The appointment

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mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/4/2011 11:53 PM (GMT -6)   
Hi Guys,
It took me a while once I got home to wrap my head around all that he had to say today. Unfortunately, none of it was good- lots of not so good news, no good news and even worse news. shakehead
Anyway, he was going over the images again when I got there.....and we went into the exam room to talk and go over the xrays and other reports first......the good news is that there isn't a ton of movement between the vertebre, but then again, we aren't sure how accurate the xrays are since I can't bend forward or backward very far......that would be the not so good news......
Bad news- there is no fusion from my previous surgeries, although there is a very thin bridge between the 4th and 5th vertebre on the right side- it is very, very thin to use his description of it. More bad news, I have both osteopenia and osteoporosis through out my spine apparently. Even more bad news- the slippage of L3 over L4 has increased in the last month. It went from a first degree spondylolysthesis to a 2nd degree.  Even more bad news- this means that it has increased the compression of the spinal canal some.
Really bad news- it appears that the dura ( covering of the spinal cord) is attached to the vertebre at L3, L4 and L5.....more really bad news- any surgery would most probably result in a tear in the dura, at all those levels. This would mean an attempt to repair the covering- and at least 5 days flat on my back , while they hope that it seals once they repair it. If not, I would be flat on my back until it did. The canal should be about 14 mm wide,  mine at those levels is anywhere from 4 mm to 3.14 mm. smhair They are not sure if they would need to extend the fusion- in ordinary circumstances, they would extend the fusion from L4-5, but it would be from L2-to, at a minimum L5, but most probably to S 1 or S2......because I didn't fuse before, they would prefer not to have to extend the fusion but would try to decompress the spinal canal by removing bone from the canal area. If they had to remove more than 40% of the bone from either side, they would have no choice but to extend the fusion, which means a much more difficult recovery and rehab stay in a hospital for some time post op......even without the extension of the fusion, I may still wind up having to do the hospital rehab for awhile due to the extent of the spinal cord injury.
I asked him what he felt the likelihood of having to extend the fusion was in his opinion and he said that it is probably about 80%.....but that he would try to decompress the spinal cord first and hope that it was enough. More bad news is that what was once my disc between the vertebra is now laying in the nerve root exit and compressing that as welll on both sides at L3 and L4....there is also bony overgrowth from L2 down- and hardening of the vertebre due to the constant rubbing of the vertebre all over each other constantly.
Anyway, there's more, as always, but he said that I can choose to do nothing and hope that things don't get worse for awhile and have someone follow me , keeping an eye out for any worsening of symptoms- but that since I have so much nerve damage as it is, that being able to tell if there is a worsening of symptoms is going to be very challenging at best....
He said that there is a lot at stake, if I choose to go ahead with surgery, the potential for several things to go wrong is huge, and choosing not to go ahead also have huge risks. He would like for me to at least consult with two more surgeons, to see if and what they would recommend before we go ahead with surgery. He wants me to be sure, that no matter what I choose to do, that it is what I think is right for me.
I tend to agree with the idea of seeing a couple of other surgeons and seeing what they think given the reports and the risks involved. I am still not sure what the right decision is, and tonight hasn't really given me any clarity in regard to making one , one way or another.
I talked to my husband , and he would like me to see a couple more surgeons before making a decision. He likes these two doctors, likes that they are looking to do the bare minimum , rather than just jump to the bigger operation, but, like me is understandably scared for and about delaying things while I try to find other surgeons with comparable credentials and skills.
So I am still darned if I do , and darned if I don't......
Sandi

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/5/2011 1:09 AM (GMT -6)   
Hi Sandi....

Been thinking of you all day.  I knew you'd post when you felt up to it...so I tried not to bother you :( 
 
Ok, your post brought tears to my eyes.  I can only imagine the "limbo" you must feel like you are in - with no clear-cut answer.  I have to agree, though, w/ you and your hubby.  I, too, would go ahead and get those opinions from the other surgeons...but that's just me.  I always feel like I have to be armed w/ as much info as possible. 
 
It looks like, ultimately, you are going to have to make a choice of the lesser of two evils.  I hate to say it that way.... Either wait it out - knowing the risks or go for it - again, knowing the risks.  I guess it's just which one carries the "least" risks.  I don't know; that's something you'll have to come to a decision on.
 
In the meantime, I will continually pray for you, as I've done. I think of you often... and only can imagine the stress that you are dealing with....especially with a husband and four beautiful children.  You are a woman of great strength and great wisdom; I really mean that, Sandi - and I know in my heart you'll get through this, whatever decision you come to.  But I just wish you weren't even having to go through all of this.  I would take it away from you if I could.
 
Thank you for the update.  I know many of us here have been thinking of you and wondering how things went.  Many prayers and thoughts are coming your way tonight, Sandi - and I'll talk to you soon.  Please know I'm here for you - if you ever want to just scream and vent :)  I know it's not much....and I wish there was more I could do.  Much, much love. --Tina
 
 
Dx: Disabled due to many, many health/pain issues
Meds: Heart meds, Effexor, various Pain Meds (I've literally been on them all)...and on the list goes; intrathecal pain pump candidate

Personal: Christian wife and mom; I have six sons...and two "surprise" blessings - identical twin daughters (born 9/2010)

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 5/5/2011 7:51 AM (GMT -6)   
 
 
       Morning Sandi!
 
           Well...it sounds like you were given more than enough information to digest for a while. Tina probably summed up what I wanted to say on her reply to you...so I will simply add a Ditto to it. wink
 
    We will continue to follow your news and lift you in prayer. Hopefully the second opinions won't take too long, and then by that time you will have enough information to make a difficult, but well thought decsion, that you can come to terms with. Either way it wont be easy for you, and for that we are sorry.
 
 SE wink
Moderator Chronic Pain Forum

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momtofourangels
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Date Joined Apr 2010
Total Posts : 2261
   Posted 5/5/2011 10:04 PM (GMT -6)   
Hi Sandi. I had been wondering what the doctor had said. I'm sorry for all the bad news that you got. I'm like Tina, if I could take it all away I would. I know it's really scary. It's hard to know that you're facing such darned if you do and darned if you don't circumstances. I will keep you in my prayers. I also think it's a good idea to see more surgeons for their opinions, so you have all the information you can get. Please keep us updated. You take care and I hope you're having a low pain night.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/5/2011 10:52 PM (GMT -6)   
Hi Tina, SE and 9 ,
Thank you all for your posts. Tina, you are right, whatever the decision that I make ultimately is, it is one that I will have to live with, good or bad. I also think that at least seeing what two other surgeons say will be a good thing, at least if there is some concensus, it might help me to make a clearer decision , especially since things are so potentially risky, on either side of the coin.
What I would really like is some idea of how long I can potentially put surgery off if that's what I decide to do, without putting myself in further danger, but I doubt that anyone can give me an answer to that question. In fact, I know that they can't.
With the osteoporosis problem, I am leaning toward getting a bone density study done prior to seeing any more surgeons so that we have some idea of the severity of that before making decisions about further extending a fusion, since osteoporosis can really cause more difficulty with getting a fusion successfully done. Once we have that information, it can only help any other surgeon to have that information before making/talking any plans for surgery including the two that I have already seen. Any ideas what doctor you ask to send you for a bone density study? My GP?
I wouldn't wish this situation on my worst enemy.......
But I am not going to feel sorry for myself, I will figure out who to see and get the BDS done and then figure out what my next steps are.........that's all that I can do in the meantime.
Thank you all for caring........and for the prayers. They are greatly appreciated.
Hugs,
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/6/2011 1:24 AM (GMT -6)   
Sandi...
 
I've been thinking about you a lot today.  Yes, I think your GP can order the bone density test.  And you are exactly right - I wish you knew just how long you could push having the surgery....knowing that bit of information would make a huge difference.
 
As usual, though, I admire your attitude... I know you are struggling but I think you are handling things the very best possible - and that's something I really admire about you.
 
More soon, but holding you in my thoughts and prayers.  Please, please keep us updated.  Love, Tina

straydog
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Date Joined Feb 2003
Total Posts : 16301
   Posted 5/6/2011 10:20 AM (GMT -6)   
Hi Sandi thanks so much for posting to us about the appt. So, more consultation are what he recommends. I have to say he sure is a cautious one and there is nothing wrong with that. Does not appear to let the ego have a major role here either, that is refreshing. I know whatever you decide it will what you think is the best for you.

Are you suppose to find these drs to get an opinion from or is his office going to make he arrangements for them? Let us know. We will be thinking and praying for you. Take care.
Moderator Chronic Pain Forum

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/6/2011 5:41 PM (GMT -6)   
Hi Tina,
I asked him about how long I might be able to delay surgery and he said that he really can't give me any time frame. Since no one knows how long it took to get as bad as it is, there isn't anything available to us at this time to give us some idea of whether it was months or years to get this bad. I didn't think of it at the time, but I wonder if I can get the myelogram that was done before my first surgery and the one done about a year after? Maybe that would give us some idea of the difference? I will have to see if I can locate those films. If I can, that might be something to base an idea of how long I can delay things a bit more safely than I can right now.......I know those films are around but am afraid that my first surgeon may have them and if he does, getting them from him is going to prove interesting. If all else fails maybe I can get them from the place they were done? I wonder if they keep them for more than a couple of years?
THANK YOU! You have given me an idea......
Love and hugs back,

Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/6/2011 5:42 PM (GMT -6)   
Thank you Paula for the prayers. I hope that I find some clarity too during this process. Right now, things are about as clear as mud.....although Tina did give me an idea......I won't know if it will help but you never know....
I appreciate all of the thoughts, prayers and concern. It does make me feel far less alone in this journey.
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/6/2011 5:49 PM (GMT -6)   
Hi Stray,
Yes, more consultation is the game plan. He wants me to be absolutely sure, no matter which way I decide to go, and I don't blame him. I don't have a good outcome track record when it comes to surgery , and his concerns are all valid ones.
As far as recommendations, he did say he would give me some names if I wanted him to , but he would rather that I find them myself so that there are no conflicts of interest- and no concerns about loyalties and just agreements on the other surgeons behalf because when they know that you were sent by another doctor, they tend to concur with the first doctors opinion.....or not bother to form their own.....so he would like me to find at least one of each type- neuro and ortho myself and if I need him to, he will recommend the other two.....
He is conservative, and that's one of the things that both my husband and myself like about him so far. He isn't quick to jump to anything- regarding surgery. He seems to be taking this as serious as he should be- and being brutally honest about the possibilities of problems.
So far, I would much rather that he act as he has so far, and be wary of the probability of complications, and want to confirm for him self and for us that what he suggests is the right thing.....
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3695
   Posted 5/6/2011 11:53 PM (GMT -6)   
Hi Sandi
Thank you for posting, are you currently being treated for osteoporosis or am I correct in gathering that this is something new?  If it is then you definitely need that bone scan you were talking about getting!  As that kind of explains why your fusions didn't take. But  Sandi correct me if I am wrong,   but until they start treating your osteopenia and osteoporosis,  trying to do any fusion would more or less be kind of futile wouldn't it? I mean without treating your osteoporosis, right now with it not being treated, you are losing bone mass,  and if and when they do a fusion they are literally trying to have you gain bone mass and grow new bone.   How can that be done with out treating your osteoporosis first??
 
You know it does sounds like you have some very serious decisions to make, I don't envy you at all,  I do commend your Doctor for wanting you to get a second oppinion, and the way he is treating you. But with that said I can only imagine how difficult this all must be for you. Please know that  I keep you in my Prayers Sandi and I hope this all works out well for you!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/7/2011 1:26 PM (GMT -6)   
Hi WB,
Yes, you are correct, at least as far as I know, that doing any fusion, be it revision or extension wouldn't work without treating the osteoporosis first. I had no idea that I had it, but at the same time, I have lost some 3 inches in height since my first surgery. I was a confirmed 5'9" for many years, now I am 5'6".....and I only found that out recently. I kind of wondered what would cause that and attributed it to the lack of fusion, and the loss of disc height but I am guessing that it is more related to the osteoporosis than the loss of disc height....
I do think that I am going to get the bone density testing done first, and then in the meantime , work on finding other surgeons for consulation . At least then I can ask intellingent questions about surgery and outcomes and maybe find alternatives to helping the fusion if they have to go that route to heal properly...
It is turning into one twisted journey, that's for sure.
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16301
   Posted 5/7/2011 11:53 PM (GMT -6)   
Sandi. I totally missed the part about osteoporosis. I have it in my entire lumbar spine. My first bone density came back osteopenia which is the precursor to osteoporosis and I was not told about it. I should have been placed on medication back then and was not. I would have had a good chance of keeping the osteoporosis at bay had I known and been put on medication. I have lost 2 inches in height also, I am now 5 ft tall. My PCP has me measured each time I go in.

You know my pump dr is a retired neurosurgeon and she was going thru my file and wanted to know what I was taking for the osteoporosis and I told her. She kind of laughed and shook her head and said well, I know of a drug that is much better and it does and is proven to help rebuild bone mass where the other meds do not. She said many of these drugs are saying they do rebuild and they should be sued for false advertising because the drugs do not do that. The drug she put me on is called Forteo. It is a daily injection done for one year and that's it. I am assuming you have a prescription card as this stuff is $1,000 a month and there is no generic for it. In addition she has me taking 5,000 units of vitamin D 3 times a week.

I am curious now how a redo on a fusion would work with the osteoporosis involved.
Moderator Chronic Pain Forum

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 5/8/2011 12:12 AM (GMT -6)   
Hi Stray,
I was doing some reading about osteoporosis and osteopenia and it seems that osteopenia is the precursor as you said for osteoporosis, so now I am really curious as to what it is in my case, the first or the second. I will have to call and ask him on Monday, but it does say both in the reports that I have, so maybe they included both because they didn't specify any T scoring. I think that has to come from the actual study ( bone density testing) rather than from xrays or ct scans.....
I don't know but I'm sure that our insurance would cover it, if it is in the formulary for it. If not, I guess they will put me on something similar assuming that it is osteoporosis vs osteopenia- there really should be some shorter way of spelling those words-LOL
Anyway, I am guessing that osteo anything might effect the way the fusion takes or doesn't.......maybe they can use that bone cement stuff they use in some cases? I can't think of anything better if there is a problem already with the bony fusion not taking.....
I will have to ask.
I knew that there was something else that I forgot, the lumbar area is curving to the ( left) I think it was on the films. He mentioned it but with all of the other stuff, I forgot it....you know how the lumbar area is supposed to curve like an S? Well mine curves to the side- like a largely open C, instead....I hope that doesn't get any worse. He called it something, I guess it's like scoliosis, but to the side. I should have asked more about it, but didn't, given everything else.
How is your bone density now? You only have to do this for a year, and then never again? I thought some of those medications caused other problems? My mother has osteoporosis as well, but she is on some other medication, but I can't recall the name of it.....
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 5/8/2011 2:01 PM (GMT -6)   
Hi Sandi. I hope you're having as good a day as is possible. I also have osteopenia per a bone scan a few years ago. I need another one done, I guess. My pcp at the time put me on the medication for osteoporosis, but I couldn't remember to take it before eating anything, and he took me off of it. I have read that those meds can cause heart problems. When I read that I was glad that I was taken off of them, although I don't know what the osteopenia is doing, if it is still osteopenia or osteoporosis now. I told my current pcp about it a few months ago, and she said we need to get another one, but she never wrote out a prescription to get one. I guess when I see her on the 18th, I need to talk to her about it. My memory is so short, hopefully I won't forget to ask her. Well, enough about me. I hope you're having a low pain day.

love and hugs
Loretta

ps. I sure wish you good luck that the osteopenia or osteoporosis won't interfere with any surgery that you have from fusing. I don't know if it would make a difference or not. Please keep us updated.
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 5/8/2011 2:50 PM (GMT -6)   

Hi Sandi

Wow you are on quite the rocky road. I am so sorry you are having to make such difficult

decisions but you seem to be handling as best you can.

I just wanted you to know that I am thinking of you and praying that all will work out

for you in the end..

Please take it easy and take care of yourself, you are important!!!

Hugs,

Suzane


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/8/2011 11:20 PM (GMT -6)   
Thanks Loretta and Suzanne.......
Loretta, if it has been a few years since your last bone scan, just write yourself a note to ask the doctor for a prescription for one and that way you won't forget. I am no one to talk about forgeting things, I do it far more often than not......LOL
Suzanne,
Yes, it sure does seem that I am on one rocky road, but I don't have any other option but to try to handle it.....as best that I can anyway. I don' t know where it is going to wind up, but I will figure out what to do, one step at a time.
Sandi

Chartreux
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Date Joined Aug 2006
Total Posts : 9664
   Posted 5/9/2011 11:25 AM (GMT -6)   
Sandi,
it's good that you get your bone scan first before going for your other surgeon appointments.
and I would say wait till you know for certain about if vitamin D and the medicine stray mention
are working and that your the osteoporosis is getting better... you definitely have a lot to consider, and I will
be saying many many prayers for you...Keep us posted as how the bone scans reveal...
So thinking of you, prayers...many many good blessings to you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/9/2011 4:54 PM (GMT -6)   
Thanks Chartreux,
I know that you have a lot of stuff on your plate right now too, and you taking the time to be concerned about me , means a lot.
I will let you know how things turn out.......I feel like I am in the midst of my very own soap opera and I don't understand the plot line yet.....
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

spinal soldier
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Date Joined Dec 2009
Total Posts : 687
   Posted 5/10/2011 10:51 AM (GMT -6)   
i am hoping the best for you and i know they can gain you some improvement. ask the consulting surgeons if BMP was used in your first fusion and worse comes to worse will they use BMP for the L5-S1? fusion? BMP is a bone graft additive that can lower the chances of a hip-graft or a non-fusion. you will be in my prayers.

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/10/2011 11:04 AM (GMT -6)   
Hi SS,
No, they didn't use it the first time, but did add it for the revision surgery in 2007. It still failed to fuse. BMP is only good for a certain period of time, after it is implanted. If the bone doesn't start to grow by a certain amount of time, it will fail to fuse, just as it does when using cadaver or allograft material. Now, I think that it failed to fuse because of the osteoporosis. Not 100% sure about that, but it has to have some connection.
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16301
   Posted 5/10/2011 8:06 PM (GMT -6)   
Sandi I am with you, there has to be some connection with the osteop and failed fusion, it just stands to reason I would think. After all, the bones become brittle. I do know that if a person has osteopenia they have a very good chance of not going full blown if caught in time and put on medication and vitamin D. The other medications basically are to slow down the progression and the Forteo is the one that rebuilds the bone mass. A lot of the meds cause GI upset for people with GERD and Reflux, this is why I was initially put on the nose spray until the shots. It is my understanding that one year of Forteo and you are done with any meds for it. I am sure some where out there a person could find side effects or problems with these meds as that is pretty much the way it is with all medication anymore. I think a person has to just way out the pros and cons and go from there. The potential side effects of Humira and Remicade are pretty nasty but for me it was quality of life issues that helped make my decision. Both being newer drugs no one knows what the long term use of these drugs can be,

The t score will be on the bone density test. I can't remember but when was your last bone density test? I will be retested in one year. At best we are hoping to slow it down or stop it because I was a late bloomer going into it.
Moderator Chronic Pain Forum

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 5/10/2011 8:19 PM (GMT -6)   
Hi Susie,
I haven't had a bone density test ever. They got the osteoporosis from the CT scanning.
I know that my mother takes one of the medications for it, and I talked to my sister, who has osteopenia, but she only takes vitamin D and calcium for it. She said that she is supposed to go for another test next year, I guess.
I had no idea that she had either one of them.....guess it shouldn't surprise me.
I will ask about the Forteo when I see my GP about the results of the testing, once it is done.
Thanks for all the information......
Sandi

straydog
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Date Joined Feb 2003
Total Posts : 16301
   Posted 5/11/2011 10:23 AM (GMT -6)   
Sandi you may want to go to their website and print off some info for your dr to look at too. Some drs are not aware that it can build bone mass. At least by taking something with you and depending on the outcome of your test, and I am assuming you are talking a bone density? If one has not been done they sure need to do one on you.

Some drs are not as proactive as others when treating osteopenia. My prior PCP was the one that said if I had been put on something at the very early stage progression could have really been slowed down. Too late now though.

Take care.
Moderator Chronic Pain Forum

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/11/2011 2:20 PM (GMT -6)   
Hi Susie,
I will print off some of the information to take with me. My GP isn't exactly the most reliable and/or knowledgeable about most things if they are not related to emergency medicine.....
It can't hurt to bring it with me. Who knows, I may wind up teaching him something.
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis
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