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The Big File All issues not easily categorized in the above forums are here. Comments on general health, diet, "getting comfortable," and more are here.


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Old 08-28-2007, 08:57 PM
QueenB2411 QueenB2411 is offline
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Hello, my name is Hollyn (yes the 'n' is supposed to be there), I am a 30yo married mother of three boys. I want to start by saying how excited I am to have found this support group, it was the bright light in a very dark week for me.

My back pain all started kinda sporadically on and off while I was pregnant with my oldest child, 10yrs ago. I did not think much of it but looking back now I probably should have had it looked into. For almost 8years I went on like this. I would have debilitating back pain come at me suddenly for no apparent reason, would stay for a few days then vanish as fast as it had appeared.
My turning point occurred a few months after my youngest child was born. I was in the kitchen starting dinner and out of nowhere my back pain started again. I figured after a couple days it would go away again...like usual. Well it has been almost 2years now and not one day have I been without this pain.

After a couple months I realized I was getting worse and not better everyday. There were days I could not move in bed, forget trying to even get out of bed because the pain was so severe. It felt like someone was ripping my spine apart with the slightest movement. I also noticed that when I was able to walk my legs would buckle under me much of the time making me very unstable. I ended up in the ER after my husband saw me crawling on the floor in tears. I had my first MRI done a couple weeks later, and less than 2 weeks after that was given the first of two epidural steroid injections. I was in physical therapy, using a TENS unit and taking high doses of advil and vicodin to help with the inflammation and pain.

We then relocated in the midst of all of this. From MN to upstate NY, we are from the east coast so were pleased to be moving within driving distance to family. I started physical therapy up again right away, going a couple times a week. It felt good to be active in a controlled environment but after weekly PT sessions for over a year I was not feeling any better. My pain was not going away but I was getting adjusted to it because as a mom of three young kids I had no choice. My poor kids know that I am in pain daily, they can tell by the way I move or the grimace on my face and the fact that I cannot do much of anything with them. I am so tired of them having to hear about my back problems and limitation. And I especially hate when they get into trouble for not helping me when I am having really bad pain days, I want them to be kids and not feel responsible for my care.

Within the last couple months I have given up taking Celebrex, I did not feel any change during the months I was on it. I had facet injections that helped me slightly better for all of three days and then it was back to my usual self. I had another MRI that showed my back has only gotten worse since the last MRI a year ago, so I have stopped going to physical therapy. I have enough trouble affording the copay when I go, if it is not helping why bother wasting my money and time. I have DDD and a herniation at he L5-S1 level and have been told I need to ahve it replaced. My L4-L5 level does not look good either, I have a discography scheduled in a couple weeks to determine if that one needs to be replaced as well. Then I have the problem of having BCBS for insurance, it has been made very clear to me they will not cover this procedure cause they are stuck in the dark ages and consider it experimental and fusion a much better option. Well at my age I refuse to have fusion done and my doctor agrees saying he would not perform it on me. So now I am trying to appeal and am looking into getting insurance with Aetna long enough to have this surgery done.

I NMES/TENS unit which my insurance refuses to cover also, and a back brace that they did not cover either. And I am starting to feel like a druggie with the vicodin I take for pain, it hardly takes the pain away but makes me tired enough to not care for a couple hours. I have been given the lidoderm patch as well... I think that would be good if I needed to perform surgery on myself at home to numb the skin for the initial cut aside from that it does nothing to help me.

Living like this is hell and the fact that so many insurance companies think it best that I stay like this and suffer it sick. I chose to be a young mom so I could be active with my kids and I am the complete opposite thanks to my back. My husband jokes that I will be in a wheelchair in a couple years at the rate I am going. We laugh about it because there is no other option, but the thought it a scary one.

Anyway I guess I have typed more than enough for now. I look forward to meeting others like myself and seeing what has worked for some of you. I think this support group is wonderful, it is obviously very much needed by a lot of people that suffer the same pain.

__________________
~ Hollyn
30yo mother of 3
L4-L5 DDD
L5-S1 DDD and herniation
Physical Therapy for 2 yrs, 2 epidural injections, 1 facet injection, discogram on 9/20/07 confirms 2 level ADR needed.
I wear a back brace and use a NMES/TENS unit in addition to taki
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  #2  
Old 08-29-2007, 03:05 AM
tmont tmont is offline
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Hollyn (that's a really pretty name; where's it from?)

Welcome, and sorry you need to be here. You'll find a lot of info and personal experiences and opinions here on ADR and fusion; if I can give you a bit of advice: what you need to do is really try and take the time to study all sides of treatment options before you firmly plant your flag in one or the other:

Quote:
it has been made very clear to me they will not cover this procedure cause they are stuck in the dark ages and consider it experimental and fusion a much better option. Well at my age I refuse to have fusion done and my doctor agrees saying he would not perform it on me.
Surgeon's opinions on the real efficiency of ADR vary widely. Your doc may be 'for' it based on some convincing studies and positive experiences; others are more cautious about the models on the market today due to essentially four things in my research experience:

1) seeing a worrisome number of ADR recipients experiencing the same or worse pain post-op;

2) patients who feel better initially, and whose pain returns after time (you'll find a few cases here);

3) revision surgery (in case of failure) is at this date a largely dangerous and even life-threatening procedure;

4) the real life of the device(s) is undetermined for the moment. For someone who is young such as yourself, that could be a concern, for the above reason (3). In vivo testing generally puts the life at a minimum of 40 years, but (for ex, on the Charite, but I've heard the same lifespan on other models, ProDisc, Mobi):

"Paul McAfee, a Johnson & Johnson consultant with a financial interest in the discs, indicated that he would be satisfied with far less. "Well, I hope they will last 40 years. But "honestly, to talk to the patients, 10 years is (a) pretty good outcome."

http://www.thestreet.com/stocks/meli.../10223280.html

Granted, McAfee is known for his reserved stance on ADR; others you will see in articles seem completely 'for' ADR and certain discs. However, both 'pro' and 'con' (Adr) surgeons are accused of bias, and of favoring and promoting the info, technique, and device(s) they want the public to adopt.

Your insurance company is...an insurance company. Probably cheap and definitely self-interested. They don't want to pay and their excuse might be convenient for them, but it doesn't mean that they're necessarily in the dark ages on ADR. Many surgeons do still consider it experimental and are waiting for more data and next-generation technology before heading down that road. I live in Europe and work with a neurosurgeon who does cervical ADR but who for the moment will not do lumbar, for the reasons cited above. With 20 years of good experience in ALIF (anterior lumbar interbody fusion), and new progress in TLIF (transformaminal approach), he still considers lumbar fusion a safer and more sure method of pain relief for patients.

My goal here isn't to terrify you or turn you off ADR, but to show you that while it's a promising technique there are some very real concerns and some very real risks--and failures-- despite a seemingly 'pro-ADR' environment here and elsewhere (by that I mean you'll generally see more posts from patients who are recovering well, than those who aren't doing so well or who are worse). You need to know of these risks BEFORE surgery; not after. So as a patient, you've really got to do a lot of your own research and above all, soul-searching to decide which treatment--and which prosthesis if you choose ADR-- you feel the most comfortable with.

Not an easy decision. But this place is great for info and support and if it's any consolation, we've all spent nights staring at the ceiling wondering which way is the 'right way' . I'm heading for a cervical ADR myself, by the way--but putting it off as long as I can to see what else might develop in this rapid-moving industry.

Good luck,

Trace
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  #3  
Old 08-29-2007, 09:03 AM
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Harrison Harrison is offline
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Trace raises some excellent points, though the “crusty” article from Ms. Davis praising Dr Rosen (a Medtronic consultant) is as one-sided as any “side” can be!

That said, it would be nice to move away from taking positions purely on anecdotal assessments. I do see some progress in this area, but the studies all have their own biases (most would agree, eh?) and are designed by one organization. Question: why isn’t NASS or SAS executing a global survey!?

Though this study is small, it is a 10 year study – and it’s FRENCH! And the results do correlate with others (e.g. 5 year studies) past and present (and to be posted):

Publication: Long-term Results of One-Level Lumbar Arthroplasty
http://adrsupport.org/eve/forums/a/t...1/m/3051084932

But back to my key position: spend copious amounts of time scrutinizing the qualifications/disqualifications for patient selection. I’ve talked about this frequently here, and I will not be getting off my soapbox for a long, long time….

In the meantime, we need to work with device mfrs and doctors to further enhance these qualifications…more later.
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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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  #4  
Old 08-29-2007, 09:48 AM
tmont tmont is offline
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Quote:
Trace raises some excellent points, though the “crusty” article from Ms. Davis praising Dr Rosen (a Medtronic consultant) is as one-sided as any “side” can be!

That said, it would be nice to move away from taking positions purely on anecdotal assessments.
Yup--it's crusty and it's one-sided all right. But then again, so are many 'pro-adr' articles. I believe I said that bias was common on both sides of the issue. I included it for MCAfee's (a well-respected surgeon in the field)comment on device longevity, not for Rosen's remarks on the CHARITE.

No 'postion' being taken here: the less-crusty H.A.S. report I posted on Arthroplasty Central has some overall satisfactory conclusions on the use of ADR (including CHARITE and PRODISC) and I'll be translating and posting those results as soon as I can as well...

However, I can't agree with your second statement: the issues raised in points one thru four are no more 'anecdotal' than any 'pro-adr' arguments or success stories out there. Try telling a failed ADR case he's an 'anecdote'. Those are real assessments made by real surgeons, based on real experiences with real people and concerns over what is yet unknown and unmastered concerning ADR.

You know as well as anyone that I'm a fusion patient strongly considering ADR--see signature--and also that I'm a strong believer that ALL arguments FOR and AGAINST should be readily and equally available for all patients, especially newbies. To each his/her soapbox.

Trace

PS am I the only one that sees a REALLY NASTY WORD every time you use the abbreviation 'mfrs' for manufacturers? Is it Freudian?
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  #5  
Old 09-03-2007, 06:55 AM
QueenB2411 QueenB2411 is offline
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Wow thank you for such a wonderful response. To add a bit more about my original post. My husband, my mother and myself have all done a lot of online research and asking around to come to the conclusion that fusion is not right for me. I will not lie I am terrified of any back surgery, fusion or ADR, but I also know how I function and feel day to day and know that something needs to be done.
I have heard of the 40yr lifespan which I did express my concern about to the doctor. I have seen more than one doctor over this as well... one thinks long term physical therapy is the way to manage it, another thinks possibly fusion and another thinks ADR. So the doctors I have seen are not pushing me in any particular direction because they all have differing opinions.

I appreciated your input.
~Hollyn

Oh my name comes from no where in particular. My parents liked the sound of Holland then thought it too harsh so softened it to Hollyn. I hated having a unique name as a child, now I love it because it is unique. Although I do have to correct people a lot on how to say it or spell it.
__________________
~ Hollyn
30yo mother of 3
L4-L5 DDD
L5-S1 DDD and herniation
Physical Therapy for 2 yrs, 2 epidural injections, 1 facet injection, discogram on 9/20/07 confirms 2 level ADR needed.
I wear a back brace and use a NMES/TENS unit in addition to taki
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  #6  
Old 09-03-2007, 10:35 AM
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Terry Terry is offline
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Hollyn:

You left beautiful Minnesota to move to N.Y.?

Oh, I see, upstate New York. More beautiful up there than New York in general.

Ah......The land of Garrison Keillor, Lutefisk, The Guthrie Theater, The I.D.S. Building, Minnehaha and Theodore Wirth Parkways, The Mall of America, and the list goes on. Family does matter though and it's important to be close. We only see ours in North St. Paul at Christmas time.....sigh! I have thousands of miles ridden on the roads and bike paths of Minnesota. Plus I graduated from the University of Minnesota and did my Graduate studies at Western.

I'm glad you found this site. I felt the same as you about fusion. I had two lumbar and two cervical discs installed. I am 10 months out tomorrow and the jury is still out. I keep feeling better every day though I did have a little scoliosis and facet arthritis pre-surgery that may have made me not an ideal candidate. On the other hand I was in top shape prior to the surgery which helped immensely.

Trace brings up good points from the surgeon she works with about the lumbar area. I have had 2 sets of epidurals in the lumbar area since the surgery to settle down the pain. I am very active with putting in over 1,400 miles on my bicycle this season so far. I am older than you by 20 years and am also concerned about disc longevity. Of course if I live long enough to wear them out in 40 years I'll be 90 and probably not as worried about them.

I would encourage you to continue to do research so that, no matter what, you'll be satisfied with the decision you made.

Hang in there. I'll say hi to Minnesota for you when I go there at Christmas to be with my wife's family.

Terry Newton
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1980 ruptured L4-L5
1988 ruptured SI-L5
1990 ruptured C5-C6
1994 ruptured C6-C7
1995 Hemi-Laminectomy C5-C6, C6-C7 Mayo Clinic
Bicycle Accident 2004
MRI, EMG, Facet Injections, Epidural Blocks, Lumbar Discogram.
Stenum Hospital Surgery November 4, 2006
Prestige Disc C5-C6, C6-C7
Maverick Disc S1-L5, L4-L5
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