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.
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.
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'ds & 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, climb 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 sounds 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. Remember 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.
your 2nd and 3dr opinions are scary, if they keep you in pain with what they "think they can do for you" I would run away. They are telling you what you want to hear. I would see yet another spine surgeon to go againts the first opinion. Sometimes you have to set the life style aside and spend the time to heal. The annoying job and commitments in the race do not care if you are healthy or not. I would see another spine specialist, fusions are major, but it's not the end of the world.
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.
Kids 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 gambling 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 ?
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.
Thank you so much Emily - you made me feel much better, & I appreciate your gentle honesty.
I know if it comes to it has to be- well it will have to be. We have horrible health coverage & we have to pay for it all ourselves-- if I don't work-- well it's just a viscious cycle.. this is adding to the stress & fear. I have already put out over $7,000 cash for doctors this year for my health problems- bills our plan did not pick up. And we pay a high monthly bill to boot for this horrible coverage. Looking into other plans but it's hard to concentrate when you arent' feeling well.
Anyway- again you made me feel better. I just have this horrid picture in my head of never being abnle to bend in any way- and if you do screws are breaking or something-- I just have a frightening mental picture as I don't personally know anyone who has had a fusion- let alone a triple. I have had a few people tell me that a triple is looking for trouble & best to try to find pain control if possible, so I just don't know what to think.
I wish I could interview 100 people so I could actually see what type of various recoveries have been made......sigh.
I hope you recuperate fully & quickly !
Please keep us posted- will pray for your recoup.
I too am facing a 3 level spinal fusion. I have been seeing neurosurgeons and ortho surgeons for approx. 15 years now. I have done a dozen epidurals, A dozen physical therapies and the end result is the pain just never goes completely away. I had a lamectomy and synovial cyst removed from my spine 3 years ago and I think that weakend my spine and caused more problems because now I have Spondilolisthesis 2nd stage and it seems nothing I do helps. I have my surgery scheduled for Dec. and I am scared to death. If anyone has any suggestions for me I would also be glad to hear from you.
I realize I am only two level fusion (L4/L5/S1) but three months out I can bend over and touch my fingers to the floor. I was flexible and VERY busy before the surgery so my Ortho had me in PT at 5 weeks. Thats the earliest I ever heard of anyone starting but he believed I would quickly regain the flexibility I had before and didn't want to see me sit around afraid to move thinking I'd "pop a screw" in my words. I was walking 1/2 mile at 2 weeks, driving my own SUV at 3 weeks-I took whatever pain meds I had to but I kept moving then resting-moving then resting. I feel really good now. I am still careful but feel like alot of my "old" life has been returned to me with some exceptions.I was so scared of accepting limitations in my life and was so lucky to have found a doctor who believed in working thru them.
I'll be praying for you all!!
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 ..
momz- wow your post is sure uplifting. I'm happy for you- sounds 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..
Last edited by Administrator; 03-17-2014 at 05:26 PM.
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 extends 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 kids. 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!
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.
Thank you again so VERY much- I am starting to get over the terrorized state I was in. I oriignally came to these boards 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.
Maybe I am not the best person to respond, but unless you have life altering pain, avoid surgery. It is not natural and is an absolute last resort. My mother just had a 3 level lumbar fusion , but with a decompression, and there is no way she will be without a walker for at least another month. She is 2 weeks post op, and she only resorted to surgery, because she wanted to be able to walk again pain free. Who knows if that will happen. I just know that this is a huge surgery, and unless the pain is too much to bare do not have it done. Hope I helped you. Sincerely Lauree(lhines)