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  #1  
Old 10-07-2008, 06:01 PM
Molly Molly is offline
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Join Date: Oct 2008
Posts: 5
Question New Member - TDR L5-S1 Charite, facing possible fusion

Hello,

I'm new to this forum & am very glad to have discovered such a great resource. I have a question regarding total disc replacement revision/removal surgery.

Background:

I started having back & left leg pain in Nov. 2003 & it slowly progressed enough to warrant a Dr. visit. Dr. C ordered P/T & injections, which, at that point, only aggravated the situation. It got so bad that I was literally begging for surgery. Dr. C wasn't totally sure what my condition was, but he did see a herniation @ L5-S1 on MRI.

At this point, TDR was still in trial, so I opted for a Microdiskectomy/Laminotomy at L5/S1 in June 2004. Dr. C wasn't totally convinced this would relieve the pain & mentioned I might have to do TDR if this surgery didn't work. I woke up from surgery w/ out leg pain, which was wonderful! But pain relief didn't last long - I ended up in ER 1 1/2 weeks later b/c pain & spasms were so intense. Follow-up MRI showed no sign of re-herniation, so I was back at stage 1 again. I was diagnosed w/ DDD & decided at this point to wait for TDR to be approved.

Fast forward to January 25, 2005: TDR Surgery to replace disc @ L5-S1 was performed. (Charite was implanted) Although it was a long recovery, I was optimistic that this procedure would help alleviate pain & help me get off of pain meds. I only had 8 sessions of P/T immediately after surgery due to lowsy insurance plan. Then at 3 months post-op, I found a therapist that would accept $20/session initially for 3 months, then $30/month. I faithfully went 2-3 times a week for about a year. I finally started feeling stronger & was discharged.

Fast forward to January 2008: I'm STILL having pain in low back & left leg (although leg pain isn't quite as intense as it was in 2004), and am now having to take 20 mg oxycontnin (twice daily) as well as Tramadol & Lyrica for the pain. I went to my 3-year follow-up w/ Dr. C & told him I'm still having pain. He said that I might have to get a fusion after all, and ordered MRI.

After I got MRI, I took films to a new Dr. (Dr. M) to get a 2nd opinion. He ordered a discogram & myelogram. After looking at results for tests, Dr. M said I should seriously consider having a fusion since the facets around the artificial disc were degenerating as well. I mentioned that Dr. C said I might have to get fusion & he told me if I go ahead w/ surgery through Dr. C, to be sure that the artificial disc is removed prior to fusion.

Next I go back to Dr. C w/ MRI, myelo & disco results. Dr. C said if I opt to go for fusion, that he recommends NOT removing artificial disc & fusing around it. Dr. C also doesn't see the same degeneration in facets that Dr. M saw.

Facet block was ordered & I had it done in August 2008. The block provided no relief & in fact it actually made me hurt worse for a few weeks. Leg pain increased by a couple levels & so did low back pain. Arrggghhhh!!!

My PM Dr. suggested I go see a new Dr., who has performed & still performs many new TDR's, to get a 3rd opinion about getting a fusion & whether to remove artificial disc or not.

I have an apt. w/ surgeon #3 scheduled for Oct. 10, 2008 to discuss my options.


Question

Has anyone had to get a fusion after TDR? Was the artificial disc removed first? Any advice you can give will be helpful. I am only 37 years old & I DO NOT want to have to rely on pain meds for the rest of my life just to get through the day. Plus I'd really like to get my fully functional brain back so I can think clearly again.

Thanks!
- Molly
__________________
---------------------------------------------------
Nov. 24, 2008, L5-S1 Fusion (leaving Charite in), Frisco
Jan 25, 2005, L5-S1 ADR Charite in Frisco, TX
DDD on L4-5; L5-S1
June 2004, Microdiskectomy/Laminotomy at L5/S1
April 2004, 1st visit to Orthopedic Surgeon
Jan 2004, 1st visit to chiropractor
Nov 2003, Pain started gradually (no accident or fall)
MRI, Epidural Blocks, Facet Injections, Rhizotomy, Lumbar Discogram & Myelogram
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  #2  
Old 10-08-2008, 01:03 AM
kimmers kimmers is offline
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Join Date: Jan 2008
Posts: 554
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Molly,

I had ADR at L4/5 on March 11, 2008 and have not had problems at that level. There are some people on here that need revisions or had revisions so be patient and I am sure someone can chime in.

I do know what my doctor told me before ADR surgery. He told me if I needed a revision if ADR did not work, I would undergo a posterior fusion.


Good luck,

Kimmers
__________________
hurt back lifting, herniated disc at L4/L5. DDD
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  #3  
Old 10-08-2008, 03:54 AM
OsteoRach OsteoRach is offline
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Join Date: Nov 2007
Posts: 121
Default

hi there,

first off, sorry you are still suffering pain.

all spinal surgery is major surgery however from my readings the proposition of removing an adr is life threatening (given possible scar tissues from the original anterior surgery adhering to your aorta or inferior vena cava - disturb the scar tissue and you may have massive haemorrhage - a lateral approach to the spinal segment is now being performed by some surgeons when adr revision with removal of adr is required). some surgeons, and patients, have had to take the risk of anterior revision surgery given the quality of life / risk of progression of signs/symptoms if no surgery was performed, outweighed the risks of doing the surgery. given this however, it is my understanding that if possible, surgeons will posteriorly fuse the segment and leave the adr in place as there is less risk and if there is no inherent problem with leaving the adr in place then why subject the patient to the possble risks.

afew questions you may have already considered:
with regard to the adr / diagnosis. have the drs adequately explored the adjacent levels to ensure they are not causing your pain? what were your myelogram / discogram results? if the diagnostic facet block was accurate and it did not alleviate the symptoms, what are your doctors proposing is the pain source given that you no longer have a disc at that level (if it is predominate back pain that you are considering further surgery for)?

Rachel
__________________
L4/5, L5/S1 disc prolapses post wakeboarding accident Oct 06 (grade 5 and grade 4 annular disruption, repectively). 2X epidural steroid injections, lots of drugs and conservative treatment, positive discogram. Surgery May 08 (L4/5 A-Mav disc replacement and L5/S1 ALIF)
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  #4  
Old 10-08-2008, 11:33 AM
Molly Molly is offline
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Join Date: Oct 2008
Posts: 5
Post

Hi Rachel,

Thanks for the reply. I have heard the same about ADR removal, which is why I want to weigh all my options before I do anything. Both surgeons did say they'd do the lateral approach. But the question that stays in the back of my mind is if there's a chance I'd have to go through yet another surgery if I didn't have the disc removed, why not just go for the full surgery to begin with?

The dicogram & myelogram results both came back clear. The Dr. that did my first one didn't accept my new insurance, so I had to go to someone else. What's puzzling is that my 1st discogram, which was back in 2004, showed L4/L5 as a pain generator, but L5/S1 was by far the biggest pain generator. This year's discogram did not show L4/L5 as a pain generator. Myelogram came back clear, whatever that means. (I suppose it's a good thing)

No one really knows exactly what is causing the pain, which is absolutely frustrating on my part. Since I got some pain relief from ADR for about a year or so, I guess L5/S1 was a contributing pain source, but not the only one. Part of me wonders if I shouldn't just continue taking pain meds until something newer comes along. But the part of me is saying do something now before it gets even worse & more scar tissue forms, etc.

Also, if I do decide to leave the disc in, wouldn't that defeat the purpose of having a fusion? Or even further degenerate the facets? I'm just really confused. I don't want to make the wrong choice again. I guess I need to wait & see what Dr. 3 says on Friday.

Thanks again for your reply!

Molly
__________________
---------------------------------------------------
Nov. 24, 2008, L5-S1 Fusion (leaving Charite in), Frisco
Jan 25, 2005, L5-S1 ADR Charite in Frisco, TX
DDD on L4-5; L5-S1
June 2004, Microdiskectomy/Laminotomy at L5/S1
April 2004, 1st visit to Orthopedic Surgeon
Jan 2004, 1st visit to chiropractor
Nov 2003, Pain started gradually (no accident or fall)
MRI, Epidural Blocks, Facet Injections, Rhizotomy, Lumbar Discogram & Myelogram
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  #5  
Old 10-08-2008, 04:29 PM
ZorroSF ZorroSF is offline
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Join Date: Oct 2006
Posts: 303
Default

I'll admit I didn't read your post word for word, but here's my advice.

Doctors won't tell you if they are or aren't trained in certain procedures. Instead they will advise for or against a procedure without giving you a reason why. in your case you want the disc removed. I suggest you contact a Charity rep and find a doctor in the USA who DOES have training not only in Charity removal, but highly successful removals. If at all possible don't get that thing fused into place. There's isn't enough statistics on fusing a disc in situe. From what I have read (be skeptical), it doesn't have very positive results.

This is the same advice I recommend to prodisc patients too.

Find out what your problem is before you decide on revision surgery. Typically it has to do with onset scoliosis and facet degeneration resulting in pinched nerves or Spondylolisthesis. Much of this could've happend long before you had the ADR in the first place. Which is why I can't stress enough that patients NEED to get as many painful tests as possible pre-op to determine just what is the real pain generator and if there are any other discs involved in your spinal degeneration. One MRI just doesn't cut it.

You may need yet another surgery after your charity removal to fix other issues. Be prepared and don't give up. These surgeries are quite traumatic and require a long recovery period that includes a genius physical therapist who has dealt with every issue in the book and can tailor a regimen to suit your specific issues and not make them worse.
__________________
***********************
1/2006 DDD L5/S1

Prodisc St. Mary's 12/2006 not diagnosed properly pre-op and now have DDD L4/L5, facet calcification L5-S1/L4-L5, mild scoliosis and left knee pain. DDD: C3 through C6

Last edited by ZorroSF; 10-08-2008 at 04:39 PM.
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  #6  
Old 10-08-2008, 07:55 PM
Harrison's Avatar
Harrison Harrison is offline
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Join Date: Oct 2004
Posts: 7,010
Default Rate of Degeneration and Disease

Nice posts you all!

Molly, I'd be happy to speak with you in the coming days to embellish a bit on these posts thoughtful too. There's a lot to consider -- and Zorro raises an uncomfortable point (pun intended!) about trying to get to the pain generator. IMHO, undiagnosed disease (not just DDD) is an overlooked culprit.

Forgive me if you mentioned this, but what kind of shape were your facets in before surgery? And do you have any way of knowing the rate of degeneration in the 2-3 years preceding surgery? Did you have a series of imaging studies?
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"Harrison" - info (at) adrsupport.org
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
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
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  #7  
Old 10-14-2008, 03:34 AM
will will is offline
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Join Date: Sep 2008
Posts: 4
Default In the same boat

Hello Molly,

Just to let you know that I am in exactly the same posistion as you. I had charite disc fitted, and encountered the same problems. My nuerosurgeon now says best option is to fuse, bolt and screw things together, whilst leaving the disc in. He is very reluctant to go ahead though, and his best advice was to try to learn to live with your pain, this made me laugh as what do they think you have been doing for the last nine years.

also the comment made by one of the people replying to your post was true as well, I too am doped up to the eyeballs on Oxycontin and Oxynorm tablets, and i too would like my brain to function again.

Let me know if you want any advice or to swop horror stories.

Will
__________________
Work related injury in 1999 to lower back, conservative treatment for five years whilst battling workers compensation insurer.Injury was classified as disc protusion at L5/S1.
in september 2004 underwent disc replacement at L5/S1 level. Since then have suffered chronic pain, have had cortico steriod injections ttwice, have had three radio frequency denervation procedures and several nerve block injections
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  #8  
Old 10-24-2008, 05:06 PM
Molly Molly is offline
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Join Date: Oct 2008
Posts: 5
Default Surgery is scheduled for Nov. 23, 2008

Hi Will,

It's nice to know that there others out there who are dealing with the same issues. Although I wouldn't wish this upon anyone!

I've made a decision... I'm going in for a fusion on Nov. 23, 2008. I saw a 3rd Dr. (Dr. Zigler at TX Back Institute) about a week ago. He said my facets are not strong enough to hold the disc in @ L5/S1 & that I needed to get a fusion at that level. Of course I already knew that part, so I asked if he's leave the disk in. He said yes to leave it in & he'll just, as you put it "bolt and screw things together". If I'm still having pain, which is possible b/c L4/L5 is degenerative, but not bad enough to do anything about it now. It's more than likely that I'll need an TDR at L4/L5 sometime in the future.

While this isn't exactly what I wanted to hear, I already knew most of that in the back of mind. I do feel a slight sense of relief having made this decision, since I've been struggling for so long w/ it. Since I sit at a desk all day, I did buy one those orthopedic foam cushions w/ the tail bone area cut out & it does give me partial relief throughout the day. I'll keep you posted on recovery, etc. as I can.

- Molly
__________________
---------------------------------------------------
Nov. 24, 2008, L5-S1 Fusion (leaving Charite in), Frisco
Jan 25, 2005, L5-S1 ADR Charite in Frisco, TX
DDD on L4-5; L5-S1
June 2004, Microdiskectomy/Laminotomy at L5/S1
April 2004, 1st visit to Orthopedic Surgeon
Jan 2004, 1st visit to chiropractor
Nov 2003, Pain started gradually (no accident or fall)
MRI, Epidural Blocks, Facet Injections, Rhizotomy, Lumbar Discogram & Myelogram
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  #9  
Old 10-29-2008, 05:01 AM
kimmers kimmers is offline
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Join Date: Jan 2008
Posts: 554
Smile

Molly,

It seems like you have made an informed decision. I know Dr. Zigler has lots of experience with ADRs and is one of the top docs in the U.S.

I have seen studies where the outcomes were better if you take the disc out, but I would be worried about the complications inherent with that.
My doc said he would fuse with disc left in if ADR didn't help.
So you went to one of the top docs and that was his opinion too.
Also I have seen studies where fusing L5/S1 can be more effective than putting an ADR there. Jury is still out on that.

Watch the sitting--puts so much pressure on your spine.
Surgery time will be here before you know it. I know it is scary but you will make it through it and we are here to support you through your journey.
Finally, you have your answers.
Good luck with the upcoming surgery. Soon you will be on the otherside again.

K
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hurt back lifting, herniated disc at L4/L5. DDD
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  #10  
Old 10-29-2008, 04:00 PM
Molly Molly is offline
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Join Date: Oct 2008
Posts: 5
Smile

Thanks for the reinforcement, Kimmers.

I think the jury is still out on a lot in regards to ADR, but as long as they keep trying new procedures & learning from the ones that fail, the better off we all are.

The toughest part right now is the waiting. But you're right... it will be here before I know it. It truly is comforting to have such great support from members like you in this forum.

I'll keep you posted on any new details, etc.

Good luck in your journey as well!

- Molly
__________________
---------------------------------------------------
Nov. 24, 2008, L5-S1 Fusion (leaving Charite in), Frisco
Jan 25, 2005, L5-S1 ADR Charite in Frisco, TX
DDD on L4-5; L5-S1
June 2004, Microdiskectomy/Laminotomy at L5/S1
April 2004, 1st visit to Orthopedic Surgeon
Jan 2004, 1st visit to chiropractor
Nov 2003, Pain started gradually (no accident or fall)
MRI, Epidural Blocks, Facet Injections, Rhizotomy, Lumbar Discogram & Myelogram
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