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  #1  
Old 07-09-2011, 06:58 AM
ssb776 ssb776 is offline
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Join Date: May 2011
Posts: 5
Red face Continuing my journey.....

Hello!

I had an MRI in sept 2009 which showed a large L4-L5 disc herniation compressing my sciatic nerve. Unfortunately my first doc didn’t do anything but put me in pt, which made it worse. I had four epidural injections which also did not help and made the pain worse. In December 2009 I got to the point where I was waking up at 4 am feeling like my leg was on fire, living on pain meds to take the edge off and barely walking. I was losing the ability to rotate my ankle, could not put my socks on or get dressed without help and my left leg was losing feeling and muscle. I was finally referred to a surgeon on 12/16/09 and had a microdiscectomy on 12/18/09. My surgery went well and the leg pain was gone when I woke up from surgery; although I did have some minor nerve damage. I recovered well and began to strengthen my core and leg being mindful of my body position.

All was great until July of 2010 when some of the pain came back and I could not get up from a sitting position without help. My doc figured it was a nerve flair up, and ordered a cortisone injection which helped with the pain. So I went about my life again pain free thinking I was fine. In January of 2011 the pain in my back and leg came back….. so I waited a month to see if it was in my head, but it didn’t go away and I was losing strength in my left leg again. Doc ordered an MRI which showed that once again my L4-L5 disc herniated. This time it is larger and more in the center and to the right. They are recommending fusion period the end.

I asked about replacement and was told discs could not be replaced and fusion was my only option. I didn’t like this answer and now here I am. I have done a lot of reading on the subject and it all makes sense. I have looked for docs in the Atlanta area and have not been impressed……
I have read about doctors in Texas, Germany, Boston and a few other places doing disc replacements but not a whole lot in the southeast.

Plus there are so many discs out there……
I am 35 and have a lot of years to live with the decision I make, so I would like to have a doctor who knows what they are doing. I just received all of my MRI and Xray film and now I have no idea where to start. I'm looking forward to talking with others out there!

~Sarah
__________________
9/2009 -Large L4/L5 herniation diagnosed
4 steroid injections from 9/2009-12/2009 with no results
L4/L5 microdiscectomy 12/2009, surgery went well
7/2010 pain came back, had steroid injection
2/2011 pain came back
MRI showed L4/L5 herniation larger than the first
fusion suggested, looking at options


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  #2  
Old 07-09-2011, 09:21 PM
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Harrison Harrison is offline
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Join Date: Oct 2004
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Question

Hi Sarah, welcome. I hope we can help you with your next steps. Have you found your way around the online community? Browsed around, searched? There are many posts and stories on spine surgery and ADR going back to 2004 -- when I had my disc replacement.

You got the MRI and XRays...on CD? You should also request and read the radiologist report. Read it carefully, then read it again. Look up the words that you don't understand, then cross-reference them here using the search feature.

That's a good start.
__________________
"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
Donate www.arthropatient.org/about/donate
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  #3  
Old 07-10-2011, 08:39 AM
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jss jss is offline
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Sarah,

You certainly have a daunting task ahead of you. I didn't log the amount of research I did before my double ADR, but was hundreds of hours over an eighteen month period. And congratulations on not accepting your doctor's statement that discs can't be replaced. In many cases ADR is a far superior treatment to fusion. BTW:my PCP didn't know ADR existed either.

Do you have any idea if your insurance company will cover ADR?

Good luck, Jeff
__________________
C4/5 - ACDF in 2000
C5/6 - ACDF in 2002
C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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  #4  
Old 07-13-2011, 04:01 AM
ssb776 ssb776 is offline
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Join Date: May 2011
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Thank you for the advice regarding my radiology reports. As I went back through them I realized I have more going on that just my L4/L5 herniation (which I knew) but that is the main source of my pain & problems. I have DDD from T12-S1 and various problems at each level, but no one had really talked to me about that as the L4/L5 was the focus.

My insurance will cover a single level replacement and of course fusion..... now I need to talk to some doctors and sort out my choices. I understand this is a huge undertaking that takes many many hours of research and a commitment to improving my health. It is a long road and being in a place with no medical support is a lonely and frightening feeling. Most average healthy people have no idea what this is like and couldn’t begin to imagine the pain involved on a day to day basis. I feel lucky the injection has given me some relief this time around. It allows me to do the needed research and hopefully make an educated decision. At the moment my pain is mild, but I know what is coming and do not want to live on injections for the rest of my life.


The choosing a doctor part makes me a little nervous, anyone I see will involve travel, which also means recovering away from home with two elementary school aged children. Is it best to contact multiple doctors? I feel silly asking questions like this which is why it took me 4 months to actually introduce myself after discovering this awesome site.

Thanks again for your support and advice.
~Sb

__________________
9/2009 -Large L4/L5 herniation diagnosed
4 steroid injections from 9/2009-12/2009 with no results
L4/L5 microdiscectomy 12/2009, surgery went well
7/2010 pain came back, had steroid injection
2/2011 pain came back
MRI showed L4/L5 herniation larger than the first
fusion suggested, looking at options


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  #5  
Old 07-13-2011, 08:38 AM
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jss jss is offline
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Posts: 1,411
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Sarah,

It is important to get multiple opinions before choosing a surgical option.

Before my double ADR I contacted and received opinions from six surgeons. Five of them gave me the same surgical prescription, which gave me confidence that the surgery I was going to have was the right path to choose. If you have an unusually complex case, or a situation that borders on receiving multiple treatments, receiving multiple differing opinions will show you the different options that are available.

I would encourage you to seek opinions until a clear best choice begins to emerge.

Good luck, Jeff
__________________
C4/5 - ACDF in 2000
C5/6 - ACDF in 2002
C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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  #6  
Old 07-13-2011, 11:40 AM
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Jstuckey Jstuckey is offline
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Posts: 305
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I had 5 surgeon opinions, 1 local and 4 overseas. All 5 were different, but after speaking with each of them either by email or phone consultation, I now have a good feeling about the decision I made. Some seemed overly aggressive and dismissive of my contraindications (facet damage), one seemed to be pushing his latest toy which would end up as a fusion when the day is done, and one stood out as truly interested in MY best options after thoroughly discussing my reports.
Insurance said they'd pay for a three level fusion. I said no thanks. Will pay back the bank of mom and dad for a few years and get a great surgery instead.
__________________
Joey Sue - 50 years old
9/28/2011: Hybrid STALIF TT interbody fusion at L5-S1 and M6-L ADR L4-5 with Nick Boeree, UK - forever grateful to you Nick! Still doing great.
Prior to the fix: Severe DDD L4-5 and L5-S1 with moderate facet degen at L5-S1, but only mild facet degeneration at L4-5.
http://healthyback2011.blogspot.com/
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  #7  
Old 07-14-2011, 08:16 AM
ssb776 ssb776 is offline
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Join Date: May 2011
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Well then I had better get busy since I'm at 0 opinions besides my own.

This is all so overwhelming, so much to process at once, I'm afraid I have gotten in over my head. It seems like most doctors would be pushing their own agenda as most of them have co invented something for this purpose. I was under care at a fantastic medical facility and they were still pushing their own agenda with fusion because no one had studied replacement.

It just seems like it would be difficult to see if a doctor was really out for your best interest via email. Maybe the phone, but email seems hard. I understand that they don't really need to "see" me sitting in front of them to evaluate my situation but I feel like I need to "see" them to get a feel for what their intentions are. Last time I made the decision to have surgery I was in so much pain that they could have told me that cutting off my ear would make it better and i would have agreed. This last time around I had scheduled a fusion for late May 2011, but canceled after reading about replacement (and I wasn't in pain). I guess I am scared to death about making the right decision, then following through with the decision.... Every time I think about what is in store for me I feel the need to vomit. I am hoping that feeling will pass as I continue. I am sure everyone has had this feeling and I need to count my blessings that I found this site and have so many people with similar situations to talk to...

Thanks again for your input, it is all very helpful. I wish you the best with your surgery!!
~Sb
__________________
9/2009 -Large L4/L5 herniation diagnosed
4 steroid injections from 9/2009-12/2009 with no results
L4/L5 microdiscectomy 12/2009, surgery went well
7/2010 pain came back, had steroid injection
2/2011 pain came back
MRI showed L4/L5 herniation larger than the first
fusion suggested, looking at options



Last edited by ssb776; 07-14-2011 at 08:30 AM. Reason: forgot something
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  #8  
Old 07-14-2011, 09:12 AM
Jstuckey's Avatar
Jstuckey Jstuckey is offline
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Join Date: Nov 2010
Posts: 305
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To be fair, I think any of the surgeons would do a phone consultation if asked, but the initial treatment plans and my questions answered via email by some of them lead me to believe a phone consultation wasn't necessary.... I wasn't buying what they were selling to even discuss it further.

The phone consultation that I did have with Mr Boeree was 45 minutes long (vs. a 15 minute live consult with my local surgeon - who never laid a hand on me. Would have been the same to talk to him on the phone too). I think that was the most productive conversation I've ever had with a doctor, and he was 4000 miles away! I even had a family friend, who is a family practice doctor, sit in on the consultation call and write down questions for me to ask.

Anyway, that is my experience with the subject. My "local" is pretty small town, so now that I know more, I would be scared to death to let him install an ADR. I doubt he's done very many.

The well-known surgeons definitely have their preferences, which is normal for any medical treatment, but with insurance problems, FDA restrictions, experience factors... it does make for some muddy decision making!

My advice is get as much info as you can and ask at least 5 surgeons for opinions. The overseas opinions are relatively no cost, and these surgeons are much more experienced than most US surgeons. If nothing else, you've learned something to apply to your local discussions.
__________________
Joey Sue - 50 years old
9/28/2011: Hybrid STALIF TT interbody fusion at L5-S1 and M6-L ADR L4-5 with Nick Boeree, UK - forever grateful to you Nick! Still doing great.
Prior to the fix: Severe DDD L4-5 and L5-S1 with moderate facet degen at L5-S1, but only mild facet degeneration at L4-5.
http://healthyback2011.blogspot.com/
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  #9  
Old 07-14-2011, 10:59 AM
ssb776 ssb776 is offline
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Join Date: May 2011
Posts: 5
Red face

My husband and I made a decision after my disc re-herniated that we would be willing to go where we need to for surgery, even if it means overseas. Locally I have very little options. I have heard about a doc in Charlotte who does ADR, but I can find very little info on him..... I guess I got a bad taste in my mouth after my doctor here was so negative regarding ADR and I really don't need any negative energy. I am certain I will travel outside of my home state.

I am sure I can find a list of questions to ask on top of my own questions. I just keep going back to the whole thing being scary. With two young children I don't want to live like this anymore, on the other hand I don't want to end up worse.
I can't thank you enough for all of your support!!

~Sb
__________________
9/2009 -Large L4/L5 herniation diagnosed
4 steroid injections from 9/2009-12/2009 with no results
L4/L5 microdiscectomy 12/2009, surgery went well
7/2010 pain came back, had steroid injection
2/2011 pain came back
MRI showed L4/L5 herniation larger than the first
fusion suggested, looking at options


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  #10  
Old 07-14-2011, 11:48 AM
Jstuckey's Avatar
Jstuckey Jstuckey is offline
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Join Date: Nov 2010
Posts: 305
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Totally understand the fear thing. I'd never heard of ADR at the start of this, but luckily a casual friend had a good experience with a cervical ADR and told me about this site and told me to avoid fusion at all costs. Then, my family doctor had a patient that had 3 levels done successfully in Germany. I was able to get connected to him and hear his story at the beginning of my research. All of these pieces together with daily research kept chipping away at the fear.

People are shocked and want to know why the heck I'm going to England for surgery... I've shortened the story to about 2 minutes now! When they ask if I'm scared, I say, "Not only is it not an option to get the advanced procedures and hardware in the US, I'd be afraid to get it done in Indiana."

Good luck... keep asking questions!
__________________
Joey Sue - 50 years old
9/28/2011: Hybrid STALIF TT interbody fusion at L5-S1 and M6-L ADR L4-5 with Nick Boeree, UK - forever grateful to you Nick! Still doing great.
Prior to the fix: Severe DDD L4-5 and L5-S1 with moderate facet degen at L5-S1, but only mild facet degeneration at L4-5.
http://healthyback2011.blogspot.com/
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