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Old 05-19-2007, 06:44 AM #1
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Oh Liza Jane.

I read your post with such interest and such caring. You have been so kind to me and listened when I spoke.

Of course all the others have given you good advice, they know what they are talking about. All I can do is nourish your soul. Send you loving hugs and thoughts and.... what I will suggest is that, because are all stressed out, why not light some beautiful candles, put them around the bathroom, (and if you can get in a tub, get in a tub of hot water and soak), or get in the shower and let the hot water fall over you. Use some lavender soap.

The other day, my girlfriend who is having a horrible marriage and her son is an alcoholic, well she wanted to just end it all. I listened and listened as she was downing a glass of wine. That's how SHE copes with her stress.

I told her "put down the glass of wine, get your candles (she has quite a few), go in and take a hot bath and light the candles and let the glow of the candlelight just soothe you. Breathe in the aroma of the candles.

Close you eyes and let your mind drift off.

She did this and told me it was amazing. Of course she still has the same problems, but now she just goes into that place in her head where she goes "away" for a spell.

Thankfully, you have pain meds which you can take advantage of.

When you come to the right decision (the one that is right FOR YOU), hopefully, you'll share it with us and we can send you much love and hugs .

You are in my heart.

Melody
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Old 05-19-2007, 09:41 AM #2
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LizaJane,
I don't have much to add. I'm pretty much of a dumbbell where it comes to any involved surgical things. But I'm sorry that its come to this. Yup, like someone hit you upside the head with a 2x4 (or mallet). I'd been following the posts about the screws loosening and the healing not going well and was wondering what a solution would be. This is the only solution?
Well, my quadriplegic son had a surgical cage placed in his fractured neck within 24 hrs of the accident last Sept. I've seen the x-rays and it looks just like a wire mesh cage, but it helps support his neck (along with the titanium plates & screws) and also allows for bone regrowth. He has some limited ROM in his neck now, but not severe. (I wish it were true for the rest of his body).
LizaJane, I was glad to hear that David was with you to act as a helping hand, but I hope that you'll take a bit of time to mull this over. Decisions like this are incomprehensibly intense & complex. If you do have this done,(rather - when...) I hope that it is with a group or team, rather than place all your trust in just one surgeon. They all have their specialties, and your case is mighty complex. Lotsa things going on. I think you need to gather a surgical team to help you.
I dunno what else to say, except that I'm sorry you are going thru all this.
Climb under that comforter and watch some old Bogart or Carey Grant movies-(the B&W ones- not colorized)- 'zone out' for a while.
I'm thinking of you.
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Old 05-19-2007, 10:02 AM #3
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Default Oh no

I am so sorrry about this. Just one more opinion,or at least gently
sit down and think it through. That Dr. seems so cruel with his words.
And that's so sad,i hope he gets a big ,old ugly, nasty boil on his but.
Good luck,LJ Sue
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Old 05-19-2007, 10:20 AM #4
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Default Hold the Mallet

So sorry that it looks like more surgery in the future - and thank goodness for extra support with you (David) - dont blame you for wanting to curl up and hide....

At least this isnt emergent - you can take some time to prepare - and get second opinnions - I know nothing ever guaranteed in medical world but hopefully this next surgery will do the job..... you know you have all of us to lean on...

Hang in there.... snuggle up with your fuzzy kids and let them share some purrs and realaxation with you....

Thinking about you......
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Old 05-19-2007, 02:44 PM #5
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Default Okay you guys, you helped already..

After spending most of last night vegetating under the covers and watching TV (why is there never anything light to watch when you need it?) I began getting back my ability to remember the bigger picture. It was like I'd forgotten I'd gone to the Mayo Clinic, and today I got out the report the Mayo surgeon had sent me, and re-read it. He'd agreed that there are people who have "late fusion" and that bone growth stimulators can be helpful. He reassured me that the loose screws were not going to do me harm.

He suggested using the stimulator for 3 - 6 months and getting a repeat CT scan to see if fusion was occuring. He said if the pain increased before then, I could have a re-do, and if no fusion occurs and the pain increases, I could get a re-do. He thought I'd end up with surgery, but thought the plan of waiting this out was just fine.

So I'm taking a step back. The pain I have is tolerable. It really is. It's not fun, but I'm okay with it becauses it's mostly about changing positions, twisting, reaching. As soon as I stop, the pain is gone. For instance, I'm not in pain justs now, but as soon as I try to get out of the chair, I will be. My back will be cramped and stiff and hurt. But after a couple of steps, it will be fine again. I can sleep through the night with meds. I can walk up to a mile and half wearing a brace. Overall, as I think about it, it's tolerable. So I'm going to wait this out a bit longer. It's only two months that I've been off the fosamax, steroids, and using the stimulator.

Thank you all so much for helping me to get my center back.

I showed David and his wife the report from Mayo today, and he agreed that it seemed more thought out than what the surgeon said, and laid out a nice plan. So I feel even safer.

Can you imagine---People I have met here have become so real that we've met in the "real world?" It's totally amazing to me.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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Old 05-19-2007, 02:48 PM #6
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I see that he has been in practice a very long time. I think I would consider getting an opinion from someone younger and less likely to be so set in his ways and also who is more open to discussing all of the ramifications of this with you. He is, no doubt, a capable surgeon, but his manner makes him sound like a hard *ss unwilling to consider other alternatives or even talk about them.

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Old 05-19-2007, 02:50 PM #7
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Sue:

You DO have a way with words here.... Heh heh heh...

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Old 05-20-2007, 07:48 PM #8
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Default LizaJane

I'm really sorry that you are battling on so many different fronts w/ no real respite on any. I'll only echo many of the other members that as long as you are not in an immediate emergency amd can live w/ and manage the pain to tolerable levels then to get whatever tests need to be done in the immediate future and then to decide as Dahlek said on what to do and when. Like Glenntaj and Bob said I think that a skilled surgical team would offer you the best opportunity to have your situation addressed right.

Since I'm still new to the forum I probably missed this from one of your earlier posts but would bone morphogenetic protein be at all helpful to you or did it not work - sorry if I'm retracing old steps. I do hope you will get some lasting relief soon - many good thoughts to you.

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Old 05-21-2007, 01:47 AM #9
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Attention frightened and angry and I don't know

As you all know, one of the ways I cope with the pn, and the back, is to learn as much as I can. Well, at some point I think I've learned enough, and I can go forward, and put myself in the doctor's hands. I become the "educated patient" par excellence. And it's still f**ing not enough. Bcause if I'd just looked harder, I would have learned that for several years now it's been clear that I was on a medication which would have prevented healing. And it still might, going forward.

Here's what I've learned since last night. Fosamax is really really awful. Our bones are made up of these two different cells, osteoblasts (builders) and osteoclasts (destroyers) The builders lay down minerals and the destroyers take it away. Bone is this living, breathing, evolving ecosystem that's in perfect harmony until we get older. Then the builders get more tired and can't keep up with the destroyers.

When doctors look at pictures of post-menopausal women, they often see thin bones. If you get a bone density done, they see the thinner bones more clearly. So, they recommend the lady takes Fosamax, and the next year, lo and behold, her bones are thicker and denser again on the films. Everyone is happy.

But after a year or so, she peaks out, and things don't get better. They don't get worse, but they don't get better.

At that point what has happened (and I definitely don't have the details right since I'm just trying to get the overall picture that's relevant, not necessarily biologically accurate) is that a generation of the osteo clan has died off. It's as if the osteoblasts were living in such a dense castle that there wasn't room for babies, and, besides, there were no osteclasts to do their business with and make more baby blasts and clasts.
The number of living breathing worker cells is nil.

The ecosystem is dead. The bone is dense, but it is DEAD. Like a sick woman with a facelift, an onlooker (think doctor) sees something gorgeous---FABULOUS Xrays and density scans-- but inside things are past sick, they're dead.

Into this ecosystem introduce a challenge. Say, the woman needs a tooth pulled. That leaves a hole in her jawbone, which the dentist expects will fill in with bone. Only it doesn't. It gets infected and he scrapes it out a bit more, cleans it up, and comes back adn the hole is BIGGER, not smaller. He tries to scrape and clean it up, and bone just dissolves under his instruments. Her jaw begins to turn to sawdust and basicall falls off. This is called Osteonecrosis of the Jaw. It's a happening thing. Each touch to the bone worsens the situation.

http://courses.washington.edu/bonephys/opjawON.html



Studies will show that women on Fosamax get fewer hip fractures. But other things happen. Other bones break, spontaneously. Legs break, ankles, or, THINK SILVERLADY BILLYE HERE--your foot breaks, then your leg then a vertebrae then your sacrum. And if the doctors want to put in hardware to hold things together, there's really nothing to hold the hardware in place. It all falls apart.

This link shows what has happened to Billye. It's a fulltext article, but skimmable.

http://jcem.endojournals.org/cgi/con.../3/1294?ck=nck

Now onto ME.

I've had years of traetment with Fosamax. In 1999 I was first given it for osteopenia (not even osteoporosis). My rheumi thought I was high risk given I'd been on steroids and have the bodytype for osteoporsos. My bone density improved and I was taken off. At some point I was put back on. I have no idea anymore how much I've been on it or off it, but I do know that I filled a prescription for it in Jan, 2006, prior to my Feb surgery. And I do know that it was continued through December, 2006, when I was told the surgery had failed.

Because that was when I first went to pubmed and put in every drug I'd been on and combined it with fusion to see if any influenced fusion.

There were four animal studies saying it hinderred fusion. No adult reports.
One study clearly showed it hindered fusion but the authors concluded that there was no reason to stop it for spinal fusion. (I assume there was a Merck grant much has happened. I was going to give this 6 - 9 months. The pain is worse and I'd move it up to 6 months, if there was a really good alternative offered by surgery.

But now I'm thinking this: I don't have bones inside me anymore. I have dead brick. Nothing will heal this; there are no living cells to heal me. If I get a larger surgery done, the same thing can happen.

If my worst fear is true, I will be Billye and have her life. Which has more suffering than I can imagine I can endure. She's got a shining light inside that allows her grace under pressure and pain. I really don't want to suffer like her. I can't carry it as well.

I see nothing on line that offers a solution to this problem.

The surgeon did give me one good piece of advice, which I didn't appreciate HOW GOOD on Friday. He asked me to write down the name of bone metabolism specialist and see him before surgery. I told him I didnt' need a bone guy because I dont have osteoporosis and dont' want osteoporosis drugs. But I think he understood. He said nobody really knew how bad Fosmax was until this year (getting his buddies off the hook), and I should see this guy.

I will call and see him ASAP. But omigod am I scared. I feel like not only was I hit over the head with a mallet on Friday, but that after the shock wore off, I discovered that I'd been being hit by mallets daily for years now and just didn't know it. The psychic numbness is leaving, but it's being replaced with terror.

So, yes, it's time to do more of what I do. Get information and try to learn. I hope the bone guy can see me soon. Hope he can make me less scared that what I have in me is just dead cement, ready to crumble if it's drilled into.

Please folks learn this about fosamax. Not good.

http://courses.washington.edu/bonephys/opmovies.html

This is an animation from a medical school class with a really dedicated teacher. She made a fabulous site. I'd suggest people click on the jpg for normal bone, then postmenopausal bone, then biphosphate bone. (that's fosamax) You will be started. The animations are only about 10 seconds each, but they are worth more words than I have used here.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst

Last edited by LizaJane; 05-21-2007 at 02:33 AM.
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Old 05-21-2007, 02:22 AM #10
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Default studies for the interested

1: Spine. 2005 Nov 15;30(22):2516-22.Click here to read Links
Alendronate inhibits spine fusion in a rat model.


Hospital for Special Surgery, New York, New York 10021, USA. huangr@hss.edu

STUDY DESIGN: A posterolateral lumbar fusion model in rats.
OBJECTIVE: To study the effects of alendronate on posterolateral lumbar fusion in rats.

SUMMARY OF BACKGROUND DATA: To our knowledge, there are no studies that show a significant inhibition of manual palpation-assessed spine fusion by alendronate.

METHODS: A total of 75 Sprague-Dawley rats underwent intertransverse fusion with 7-tailbone autograft at L4-L5. Animals received saline (control), alendronate equivalent to human dose (dose1, 5 microg/kg/day), or 10 times the human dose (dose10, 50 microg/kg/day) via subcutaneous osmotic pumps starting the day of surgery. Eight weeks after surgery, animals were euthanized, and fusion was assessed by manual palpation. Radiographic area and optical density of fusion masses were calculated. Histomorphometry was used to assess the percentage area of fusion masses occupied by bone or marrow tissues. RESULTS: Manual palpation fusion rates were lower in alendronate groups (50% and 40%, respectively) than in the control group (95%, P = 0.002). Interobserver and intraobserver kappa values were high (0.97-1.00). There were dose-dependent and statistically significant (P < 0.001) increases in fusion mass area and optical density with increasing alendronate dose. Fusion masses in dose10 animals had significantly higher percent area of bone tissue (P = 0.01) and lower percent area of marrow elements (P < 0.001) when compared to control animals.

CONCLUSIONS: Alendronate inhibits spine fusion in rats. Fusion masses in alendronate-treated animals appeared radiographically larger and denser than those in control animals despite lower fusion rates. Quantitative histomorphometry confirmed that alendronate inhibited bone graft resorption and incorporation. We recommend that patients undergoing spine arthrodesis should not take alendronate until fusion is achieved.

PMID: 16284589 [PubMed - indexed for MEDLINE]
Spine. 2005 May 15;30(10):1116-21.Click here to read Links
The influence of alendronate treatment and bone graft volume on posterior lateral spine fusion in a porcine model.

* Orthopedic Department, Institute for Experimental Clinical Research, Aarhus, Denmark. xueqingyun@hotmail.com

STUDY DESIGN: An experimental animal study with randomized, paired control design was conducted using a porcine model.

OBJECTIVES: The aim of this study was to evaluate the influence of alendronate treatment and the significance of different amounts of bone graft on posterior lateral spine fusion.

SUMMARY OF BACKGROUND DATA: Treatment with bisphosphonates inhibits osteoclast-induced bone resorption and increases bone quality and density. It has been widely used clinically for treatment of osteoporosis. Bisphosphonates have been reported to elongate the callus remodeling process during fracture healing. Bisphosphonate treatment may modify bone graft healing and the remodeling process in spine fusion. The bone resorption phase exists during the healing process. Extensive bone graft resorption could reduce the basis for new bone formation, which could be an important factor for failure of spine fusion. Furthermore, different amounts of initially applied bone graft may influence spine fusion rate and bone graft incorporation process.

METHODS: Twenty-two pigs were included in the study. Eleven pigs in the treatment group received alendronate 10 mg/day p.o. for 3 months after surgery. The other 11 pigs received no bisphosphonate and served as control group. Posterior lateral fusion with the CD Horizon system was performed on the lumbar spine using different amounts of autograft (4 g on one side and 8 g on the other side) in all animals. The fusion was evaluated using radiograph, CT scan, and histomorphometry at 3 months after operation.

RESULTS: There was no statistical difference in either fusion rate or fusion mass volume between the two groups. The fusion rate based on radiograph was 75% on the 8-g autograft side and 45% on the 4-g side (P < 0.05). The mean volume of fusion mass was 2.36 cm3 on the 4-g side and 3.29 cm3 on the 8-g side (P < 0.01). No difference was found in either trabecular bone volume or fusion rate between treatment and control groups using histologic evaluation.The treatment group showed a higher fibrous tissue volume(P < 0.05), higher proportion of woven bone structure(P < 0.001), and lower bone marrow volume (P = 0.088) in the fusion mass. Different amounts of bone graft did not change the tissue composition of the fusion mass.

CONCLUSIONS: Alendronate treatment in this study decreased fusion mass remodeling without inhibiting fusion rate. Increased amounts of autologous bone graft could improve the fusion rate in this experimental spine fusion study.

PMID: 15897823 [PubMed - indexed for MEDLINE]

: Spine J. 2004 Jan-Feb;4(1):36-43. Links
The effect of alendronate sodium on spinal fusion: a rabbit model.


Department of Orthopaedic Surgery and Rehabilitation, Walter Reed Army Medical Center, Washington, DC 20307, USA. Ronald.Lehman@NA.AMEDD.ARMY.MIL

BACKGROUND CONTEXT: Bisphosphonates affect bone remodeling and increase bone mass through the inhibition of osteoclasts. Their effect on osteoblasts, and the balance between osteoblastic and osteoclastic activity on bone turnover and healing, is not completely understood. Specifically, the effect of bisphosphonates on spinal fusion has yet to be determined. With the increasing use of bisphosphonates in the elderly population, this effect needs to be delineated.

PURPOSE: To evaluate the effect of alendronate sodium after an intertransverse process spinal fusion in a rabbit model.

STUDY DESIGN/SETTING: Randomized double-blinded in vivo study of the effect of alendronate sodium in a spinal fusion model.

METHODS: Fifty New Zealand white rabbits underwent a posterolateral L5-L6 intertransverse process arthrodesis with autogenous iliac crest bone graft. The rabbits were then randomly divided into two groups. Group I received 3 cc of saline placebo per oral gavage, and Group II received 200 micrograms (approximately 0.05 mg/kg/day) of alendronate sodium dissolved in 3 cc of saline per day for 8 weeks. Upon completion, the rabbits were sacrificed and the lumbar spines harvested, radiographed and graded for motion across the fusion site with manual palpation. Two independent pathologists then prepared and sectioned each left and right fusion mass. Three random x10 fields were examined and graded for both the cephalad and caudad ends of each section (516 fields). Fusion quality was graded using an established histological scoring scale (score 0 to 7 based on fibrous and bone content of the fusion mass).

RESULTS: Two rabbits died on the day of operation, and 48 rabbits survived the operation. Five additional rabbits died within the first 2 postoperative weeks. Thus, 43 rabbits (21 in Group I, 22 in Group II) completed the 8-week course of treatment. Grading each side separately, 26 of 42 fusion masses (62%) in Group I and 24 of 44 fusion masses (55%) in Group II had radiographic evidence of fusion (p=.76). With gross palpation, 11 of 21 motion segments (52%) in Group I versus 13 of 22 motion segments (59%) in Group II were determined to have a solid fusion (p=.76). Histologically, Group I had a higher median score (6.0; range, 0 to 7 vs. 1.0; range, 0 to 7; p<.0001) and a higher fusion rate (76% vs. 45%; p=.004) than Group II.

CONCLUSIONS: Alendronate sodium appears to inhibit or delay bone fusion in a rabbit model. Presumably, this occurs as a result of uncoupling the balanced osteoclastic and osteoblastic activity inherent to bone healing. These findings suggest that a discontinuance of alendronate sodium postoperatively during the acute fusion period may be warranted.

PMID: 14749192 [PubMed - indexed for MEDLINE]
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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