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Old 04-28-2010, 05:46 PM   #1
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27 y/o active - TLIF at L5/S1 or live with the pain??

Dear all -

I am looking for advice from people who are around my age / activity level to tell me about their experiences with TLIF spine fusion surgery, or experiences in deciding NOT to have the surgery. I have had this back pain for 9 months now, have had 22 PT visits, 2 cortison injections, own/use my home traction unit, muscle relaxers, NSAIDS, you name it. Everything but fusion surgery. I am 27, and I used to be a runner until this disc/spine issue came up in early Sept. 2009. I go to the gym every day, I used to be pretty overweight, got active and lost about 32 lbs, and I have been a 5-7 day runner/gym goer for the past 4 years.

Yesterday a neurosurgeon advise me I should have TLIF at L5-S1. My disc is completely bulged out of the disc space, and there is no disc space, L5 is collapsed onto S1. I have sharp pain in my right hip/through my upper thigh & buttocks (more of a nerve pain). Most days, the pain is pretty tolerable and sometimes I even have really good almost pain free days. Every couple of weeks it gets debilitating. It is hard to fall asleep at night/hurts when I wake up and I'm an attorney so I sit at my desk pretty much all day every day. Right now, I don't feel that limited and think I should continue with life as is. My doctor said that if I do that, I am prolonging the inevitable, and eventually my vertebrae / spine will not be able to distribute / tolerate the pain as well and it will become even harder/more painful to perform basic daily functions. I feel like my fears about the surgery are superficial, and that I'm basically being a chicken because I'm scared. I have some concerns and I am really really hoping that some one there who is like me can tell me what their experience has been like. Some of my major worries:

1) I have a desk job. How long will I really be out of work? I have a State job, do not make much money and have not earned nearly enough sick time to be out for the 6-8 weeks my doctor suggested would be likely.

2) How long before I could at least swim/do the elliptical at the gym? Any physical activity at all? (other than walking, I have read about how important it is to walk 1-2 hours a day and I can handle that but it's not the same). I cannot handle being sedentary, even if it's only for 6-8 weeks or possibly 3 months. Some people have said it takes almost a year for a full recovery? I am ok with never running again, I have accepted that, but being sedentary for months is hard to digest. Advice?

I know this was a long post, but I am really hoping someone out there will read it and reply? All doctors have their separate opinions, and none of them say the same thing. I'm scared about having TLIF surgery, but I'm scared not to have it, and I get absolutely elated at the thought of waking up one day without this pain - but at what cost?

Thoughts?

 
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Old 04-28-2010, 08:41 PM   #2
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

It's a quality of life decision of which only you can be the judge. Personally I will not tolerate serious pain even if surgery is the only viable option. I'm the first one to jump on the OR table and tell them to start. I have recently had extensive surgery which has required relatively sedentary existence but it's all worth it to have the pain at L3-L4 is gone (vertebrae had slipped forward and had to be fused to L4)

My first surgery was in my 20's and I recovered quite well. I was out of work for about 6-8 weeks. My employer didn't provide extensive sick pay or disability leave so they just said "take a few months" (it was a non profit social service job). My parents helped out so I was in no hurry to get back to work (as it was summer and I was enjoying sitting back and reading, etc). I eventually got back to swimming, walking, hiking, cross-country skiing, etc.

Don't let my surgical history scare you. I have loose ligaments so my joints (including my spine) move around too much. That is the sole reason for my subsequent lumbar surgeries.



1) I have a desk job. How long will I really be out of work? I have a State job, do not make much money and have not earned nearly enough sick time to be out for the 6-8 weeks my doctor suggested would be likely. ASK YOUR HR/BENEFITS IF THERE IS ANY SHORT TERM DISABILITY AVAILABLE FOR MEDICAL CONDITIONS THAT REQUIRE YOU BE OUT FOR MORE THAN A FEW DAYS. If you live in CA, NY, NJ, HI, PR or RI there is state mandated Short Term Disability. If you don't live in those states often state employees have Short Term Disability (STD) available to them. L5-S1 is a single level fusion and your recovery could be relatively quick, maybe getting back to work part time a few weeks after surgery and making sure you are fully ready for full time by gradually increasing your hours if this is an option. But you always have to be prepared to be out longer just in case you recovery more slowly.



2) How long before I could at least swim/do the elliptical at the gym? Any physical activity at all? (other than walking, I have read about how important it is to walk 1-2 hours a day and I can handle that but it's not the same). I cannot handle being sedentary, even if it's only for 6-8 weeks or possibly 3 months. Some people have said it takes almost a year for a full recovery? I am ok with never running again, I have accepted that, but being sedentary for months is hard to digest. Advice? ACTIVITIES AFTER SURGERY WILL DEPEND ON HOW WELL YOU ARE RECOVERING AND WHEN YOUR DOCTOR RELEASES YOU TO RETURN TO THESE ACTIVITIES. THEY KEY IS TO LISTEN TO YOUR BODY. IF YOU AIM TO DO THE ELIPTICAL FOR 30 MINUTES BUT HURT AT 10 THEN YOU'LL HAVE TO STOP. YOU'LL WANT TO WORK BACK UP TO WALKING. 1-2 HOURS A DAY IS EXCESSIVE. FIRST YOU'LL START AT 15 MINUTES AND THEN WORK YOURSELF UP TO 30-45 MINUTES BUT ONLY WHEN YOUR BODY IS READY. FULL RECOVERY MEANS "FULLY FUSED". I AM 3 MONTHS POST L3-S1 FUSION AND AM ABLE TO WALK AND GET AROUND QUITE WELL, AND MY SURGERY WAS MORE EXTENSIVE. IF YOU ARE HEALTHY AND FIT GOING IN YOU WILL HAVE A MUCH BETTER RECOVERY AND RECOVER MORE QUICKLY.

The key is that you have to decide when the pain has been enough and you are willing to set aside a long period of time to recovery. That doesn't mean being bed bound, but controlling your urge to over do physical activity. To acknowledge that maybe you can only do 30 minutes of walking by 4 weeks, and that's fine.
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Rt&Lt thumb arthroplasty 2012 ; RT TKR & Bilat CTS 2011
Fusions: L5-S1 (87), L4-S1 (93), C5-C7 ('06), L3-S1 ('10)
C5-C7 foraminotomy 08

 
Old 04-29-2010, 05:53 AM   #3
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

My husband is also a state employee and in Arizona if you are out for an extended period of time the HR Department can ask other employees to donate some leave time to you. That helped us when he was out for cancer treatment.

We also opted to "stretch out" his leave time by getting paid for 20 hours per week instead of 40. That helped by keeping him listed as an active employee to keep our medical insurance. After a certain period of time, he was eligible for short term disability.

Perhaps these suggestions might help you. Take care.

 
Old 04-29-2010, 06:28 AM   #4
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

You should seek a second opinion from a Surgeon who performs Selective Endoscopic Discectomy. There are a few Surgeons in the Phx area. This surgery is minimally invasive (1-3 weeks recovery) and statistically provides the same results. I am 48 and have chosen to have this surgery on 5/4. I had a cervical 3 level disc replacement and fusion and feel this option is last resort. Look into this - there is lots of information on the web. Take Care - Buckwheat

 
Old 04-29-2010, 04:44 PM   #5
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

That was all very helpful - thank you all so much for responding. I have a second opinion scheduled for May 10th. I really don't want surgery, but I really want to feel better and don't want it to get worse! Funny enough none of the doctors I've talked to have mentioned anything about a discectomy, etc. I need to explore that more.

 
Old 04-29-2010, 05:37 PM   #6
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

So, I looked up the Selective Endoscopic Discectomy and, the problem is (I think), that my L5 and S1 are basically sitting right on top of each other. There is no disc space/height there. I feel like my pain is in two places, although rarely occurring at the same exact time. One place is right over my right hip, where I know my bulging disc is sitting (it is completely protruded to the right of my spine). The second place is right in the middle of spine, where L5/S1 meet. I have one good disc between L4-5, and then the three discs above that are very degenerated. (I'm only 27!?!). I have also been told for ever by every doctor I've ever seen about how unstable my hips/spine/feet/legs are. So, I don't know if I would a good candidate for SED? Does anyone have any thoughts? I would have SED in a heartbeat over TLIF/fusion, but I don't know that SED is going to solve anything / the bigger problem?

 
Old 04-29-2010, 06:42 PM   #7
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

When you have one vertebrae sitting on the other, essentially most of the disc material is out of where it should be and can't be moved back into the space. If this is the case you should be able to clearly see the area of collapse on an x-ray (you'd see in levels above a disc between the vertebrae with appropriate disc height but reduced or no disc height at L5-S1). Many times in the L5-S1 area this occurs, and what fusion does is pull L5 and S1 together in proper alignment, while eliminating any disc or other material that is impinging the nerves (like bone spurs that may occur). Certainly get another opinion and perhaps at least one from an orthopedic spine surgeon (I've used OSS on all my spine stuff).

If you are seeing your L5 is virtually on your S1 then removing disc material is only half the battle. You want to make sure L5 and S1 are fused so there is stability. So when you are out riding a bike you don't move slightly the wrong way and L5 moves on S1 (bone on bone pain) and you have ongoing instability. In cases like this often the L5 may fuse itself to S1 over years of bone on bone rubbing. BUT, this doesn't mean it's in correct alignment. You want to intercede before it's too late no matter what treatment option you choose. SED is usually for those with good disc height and just a bit of disc material out of place (the OSS who did my neck fusion is the son of one of the major innovators of SED so read a ton about it while sitting in their office.

I hope all this helps!
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Rt&Lt thumb arthroplasty 2012 ; RT TKR & Bilat CTS 2011
Fusions: L5-S1 (87), L4-S1 (93), C5-C7 ('06), L3-S1 ('10)
C5-C7 foraminotomy 08

 
Old 05-01-2010, 05:35 AM   #8
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

Thank you, that does all help! I have seen my films several times, and I can see where there is no space (not much anyway) left between L5-S1 for the disc to go back in. I just feel like it's not "that bad" yet, so much so that I should have spine/fusion surgery, it's not affecting the nerves in my leg too much (although it does aggravate the radicular pattern right under where the disc is sitting, but only when I try to run-which I've given up). One part of me says I shouldn't do it now b/c it's not that bad and *maybe* won't ever be absolutely necessary - the other part of me says if I wait, it will get worse, and the recovery could be worse/longer too. I guess we'll see what the 2nd opinion doctor says.

Anyone have any thoughts on Ortho. spine surgeon vs. neuro spine surgeon?

 
Old 05-01-2010, 06:00 AM   #9
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

I prefer Orthopedic Spine Surgeons over Neurosurgeons. Totally based on my experiences. Each OSS (used 3 over the last 17 years) has been more focused on getting me to return to maximum spine and body functional ability.

I did consult with a NS here and he was a viable choice. He has a good spinal reputation but my gut told me the OSS would work better for me.

In either case make sure their sole practice is spine work. Not a NS who does brain surgery and "some" spine work or an OSS who does shoulders and "some" spine work.

My current OSS is in a multi-doctor orthopedic practice. He and 1 other doc are solely spine. The remainder are OS who work on other areas

And, as you know, my surgery decisions have always been based on "do it now" so it doesn't get worse and need more extensive work later.
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Rt&Lt thumb arthroplasty 2012 ; RT TKR & Bilat CTS 2011
Fusions: L5-S1 (87), L4-S1 (93), C5-C7 ('06), L3-S1 ('10)
C5-C7 foraminotomy 08

 
Old 05-04-2010, 07:31 PM   #10
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

Wow first time poster. Will have a TLIF in less than 17hrs. "Let's Roll"-reconranger

 
Old 05-04-2010, 10:16 PM   #11
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

Hope I'm not making things too complicated here, but you said you also have right hip pain, and it also hurts after you get up in the morning. Does your right side or right hip area always hurt after you get up from a lying down position and/or from a sitting position? If so, you may have a problem with your SI joint as well. I have multiple back issues and two surgerys under my belt already. This winter my pain got worse, and I assumed my back got worse;which was partially true. When I finally told my doctor my EXACT symptom-hurts horrible after I get up, he pushed on both my hips, and the left one didn't hurt but the right one , oh,boy!! So, you might also want to ask your doctor about x-raying the SI joint. I think we have someone on the boards here that had two unnecessary back surgerys because the real problem was her SI joint. Just a thought.....janiee

Last edited by janiee08; 05-04-2010 at 10:18 PM.

 
Old 05-05-2010, 03:10 AM   #12
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

Thank you for the heads up on the SI joint. What did they tell you you needed surgery for? Did you have spine fusion? Was it just a disc issue or was it a spine/facet joint/collapse of the disc space issue?

I have been told by 2 PT's that I have a chronic SI problem, i think it's some kind of instability, but all of the doctor's i've talked to said that might come from the instability in the spine. I have seen my films, and facet joint swelling and the collapsed disc space, and I see where the disc is right over the right hip, but I also think the SI is involved too - at least from what the PT's have said - I don't know if it's a chicken and egg problem? (Which came first or which causes the other?). What did you do about your SI joint problem? You did not get any relief from surgery? If an SI joint solution would fix it all, or even part of it, I would much rather go that route! More thoughts? Thank you!

 
Old 05-05-2010, 07:49 AM   #13
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

Complicating things even more BUT. . . . also consider piriformis syndrome. It's a long thinish muscle that runs deep inside the buttock from the sacrum to the hip (so in the same area that can give SI joint pain)
If it is tight or spasmed it can irritate the sciatic nerve at the point where they cross (in the bum)
Of course there is nothing to say that it can't be 2 (or more) problems at the same time.
A physiotherapist should be able to identify both problems. Exercise is usually prescribed.
Take care
Helen

Last edited by helenlegs11; 05-05-2010 at 07:50 AM.

 
Old 05-07-2010, 11:25 AM   #14
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

Not sure if this will help anyone at all, but I went through most of what everyone has said. The person who initially started this thread stated that he had right hip/right thigh pain. I was there, I had pain going down my right leg all day every day and then last year started in my left. I went through two months of laying on the couch cause I couldn't sit. After two cortico steroid shots that didn't work, Lyrica and Tromedol(spelling?), and Gabapentin to try to fix the nerve pain, my doctor(third one at this point) had me do a pain test. I was pain free for one day before I was in agony. He recommended a total disc replacement as he does not agree with narcotic pain meds on a life long basis which is the less invasive option. At 22 I went with the surgery.

Had the surgery 1/11/2010 to replace my L5-S1, it is now 5/7/2010 and I have never felt better. It will be a while until my sciatic nerve fully heals, but I haven't taken Advil or Excedrin for anything other than a headache since before the surgery. To me at my age, the 4 day hospital stay and the recovery time were worth it to finally after 4 years(hurt my back in Jan 2006) of agony and no diagnosis and I can finally live my life.

I know that I am a success story and with the surgery still being kind of new having only recently been approved by the FDA in 2004 in the US I would definitely talk with your doctor about what is best for you. Do your research, think about the long run, and don't just jump in. Not sure if this will help anyone, but figured maybe my story could!

 
Old 05-07-2010, 10:49 PM   #15
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Re: 27 y/o active - TLIF at L5/S1 or live with the pain??

jen, I am quite busy this weekend as I have a big wedding to attend to tomorrow. However, I didn't want to leave your post completely unanswered. First, I would really research what the person below me said. About my self; 49 y.o., had a spinal fusion when I was 16 and this was successful and I went on and had a professional career. After having two kids, and in my thirties, had been having chronic pain for a few years. One day I woke up and had horrible sciatica pain. Did all the conservative treatments;they didn't work, then had a six-level fusion in the fall of 2007. I fused wonderfully and was doing well until the fifth month. Started having pain in areas I never had before. My surgeon refused to see me. Went from one doctor to the next without a diagnosis. Went to two ER's.One ER actually threw me out. Actually threw the wheelchair in my room and did not escort me out. This is a very famous hospital. I went there because my surgeon's P.A. told me to go there (because he didn't want to see me anymore once I wasn't doing well anymore). Also, this is where I had my surgery. Finally in the fall of 2008 I found my present P.M. and he diagnosed me with Failed Back Surgery Syndrome. Some doctors call it Failed Laminectomy Syndrome (I had laminectomy's done too). It can be caused by a number of things, but mine was caused by scar tissue, specifically scar tissue impinging on the nerve root. This diagnosis means that you have had a fusion and or lami. and your outcome was either the same, or worse. Mine was worse; much worse. I went from VicodanES four times a day before surgery, to Oxycontin LA 20 in the a.m. and 40 in the p.m. and Percocet 5 twice a day for breakthrough pain. Last December, I slightly bent over a trash basket and heard a noise in my back. I screamed because the pain was so bad. I could hardly walk back to the kitchen table. I had an MRI which showed that the mild degeneration that I had a year ago, had changed to severe. That was basically the only thing that CHANGED. Spinal fusions will accelerate degeneration. So, I thought that was the reason for my increase pain. Maybe I didn't do anything afterall when I bent over like that over the trash. Then from Jan. to Mar. of 2010. I was really suffering. I had the back pain, and this new right hip pain. Sometimes it was in the right groin and thigh too, esp. in the beginning. It hurt worse after I got out of bed and started walking. Or, when I got out of bed in the a.m., then sat on the toilet, the R hip seemed like it had a pulse of it's own. Last month, I told my PM about it again(not the director, whom I like so much better) and I asked about x-rays, and he said, "that wouldn't do any good". Then he pressed on my L hip, then my R hip. When he pressed on the R hip I screamed it hurt so much!!!! That's when he said it was my SI joint. I don't know much about this @ all. I know more about the back. And he didn't explain anything either! But of course he put in a referral for an injection! However I have been getting them for my back and I have been noticing that they are really elevating my glucose levels! Back to you-have you had pic's done of your SI joint? Have you had an MRI with contrast done on your back? and which levels? That should be done first. It could be that your back and your SI joint need to be addressed, or just one of them. There are several members here who had problems with their SI joint-I hope they stop by to help you!! Also, are you seeing a board certified Orthopedic Surgeon? Sorry I wrote a novella I probably won't be on line till Sunday or Monday-so see ya then!! Good Luck....janiee

Last edited by janiee08; 05-07-2010 at 10:55 PM.

 
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