Triple level fusion anyone ?

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hessie28

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Hi, I'm six weeks out from double fusion L4, L5, S1 and Lamidectomy (not sure if spelled correctly). I expected the recovery to be much worse then it is. The surgeon put me out of work for 3 months. I understand that is due to the fusion process and not all about pain etc. They has me out of bed the day after surgery with a walker. The day after that they made sure I could do steps. I will start physical therapy next week. They will do massage, electric stim, ultrasound and gentle range of movement exercises for 18 sessions. I just found out today from the Orthopedic doctor that I am not suppose to bend, lift or twist the rest of my life. I'll be able to but they said it can cause more problems with the existing discs. I had grade 1 Spondylolethesis (can't spell either) with herniated disc, arthritis, stenosis. I'm 41 female. I suffered from severe back pain the past 3 years. I wore a TENS machine 2 years which was annoying. I haven't slept in my bed for almost 2 years. Can't sleep flat. I rented a hospital bed for two months. I'm investing in an adustable bed for me and my husband. I think you decide on the surgery when you just can't take the pain anymore. Already the disc pain is gone. I may have permanent nerve damage in my leg and foot. I've been going out for walks everyday. I've been using a cane just for extra security but probably don't need it. I have pain in the buttocks which they think is muscle related. Not that I am a neat freak but I hate that I can't clean the house etc.
 
Dear Emily,

You are so kind & thoughtful to talk to me this way- I wish I could give you a hug ( Emily )..there !
I'm sitting here with tears pouring down my face. I've been holding this in for weeks & I can't anymore.
I'm so afraid this is the beginning of the getting old & being a burden thing...I've already been too much of a burden & missed out on too much with my kiRAB because of Lupus, panic attacks & agorophobia which I have worked so hard to rally from .
I had just started to get out the last year-- dancing, actually made a few frienRAB...not close ones, but frienRAB to socialize with a bit when I would go out dancing. There is a band I love to go hear-- can't imagine going to see them & not dance-- no point.

But already I am feeling isolated again. I only go out to the doctors & PT.I work out of my home office which tenRAB to isolate you anyway-- & now I feel like no one wants to be around me because " Here she goes again- she has something else wrong now"-- I can hear them thinking it. Who wants to be around someone who is sick all of the time ? I try to be cheerful & fun & Lord knows I have more energy than most 100% healthy people my age (55)- but the minute I'm not well-- everyone scatters like flies.

So I was thinking if we had a house that I actually could take care of and make myself feel more productive maybe I wouldn't feel so depressed. I always loved taking care of my house & decorating-- it is too much to even think about now-- too many stairs & I go up & down all day with my mail order business which has been really painful.

I am hoping to go out this Saturday night to see my band at a Halloween benefit.I can't go though unless the pain is better than now. Other than that, I don't go out-- I get anxiety in stores alone & there is no one to shop with even if I could with this pain.

You made me feel better in that you say surgery is actually the beginning of recovery- that is what my PT has told me-- if it resorts to that he tells me think of it as a good thing. My 20 yr dtr called me tonite & said next Septeraber when she is finished with school she will come home & take care of everything so I can have surgery if needed.I still don't see how I would recoup in this house-=- 2 flights of stairs up to my bedroom-- no full bath on 1st floor so couldn't camp out downstairs- no where to sleep down here. How do people do this when they have a 2 story home & no where else to go ?

OH well-- enough questions-- I'm just thinking out loud.
Thank you for the encouragement-- it's really true that you feel better after? Everywhere I turn-- even on the phone or out-- everyone says" Oh no you don't want to have fusion surgery- you'll be sorry"- try accupuncture, tai chi, yoga, etc....
Easy for them to say right ? But I guess they have heard horror stories & I'm just afraid I will be one of those horror stories.

thanks again-- you are too kind & I do appreciate you !!!

anxiousinnj (Kate)
 
Thank you for all the helpful replies-- somehow I don't feel quite so alone now & I really appreciate that.
Jackilu- which levels are you having fused ? 15 years of pain ! I would have given in long ago I'm afraid. The first time I was ever seen by an ortho was 2 weeks ago-- but I've gone for chiro adjustments here & there over the past 10 years or so with good success until now. I'm sure you are getting nervous but hopefully coming in here will give some support. You had better get your Christmas shopping done & wrapped now huh ? And put up the tree whiole you're at it ..

settledintex- wow your post is sure uplifting. I'm happy for you- sounRAB like you have a fantastic surgeon. And you have a good attitude . See-- what I didn't understand is how you bend after being fused-- now I would probably have one more level up in addition to what you have-- would I still be able to touch my toes eventually ? I thought I would never be able to bend down ever-- I just have a horrid vision in my mind I guess. I thought it would mean being forever this invalid person who has to ask people to pick things up & put my shoes on etc..
Driving your SUV at 3 weeks-- that's incredible I think. The first surgeon I saw- the one who insists I can't be walking around with this spine-- well he said I would drive at about 6 weeks. But... he did say because I am so active now even with this "bad, bad spine" as he called it, I probably would tend to be back on my feet sooner & be more tolerant of pain. I don't know about that....but I would like to think that i would.

How old is everybody by the way ?
Settledintex- let me guess you are probably 30 max????

I'm 55 although I really don't feel 55 and I'm in pretty decent shape,I don't know if that really would make a difference or not.

thank you again for all your replies-- please keep writing in so we can help jackielu get through her surgery.
I am such a chicken - I am a nervous wreck just about getting the facet injections Wednesday-- someone tell me I won't freak out on that table..
 
Hessie,

So you cannot bend, twist or lift forever ? See this is what I am afraid of.
I had my facet injections last Wednesday ( don't remeraber a thing-- woke myself up snoring !) & I'm not sure if they helped. I went to PT on Friday & did a HUGE workout & woke up Sat morning in tremendous pain-- not just the back, but arms & upper back-- I really did too much. Had different types of back pain all weekend-- moved around sort of-- spasms & intop the left side & my original pain was right side.
Went to PT today & told him how miserable I was & how am I supposed to tell the pain management doc on thursday what type of relief I've had when I don't know?
The PT said I was flaring from over doing things so he just iced me & passively stretched my muscles. Said to do nothing until Thursday so I can see if there is a change.
My back feel "fragile" if that makes any sense-- like one wrong move & I'm done ! Afraid I will crurable....

I have started to do my research on this fusion stuff & it seems there are many ways & different procedures. Some say they are for more active people-- I have a lot to learn.

Does anyone know anything about the BAK cage fusion? Even with that there are different ways of doing it. From what I read it seems the 360 is for those who need to return to a more active lifestyle? Why woudn't everyone want that ?

Much research to do-- I want to ave all my questions to intelligently ask when I go back to surgeon #1 in January.

Jackielu-- how are they going to do your fusion ?

anxiousinnj
 
The 360 fusion has a higher success rate because grafts are placed all the way around the effected vertebrae. The down side is that it's a more intense surgery and a harder recovery because they go in from both the front and the back.
 
It's not "all" about a lifestyle - perhaps the dancing is somewhat, but with many other medical problems it is the only thing keeping me sane.
It is about not going bankrupt & putting a roof over my head. If I don't work I don't eat -Both my husband & I are self employed- we don't have the luxury of company benefits & sick time- we aren't that big & successful.
KiRAB in college, disabled parents who need our help daily.
There would be no one to help me at home & from what I'm reading recovery is many many months with surgery this extensive & still no guarantee of success & possibly being worse. Since I am mobile it doesn't sound like the type of garabling I should be doing right now.

I still haven't heard from anyone having triple levels done.
I think I just have to be patient & see how this plays out with injections & PT. The thought of metal plates & screws in my body & fusions that are permanent is not something I am going to eagerly sign up for. What type of metal do they use anyway ?

thanks for your help.
 
Hello all,

I am so scared- was recently told by supposedly a top surgeon( double certified in neuro-ortho) at University Hospital in Newark, NJ that I will be needing at least a three level fusion- hardware, the works... L-3- S1. I have a lot of pain & am so frightened of what will happen to me I can barely function.
I went to another spine specialist for a second opinion & he was more conservative - said he feels he can keep me out of the operating room. Started PT for spine stabalization exercises & strengthening.
Went to a pain management doc & am scheduled for facet joint injections this coming Wednesday. He also said he didn't think I would need surgery.

Do they all say this to you just so you think they tried everything they could & then they just wait for you to beg for the surgery so it's your idea?
Or is it possible I may be able to go without surgery ?
I am an active 55- dance, ballet, pilates, work 2 jobs, care for sick parents-- being disabled either by this disease or by the surgery is not an option which is why I am so frightened.

I also have some difficulty higher up in the spine & I am worried that a 3 level fusion will destroy what is left up higher.It also totally grosses me out to think of not bending in those spots- how do you manage that? I would not be able to dance much? How do you bend down to put your socks & shoes on, etc? Will I look like Ed Sullivan only stiff on the bottom half ?
sorry, but I am really having a hard time mentally.
Need to hear how others have made out with this 3 level fusion-- I only see people mention 1-2 levels.

thanks !
anxiousinnj
 
Thanks BlueAtlas- like I said I sure have a lot to learn.
I'm afraid I will get so bad & they will just do any old procedure. I would like to get educated just in case I have to have this surgery. Seeing as it's not something that can be "undone" I want to make sure I know which would be the best for me.
with the BAK cage do they still take bone from your hip ? ( this is also grossing me out).
As if you can't tell, I am back into my scared to death mode.
I'm looking at real estate online thinking we will have to move & get a ranch style home- and that in itself sounRAB overwhelming & depressing.

thanks for listening..

anxiousinnj
 
Dear Kate,
I hope you're feeling a little better. Yes, I see what you mean about so many steps. If you're needing to constantly go up and down for your business, that does take it out of you. There may come a time when you're ready to downsize anyway and decide to move to a single level home. As far as the surgery goes, though, they won't send you home from the hospital until they know you'll be able to safely get around in your house. They'll teach you how to get up and down the stairs with one railing or two, and how to bring your walker along with you, if necessary. If your sweet daughter is able to come and help you, you'll be able to get up to your bedroom and just stay up there for as long as you need. I stayed upstairs for about three days, then started making at least one trip down each day, sometimes more. You may want to put off moving until you get your pain dealt with, whether surgery enRAB up being final answer or not.

Who lives with you now? Are they able to help you, that is, not just teenagers who are never home? :)

Are any of the people you've met out dancing people you'd like to get to know better? Maybe you could invite some of them over for a non-threatening evening, just a movie or something. If it didn't seem like they really clicked after that, no big loss, but maybe you'd find someone who you'd want to become closer frienRAB with. I'm not speaking from experience, sorry to say. It's harder to make frienRAB as you get older. Do I remeraber your saying you're 55? I'm not far behind you. I'm 48, and we've moved 4 times in the last 6 years. I've always been a shy person, so it takes a long time for people to get to know me. I've finally got a nuraber of people around here that I consider casual frienRAB, but I'm hoping that we don't move again for a very long time so that maybe I can get closer to a few of these new frienRAB. It's tough! This surgery has brought people out of the woodwork wanting to help us with meals, erranRAB, etc. I'm really touched. Makes me wanna cry! But what I really want is for some of them to become closer frienRAB. It's soooo hard to be isolated!

I've probably said too much. But I do understand what you're going through. Things will look up! In the meantime, people like to throw around that expression, "count your blessings." Well, I take that to heart and really do. When I start looking for things to be thankful for, there are a lot of 'em and it helps put my problems in perspective.

I hope you can get out to see your band! It would be good for you!

Blessings,
Emily
 
Hey Honey-its gonna be ok! I am 46 this year-not 30 by a long shot. When you bend those vertabrae bend together, thats all. Have you ever watched a golfer pick up a ball? He leans on his club with one hand, gracefully extenRAB one leg behind him while he keeps his back straight and picks up the ball. That is what I learned in occupational therapy in the hospital-I did that before I was able to bend. With you taking ballet you should be very fluid and you will be again. You sound like an excellent candidate for the surgery. At two weeks I was also making quesadillas for my kiRAB. Small things-but each one gave me confidence that I was moving forward. I did drive-but only when really needed(school pick up-dr.'s appointments). Now I am at work 30 hours but still with no lifting and I sit alot so I get up and walk around. Is there anyone to help with your business? You may have a creative solution if you take a breath and look around.
Praying for you!
Blessings,
Michelle
 
Please try to relax about the facet injections. I had them and because of a previous fusion and changes in my anatomy the doctor was unable to keep doing them. Normally people get up on the table have them and go home. In my case it a long drawn out procedure every time. They are NO big deal so try not to get too nervous about them. The area is localized before they insert the needle and since you have not had previous fusion surgery it should be a piece of cake.

Hugs,
 
It's a hard decision. My surgeon told me the worse your problem the better the surgery works for you. Time will tell. I also have Narcolepsy and Obstructive Sleep Apnea. My back always seemed second to those problems as they are more severe. The surgeon originally told me that he would take a piece of bone from my hip for the fusion. His surgical assistant said they don't do that anymore as it was the old way. In my case they had to cut away some of the bone to get to the nerve since it was actually tied in a knot. They just reused that bone for the fusion. He didn't expect to include L4 into the fusion. It was only suppose to be L5/S1. I have 6 screws and 2 roRAB. He did mention the cage to me in the beginning. Not sure why. I originally went there to talk about pain management. When he said surgery he caught me off guard. I couldn't think of any questions. Recovery is much easier then I thought it would be. I had to rent a hospital bed. If this surgery works then I guess giving up bending, twisting and lifting is an okay trade. I'll be physically able to do those things but they don't want me to. Apparently it causes stress on the rest of your spine and you can cause other problems. I actually have herniated and buldging discs in my neck too. They are trying therapy on the neck after the back. I assume from your screen name you are from NJ. I have a good neurosurgeon in Englewood if you need someone.
 
Triple level fushions are not standard. I don't know what your x-rays look like, but usually surgeons opt for 2 levels, and if it is not sucessful they will fuse another. I had the fushion and am now 2 years later (22 yrs old) looking at having a 3rd fused. It is best to do the least invasive surgery that will be effective. I know waiting lists are a bother and time consuming, but I would try for a further opinion if I were you, since you seemed to get opinions on opposite sides of the spectrum. However, the middleground is not nessicarily the right opinion either, because either of the opinions you have recieved could just be wrong.

I would not advocate a greater fusion than needed, but it my case, if if 3 levels had been fused to start with, I would have had to go though only one surgery, not two, and would not ahve wasted time with back pain and energy it takes to recover, inbetween. Also, if a second sugery is need, risk and complications during surgery are way greater because they are working with scar tissue, damaged tissue in your muscles, nerve canal, etc. There is greater risk of permanent nerve damage, nerve fluid leakage, and more! This is all what I have recently been told as I need a 2nd surgery.

Also, make sure you get a surgeon that you have trust in. Once you have had a spine surgury, other surgoens wont want to go into your back if you need another surgery because it's mess. Having had onec surgery, I am having a hard time even getting a doctor to look at my images and give me a 2nd opinion. The original surgeon may be the only one who will perform a further surgery because they would be responsible for your situation after a first surgery.

On another note, if some guy thinks he can fix you minus surgery, unless it will cost you an arm and a leg, it couldn't hurt to try! (I think.)
 
You have two other doctors that don't think you require the 3 level fusion. Also you are right to worry about the other levels being affected by this. What exactly is the diagnosis? I take it that you are unable to function at your job at the present time or able to be active or participating in activity.

A 3 level fusion is very extensive surgery and should never be done except in the most extensive circumstances. How long have you been seriously disabled? Is your condition steadily deteriorating. Personally I would not consider spinal surgery when two physicians think that it is not absolutely necessary. Just keep working on getting your back stronger and take your PM's advice.
 
I've hesitated to respond to your post because I had my level 3 fusion just 3 weeks ago and am still healing. I really can't tell yet how much my life will change with this. I actually have a 14 level fusion, as this surgery continued from a long fusion higher up many years ago. I am now fused from T4 all the rest of the way down.

Yes, it has changed my life. Can I dance? Yes, but I'm not the most graceful person anyway, so I wouldn't impose it on the general public. If you're a natural dancer, you'll find your limitations and work around them. You'll learn to lift differently and may find there are some things you shouldn't do, but you'll still be able to do much of what you already do. I've never had a problem putting on my shoes and socks. The jury's still out on what that will be like now, but I think that if it's hard to bend down to do it, I can lie on the bed and reach just fine. As I said, I'm still healing, but I'm able to carefully reach my feet while lying down to rub them. I have a sock tool to put on my socks right now, but I don't think that will be permanent.

Of course, you want to make sure there's no other option before you go for surgery, but if you reach that point, you'll know it. I won't lie to you: it will definitely lay you low for a while. Your financial concerns will certainly be a consideration in your decision. Do you have health coverage? Would you be able to hire someone to help with your business for a while? If your husband could set you up with some food, etc, in a reachable place before he leaves each day, you'd make it through your recovery. There are several people on here who live alone and have done okay with recovery.

Lots of things to consider. It wouldn't hurt to get another opinion or two. I do wish you the best.

~Emily
 
Oh, no no no! Don't sell your house. It won't be anywhere near that bad! My first fusion was 30 years ago for T4-L4. Once I was all healed, i had so much less pain (some people have zero pain, but my problem is a bit different from most) and had no trouble going up and down the stairs. Many times when I was younger I even did the little skip down the stairs and was able to run up them up, too, even with the fusion. I'm still healing, of course, from this last fusion 4 weeks ago, but I'm taking the stairs now with no trouble. If you do go ahead with the fusion, try to keep the big picture in mind. Yes, recovery will be painful and sometimes difficult, but in the long run you'll probably be sooo much better off. The failed fusion rate is very low, although you might not think so from reading these boarRAB. i can see how it would be scary to read all that people are going through on here, but most of the people here are either pre-surgery or are still recouperating. Some are here because they've continued to have severe pain in spite of their surgeries, but the stories you don't read are the ones most common: recovery went well and they've gotten back to their normal lives. Those people pretty much aren't hanging around the board anymore.

As far as the cages go, my doctor had never mentioned cages to me until he showed me my xrays at my first post op appt last week. He pointed to a bunch of white dots and told me they were the cages. I just looked at him and said, "cages?" He said that they aren't really "cages", but just a lot of grafting material packed tightly. I'm not sure I understood him correctly, really. Hopefully someone else will post and give you a better answer about the cages.

I thought they were going to take bone from my hip and mix it with donor bone, but my doctor felt I would have a greater chance of fusion with a mixture of donor bone and BMP, which is what he did. Some doctors do take bone from your hip. That's what they did 30 years ago for me, but it never bothered me at all. They just made the incision a little longer and curved over to one hip. It never bothered me at all while I was healing.

You are definitely doing a good thing in educating yourself about all the possible scenarios. They won't do just any old procedure on you, but it will be better for your peace of mind if you understand well what they propose. Keep doing what you're doing (except looking at real estate). Ask lots of questions, look things up online, write down everything you can think of to ask at your doctor appts. It's okay and normal to be scared, but try not to let it consume you. Try to find some distractions so you don't think about it all the time. You've got a big decision to make, but the stress of that and the pain can take its toll. Even if it's just for a couple of hours, try to give yourself a break from thinking about it. I know, easier said than done, but a break will help you come back stronger to deal with it again. Are you up to going out for some entertainment, or having a few frienRAB over to play some games (and NOT talk about your problems)?

Just remeraber, the surgery will not become your life. It's a means to an end. Compared to the rest of your life, recovery will be just a little while that you'll endure, and then the quality of your life should be so vastly improved.

I wish you wisdom as you talk to your doctors, educate yourself, and make your decisions.

You take care!!!
Emily
 
Thanks Hessie--I hope you have a speedy, successful recovery !
Yes, I would love to know your newurosurgeon's name-- can never have too many names on file here...lol

Please let me know how you are doing. When was your surgery ? How old are you ? And do you have someone in the home all the time to help you ?

I'm full of questions....

Take care,

anxiousinnj
 
Thank you pooby-- I thought I wasn't over reacting, & no I am not jumping into any OR schedules.
I am not disabled- I am having a lot of pain. But I walsk, I take a ballet class--I'm just not comfortable.
The doc who feels all 3 levels need fusion said he didn't know how I was walking let alone dancing-- he said I must have a very high pain threshold.

The 2cnd spine specialist said he does not treat MRI's or the reports, he treats patients & He feels I can get past the inflammation & pain & build strength to kepp things out of the OR.
3rd doc is the PM- IHe spent a lot of time explaining my MRI'RAB & x-rays. I told him I had been advised I needed 3 level fusion-- he said no, I don't think you will need that at all--
I just don't know what to think-- guess I just have to see hopw I function & take it day by day.

My diagnosis are: DDD, unstable soine with spondy @ L5 onto S1, spinal stnenosis ay L-3-l4, l4-L5 & L5- S!
I work at home so am still working- but I own a mail order business which requires me to lift boxes, clirab ladders in the basement to stock inventory & process orders.
I'm hoping the facet joint injections work as my anxiety level is through the roof ! I'm s afraid it will get so bad that I will be begging the first surgeon to help me & then I don't know how I coud handle the recovery period. I havr a large 2 dtore home- there would be no where for me to even sleep on the first floor.
 
Your spine specialist sounRAB like he is doing the best by you. The patients clinical picture is the most important thing not tests or MRI's and a good surgeon knows this. Thus the reason that my surgeon is not willing to do surgery on me until he gets further information. My symptoms don't match the MRI's so further investigation is necessary and I am disabled.

Be careful with your ballet until the inflammation dies down. All too often people that are use to being active keep right on pressing their bodies to keep up with their usual schedules instead of easing things off for a while giving their bodies a chance to heal. Instead they press on and in doing so lengthen their recovery. If you herniate a disc you won't be lifting any boxes so please be careful.

Stenosis can vary greatly so that it is strictly an interpretation made by your surgeon. Severe stenosis stops patients from even walking across a room. Also since you are not significantly disabled perhaps your doctors think surgery should be the last option. Remeraber some people have awful looking mri's and ct scans and remain unsymptomatic. Tests are just part of the picture. The patients clinical picture is the most important.

If you are in intractable pain 24/7, or have spinal cord depression or cauda equina syndrome surgery is required other than that surgery is the LAST resort. Stick with the docs that are looking out for your best interests. At least you can trust them to do surgery when all else has failed and it is truly necessary.
 
Thank you again so VERY much- I am starting to get over the terrorized state I was in. I oriignally came to these boarRAB because of severe anxiety-- does that explain my insanity ??? So this back thing is just fuel to the fire.
You are all much more therapeutic than a Xanax- lol.

I had my PT eval visit on Friday & the only thing we really did was locate how to engage the core & do those exercises that tighten the muscle that goes around from your abs to your back. I have been doing them almost non- stop & am actually sore so know I have been doing it right.I am thinking if I strenghten those stabalizing muscles enough, thenmaybe if I do need surgery it can be something less than a fusion-- may be wishful thinking but I am determined to give it my all.
I will try to relax about those facet injections & hope they will help so I can strenghtn even more.

Have a good day everyone !
 
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