I just saw an endocrinologist today, Was given IV reclast 2 months after triple lumbar fusion, Rods, Screws, cage. I am 10 months out with no bone, no fusion, using bone growth stimulator, taking 50,000 units Vit D 3 times a week and high doses of calcium.
Forteo has just been recommended. I need bone badly, had osteopenia prior to surgery. Am concerned that I could be going from bad to worse with yet another drug, at least this one does not last one year. Has anyone taken Forteo after failure of fusion or bone growth???
I am also concerned re: side effects. I have not seen any one who has had major back surgery, failure of fusion or bone growth, or their response to Forteo.
I am pleased to respond positively to your inquiry. Following my first surgery (multiple fusions with all the hardware) nothing grew, fusion never occurred. Two years later, while on Forteo I had two more surgeries (hardware removed and replaced, this time the entire length of my spine). Thanks entirely to the Forteo everything has fused, bone has grown where it was wanted. The surgeon and I could not be more pleased with the outcome!
Best of luck to you! Carol
Turtlelady,
I'm really glad to hear about your success. I've sort of decided not to have back surgery unless it's an emergency because of my really low bone density. It sounds like you were on the Forteo at the right time, after surgery. Are you pain free now?
I've never had surgery but I haven't experienced any side effects to Forteo except a little irritation on my skin where I do the injections.
I will be having a fusion probably within the next month or so on L/4, L/5. I also have Osteopenia with low bone density. Would it be better for me to have "Reclast" (a once a year drug), or should I have Forteo by injection once a week? I cannot take those kind of drugs by mouth because of stomach issues, but I do take "Evista" every day. I heard that Reclast can give you flu-like symptoms every day for a long time. I also have been out of work from a fractured T12 for 5 months. I actually had the procedure " Kyphoplasty" for that, but have suffered with the lower lumbar ever since I had the Kyphoplasty.
I'm having a "Disco-gram" this next week. Any suggestions? I'm a female age 59.
Thanks so much for the positive information re: secondary surgery with bone and fusions while on Forteo. I just sent in my prescription today, and will start on Tuesday, my learning to inject day. I am an RN and will keep folks posted on my response to forteo, and follow up xrays, the one year xray is due july 1st, by then I will have been on forteo 2 months, do you know how quickly you saw bone growth. You are a glimmer of hope and I am happy that your spinal fusions did fuse. Are you taking anything for maintenance???
Taape:
We timed the surgery to maximize the benefits of the Forteo.
At this age I doubt anyone is pain-free, but the back pain is minimal
(I do need a new knee, unfortunately).
I was told my first surgery was an emergency because of severe stenosis.
Now I've got my doubts. I went to the Hospital for Special Surgery to have the damage repaired and they performed miracles!
Flgram:
Yes, thanks. At this point I am on Strontium Citrate and Silica (in addition to the usual - Calcium Citrate, Vit D, Magnesium) and a certain amount to prayer.
I am looking forward to the FDA's approval (maybe July?) of the new Amgen monoclonal antibody product (Denosumab) which sounds very promising.
I don't have any means of monitoring my progress (or lack thereof) other than the bone marker chemistry tests. Dexa's are of no use (between the extensive arthritis and the erector set of titanium the readings would not mean much). I haven't broken anything new since the Forteo and that is good news. (No side effects either, incidently.)
Good luck to us all! Blessings Carol
Carol, Thanks so much for your words, my Dexa as well was on my hip, couldn't do my back due to the titanium rods, 8 screws, cage and new surgery. I go on Tuesday to learn about the injection process, should not be bad. What time of the day did you inject. It seems most are doing it at night due to nausea. did you have any leg cramps and how soon ( months ) did it take to show new bone/fusion formation???? As a nurse I know that osteogenesis takes a long time, but was it 3 months after starting, 6 months, or what??? Normally there is noticeable bone deposit and early progress with fusion in 3 months, some times partial in 6 months with a normal person.....but we arn't in that group. Kathy
No nausea, no cramps, no side effects whatsoever. I injected first thing in the morning and scarcely ever felt it. I had the 2nd and 3rd surgeries about 10 days apart (because of massive blood loss) exactly half way into the Forteo. How long it took to take effect, I could only guess, but I was monitored with CT scans every 3 months the first year and the surgeon was extremely pleased the first followup in marked contrast to my first surgery where nothing much ever happened (I was in a massive brace for a year and a half and terribly fragile). Miraculous stuff (at least for me!) this Forteo.
God bless!
I just saw an endocrinologist today, Was given IV reclast 2 months after triple lumbar fusion, Rods, Screws, cage. I am 10 months out with no bone, no fusion, using bone growth stimulator, taking 50,000 units Vit D 3 times a week and high doses of calcium.
Forteo has just been recommended. I need bone badly, had osteopenia prior to surgery. Am concerned that I could be going from bad to worse with yet another drug, at least this one does not last one year. Has anyone taken Forteo after failure of fusion or bone growth???
I am also concerned re: side effects. I have not seen any one who has had major back surgery, failure of fusion or bone growth, or their response to Forteo.
Hi:
Sorry to bother you with this question, but what does "Forteo" mean?
I am the wife of 40 year old man who suffers from failed back syndrome. I am just trying to educate myself with every aspect of this condition. --it is either this or loose my mind watching my husband suffer in pain. I choose to become part of the informed, cutting-edge, post failed laminectomy crowd. I am trying to find a surgeon to "re-do" the mess that is my husband's first fusion.
Best of luck to you. May your journey to a pain-free place, be quick and permanent!!
Forteo is a recombinant human parathyroid medication which is used to stimulate bone growth. It involves daily self-injection, usually for 18 months to 2 years. It carries a very, very small risk of osteosarcoma (bone cancer). For me it was quite miraculous.
I also had a failed fusion which left me in horrendous pain and visibly deformed.
I strongly recommend you see the folks at Hospital for Special Surgery in NYC.
They gave me back my life. No more pain or deformity and the fusion has been totally successful. You cannot ask for more!
Good luck!
Carol
Forteo is a recombinant human parathyroid medication which is used to stimulate bone growth. It involves daily self-injection, usually for 18 months to 2 years. It carries a very, very small risk of osteosarcoma (bone cancer). For me it was quite miraculous.
I also had a failed fusion which left me in horrendous pain and visibly deformed.
I strongly recommend you see the folks at Hospital for Special Surgery in NYC.
They gave me back my life. No more pain or deformity and the fusion has been totally successful. You cannot ask for more!
Good luck!
Carol
Hi turtlelady--
I just sent in my husband's papers to the Hospital for Special Surgery in NYC this past Friday. I am waiting for an appointment for him there. If you wouldn't mind, would you be willing to tell me which doctor you saw at the HSS. I want to choose the right one this time around. My husband has a failed lumbar fusion (two levels).
I am glad to know that your surgery went so well....I would just give anything if I could get my husband out of this horrible, horrible pain. I love him so much. This is actually killing me to watch.
Dr Girardi was my surgeon but there are many top spine surgeons there. I don't think you can go too far wrong at that place. The standard there is very high. If anyone can fix your husband, it's HSS. I look forward to hearing good things from you also. Being on the Forteo after the surgery I believe really added to the success of the fusion this time around. (I am fused all the way - from cervical spine down to sacrum and I am almost completely functional now.)
I wish you the best of luck. I know what you are going through.
God bless! Carol
Dr Girardi was my surgeon but there are many top spine surgeons there. I don't think you can go too far wrong at that place. The standard there is very high. If anyone can fix your husband, it's HSS. I look forward to hearing good things from you also. Being on the Forteo after the surgery I believe really added to the success of the fusion this time around. (I am fused all the way - from cervical spine down to sacrum and I am almost completely functional now.)
I wish you the best of luck. I know what you are going through.
God bless! Carol
Thank you so much Turtlelady. Dr. G is who I had picked on Friday. I am really so very desperate to see my husband come back to me. I miss us. He is in pain and I am the wife of "failed fusion" husband. It is our whole life. If I can get into Dr. G and if he is willing to "redo" this surgery, I will be on my way. I am so afraid that the HSS will turn my husband away.
I am sick thinking about "what if they refuse to treat him."
I can't imagine them turning anyone in your circumstances away. If you can get past the front desk people Dr. G. is not only an amazing surgeon he's also a very decent human being, infinitely more accessible than the neurosurgeon who botched my first surgery.
I know, too, just how hard it was on my family before I was repaired.
If you would like, contact me through private messaging and I can give you more detail.
I wish you both all the best. It will be good to get this behind you and get on with life!
Carol
I can't imagine them turning anyone in your circumstances away. If you can get past the front desk people Dr. G. is not only an amazing surgeon he's also a very decent human being, infinitely more accessible than the neurosurgeon who botched my first surgery.
I know, too, just how hard it was on my family before I was repaired.
If you would like, contact me through private messaging and I can give you more detail.
I wish you both all the best. It will be good to get this behind you and get on with life!
Carol
Hi Turtlelady:
I hope that you are right. I have great insurance and everything--its just that two doctors (who are not the same calibur as Dr. G) said that they didn't see anything that they could do for my husband. It is like a punch in the stomach to hear that. My husband also wasn't told that smoking reduces the success of a fusion by 50%. He will soon be nicotine free--I want to be able to tell Dr. G that he is officially a non-smoker.
I would like to contact you through private messaging, but I am a "nubbie" on this healthboard. I will wait until my status changes or my appointment time gets closer.
I really appreciate being able to "speak" to you like this. I don't want to loose hope and I certainly don't want my husband to loose hope. Last Friday, he told the ortho that we saw that "he didn't want to live like this anymore." The ortho said the following: "Be that as it may, I don't see anything that I can do for you. Why don't you go back to the doctor who performed the original surgery and let him take a look at his handy work." I thought that my poor suffering husband, who had to try so hard just to walk from the car to the office, was going to just wilt away and die right there. He is this strong, tough, former builder of homes. But, this pain can realy bring you down to size and the doctor was harsh.
However, it was this doctor that also said, "I would take him to the Hospital for Special Surgery." That was Friday. I sent in the papers to HSS on Friday. I spoke with you yesterday. Today, HSS called my husband and started the intake information.
Hopefully, Dr. G won't brush him aside. Four years of suffering. I really am even afraid of seeing a better day in my mind--you know, in case we don't get any better days.
Speak with you soon.
Valicia
Last edited by harmonv; 05-17-2010 at 04:53 PM.
Reason: typos
Valicia - I tried sending you a message but you are not set up for it. You should be able to enable private messaging in your control panel.
Hang in there! HSS can do what no one else can. Be persistent and you'll get in. Your husband is much too young to let this take over his life. Keep me posted!
Best,
Carol
Hello everyone. I am glad to see further posts to my original. I have started Forteo and have been on it for about 2 weeks, I have had no side effects other than one very severe cramp one night that was resolved by standing up and stretching it out. It was so sore the next day, that I did use a heating pad which fixed it up. To recap, I am 11 months post triple lumbar fusion, wide excision laminectomy including L3, L4, L5, and facet removal at L5 bilaterally, and L4 on the right side, I have 2 titanium rods, 8 screws and a cage at L4-5. I have no fusion, and very little bone on xray of 4-1-10. Next appt. 7-1-10 for another xray. I am getting a CT scan of the bony pelvis, concern is regarding low back pain, either referred, or possible pathological fractures in the sacrum ( I don't think it will show fractures) I did have a caudal epidural about 3 weeks ago, which work well for some pain control for about 2 weeks, but am now back to full blown pain, and pain down both legs. My concern of course is how long does osteogenesis take with Forteo at this point, Also with loose hardware, I am at risk of further loosening of screws, the top 2 are completely loose or hardware breakage. I really don't want another surgery and am hoping that the forteo will promote bone growth now. My concern is that the bone involved has been through the regrowth steps including laying down new bone, the remodeling stage around 6 months when the overgrowth of bone is reduced etc. I spoke to a hardware representative while blueberry picking who also stated that there is another drug that causes rampant bone growth, but the bone grows every which way, and could cause nerve compression and all sorts of negative things, so it is not used for backs. Also for those of you who are using a bone growth stimulator, I called Orthofix and was advised that my stimulator will run for 300 days, then will "Lock out" At that time, my physician will have to order a new unit, the old one can not be reset. They cost 6,0000, my DME is 2500 per year. It is due to Lock out some time in Mid July. With Forteo do any of you also use a bone growth stimulator too?
Valicia - I tried sending you a message but you are not set up for it. You should be able to enable private messaging in your control panel.
Hang in there! HSS can do what no one else can. Be persistent and you'll get in. Your husband is much too young to let this take over his life. Keep me posted!
Best,
Carol
Hi C:
I don't want to loose touch with you. When you say enable "private messaging in the control panal" do you mean on my computer or on the health board? All of my husband's records went up to Dr. G today to his intake assistance named Sylvia. She is also very nice.
Everyday, I go to work and, on the drive home, I start to think how horrible the day must have been for my husband. On Friday, after that horrible ortho, I called home from the car and my husband (my beautiful, sweet husband) didn't answer the home phone and didn't answer his cell phone. Oh my God, the thoughts that went through my head. He was fine. The phones were just off the hook.
This is some tough stuff. I thought being a first year associate at large law firm gave me tough skin. Now I know that if you want to know whether or not you are tough, watch someone you love suffer with spine pain. It will bring you to your knees. I just want to make sure that I get him up there. I don't want to loose anything here. We have loved each the since December 7, 1997. I can't image going on without him. I just want this whole thing over. I have alot of guilt because of my choice of the first surgeon. With my great insurance, I chose a butcher. Smart girl like me, right? I was able to make my way out of poverty, into Wellesley College on a full academic scholarship--I choose a butcher for my husband's spine surgeon. Now, I am so scared that no one will fix him. I can't eat. I can't sleep. September 5, 2010 will be four whole years of this. He just lays in bed and waits. It is a horrible, horrible thing.
Sorry for all of this--but I suppose it is good for me to say it. I feel very responsible for his current condition. I just want this over.
Do you think that you can tell me more about this instant messaging thing?
Valicia
Last edited by harmonv; 05-18-2010 at 02:12 PM.
Reason: typos
Valicia
Click on "my settings" (top, left hand side of healthboard page).
This will bring up "your control panel".
Under "settings and options" click on "edit options".
You will see "messaging and notification".
Under that you will see a sub-section "private messaging".
The first option under that heading is "enable private messaging".
Check that box and you're all set.
If you have any problems, let me know.
I'll back up and try again.
(Can you tell I used to be a technical writer?)
Best of luck!
Carol
Valicia - I tried sending you a message but you are not set up for it. You should be able to enable private messaging in your control panel.
Hang in there! HSS can do what no one else can. Be persistent and you'll get in. Your husband is much too young to let this take over his life. Keep me posted!
Best,
Carol
Wow. That was incredible. Technical writers should make alot more money than whatever they make. Ok. Clicked and saved.
My husband says that I am going to drive myself crazy. I certainly don't want to drive you crazy too. My real concern is that so many doctors (really 5) have said that they don't see anything wrong with my husband's fusion. This is some scarey suff. Nothing wrong? He can't walk, but to the bathroom. He can't sit in a chair. I can't touch his back, even lightly with my hand, where he has been operated on. He cries out (tries not to, but does) when he rolls over or sits up from a horizontal position. But the docs don't see anything wrong. He just said that I have to prepare myself for the fact that it's possible that Dr. G won't see anything wrong either.
I am going to be the person who ends up on drugs. We want to go on a honeymoon--imagine that. I guess that things could be worse. I just don't know how much longer he can hang on. The absolute helplessness is unbearable.
Ok. I am going to get him in to Dr. G and he will see something: this "failed laminectomy syndrome" lingo that these doctors toss around is shameful. I can't imagine a profession that can come up with a diagnosis that really means "we don't know what went wrong and we don't know how to fix it, but good luck to ya!!"
Re: Forteo - lumbar fusion, no bone or fusion 
