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  #1  
Old 09-24-2005, 10:59 AM
Melissa Melissa is offline
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Join Date: Oct 2004
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I rarely post, but I've collected so much useful info here but with my pain levels I haven't been doing much reading on line. But I could really use some of your insight....3 weeks ago, well I guess it's going on to 4 weeks now I've had the worst relapse and increased pain than ever. In July my PM suggested he do a DiscTRODE procedure at Levels L3/4 and L4/5 and that he said it would relieve my pain, well I wanted time to looking into the procedure and I had to wait on my disablity insurance to kick in so I scheduled the procedure for Oct. 13th. Well pain levels rose the last 4 weeks I called him crying, I could barely walk to the bathroom without be resovled to tears. The pain in my back, hips and groin is like a vice grip pressure like pain that is 8-9. I can't sit or stand without this pressure and when I walk it goes to about knee level on both sides the inside of my legs are worse, but the pain wraps around my back, and the outside of my hips too. Laying do brings the level to maybe a 7 but the pressure and ache is unrelenting no matter what position I'm in. My PM got me in about a week later and gave me the usually nerve root injections bilaterally, I had my second injection last week and still it has just barely taken the bit away.
My PM order a MRI to see what's going on and being 9 months from my last MRI it's now showing besides DDD at levels 3/4 & 4/5, central bulges at both levels, more narrowing, L4 nerve impingment and facet deterioration at both levels. The last 2 items didn't show on the previous MRI. But for 4 years I tried for ADR and with each passing MRI it's getting worse and worse.
Here's my dilema, I'm tired of the Merry go round, nothing has given me signifigant relief for any amount of time, and now I eat Percoset which I've never taken on a daily basis, I just tolerated the pain, but now can't go with out it. I called my surgeon and waved the white flag, I'm done waiting for ADR and with the facet deterioration it's now hopeless, I'm done with the injections all the time, done. I'm scheduled in Philly for October 24th and my pre-testing, blood drain Oct 11th. And for and hour and 1/2 on my way to see my PM for the 2nd round of nerve root injections I finally felt like there was and end to my nightmare, but when I told my PM I wished to cancel my DiscTRODE, that I decided to have a fusion he flipped out. He told me I'm making an uninformed decision, that I'm making the biggest mistake ever, and that I'm studpid and then reworded to call me uniformed again that I'm making a stupid mistake out of pain. He said I'm not giving him enough time to help me, note he's like my 5th PM doctor, I've been with him for about 4 months, but have been through injections for the last 5 years with nothing long lasting, ESI, facet blocks, RF lesioning, Medial block injections, now nerve root blocks, I'm just tired of being a pin cushion. He says if I have a fusion I wouldn't find any relief just more pain and mostly disablitiy. He told me I should have the DiscTRODE procedure and Facet blocks and that will be my answer for pain relief with no surgery. But I'm still a pin cushion and a lifer at the PM. He has a huge practice, but I just feel like a weekly meal ticket $2,800 per injection to him. After my injection, note this conversation went on while I'm having 2 level bilateral injections done, he had 2 of his staff members come in and try again to change my decison. They said he cares enough and is concerned I going to make the wrong decision and wanted to make sure I think about my decision.
But now he has me double guess my resolve to finally have surgery after 19 years of pain. I never wanted a fusion and tried everything to avoid it, but I'm done fighting, tired of being poked and probed. I'm a single mother and all I want to do is go to work everyday, clean my home, and do things, active things with my son.
I called my surgeon in Philly and his nurse has never heard of the DiscTRODE and but that the surgeon wouldn't do a procedure or recommend surgery if he didn't feel I would recieve relief from it, and she scheduled me an extented appointment to talk to him and said I can back out any time, but that's 2 days before my disctrode.
I don't know what to do, I'm so confused, I just want this cycle over with. I just want a chance to live life at a relatively acceptable pain level, the disctrode might offer me 1-2 years relief, but at what expense, I'll still be getting facet injections and my back will still be Deteriorating, and the injections long term will just cause more damage.
I just want this over with, but am I jumping the gun like my PM says?
If there are any 2 level fusion out there, how are you doing, pain level, activity level? Are you still seeing a PM for injections?

Sorry of rambling such a long post. Any comments would be appreciated.


Melissa
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Waiting....evering so waiting for 2 level ADR L3/4 and L4/5
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  #2  
Old 09-25-2005, 12:56 AM
ans ans is offline
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Whew! M: did you have a discogram? Do they think your facets are shot from looking at your MRI and/or CT-scan.

I'd consult with Mark ******* on this one - just to speak and hear w/he has to say.

He's at (and I'm not involved w/his business): http://www.globalpatientnetwork.com/

He helped me when I was confused.

Good luck, Allan
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Severe, extensive DDD, considered inoperable by Dr. Regan, Lauressen, & some guy at UCLA. Severe foraminal stenosis (guess they can't operate!) and some spinal cord compression that Lauryssen would fix if gets outta hand.
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  #3  
Old 09-25-2005, 11:12 AM
Melissa Melissa is offline
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Join Date: Oct 2004
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Thanks Allan,
I believe I had all the tests out there. I've seen half a dozen Dr.'s and I've had more MRI's than I can count, Xrays, 2 discograms, Mylograms, CT scans, bone scans, and a Dexa scan because of the number of injections I had. The last Bone scan I had it showed some uptake at the facets, but nothing at that time that concerned them and the MRI I had in January the facets looked fine. The latest MRI last week showed detoriation of the facets bilaterly and more endplate changes. Both Disco's I had were about 2 years apart and showed L3/4 and L4/5 as my pain generators.
I'm just so tired I can't explain I just want the nightmare to end, and everytime there was an opportunity to have ADR something through a wrench in the plan. I'm tired of the bandaid approach, I'll done that for almost 5 years with no long lasting relief I just scared to take the leap.
Thanks for your advice,
Take care,
Melissa
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Waiting....evering so waiting for 2 level ADR L3/4 and L4/5
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  #4  
Old 09-25-2005, 01:56 PM
inflexable inflexable is offline
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Melissa,

Wow, I can relate. I exhausted all my appeals for adr. It seemed like in the end it just was not meant to be for me.

I am a 45 year old male who had DDD @ l5-s1, confirmed by MRI's & discogram. I only needed that one level fusion. My main concern was the imobility associated with a fusion. My doc explained to me that I would only lose 2-3% motion overall at the most and would easily be able to pick that up in my hip movement. He also asked me something that hit me and right then I knew I was going to have the fusion. What he said was, so how is your flexion & mobility in that area now and how has it been for the last several years. The answer, not good and my quality of life was seriously diminished.

Incidently, My doc (Dr Cohen, Asst. Prof.of spine surgery @ Johns Hopkins) has done dozens of ADR, but told me that this fusion was still a good option and said he was 95% certain it would have a good outcome for me. He did not try to steer me to adr is my point. He also told me that there are some type of fusions he does not do (ie: Stand alone cages), as he actually RE-DOES alot of them preformed by other docs that are unsuccessful.

I opted for an anterior approach with a cadaver bone and anterior instrumentation. That eliminated the need to "chop" bone from my hip, so I did not have that pain to deal with.

Well it has been 5 weeks post surgery and I can tell you that as soon as I came from surgery I knew he had NAILED IT! The initial pain was GONE.

Then a few weeks into my recovery I had to sneeze, Pre-op that would have caused a considerable amount of sharp pain and if I felt it coming on and had time I would brace for it. Well this time I had no time to brace and to my amazement,I felt NONE of the old pain. Again I was reassured the fix was in.

I was up walking the next morning after surgery and went home within 56 hours of surgery!

I had also expected to be somewhat miserable the first few weeks after surgery, but to my amazement I was not. The first day at home, and each day there after I would walk the neighborhood initially for about 1/4 mile, now up to 2-3 miles.

I am totally convinced I did the right thing, and it worked. I fuly expect nothing less than a 100% recovery. In fact I now will be able to do things I had given up due to the DDD.

Rember ADR is not always a perfect fix?
Seems there are plenty of successful fusions, but usually you only hear of the Unsuccessful ones.

Pray about it, then decide.

Good luck & God bless!
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  #5  
Old 09-25-2005, 02:43 PM
luvmysibe luvmysibe is offline
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Join Date: May 2005
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Greetings Melissa,

Many of us have experienced the struggles of living with longterm chronic pain. Most of the members here have also battled insurance or care providers for ADR authorization. There are many topics relating to ADR approval and the appeals process. If you are still considering ADR, please check out the appeals process guidebook post. Don't settle for fusion if you truly believe ADR is right for you. Keep searching, calling, writing, and asking questions. Oftentimes your persistence pays off. If you are at wit's end and can no longer endure the pain, make certain you are comfortable with your decision. Having a peaceful and positive attitude regarding your upcoming surgery is essential.

Best wishes!
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Crystal
L5/SI Charite
7/18/05 Dr. Howard
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"A smile is contagious, be a carrier ."
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  #6  
Old 09-26-2005, 03:01 PM
NCFUSED NCFUSED is offline
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Melissa,
I have almost the same story as Inflexable, lost all ADR appeals, had Posterior Fusion of L5-S1 on 5/17.

Although I would have preferred to have ADR surgery, I always held fusion as my backup option. IT came to the point where the pain was so bad I made a decision quickly.

The decision (like Inflexable's) was the best of my life. I dont see any limitions in flexabilty right now, and move better than I did before surgery.

My Physical Therapist has had a 2 level fusion years ago and this woman moves around so quickly, I cant see where it causes her any issues (I am hoping I can move as well as she does in a few months).

If you have any questions, Please let me know...

My Prayers and Best Wishes to You!!
__________________
John
Greensboro, NC
DDD L5-S1
Lost all ADR Appeals w/ UHC PLIF Fusion L5-S1 on 5/17/05.
Pars Defect L3-L4
DDD L3-L4 L4-L5
3 LVL Fusion Scheduled 4/08
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  #7  
Old 09-27-2005, 10:02 PM
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Harrison Harrison is offline
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Thanks for helping out Melissa...nice to see such care.

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Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
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  #8  
Old 09-28-2005, 05:24 PM
onecrazyhouse onecrazyhouse is offline
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Melissa,
I have had a 2 level plif in 1998 levels L/4-L/5 L/5-S/1 fused. I went back to work in 3 months totally pain free
2002 work related injury causes level L3/-L/4 to blow out, I have also been thru the mill as you have, injections, meds, facet rhizotomy,etc.etc.
I am having my fusion extended oct.6th. an ADR is not an option,too many negatives due to my body, not because of the ADR
I can tell you that the fusion took away all of the pain that I had since 1992, it was like a light switch being turned off.now I can only hope for the same, I`m giving you the short version due to the pain and trying to get things in order for my surgery, out of courisity who is your DR. in philly? One thing that I found to be most important is the trust that you have in your DR.
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  #9  
Old 09-28-2005, 05:59 PM
bmills bmills is offline
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Melissa, I've seen a PM doctor something like yours. They feel they should be the only one that should decide if you should have surgical intervention. Don't worry about what the PM says.

If you have a good ortho doc, my opinion is you will be tons better after the fusion than you are now. With the level of DDD you are facing, I can't imagine that all the injections in the world will truly resolve it. At this point, it's the surgical intervention that will improve things the most. Some of these PM doctors have a hard time admitting that. Don't let him bother you. Always, go with what your gut is telling you. You've already tried a lot of things and done a lot of research. My suggestion is now go with what is in your gut feeling.

I had several injections that did nothing long term.

Brady
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L5/S1 DDD
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  #10  
Old 09-28-2005, 06:56 PM
onecrazyhouse onecrazyhouse is offline
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I agree with you Brady,I have been down the same road ,it was a doctor who did not want me to get my first surgery, he convinced me that it ould be controlled by pain mgt.
When I went to my current doctor in 1998, he ordered a new mri and after that,the next thing I was doing was setting up my surgery.The best day of my life (at that time)
I had suffered needlessly for so long.Like I said I am living proof that fusions do work!
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