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    Old 05-25-2006, 05:34 AM   #31
    lumbarjackswife
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    Re: Calling for Shoreline's help

    Shoreline,

    Hi I am Dan's wife , he was banned from the boards for some reason. He thinks because he started a thread calling you a doc .

    He told me to tell you he started off with spondy, and are you saying it's not stable, that it's still slipping ? He see's his surgeon next week . We really don't know what way to go with his back. Do the surgery ? Stay with therapy ?? He don't want this thing to really get out of hand with more surgery's more scar tissue ect...ect..it's a tough call to make but he's been having some severe pain with this , and would like to resolve the problem.

    Sounds like you been having a time with your back and there's nothing the they can do for you ? Hope things get better for you . Dan tell's me you been alot of help for him and to say thanks. He's thinking they might let him back on here soon .
    GOD BLESS YOU

    Sherri

     
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    Old 05-25-2006, 12:35 PM   #32
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    Re: Calling for Shoreline's help

    Dave,

    When he injured his back at work he was dx for spondylolisthesis , this is why they did the fusion . Is his MRI saying it's still moving ? I'm sorry if he got you confused . He was walking down the steps today and almost fell because he got a sharp pain from his back down to the top of his foot from stepping to hard . He say's his leg gets weak when he's on it for a while At therapy he sneezed and it hurt him more. The therapist put heat and some electro thing on him . Were tired of it and could only imagine how you feel.

    Take care Dave,

    Sherri

     
    Old 05-25-2006, 12:52 PM   #33
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    Re: Calling for Shoreline's help

    Hey Sheri, I thought the previous fusion was L4/5, if that's the case the latest MRI says he has Grade 1 spondy at L5/S1 now. This means if they corected a problem at 4/5, the problem is now at L5/S1. It just caused a problem one level down that's a little harder to deal with plus the scar tissue and tumors that can be adressed and possibly that's the cause of the nerve pain. If it's from a tumor, cleaning that up as well may relieve more pain than I would expect from a revision and lengthening of his fusion.
    Hope to catch you on line, Dave

    Last edited by Shoreline; 05-25-2006 at 12:57 PM.

     
    Old 05-26-2006, 11:43 AM   #34
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    Re: Calling for Shoreline's help

    Hi Dave,

    I was just looking at his x-rays from 2004 it say's

    Full Result: Again the pedical screws are noted at the L4-5 levels with short segment harrington rods.

    Ok now here is a 2006 MRI

    There is a transitonal vertebra at the lumbarsacral junction. Without the entire spine series, accrurate numbering is not possible. I will utilize the same numbering sequence utilized on a CT scan performed July5,2005. This study reported that the patient's prior laminectomy and spinal fusion was at the L5-S1 level..

    Now I was looking at another Dr's report and it say's
    ( worker's comp D'r wrote )
    "Diagnostic testing demonstrated his having a grade 1 L4-5 spondylolisthesis.

    My GOD what is going on here ? We're getting different fusion levels here.
    He has his doctor visit on the 6th of June.

    Hope I didn't confuse you Dave.
    Thanks for your help. Sherri

     
    Old 05-26-2006, 12:38 PM   #35
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    Re: Calling for Shoreline's help

    Hi Sherry, Corect numbering of the ower lumbar levels is usually only a problem when someone has 6 lumbar vertabrea. I have myself which isn't unusual if your husband is 6' or taller. S1 is part of the sacrum though, which is pretty easy to identify. S1 is part of the sacral iliac joint, the iliums or elephant ears on the side of the hips attach to S1 and have a small piece of cartlidge at the joint. Fusing to the sacrum aslo puts more stress on the SI joints which can be painful and cause recurrent subluxation "popped out of whack" it feels like you have a knife in the joint.

    You can probably count down from the last rib bearing vertabrea which is T12, normally there are 5 lumbar vertabrea and then the sacrum. S1 is part of the sacrum and fused to S2/3/4/5 all composing the sacrum , so there won't be a disc below S1.

    I guess the final test will be the doc when he puts them up to a light, But S1 isn't difficult to identify for several other reasons. Let me know what the doc says if you can.
    Take care, Dave

    Last edited by Shoreline; 05-26-2006 at 12:54 PM.

     
    Old 05-30-2006, 09:35 AM   #36
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    Re: Calling for Shoreline's help

    Hi Dave, Yes we will let you know what the doctor say's Tuesday. Thanks for your knoweldge.
    Sherri

     
    Old 06-02-2006, 06:00 AM   #37
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    Re: Calling for Shoreline's help

    Quote:
    Originally Posted by shawley
    Dave,

    Got my results back just now ,

    Impression:
    1.Area of marrow replacement involving the left posterior ileum presumably reflecting a incidental hemangioma. ( whatever that is )

    2.additional focal fatty rest , hemangioma involving the posterior aspect of the L3 vertebral body.

    3. Transition vertebra with numbering scheme as described above.

    4.Grade 1 spondylolisthesis of L5 on S1. There are postsurgical changes of a posterior laminectomy and spinal fusion. There is mild epidural fibrosis surrounding the thecal sac at this level.

    5. No evidence of disc herniation. No eveidence of significant spinal or foraminal stenosis.

    What does this all mean ? I'm sure my doctor will know more but from this what are they saying ? I'm ok ?
    Thanks for your help..

    Dan
    Hi Dave,

    It's been a while since I bugged you so here we go.

    After Looking at Dan's MRI it say's nothing about his fusion healing or not. Can they see that on a MRI ? I am sure I read a post where a woman mentioned the MRI said somthing about her bone fusing.

    After all the lies he's been through it's hard to trust any doctor.

    Thanks for your help once again Dave.

    Sherri

     
    Old 06-03-2006, 04:53 PM   #38
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    Re: Calling for Shoreline's help

    Hi Sherri, I hope Dan is feeling well. From what I can tell from this MRI report is they did a laminectomy which is removing the spinous process and cutting through or removing the lamina of the L5 vertabrea, ďThe back or posterior hook and portion of the vertebraeĒ This allows access to trim a disc and prepare for fusing L5-S1. What's strange is there is no mention of the hardware whether it's in alignment or in intact or even exists? It is possible that they were only able to reduce a a larger slip down to grade 1 slippage which would be less than 25% out of alignement with vertabrea or in his case the sacrum? You would have to compare a pre op report to see if a significant change was made. Or get a copy of the surgical report. Itís possible the fusion has failed and the hardware isnít holding things in alignment and thatís why he still has spondy at a level that is supposed to be fused.

    As far as any test showing a fusion is successful, there isn't any. At least not that Iím aware of unless there is some new diagnostic equipment that looks at bone at the cellular level. I've read posts where patients were told based on different diagnostics that a fusion looks good and is growing. The truth of the matter is, all they can tell is if the donor material is in place and the hardware is holding the spine in alignment particularly within a year of surgery. There is no test that shows if the implanted bone is alive and thriving or simply dead and sitting there waiting to be absorbed. Xrays donít show this, nor do any other test but people want to believe their doc because it seems like something they should know.

    However, if the fusion was growing or solid, you wouldn't break hardware and you would think they would have fused him with L5 centered correctly over S1 so he wouldnít have spondy. Idealy the bone should grow and take over the load bearing the hardware does in the beginning prior to fusing. but there is no mention of hardware in that report.

    All 3 of my surgeons considered my surgery a success until my spine slipped out of place and hardware snapped and moved enough to be seen in a XRay. All the donar bone except in one spot has been reabsorbed after 6 years.The good news was everything I had suspected and reported was no longer just in my head once it could be seen on a diagnostic. When they went in to revise the fusion,the bone the docs said was alive and solid flaked out like dried fish.

    I can think of at least a half dozen flat out lies I have been told by docs simply because the docs didn't have an answer or were not comfortable when cornered. So they make crap up and where not supposed to call our surgeons liars even when it's completely obvious.

    The fusion material will have a different radiological signal than actual bone and after several years the shadows of material can be seen when you compare one film to another with some time between films. Thatís likely why they want to wait a year to decide if the fusion failed and may be causing problems and itís not one of the other problems going on in Dans back

    I can't tell you the fusion has failed based on the report, but the doc can't tell you the fusion is a success either. He does have arachnoiditis "scar tissue wrapping around the dura and squeezingĒ, He does have some slippage at L5/S1 evident by the grade 1 spondy.He does have tumors that can be causing the pain. But few docs will operate on grade 1 spondy unless accompanied by gross neurological problems like loss of reflexes, bowel or bladder function, muscle atrophy, foot drop, etc.

    It is possible the tumors are causing a nerve compression or additional pain and surgery for this would give them the opportunity to check and or revise his fusion.

    With the tumors and the arachnoiditis, nobody knows for sure what is causing the pain. It could be from those problems alone but surgery for arachnoiditis takes huge risk of damaging the thecal sac and spinal cord. Tumors can be removed and if they are pressing on nerves then he may likely benefit from further surgery.

    An honest doc will tell you there is no test to determine if the fusion is solid or not but I takes a full year to reach maximum benefit or full growth. Even bone scans that show hot spots aren't effective because the fusion sight will show hot spots if growth is taking place and it will show hot spots if deterioration is taking place.

    If it were me and the pain wasnít driving me to rush a decision because it was no longer bearable, I would get several more surgical opinions. Something seems odd that a doc will do surgery but not know what heís going in to fix, not that once heís opened up, everything may become very clear, something about this surgeon gives me a bad vibe.

    Nerve pain is extremely hard to treat, it just doesnít respond the way other pain does to opiates. But with the new philosophies and meds available, hopefully he can get the pain under control long enough to get a few more opinions. So he can make a decision based on common sense and consensus among surgeons rather than doing anything or the only thing being offered to relieve unbearable pain.

    With a degenerative problem, although there is no actual cap on the amount of pain meds one can take, there is a ceiling on the side effects he can tolerate and you are both comfortable with. You donít want to spend the next 20 years watching him nod off, even if being sedated sounds good at this point. Iím sure it gets old and thatís not living a functional life.

    I see things that look odd in the MRI and can probably be addressed surgically, but not everything can always be fixed and fixing it doesnít always relieve the pain. If itís gone on for years and has done permanent damage to nerves or his nervous system he may have to learn to live with pain that would send the average person to the ER if they woke up with that level of pain. There is the possibility that more surgery could leave him in worse pain even though that may not seem possible at the moment.

    I wish I could say what he should do, that report doesn't mention his fusion which seems odd. Unfortunately when in severe pain, people will roll the dice even when the odds are not in our favor. Surgery is definitely rolling the dice. There are more agressive things they can do to manage his pain, but you really need to know where things stand as far as stability and if the tumors are the cause of pain or the arachnoiditis surounding his thecal sac.

    I recomend getting as many opinions as possible and look into manageing the pain better so he isn't making a choice out of physical desperation.

    People do things out of mental desperation too though. It's normal to feel obliged to try anything and everything for your spouse or family, It's normal to feel guilty for not getting well after surgery. Those would be the worst reasons to have more surgery though. Out of guilt that this isn't the ride you signed up for with a disabled husband, that you have a choice and deserve better are all things that pain managed in the form of opiates won't fix. He needs to know where you stand or at least some reasuring.

    Take care, Dave

     
    Old 06-07-2006, 06:24 AM   #39
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    Re: Calling for Shoreline's help

    Hello Dave,

    Well Dan's appointment was yesterday and the doctor wants to do surgery.

    He was looking at Dan's MRI and ask him where most of the pain in his back was , then he sent him for an x-ray . Came back and said he would like to do a decompression surgery to remove scar tissue , Dan ask him if the scar tissue would come back and he said it can and often does , BUT there is a new device ( can't remember what it's called ) that fits around the dura or thecal sac its a plastic sleeve that protects the nerves from scar tissue , he said he seen alot of good come from it and some bad , BUT he also said he would like to get a look at his hardware to see if it's fused or not , if it isn't he want's to add some protein to help it grow and if it is he want's to remove the hardware . We looked at all options and discussed the what if's , he also said if it doesn't help with the pain he would like to install a tens unit in his back ???? Dan said no to that , he would rather live with the pain .

    I support anything Dan does and will take care of him .
    Have you ever heard of this sleeve thing and whats your thoughts ?
    Thanks a bunch Dave.
    Sherri

    I hope your doing well today also

     
    Old 06-07-2006, 07:00 AM   #40
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    Re: Calling for Shoreline's help

    Hi Sherry, I'm glad Dan found some light at the end of the tunnel. I hadn't heard about the sleeve you described but when I had my surgeries the hardware was new and didn't have FDA apoval,crosslinking was a new concept but there was no aproved hardware to achieve it. BMP "Bio morphic protein" was new and didn't have FDA aproval but was used in me, now they have a new version that is approved called rhBMP2. They also painted the area they removed scar tissue with some type of experimental scar inhibiting agent, I don't know if that ever made it to aproval. Often being the guinea pig just comes with the territory. If this sleeve works out, it may offer alot of hope to folks that have been previously told nothing can be done for arachnoiditis. Technology is always moving forward and anything that improves the odds is certainly worth trying whether it's a proven product or one still in the clinical trials and information gathering phase.

    As much as the possibility for relief seems at hand, If it were me, I would still ge a second opinion, see if another surgeon has had success with the sleeve and what he thinks the best way to revise a fusion is. Hopefully another opinion or two will just make his decision that much easier and the outcome easier to live with when you know you did all the research you could and got more than one opinion that suports the need for surgery.

    If another doc says no this is a bad idea, you have to ask why. It may be a bad idea in one docs mind simply because Dan presently takes more pain meds than that surgeon normally prescribes for post op pain. That alone will scare some docs off because of the belief regardless of what they do, Dan will always want pain meds. We understand that's BS, but most docs over the age of 37 were trained in an era where only cancer patients got these meds. The SCS may not be a bad idea down the road, but a trial needs to be done so the right nerves are stimulated. Implanting one at he time of surgery to correct other problems doesn't really seem like the best way to go about implanting a spinal cord stim.

    There are some other things that can increase odds of success like bone growth stims. they make an internal unit where the leads do have to be removed within a year of the surgery and they make an external belt like device that sends an EMP through his body hopng to draw aditional blood due to the iron in blood into the area your hoping to fuse.
    I have one of them buggers too. I did get them to take the bolts out of my neck for purely cometic purposes and those scars seem to be healing nice. LOL

    There are things to consider and make sure are in place like who's going to be managing post op pain, what's the plan with his present meds, Being sure that anesthesia isn't reversed on an opiate dependent patient, but we can talk about all those things when you get closer to D day.

    There really is no harm in getting another opinion, it's another chance to get answers to questions you may not have already, but I truly am glad that there is more hope than ever that something can be done to make him a little more comfy and restore some function.

    Good luck to Both you guys and don't be a stranger.
    Take care, Dave

     
    Old 06-07-2006, 10:38 AM   #41
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    Re: Calling for Shoreline's help

    Hey Sherri, The material used to protectthe dura from further adhesions peaked my curiosity. It took some time but I found an intersting product used in europe. Although it doesn't have FDA aproval in the US, Like many of the materials used on me it's not uncommon to have you sign a waiver and try an experimental product. Artifical discs have been done for much longer in Europe but they have been done as far as back as 93 in the US right at MCV 2 hours north in Richmond VA. They were just aproved in nov of 2005.

    They hadn't had aproval and often insurancee would balk about paying for a non aproved device, but that's how many devices and hardware and even drugs used for off label use end up being aproved and becoming the gold standard in the US after 20+ years of behind the seen use.

    The BMP usedd on me in 99 has been advanced to an improved and approved product in the US. It's aproved for use in spinal cages in the lumbar area, but docs have been using it many other ways. Controlling the growth when you don't use a cage has been found to be a problem when using BMP but if done corectly hopefully it will add some stability to Dans spine. I thought you might want to see what I found and even ask if this is what your doc is using.

    I would love to know what's being used behind the scenes because it's a good predictor of what will be common use down the road.The product is called Integra and specifically made to prevent adhesions from ataching to the dura. It took some time to find but I like a god challange.

    Folks suffering from arachnoiditis should be interested in this prodfuct as it may provide docs the ability to decompress the dura and remove adhesions and it's reported to be 95% effectiv at preventing regrowth. I'm kind of impressed with your doc now that I know he's going cutting edge bio product on Dan. It is guinea pig but much of what has been done to me is now the standard in fusions like the use of Crosslinking and BMP prior to being FDA aproved in the US. Things may have failed in my case but the ideas with some revamping are standards of prasctice now.

    I would be the first to sign up for injectable rhBMP2 into the screw holes in my sacrum to add some stability because they presently toggle and the screws just hang in holes much larger than the screw. I read a bit about new delivery systems for rhBMP2 so it may be sci fi in my mind right now, but I'm pretty sure someone is going to try it for just that purpose and I'm more than willing to give it a shot at this point.
    Take care, Dave

    [url]http://www.integra-ls.com/products/?product=207[/url]

    If the surgeon is using something different I would love to research it, if you don't mind.

    Last edited by Shoreline; 06-07-2006 at 10:47 AM.

     
    Old 06-07-2006, 03:52 PM   #42
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    Re: Calling for Shoreline's help

    Hi Dave , I think Dan is going to call his doctor Friday and ask what that sleeve is called. I'll tell you as soon as we find out. It is so hard to find a doctor to look at Dan , either it's because he's on workers comp or because he had surgery . He gets turned away all the time.

    Are you saying they have a better BMP out called rhBMP2 ? Dan had the BMP in his fusion. Maybe if it isn't fused he will use it . Yes his doctor is cutting edge. He was told about this doctor here on the boards. He told Dan he wasn't affraid to go in behind anyone if he can fix whats wrong.

    Dave I can imagine how much pain you put up with , just hold on because there comming up with new treatments all the time . Dan said he would subject to test's that wasn't approved if it would help other's and take away some of his pain . He is sick of taking Meds all the time. You would think taking them Meds all the time over the years have to put stress on your organs.

    I don't understand if your screws are toggling why leave them in ? That has to hurt . Have you tried other doctors also ? I hope everything works out for Dan and you . Be strong and hang in there , there is light at the end of the tunnel.
    Sherri

     
    Old 06-08-2006, 12:28 PM   #43
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    Re: Calling for Shoreline's help

    Hi Sherry, BMP just mean bio morphic proteins which is a hole class of biogical materials, there are several types of biomorphic proteins but rhBMP2 is the one presently aproved for use in anterior cages in the lumbar spine. That's just it's aproved use. Obviously docs are going to use it and other biologicals for other areas and other methods of fusion than cages.

    A different BMP was used on me in 99. They added BMP to crushed harvested and cadavor bone to create a paste and slapped it into the areas they wanted to fuse. That wasn't an aproved use but that's nothing new. For whatever reason the bone simply didn't grow. Perhaps that particluar BMP isn't bing used anylonger or maybe it failed for some other reason.

    The problem with fixing the screws in my scarum is that I can't find a doc willing to just patch one area. IF there was a simple procedure to inject say rhBMP2 into the screw holes that may solve part of the problem for a while, but nothing above fused either and I have hardware above that is broken and a 50% slip at the lumbar sacral junction L5/S1. Which is really the greater mechanical problem and would require revising my entire fusion and extending it up into my thoracic area. I've talked to several surgeons and been to Duke and Chapel Hill medical center and nobody will just do a patch on one area when so much else is wrong.

    I guess they figure If I'm not willing to have it all "fixed" there is no point in fixing 1 isolated problem. When they mentioned removing ribs and going up to T10, that pretty much killed the idea of rolling the dice again for me. Although a few docs have said injecting BMP into the screw holes would be a creative use, there is a problem with overgrowth and without stability from a solid fusion above, the screws and rest of the hardware will still be bearing all the stress indefinitely which it isn' inteneded to do.

    Did you get a chance to check that stuff out to prevent scarring of the dura. If it works, being a guinea pig and part of getting it aproved in the US is a good thing.

    Let us know when.
    Take care, Dave

    Last edited by Shoreline; 06-08-2006 at 12:35 PM.

     
    Old 06-09-2006, 05:39 AM   #44
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    Re: Calling for Shoreline's help

    Dave sorry for your pain , I wish they could promise a good outcome for you , your back is really messed up. What do you ? You can't work right ?


    Dan's doctor said this sleeve thing has been approved by the FDA so it is legal in the U.S. right ? He is praying this works. He said he is glad he found the healthboards because he gets alot of answers to his problem. He still is banned ??? All he did was call you Dr. and they banned him. Must be forever.

    Dan has one option at a second opinion ,my cousin works for a medical group ,he is a chiropractor , were going to ask his OSS partner to look at his CT's and ask what he thinks. We thinks its awful funny how Dan's surgeon wants to get him in the OR ASAP.

    We'll keep you posted on what goes on. Hope your feeling better.

    Sherri

     
    Old 06-14-2006, 04:06 PM   #45
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    Re: Calling for Shoreline's help

    Hi Dave just thought I would drop off to say hello , I'm back on the boards again, I have to be more careful what I type . Have you read any more into that sleeve thing ?
    Good to see you.
    Dan

     
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