talk to someone who has had spinal fusion

Hi Terri..I am an almost 2 year survivor of l4-l5 fusion with hardware. I will be totally honest with you. It was a LOT of pain and a long recovery, but sooooo worth it...would I do it again? Yes, in a heartbeat....hope this makes you fell better. SweetThing:D

Thanks for your honesty Sweet Thing.

I keep hearing the same thing, but the good news is that much of the pain has subsided right..Most of the leg pain goes away, and it's mostly the incision and healing pain and soreness right.

Have you resumed some of your old activities...can I be so bold to ask both of your ages?...Terri Z when is your surgery? Mine is Feb 5th...L3-L4 decompression and posterior fusion..perhaps L4-5 too...
The anxiety of waiting is the worst.

I have heard many stories that the first 3 days are the worst, and each day is better and better with of course some bad days and MUCH patience.

Best wishes to you both, I'm trying my best to eat healthy, take my calcium and stay strong.

God bless...

talk to someone who has had spinal fusion

Hi terri

I had fusion on L5 S1 on Dec 10 2007 so I am 5 weeks post op tomorrow. Up until yesterday I felt pretty awful, pain in both legs, numbness in one that I did not have prior to surgery and a lot of back pain and stiffness. I think I am starting to feel a little better, nothing tremendous just baby steps.
I can't tell you yet if my surgery was successful therefore I can't say I am glad I went through with it, only time will tell.
Yes, I can't lie, the pain is/was bad. It isn't anymore than I imagined in my head though prior to surgery (amazing what an overactive imagination can come up with). Although I did not count on the nerve pain, I think my surgeon could have and should have warned me about that one. :confused:

Lori

Everyone heals differently. It depends on alot of things. Many people have had a successful fusion. I am not one of them. I had my PLIF w/cage May 06 and my pain worsened after the surgery. Not at first, but a few months into it all of a sudden, I seemed to be going the other way. I thought it was from a fall, but with all of my later symptoms, it appears scar tissue and seperating vertebra were to blame. I have been off of work for 2 years now, waiting month after month, appointment after appointment to hear I could go back to work. I got a new Pain management doctor in December and in two weeks, he got my pain under control so well, I can't believe it is even me. Last week, he told me to go ahead and go back to work! I'm so excited and nervous all at once. My point is, if you really need to get back to work in a hurry and are having problems, don't let them dismiss you. The medicine I have been given is nothing but a bandaid, but it is buying me time to get back to some sort of life and to really have time to consider my future options. Good luck to yoU!

I had my surgery last Monday evening. Obviously it is much too early for me to say anything about an outcome...but I can comment on a couple other things. I think the most important thing is that you do your homework and know exactly what you are getting into -- at least as much as you can, barring any surprises. For the most part these surgeons have a "special" way of using the English language. You really have to do your homework in order to have realistic expectations of what the surgery will and will not accomplish.

So far my surgery has been fine. The pain has been controllable. I have been prepared; there have been no surprises. Who knows? I may hit a huge bump in the road any second now...but so far, so good. :cool:

Keep in mind we all can have very different experiences with this surgery. I had my lumbar fusionL4-5) Nov.27,2006, the only thing that it has helped is the stability of my spine. I still have a lot of leg pain when I am active but now it is in both legs and not just my left leg, and still have to get the occasional epidural for back pain. My pain meds are stronger now than they were before surgery. That being said I might have waited to long to have surgery and maybe the nerve damage was already permanent. The biggest thing that I feel I wasn't prepared for was the pain you have when you wake up. On a scale of 1-10 it was a fifteen. It did calm done to a tolerable level after a couple of hours on the morphine pump. I hate to say this but I feel like I made the biggest mistake of my life. Again everyone is different and many people do go one to have a normal active life.

It was much more involved then I thought it would be. Not just the pain but everything. Did not know about never bending again. Stuff like that. I don't ask alot of questions which is my downfall. I wish I found this website before my surgery. You get a lot of information. I have had many surgeries for different things and did not think the rehab was any longer. Just research it. Find out what you will need at home right after surgery. You know, stuff like that.

I had a laminectomy in Feb 05 (L5-S1), and fusion w/hardware (L4-S1) Jun 06. I was in a hard brace for 12 weeks after and remember having some severe pain. It was slow healing and I was home from work for 12 weeks, and back to work slowly.

It was the best decision I could have made to go ahead with the spinal fusion. One year after, and strong bone growth around the fusion, I bought my horse. I've been working with him since May of 07 - it's been great! Good luck to you. It's worked out very well for me. I take Topamax still for nerve damage to one foot, but it's not slowing me down.

:cool: I wish everyone could have the results I've had.

Terri Z
I had a 2 level fusion 4,5 & 5,6 and it was 18 years ago. 1990
It was truly a piece of cake. Had 10-12 years of great results. UNTIL... the innevitable. had no idea.
I am now facing a possible 2nd surgery. The scar tissue is bad, and the stenosis (narrowing) of the spinal canal is pinching nerves. The C 6,7 is bone on bone (below fusion) above is bulging and below it is bulging. I Just had an epidural steroid injection and it took the pain away for 3 days. unreal exhuberation and almost a sureal type saga. I see the surgeon tomorrow for review of recent MRI, Epidurals, and options.
Any words for me??

Thank you all for such quick and honest resonses. I need to either cancel this surgery or feel like I'm making a good decision to go ahead. Last month, I was ready to hop on the table -- I was in so much pain. After three cortisone shots though, honestly I am feeling OK. My back is still screwed up -- severe stenosis, yada yada. I almost wish I felt worse as I am scheduled for surgery in two weeks!! Wondering if I should just live on the shots or wait until I feel like crap again.

Terri

Why don't you tell us a bit more about your situation? What are they planning on doing? What is your diagnosis? What have you tried other than surgery?

Thank you all for such quick and honest resonses. I need to either cancel this surgery or feel like I'm making a good decision to go ahead. Last month, I was ready to hop on the table -- I was in so much pain. After three cortisone shots though, honestly I am feeling OK. My back is still screwed up -- severe stenosis, yada yada. I almost wish I felt worse as I am scheduled for surgery in two weeks!! Wondering if I should just live on the shots or wait until I feel like crap again.

Terri

I know how difficult this is, huge decision. I actually felt a lttle better before surgery too. Then I had a bad day, then a good day, it was if my brain was playing tricks on me. But, I knew it was just a matter of time. The bottom line is, as you already know, only you can make this decision.
Best of luck,
Lori

For the most part these surgeons have a "special" way of using the English language.

You made me laugh! I remember asking my surgeon before the surgery how often I could go up and down the stairs after I got home from surgery. His mouth said, "as often as you want." But his EYES said, "you're not gonna want to!!!"

TerriZ, I think you'll know when it's time. Yes, it's a big surgery, and yes, recovery is painful. For the amount of pain we go through with this, honestly, there ought to be a word with a lot more letters in it or something. "Painful" is too easy. Stubbing your toe is painful. This is more, way more, and recovery will be measured in months, not weeks. I'm not trying to scare you, just being realistic because you asked.

Once I had made the decsion and then had those occasional "good" days (which really aren't good, as we all know, they just aren't as bad), I made myself think about how I was on the bad days. I knew I needed to do it and just stop doubting my decision. I'm now 15 months post op and don't regret it for a second. It was worth every second of pain I endured.

Let us know how you're doing. There are lots of people here who have been there and can share their experiences with you. (Please just keep in mind that most of these surgeries are very successful and that those successful patients are off living life, not hanging around on this board. We are NOT representative! Many of us here have had complications or continued problems. Don't let us scare you out of doing what you need to do.)

Take care,
Emily

Thanks for your honesty Sweet Thing.

I keep hearing the same thing, but the good news is that much of the pain has subsided right..Most of the leg pain goes away, and it's mostly the incision and healing pain and soreness right.

Have you resumed some of your old activities...can I be so bold to ask both of your ages?...Terri Z when is your surgery? Mine is Feb 5th...L3-L4 decompression and posterior fusion..perhaps L4-5 too...
The anxiety of waiting is the worst.

I have heard many stories that the first 3 days are the worst, and each day is better and better with of course some bad days and MUCH patience.

Best wishes to you both, I'm trying my best to eat healthy, take my calcium and stay strong.

God bless...

No problem....I was 51 years old when I had my fusion, I am 53 now...my awful leg pain was gone when I woke up in recovery! When they got me up to walk the next morning, I cried not from the pain but because I was so used to that awful pain..most of the pain after that was recovery pain...the first 6 weeks were rough....after that it was all uphill for me..I was back at work full time at 11 weeks. Hope this helps, any questions, I'll be glad to help if I can.....take care...ST

I had a 3 level Fusion in April of 06 L3-4 L4-5 L5-S1. I was not able to sit for longer then 5 mins before my surgery. It took til Jan 07 before the pain was really gone. I went through HECK. Again not everyone has problems with their surgery. I know after my CT Scan a year later that i did not fuse correctly. I am not in SERIOUS pain, occasionally i hurt but i'm trying to put it off as long as possible. Don't know what the next steps are. and i don't want to find out yet till i have too.

The best advise i can tell you... make sure you do your exercise after the surgery. I can barely put my shoes on some days, because of the muscles in my legs.

I had to do the surgery and even though i am starting to feel pain again.. it was the best desicion i made.

Good luck and keep us posted :)

ST,

I am a "young" 60 year old and don't care to add to the aging process.

Terri ~

It doesn't sound to me that you have explored all your options yet. It sounds like maybe you entered into surgery thinking it would be a fairly quick way to resolve your pain, and now you know that isn't always the case! Maybe you need to cancel your appointment for now and try some other options. As everyone said to me before I made my surgery, "you'll know when it is time."

my fusion was very good i didnt have a hard time at all and allthough it did not take i would do it again in a heartbeat and now i may have to have anterior and posterior to refuse it i know its worth it.

I had my first surgery on 03/06. It was L-4, L-5 S-1 fusion with instrumentation. Decompression/laminoctomy. Pelvic metal plate/clips. Bone growth stimulator inserted. Harvested hip bone.
My pain was unberable even though I have a very strong pain tolerance. I was totally dependent on my walker, PK and my family. Pain was never less than 10 out of 10. Than by 5th month it got somewhat better, but pain never been less than 6. And than by 8th month my surgery was diagnosed as Failed and more pain and other severe symptoms occured due to the nerve damages.
I had my second surgery done 3 weeks ago (removal of old hardware, fused 2 more levels, decompression, laminectomy, etc) and pain gets sometimes to 10, but most of the time about 6-7, which I can tolerate. I don't depend so much on everybody and even a walker around the house as the first time.
I feel that I am stronger surgery wise this time.
So see, you never know how you body will handle it, everyone is so different. Just think positive and hope for the best.
One thing I can tell you for sure: recovery is not a walk in a park: long, painful, uncomfortable, a lot of limitations, mental and physical pain. But hey, we all still here and hopefuly one day this will be in a past, right?
Good luck to you!:)

It has been several years since my last surgeries [had two 7 days apart to repair two failed fusions] - had to remove discs from L3 to S1, add cages during the first surgery and remove existing hardware and replace with new. Essentially, I have had 3 lumbar fusions and even though it has been 3 years since the last one - I still remember the pain vividly - espescially as someone posted, when I woke up ... I had a real jerk for a nurse who refused to assist me. Anyway, I would not try to scare anyone - and it may not be a good idea reading about this kind of stuff. Pain is relative. I have had two very bad experiences - first one, nurse incorrectly hooked up the morphine pump and the medication just dumped out on my hospital gown. My point is - you need to make sure you have someone who is with you to look out for you and to make sure you get whatever you need ... WHEN YOU NEED IT. Sorry, I obviously still have some issues from all my surgeries and the intense pain. This is not a surgery that should be approached casually and certainly should not fall in to the elective category.

Thank You. You confirmed the decision I made. I cancelled the surgery today and I feel like I have a new lease on life already. Actually the PA at the orthapedic center agreed with my decision as did my GP.
Terri

This board does help to have a few avenues to persue when we feel like crap!
I am passed the stage of last update in December. here goes.....
I have seen a new Dr. a " Neurosurgeon " She has been thoughtful, thorough and will listen carefully to my questions and answers them. Includes all body parts not just singles out my neck.
She /Dr S. determined from my new December MRI, that I have 2 bulging discs above and below the 18 yr old (anterior) fusion. I have bone on bone at base of neck.
I also have low back disc disease bulging disc, narrowing disc, that shows narrowing of the spinal canal which makes so much sense why I have pinching and numbness and pins & needles, I now know I am not crazy.

Thanks, I listened to you guys at HealthBoards.com and found a new Dr. I persevered and it actually all fell into place beautifully. I got a new MRI and here I am. She ordered a epidural steroid injection that WOW'D me for 2 days straight. I am having another one on the 29th.
Pain is back but now I am considering a "intrathecal drug delivery system" by Medtronic. Pain pump. Using less meds and regulated properly I'd love to feel more human. I have heard many wonderful things about this. I was afraid of addiction but it is a viable source of help.
The point is, my new Dr has offered this for relief. She knows that surgery is in my future as do I and this would give me 10 years to work with. I would be using less meds and get more relief.
Anyone have any news on this?

Hello TerriZ ~ And congrats on reaching a decision. After you get this worked out, you might want to look for a specialist in Physical medicine (physiatrist) who specializes in spinal issues. If you aren't familiar, this is a specialist who puts together a treatment program for you, and tries a variety of treatments just short of surgery. They will provide another point of view that is not strictly based on surgery.

You now have time to make an informed decision without feeling pressured. You do not want to feel rushed into this major decision because it's something you'll have to live with for the rest of your life. (In the last 3 years, I've been to 8 specialists -- just had my fusion on the 7th and feel good about my decision as it was really well-considered!!

Continue to keep asking questions as you continue on learning about your back and the problems it's giving you.

Good luck to you on your journey!

hi,you all been through the wrecking mill.I'm a chicken,was suppose to have surgery last year already,L5S1 area.my first surgery in 1995 was a partial discectomy through the microscope used today,back then.was helpful,but after 10 years disc is narrowing where have some bone on bone.also few upper bulging herniated stuff.I saw two surgeons,one wants a fusion with bone graft,hardware,the other who did my first surgery says don't need a fusion according to mri,he wants to go in to shave bone away from the nerves.Not certain what to do,I'm at a decent comfortable level after getting the radio frequency Rhizotomy done last year,I don't rely on meds if I do workers comp won't pay for any,another problem I'm having.I was suppose to repeat the RK and the WC denied me again.my aunt just had 3rd surgery for same problem,she now 73.was very painful and she a strong woman,I'm a weakling.I been a nurses aide for 15 years seen plenty,but in all my care of people never met anyone confide to wheel chairs or bed due to being paralized or problems from a normal degenerating back.In my sad case anyone have any solutions to best what to do?I wanted a 3rd opinion but got denied that too.I admit my back will never be better no matter what gets done on it,you don't get better with age.But I do suffer alot from foot pain,burning feeling.To Terriz,I think you decided good at the moment.

oh yes another thing,the other doctor who did my first surgery doesn't use hardware,so what the heck holds it together?just confused as usual:angel:

ST,

I am a "young" 60 year old and don't care to add to the aging process.

Hi girl....I am a "young" 53 now, and doing a LOT more and feeling a LOT better than I did 2 years ago...actually I think I feel better than I have in a LOT of years....good luck! ST

It has been several years since my last surgeries [had two 7 days apart to repair two failed fusions] - had to remove discs from L3 to S1, add cages during the first surgery and remove existing hardware and replace with new. Essentially, I have had 3 lumbar fusions and even though it has been 3 years since the last one - I still remember the pain vividly - espescially as someone posted, when I woke up ... I had a real jerk for a nurse who refused to assist me. Anyway, I would not try to scare anyone - and it may not be a good idea reading about this kind of stuff. Pain is relative. I have had two very bad experiences - first one, nurse incorrectly hooked up the morphine pump and the medication just dumped out on my hospital gown. My point is - you need to make sure you have someone who is with you to look out for you and to make sure you get whatever you need ... WHEN YOU NEED IT. Sorry, I obviously still have some issues from all my surgeries and the intense pain. This is not a surgery that should be approached casually and certainly should not fall in to the elective category.
I agree with you on the fact that it shouldn't be in the elective category, however I am an avid believer in being proactive before it is too intense that we make bad choices. I took a year and a half to decide. Couldn't have done it without my husband. We all have to make decisions based on the information from the responsible people who love us and know us best. They are their to help and guide and assist. The point is that when we make a new decision based on the facts we can be relieved and go forward with confidence and determination. Our gutt instinct or better yet our God given discernment. When in doubt? DON'T.

Terryz, I think the pain is worth the results. Just make sure that you have a good surgeon and do everything they ask for you to do. Good luck Indychris.
I also liked to here that MKF is doing great and say it is nice to see posting again.

People with shorter fusions will have less pain and better results than those that have had larger/multiple levels of fusions. The more levels you've had, the less apt you are to have a good outcome. Been dealing with this most all of my life with multiple surgeries and know THOUSANDS of people that didn't have good outcome. My fusions were T-5 to the sacrum. Originally started at T10-L5. Then what's even worse is when you add the anterior as well and start removing ribs.

What holds it together is the *bone* used for the fusion, especially in shorter fusions. Hardware for larger levels is more of an aid to hold it together in the early months. The instrumentation over a year serves as no purpose in holding anything together.

I don't think I would have had the surgery if it was not absolutely necessary. The vertabra was slipped so it had to be done. If not for that I would have sucked up the pain and lived on. The surgery was rough and for the first few months I felt pretty good. About 4 or 5 months post op the pain started and has only gotten worse. I had no leg pain before surgery. There was nerve damage but it didn't hurt pre op. Now it is killing me. The surgery really changed my life forever. I had to retire at 43 years old because of the pain. So my financial life changed. I'm on a ton of meds. I don't blame the dr. Tests have shown that the hardware is exactly where it should be. It is fusing the right way. They think it is scar tissue. Not the doctor's fault. I'm just being honest. So just my personal opinion. I would just research it. Weigh the pros and cons. Go in to it informed. I was not as informed as I was with other surgeries. I don't know why.

ok, reading this thread now has made me scared to death. Iknow that when I had my first fusion w/ Harrington rod at 13 was enough. Recovery and pain was lengthly but I got over it. But now that I am older I am totally terrified. I know I have to have this done and I will have this done (ALIF & PLIF) but y'all are talking 5-8 months of recovery. I don't have that much time. I need to get out of this house and go to work. I need something else to dwell on than this plus now that I don't have an income it's harder with the finances.

I would like the matter of fact, no holds barred truth on how much pain and what I am looking at as far as what to do when I get home from the hospital and do I need 24 hr care. I want to know everything down to the last minute. I have to be mentally prepared for this and right now I am not. I want to make sure I have all of my ducks in row as far as the house goes.

So if somebody wants to be frank about their situation I would love to hear it. Again it will help me get prepared and give me some control back before I pull out my hair.

I did not have 24 hour care. My husband took off work only for my actual day of surgery. My two boys were around, because I homeschool them, and got me breakfast and lunch and brought it to me in bed, changed videos for me, etc. But they both work part time and were off to work most days around lunch time. Then I'd be alone for the rest of the day until my husband got home, usually not before 8 pm or so. I had a reaction to the anesthesia and was prone to passing out for the first about 6 weeks after surgery, so I had to always use the walker, but even so, I was able to get out of bed myself, use the bathroom without help, shower once every 2-3 days and wash at the sink on the days I wasn't up to showering, change my clothes (using my grabber) and keep track of my meds myself. I was certainly in pain, no doubt about that, but I kept my meds in my system all the time and that pretty much controlled it. Some days were harder than other days, but it was manageable. I was on Percocet at a pretty high dose for about maybe 2 months, then tapered it a bit and then stepped down to Vicodin.

Are you having only the bottom few levels done? Or are they going up into your old fusion, too? The fewer levels you have done, the faster and easier your recovery. I had 8 levels done this time, so my recovery was a bit longer than a lot of people here.

One thing we won't do here is sugarcoat anything. We'll tell it like it is, since we've been there and know how much we haven't appreciated people who make it seem like this will be a piece of cake and you'll be back to normal in a week or two. That's not going to be the case. It's a big surgery with a long recovery. But maybe I should shut up. I think I've scared a few people. Some people have said their recovery was way easier than they expected, after reading what some of us have been through. I know my recovery was harder than some (also easier than some). Try to read different threads from other people to get a more general idea of a typical recovery. Everyone's different. Two people with the same problem, same surgery, same surgeon, can have completely different recovery stories. But one thing that I think you'll see in common is that it does take time. It won't be a quick fix. If you can work without a lot of physical exurtion, you might be able to get back out there quickly. Some people have been back to work in 6 weeks, but not in any physical capacity.

Hang in there!
Emily

I agree a few people have gone back at 6 weeks and many other have returned at 12 weeks. This is major surgery and if you push yourself to hard you are more apt to have a set back and it is going to only prolong your recovery. Just my 2 cents.