Discogram & ALIF Pending, Need Help w/Decisions,Is it worth it?

[sarahhope]

Hi! I had 2 microdiscectomies in a row last Aug and Sept after herniating L5-S1 twice (once in phys ther). Now my pain has gotten severe and I have very little circulation in my feet (maybe severe Raynaud's that's related to my back prblms?). I cannot tolerate pain meds unless absolutely necessary (like after surgery). They make me so sick, I currently am taking nothing for pain.

So my surgeon now wants to do a Discogram and says I may need fusion at more than just the L5-S1 level. He is planning to do an ALIF with instrumentation in the back (cuz I also have Osteoporosis).

Even though my scans show some 2mm bulges at other levels (and a possible annular tear at L3-L4), I feel that most, if not all, my pain is from the S1 nerve root compression. The Discogram seems like a very painful test and I'm not really wanting to even fuse more levels.

But I don't want to regret not fusing more levels if I really need to. Has anyone had a Discogram? Was it helpful? I'm really worried about it increasing my pain since I can't tolerate pain meds. Any success stories for multi-level fusion? I might end up having L3-S1 done and I'm really scared.

Also, I live alone and have only a little help from busy friends. How am I going to do this alone? How much help will I need?

I would really appreciate any advice from you guys who have experience! Thanks!

[Cindylou]

Hi! I had 2 microdiscectomies in a row last Aug and Sept after herniating L5-S1 twice (once in phys ther). Now my pain has gotten severe and I have very little circulation in my feet (maybe severe Raynaud's that's related to my back prblms?). I cannot tolerate pain meds unless absolutely necessary (like after surgery). They make me so sick, I currently am taking nothing for pain.

So my surgeon now wants to do a Discogram and says I may need fusion at more than just the L5-S1 level. He is planning to do an ALIF with instrumentation in the back (cuz I also have Osteoporosis).

Even though my scans show some 2mm bulges at other levels (and a possible annular tear at L3-L4), I feel that most, if not all, my pain is from the S1 nerve root compression. The Discogram seems like a very painful test and I'm not really wanting to even fuse more levels.

But I don't want to regret not fusing more levels if I really need to. Has anyone had a Discogram? Was it helpful? I'm really worried about it increasing my pain since I can't tolerate pain meds. Any success stories for multi-level fusion? I might end up having L3-S1 done and I'm really scared.

Also, I live alone and have only a little help from busy friends. How am I going to do this alone? How much help will I need?

I would really appreciate any advice from you guys who have experience! Thanks!

Sarahope, let me just start out by saying that I am truly sorry you are finding yourself in this unfortunate predicament with your spine. You've got a lot on your plate right now and I admire your tenaciousness. If I were in your shoes I would definitely move forward with the Discogram, to help you marrow down which levels are your specific pain generators. Yes, it is an extremely painful test, and you want to be certain what your treatment plan options are.

I'm going to address this more completely in the morning. Getting late now and I'm having a hard time typing in the dark. Hang in there. Cindylou

[sarahhope]

Sarahope, let me just start out by saying that I am truly sorry you are finding yourself in this unfortunate predicament with your spine. You've got a lot on your plate right now and I admire your tenaciousness. If I were in your shoes I would definitely move forward with the Discogram, to help you marrow down which levels are your specific pain generators. Yes, it is an extremely painful test, and you want to be certain what your treatment plan options are.

I'm going to address this more completely in the morning. Getting late now and I'm having a hard time typing in the dark. Hang in there. Cindylou

Thanks for your reply! This is the first time I've ever used a forum, so still trying to figure everything out. I'm mostly afraid of the Discogram flaring up my pain. I am already at the top of pain that I can tolerate with no pain meds. If I have to start taking pain meds now, I will get really, really sick after surgery (when I have to take them). I'm really scared and hoping there's another way.

I've looked at plenty of medical journals and my pain follows the S1 nerve root path exactly. And my doctor already knows he needs to fuse the L5-S1 level (it's obvious). So still not sure why I should do Discogram...

[Hooch]

Gday,

I had a discogram, but they gave me a pretty strong sedative. There was quite strong pain, but not tear your hair out pain and it subsided reasonably quickly. Some people do them without pain control (barbaric and pointless), and some people do report getting some pretty shocking pain from them, but it's not long lasting from what I can gather.

It is invasive and there are some significant risks but the chances are small. I know one bloke who had a bad reaction to them and the pain didn't stop so they went in and operated 2 days later. Good thing he had the money ready to go.

For the most part you can expect it to hurt and be tender then go away.

It's also a test that is on the way out and is well known for generating false positives and false negatives. One respected surgeon I saw, in a rare moment of lucidity, called it a '**** arse test'.

[sarahhope]

Thanks! It's nice to at least get some realistic answers here. I really do better if I know ahead of time if something is going to be difficult--not so good with surprises. But doctors always say "This might be a little uncomfortable" when the really mean "This is really going to hurt!"

Another question: I know I have really bad problems at L5-S1. Would I even want to fuse more levels if this area is my main problem? Couldn't i deal with other disc problems by more conservative methods since they're not as bad? I mean, I can't really expect to be pain-free even if I fuse everything, right? In fact, might I even end up creating more problems? I just know that fusion is way more successful with only one level and I think the S1 nerve root is most or all of my pain. But I sure don't want to regret not fixing the other levels later...

It's very likely that the surgeon might recommend fusion of L3-S1 after the discogram...Anyone else had to decide how many levels they wanted to fuse? I don't have to fuse every level my doctor says...but....

[KBear]

First of all, Welcome to the forum and sorry you find yourself needing surgery. If it were me, I'd do the discogram. Better safe than sorry on operating on the correct levels. Yes it's painful and depending on how they do it can be awful or not so bad. My first discogram was without any sedation or drugs and it was awful. I was screaming and crying during it, them holding me down, because honestly I couldn't help that I was moving. My second one (a couple of years later) I was completely sedated and it wasn't bad at all. They sedated me, put in all the needles, woke me up and asked me a few questions- to make sure I was lucid, and then did the dye. It reproduced my pain, which hurt intense, but as soon as they had my response they knocked me back out. So really it was less than a minute of total pain. Depending on your body, you may have increased pain for a week or two afterward. I always had more pain after steroid injections and discograms.

As far as fusing multiple levels, there are plenty of success stories of multiple level fusions. That said, I would get at least 3 surgical opinions (after the discogram, so you have that to factor in) and research a lot. A 2mm herniation may or may not be painful. When I went in for surgery, I had small herniations (1-2mm) above and below the level that was operated on. At this point in time, I have done nothing for those levels and have absolutely no pain from them. That's the hard part about spines, one person may have a spine full of herniations, degeneration, tears, etc. and have no pain; while another has nothing abnormal, yet they are in terrible pain. There really are not any black and white answers.

You will need help after surgery, for the first week I would try to have someone who could be with you constant. After that if you could have someone stop in and do chores, cook, etc. that would work. There is normally the restriction of no bending, lifting, twisting for at least 6 weeks, which rules out all chores and pretty much anything other than you healing.
Best of Luck,
Kathy

[Katie]

I'm going to offer a different opinion here, just from my own experiences.

I had a three level discogram last August and at the same time had some dye (Methylene Blue) injected after the first injections in each disc, so almost a double discogram in each one. (If that makes sense ) It was a procedure that my doctor at the time had researched and thought might relieve the pain. It didn't.

For whatever reason, the cocktail of drugs they gave me for pain did not work at all, and I was in the worst pain I'd ever had in my life, including childbirth. I was like KBear with her first one. The pain went down some (meaning I wasn't sobbing) but lasted overnight, but thankfully the worst was gone by noon the next day. I have real problems with medications as well, and morphine is the only one that doesn't make me extremely ill. Just curious, have you tried a variety, or just a couple? I went through five different ones before finding that morphine worked without the side effects.

Fast forward to this past March, and I traveled to Brazil for surgery...long story, but the surgeon decided to only do L4-S1, not the L3/4 that the other surgeon determined was a pain generator. It hasn't been an issue at all. So I would have had an extra level done for no reason if I had stayed with the first fellow. Actually several other surgeons recommended three levels be done in my lumbar as well. I'm thankful that I only had two, as I had to have fusion, so three levels would have been not as good.

Also, I had ALIF at L5/S1, but XLIF at L4/5, and that level was so much less of an issue than the ALIF. The XLIF is a much less invasive procedure, and I highly recommend it if you do need to have fusion above L5. I can chat more about that later if you wish.

Good luck, and like others have recommended, get lots of opinions.

[sarahhope]

Well, I made some decisions today after another long, sleepless night in pain. I scheduled the discogram for this Thursday morning (Dec 16th). Pretty much everyone I asked (either patients or doctors) all said I need to do it. (Thanks, everyone!) And my pain management doc said that other discs besides L5-S1 can affect the S1 nerve root (so I guess my theory was wrong when I thought that other discs couldn't be contributing to my pain.) They also said they're going to do another CT scan afterwards. Really scared, but glad to have finally made a decision! Anything that will make this go easier??? I have to go alone--most likely will be just dropped off...

Also scheduled an appt with a hematologist (at my doc's insistence) because of my previous pulmonary embolism (blood clot). I have to admit that this surgeon is very thorough and wants me to have all this stuff done and checked out before my pre-op appt on Dec 21st.

ALIF surgery officially scheduled for Jan 3rd, 2011. The only question now is, just L5-S1 or more levels? I'd love to hear anyone's story...and what is the XLIF you mentioned? I should also mention that this is already the 3rd surgeon I've seen (by far the most thorough) and I've tried all kinds of conservative stuff: phys ther, chiropractor, implanted Neurostimulator (still using)

[ajj1001]

I have to admit that this surgeon is very thorough and wants me to have all this stuff done and checked out before my pre-op appt on Dec 21st.

ALIF surgery officially scheduled for Jan 3rd, 2011. The only question now is, just L5-S1 or more levels?

That really good that he is covering all bases and that you are confident in him. Is he doing the discogram and are you having pain relief for it? I did and was pretty vague during it so wouldn't have know if anyone had been there for quite a bit.

Do you have decide pre op on how many levels or is there anyway the surgeon can decide when he is actually in there?

[Cindylou]

Yes, good questions Alison. You have someone picking you up as well, I presume? I would not be driving after this procedure. Glad you have some decisions under your belt. It's a good feeling. Your doctor sounds very thorough, which is all excellent. I was wondering too, if your surgeon could "decide" after he is in surgery, any additional work that needs to be done. That would be a good question for him. I also have had 2 pulmonary embolisms, so very good he has you seeing a hematologist. I wish you the best during this procedure Thursday, and hopefully, you can post a day or two afterwards and let us know how you faired. Good luck. Cindylou