lots of people have them in wrong and they aren't having all the pain issues." To that I replied, "Well, I am having the issues what is causing it?" He said he didn't have a clue and I better get used to living in pain and on the fentanyl pain patch and just learn to press through the pain. I wanted to hit him, but I just left the office in tears. I then sent my films and all my records to Dr. Bertagnoli/Fenk-Mayer and also my pain management doctor wanted me to get Dr. Peloza's opinion. Both doctors agreed that the discs at L4/5 and L5/S1 are not only in crooked but were placed anteriorly instead of posteriorly so the posterior next to the spine that takes all the load of the body has nothing there to take the load. It has caused a severe sacral problem among other things. Both doctors said that it was far too risky to remove the ProDiscs since they have been in 5 years. They said the scarring would cause a potentially life-threatening situation. Dr. Bertagnoli had a couple of ideas that were similar to what Dr. Peloza was thinking. I can't afford to go back to Germany, however. The first trip wiped me out financially in 2005 for my cervical disks and the last year of medical bills has been insurrmountable. Dr. Peloza said my case was very unique and asked if he could take my films and records to an international research meeting he was attending the first part of November. Of course I said that he could. I am supposed to go back and see him a week from Friday. Please anyone with information on Dr. Peloza? He was voted one of the top surgeons in the Dallas area by his peers but he said I now have 3 levels involved and what he is proposing has never been done before so that is why he wanted to run it by 30 other physicians. I am really scared and depressed beyond imagination. Some days it doesn't seem worth it to keep fighting to try to stay alive. I am so tired of being in severe pain. It has worn me down and I feel like my life is worthless. I am losing hope that I will ever get my life back. I feel like I have been betrayed by and lied to from the very people that are supposed to help me-doctors and it is very hard for me to trust anyone right now. Unless something changes from the research meeting, the doctor is talking about putting in some kind of new non fusion stabilization at the L4/5-L5/S1 level and putting some type of device in at L3/4 to fix it. He said that there have been some problems with the stabilization at the L5/S1 level with the screws coming loose which would mean even more surgery. This will be my 7th spinal surgery not including too many surgical procedures back there to count now. Any thoughts, comments, or encouraging words? Any help would be appreciated. Dr. Peloza is very personable and has a great bedside manner but what does anyone else know about him? Thanks!
Blessings to all of you,
Linda
ProDisc L4/5-L5/S1 FDA trials 2002 TBI
ProDisc C5/6-C6/7 Bogen, Germany 2005

[LBP]

you probaly already know this but I believe Dr. Peloza is a Maverick guy. Figuring out individual dr bias/connections vs having your best interest as first priority vs experience is sooooo difficult and a very scary process.

Whether his ties to Maverick/Medtronic means anything significant... for your situation...who knows.

You will be able to find articles about him if you google him. Hopefully someone will chime in about a personal exprience. It's not a name you hear frequently on this site as an ADR surgeon, not sure why other than the fact that Maverick trials never seemed to take off and it's still not approved by FDA, so I think we just hear more about the main prodisc and charite trial surgeons.

good luck!

[Blair]

If it were me, I wouldnt want to do something that has never been done before. There are just so many things that could happen. Could they do a three level fusion?

[Harrison]

Linda, sorry about the continued problems. I left a message or 2 for you recently. Perhaps we can continue our discussion on other pathologies that may be causing inflammatory pain? I understand if you don't though -- at least you know I care.

[Terry]

Linda:

I cannot offer any help in your questions.

I feel very badly for you though and understand your struggles. I understand the feeling of betrayal from doctors who abandon you after they make mistakes.

I know there is a tiny glimmer of hope left as you would not be asking for help here or seeing other surgeons for solutions. Hang on to that glimmer of hope for all it's worth and it will get you through the painful times ahead until a surgical solution is offered to fix what has been done.

Let the support here be a rock for you to lean on and help you along the way.

Many of us, myself included, have been in that; "I just want to die to end my suffering" state. Hang in there as it sounds like there may be a solution coming your way.

I will pray for you.

Terry Newton

[Job13]

Dearest Linda,
There is no point for me to tell you WHAT and HOW I felt after reading your post... My voice cracked several times and I had to stop to wait for my tears to subside while I was trying to read it to my husband.
This statement would be hilarious if it wasnt so crude "...Lots of people have them in wrong and they aren't having all the pain issues." That is a "real" scientific approach of a high level doctor! That makes me sick and there is no other way to say it.
I would agree with Blair...Do you know how this stabilization system even calls?
Please, hang in there!
Will be praying for you and guidance in this hard decision.

[LBP]

Linda,

Since no one has pipped in specifically about Dr. Peloza yet, i have an idea. Have you consulted with any of the surgeons listed in the 2 different facet related clinical trials just to get their feedback even though you wouldn't be in their trial. Would they be able to offer a different perspective? Have you taked to Dr. Sachs at TBI? He's in the TFAS trials. But you might prefer speaking with one the other facet trial surgeons outside of TBI. see the clinical trials tab of spine health at: http://www.spine-health.com/research/res01.html

When you feel up to it, please keep us posted during these hard times. The information you learn about what can be done for you may help educate us all on folow up strategies when things go wrong, or pre surgery considerations and needed tests. Specifically, knowing what you know now, what should you have asked and looked at re your facets before hand? Is there a specific test, machine, or questions to ask to ensure everyone is looking at what needs to be looked at before agreeing to ADR. What exactly were your pain symptoms before surgery re radiating pains.

I believe it is very difficult for a patient to sort out all sources of pain if there are multiple sources. I believe tests only work best for the most dominating pain source and as you eliminate the worst one, the next worse one sufaces.

I've become so much more AWARE of my body and medical treatments over time. Early on before I even heard of a diskogram or ADr, I had a facet injection. I didn't even know I had annular tears at the time of my facet injections.

I had minimul relief for a short time with facet injections and it was considered a failure. Now looking back at some notes I took along the way, I noticed I made a note that I could sleep on my stomach for the first time in a long time. I forgot about that, because I can no longer sleep on my stomach without limbs going numb so there must have been some relief? plus before the facet I tested + on the FARBER test, then negative on this test after the facet injections. but back then it was considered a failure because it didn't help with the main source of pain symptoms, so I went on to ESI injections before having a diskogram and learing of my annual tears. The focus has since been on the tears and need for ADR and no one has gone back to the facets (to my knowledge) It's never come up in any of my 4 surgeon consults. hmm

So now hearing yours and Ana's stories, I wonder if the facets should be revisited with a closer eye before moving forward with ADR. And which if any ADR is in fact best if there are any facet issues...should ADR be absolutely outruled? Does it depend. I thought some people had improved facets after ADR? And most importantly what are they looking for to see "bad facets" do you have your films on cd to post here?

I really hope you find some answers and get relief soon!

[Debs]

Dearest Linda, I'm over in the UK and I read your posting last night. Very strangely I also read this yesterday in the paper.

One night a man had a dream. He dreamt he was walking along a sandy beach with the Lord. Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand: one belonging to him and the other to the Lord. When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints in the sand. He also noticed that this only happened at the very lowest and saddest times in his life. This really bothered him and he questioned the Lord about it.
'Lord, you said that once I decided to follow You, You'd walk with me all the way. But I have noticed that during the most troublesome times of my life, there is only one set of footprints in the sand. I don't understand why, when I needed You most, You would leave me'.

The Lord replied,

'My precious child, I love you and I would never leave you. During your times of trial and suffering when you see only one set of footprints in the sand, it was then that I carried you.'

Be strong Linda - you can do it. On the 19th I have 3 level cervical ADR - the first in the UK to have 3 ! When I look behind me I'm sure ther will be one set of footprints.
Love Debs

[Harrison]

Debs, well said. I've seen this poetic story before, and always think about it when walking on the beach. I never tire of its lesson(s).

LBP, right on as usual. Thx for the detailed insights.

Job & Terry, your heartfelt expression of support and love is always like a fresh air!

[Lyndsay]

Linda I am so sad to read your story, especially with how the Dr's have let you down & am with Anastasia about the comment of how "lots of people have them in wrong but aren't having all the pain issues" ~ how arrogant & cold hearted is that comment!!

I too am looking at revision surgery along with some extra's so can completely understand how scared you're feeling right now.

I'm cynically coming to the conclusion that some of these surgeons are more interested in getting discs in & their number tally up as a way of recruiting even more patients & sod the consequences of whether the patient is really a suitable candidate!! I fear it isn't going to be long before people start to sue surgeons over this!

Please update us when you can & know that I will keep you in my thoughts.

Sending a very gentle {{{hug}}}

Take care & please feel free to PM me any time for a chat