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Back Problems Message Board


Back Problems Board Index


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?
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?
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 :eek:, 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
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!
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
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!
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". :dizzy: 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
Janiee,

First, I have to say I am unbelievably shocked? Impressed? I don't know what the word is - that you had a 6 level fusion done - that seems unimaginable to me - and you have had little relief from that? I am really sorry to hear about your trouble finding a doctor to help you with this, I can't believe you had to go through that after everything else you had already been through!! (there are medical boards and professional organizations you can report that to! Not that it would help your physical problem, but if you felt like it might help with closure, or preventing them from treating someone else like that, it's worth looking into?). (I had a doctor steal money from me that was due through an insurance co. reimbursement and I reported them and quit going there - lord knows how many other people they are doing that to!). ANYWAY - I have had a lumbar spine MRI and I have seen those films several times. I can see what they are talking about as far as the collapsed disc space between L5-S1, the disecation/degeneration of the 3 or 4 discs above it, and the L5/S1 disc protruding out to the right over my right hip/nerve, so I know that has to be part of the problem (as in, the SI may be contributing or causing/but I don't know that it's the only problem?). BUT given what you and the other helpful people have posted about the SI problem, and given that I know I've been told by my PT's that I have chronic problems with my SI joint, I am going to ask about this seriously at my appointment tomorrow with the spine surgeon who i'm meeting with about a second opinion. The surgeon I talked with, and the surgeon I'm seeing tomorrow, are both neuro spine surgeons, not orthopedic spine surgeons - I know there is a difference, but I'm not sure if one is better than the other?

Another issue - I know that spine fusion accelerates the degeneration of the discs above, and the 3 or 4 discs above my L5-S1 are already significantly degenerated. So, it doesn't seem like it is going to take long for me to end up back on the surgery table. The thing is, I'm young, I'm physically active, I like to take my dog on walks, go to forests and go hiking, I work out every morning, work every day, and love doing it. I am not ready to start what seems like an inevitable life of surgery after surgery and it is just scary. The pain just isn't that bad, that often, for me to go this far (surgery). On the other hand, it seems inevitable that I'll have to have it, and recovery should be faster if I'm younger? I just don't know.

As for the SI thing, I haven't had Xrays of my SI joint specifically, I had 3 done of me bending forward/backward I think to check on what the bending does to the stability/instability of my spine, but the films didn't turn out b/c the Xray is too blurred or something (glad I paid for them). So, I am going to ask the surgeon tomorrow what he thinks about the SI joint contributing to or causing this mess, and if he thinks handling an SI joint problem would help anything, before considering surgery. As for the piraformis issue/syndrome, I have already ruled that out. My piraformis (I think I'm spelled it wrong) was strained before, I did some stretches and trigger point therapy with the PT and have the piraformis all worked out. I can tell that is not a source of this problem.

It seems like the pain my back is two fold, almost like two separate kinds of pain, maybe unrelated although they seem like they should each be causing/contributing to the other. The first pain, the one I usually have most often and that usually hurts the worst, is the right hip pain, right where my L5-S1 disc is sitting. It's not nerve pain at all. I have nooo nerve pain in my right leg (except the occasional ridicular pattern in my right glute/butt cheek - sorry for the blunt reference to the butt - when I try to run, which I never ever do any more). It's like a sharp rod driving straight through my hip or like a really sharp, snappy feeling. I don't know if that makes sense. The other, second pain is sort of always there, a constant 2-3 on a scale of 1-10, in my lower back right in the middle where my spine is. It hurts insanely bad when I bend forward a lot (like picking up files at work from bottom shelves, not because of the weight of the files or anything, just from the motion itself). It hurts when I lay down straight without curling or bending my legs at all, and hurts bad when I lay on my stomach (which I never do). Or, when I sit for a long time. Sometimes I feel them at the same time, sometimes one is worse than the other, I just can't figure it out. Other than the bending, I can't seem to figure out what 1 thing I do or don't do that triggers it (other than running, running I know is off the table).

Sorry this too seems like a novel. I am just confused. And, to be honest, I just want to live with it. If it could just stay like this forever, and not get worse, I would accept it, without surgery. I don't want surgery. Especially if there's such a likelihood that fusion is a) not going to help much, b) will make me have to have more surgeries later, for the rest of my life pretty much, and/or c) might make things worse. I have yet to hear 1 person, other than I think the person who just posted recently who had surgery on 1/11/10, say that they are glad they had spine fusion surgery and function the same if not better afterwards. It seems like if I have fusion now at 27, i'm going to have another at 37, and another at 45, and it will go on and on.
The best way to figure out the cost is to

(1) Get a copy of the exact policy under which you are covered. Then look for
-Annual out of pocket maximum
-Annual deductible
-Co-insurance % (often 80/20, insurance pays 80% of each bill you pay 20%)
-Co-pays

(2) If you've had medical care this year, your insurer should send you Explanation of Benefits (EOB) after every medical claim. The most recent one will show you how much of the annual deductible you've met and how much of the out of pocket maximum you have met OR sign up with your health insurance to do this online. I do this so I can examine these constantly.

BCBS sells thousands of different insurance plans so there's no way to describe an "average" plan but I can give you an example.

My plan (UnitedHealthCare)
$300 annual deductible. I pay all costs (besides office co-pays) until I reach the $300.
$1500 annual out of pocket maximum
80/20 plan
So for each cost the insurance pays 80% of the cost, I pay 20%
This continues until I reach the $1500.

I had spine surgery in February and thus far have met $1000 of my out of pocket maximum. I'll likely reach it soon thus I am seeking to have any other care I need this year. Essentially I paid $300 deductible and have to pay $1500 out of pocket. Then every treatment after I pay only my office co-pays (I pay $20 for Primary Care physician and $40 for Specialist. However, with surgery he charges me for surgery and the first 3-6 follow ups don't require a $40 fee. So after I pay $1500 this year I pay no more if I have further surgery, am hospitalized, etc.

Every plan year you start over with the deductible, out of pocket max, etc.

Many policy years begin 1/1. Some education policies (for teachers, etc) begin 8/1 or 9/1 of each year. I have a friend here who has a husband that works for the city of Phoenix and their plan begins every year at 10/01.

If you get the exact plan I can walk you through what each thing means.


Oh, almost forgot: Personally I prefer Orthopedic Spine Surgeons but both OSS and NS are capable of doing the surgery on all parts of the spine. My OSS was going to do a ALIF and then his new partner did a Posteriolateral version (relatively new to the industry from what I understand. I had an incision down my back (around 6") and one on my side, above my hip, around 4". The side incision was used to access my spine from the front and to remove the disc between L3-L4 and place a spacer and bone in it's place.





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