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Old 03-21-2012, 07:54 AM   #1
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Update - return/worsening of pain 7m post ALIF

Hi all. I haven't been around of late but I "know" some of you. I wish I could say I'd disappeared b/c I was pain-free and out living life. But that's not true.

I had an L5/S1 ALIF on 8/8/11. I started PT around the three month mark and had been feeling better. I was gaining strength and doing "fancy" stuff like retrieving a dropped blanket. I was, however, still on a low level of pain medicine until mid-February. PT was discontinues by insurance but I was confident I could do some strength work on my own and would soon be living a normal, actvie 34 year old life.

I dropped the last of the medicine (not an easy thing to do) and the pain came back. I hoped it was just a withdrawal type thing but it wasn't. I'd definitely known I still had some level of pain...I was taking the meds for a reason...but it felt manageable. And then, it suddenly wasn't. I've spent the better part of a month in bed. If I stay still, it'll drop to a 6 but it is often an 8 if I try to sit for more than a moment. If I'm stubborn and try to spend part of a day out of bed, or try and walk (in normal times, I do 6m a day....not now), even lying still hurts the next day. At times, even daytime TV feels too taxing. The only thing positive on the pain front is that it doesn't radiate...it is very much low back pain....feels like I'm sitting on a pole when I'm upright or like someone is twisting knife in my back

The neuro hasn't been as helpful as I'd hope. He put me on Elivil to help with the mental aspects of pain. We tried a non-narcotic pain reliever but it did nothing. He's referring me to a pain management specialist but that's been a long wait....my appt is on the 29th. We did do an MRI yesterday but they don't expect it to show much...it's just to make sure. The films and tests prior to the surgery showed a very bad disc at l5/s1 (the doc said it was among the worst he's seen in years) but the rest had looked healthy and they were so confident they got the problem.

I'm a bit at a loss. I feel like the pain is winning. I don't want to live on pain meds, but I also can't live like this. People around me know it's bad when I not only stop my workouts but don't even feel guilty doing so b/c even my stubborn mind knows I can't. It's been so lovely out but I can't enjoy it at all. I was more active two weeks out from surgery than I am now.

Has anyone had good success with a pain mgmt doc? I don't really know what to expect. The neuro's ***'t did say they don't typically "take over" existing pain meds, though I'm not on any now.

Last edited by cheryl1213; 03-21-2012 at 07:56 AM.

 
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Old 03-21-2012, 10:18 AM   #2
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Re: Update - return/worsening of pain 7m post ALIF

Oh dear. I had been wondering how you were doing, and was thinking you were out riding your bike, hiking and just generally loving this fabulous weather, and were just too busy to come back to say hello. I'm really sorry to hear you are having problems. I hope the MRI shows something -- at least that way you have something concrete to deal with.

Could you find a physiatrist to go to rather than pain management doc? It could be (since your pain is localized to your lower back) a structural thing -- I don't know exactly what...maybe a problem with the fascia as it was healing that is now pulling on the muscles and nerves...I don't know but a physiatrist would look at all that and just not how to block the pain.

Please stay in touch. We miss having you on the board. Does Dr. Dad have any idea what is going on??

Last edited by teteri66; 03-21-2012 at 10:20 AM.

 
Old 03-21-2012, 10:32 AM   #3
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Re: Update - return/worsening of pain 7m post ALIF

Thanks for the recommendation, Teri (did they change your screenname a bit???). I think I want to see what the pain folks say and then maybe I'll look into a physiatrist. I know I saw one way back when in Boston and liked the approach.

I'm just sick of docs...had some issues for my GP in the past fw months, a Gyn annual (which kicks up the endo pain every year) and also saw a sleep specialist. On a positive note, sleep doc was seriously the most caring doc I've ever seen. I'd stumbled onto a mix of the Elavil, Ambien and a Tylenol PM that worked during the wait to see her. She said that was fine for a longish term and that she'd be happy to work with me by email after I got the pain under control if I wanted to try and get rid of the meds. She said she'd never tell me not to do what works given how much pain she could see in my face. I commented she spent more time with me in one appt (like 45min!) than I've ever spent awake with my surgeon. She pointed out we hire our surgeons for their hands...which felt so true given that he isn't much help right now.

Dr Dad says it could still be post-op pain....but he's maddenly optimistic at times. He says that lets him do his job, and I can see that...you have to believe you can help...but I'm too mopey to really be able to get on board the positive train (a MONTH nearly bed-ridden can do that). I think he's trying to avoid being my doctor (though he got ****** at the time it took the doc to respond t my msgs when the pain set it). He agreed w/ getting the MRI but doesn't expect it to show much. He did say one of the nurses said it took 9m to heal post-ALIF but this doesn't feel like "just" post-op pain...I've NEVER been bed-ridden before

Last edited by cheryl1213; 03-21-2012 at 10:40 AM.

 
Old 03-21-2012, 11:57 AM   #4
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Re: Update - return/worsening of pain 7m post ALIF

I know what you mean about finding that special doctor. I had some surgery on my nose in Jan for a hole in my septum. The ENT said they didn't do anything for this problem, so I went to a cosmetic surgeon. I adored her, and told her I wished she specialized in an area I really needed on an ongoing basis.

Having gone through one fusion that was successful but did not relieve my nerve pain, I think we instinctively know when it is no longer "recovery" pain, but is something that isn't going to get better. I did, anyway, by six months.

Why were you stuck in bed for so long? Did you say it wasn't nerve pain, or it just wasn't nerve pain in your legs? What are your symptoms now?

Yes I lost part of my name.

 
Old 03-21-2012, 01:01 PM   #5
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Re: Update - return/worsening of pain 7m post ALIF

I'm STILL in bed. This is wreaking havoc on my (and the BF's) sanity.

I don't know if it is nerve pain. When I sit, it feels like there's a pole jammed in at the base of my spine. Even when i lie down it feels like there's a knife in the base of my spine that is being slowy twisted (not a stabbing pain...sometimes almost a ripping). In terms of spine pain, t isn;t all that different from pre-op but it is uncontrolled by medicine so more debilitating. It does not radiate at all however (my pre-op actually started with hip pain and it always included left glute/hip/leg issues to the knee)...just sits from the very base of the spine up a few inches. I do get sore higher in my spine but I am fairly sure that's secondary (call it a former gym-rat's body knowledge).

How odd that your name got chopped!!

 
Old 03-21-2012, 02:54 PM   #6
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Re: Update - return/worsening of pain 7m post ALIF

Do you think it possible that a screw has punctured a nerve or something similar?

Are you in bed because it hurts to be weightbearing? Is the pain lessened by lying down?

Last edited by teteri66; 03-21-2012 at 02:55 PM.

 
Old 03-21-2012, 03:23 PM   #7
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Re: Update - return/worsening of pain 7m post ALIF

It hurts much less when I am lying down. Sitting is pretty awful (often hitting an 8 on the pain scale) and when I've pressed to try and sit outside and enjoy the weather or just hang out with the boyfriend, I've had a huge increase in pain both during the time I'm out of bed and after.

I've tried to walk a little bit but have pretty bad rebound pain after....walking isn't as bad as sitting, which I know is the most pressure on the low back, but it is still tough and just feels "off". I get DRENCHED quickly...I think b/c it is more "work" than normal. I actually swung by my PT to grab his card so I have the info for the pain doc...he said I just didn't look right and that while it isn't productive to lie down so much, he could tell that the pain wasn't giving me another option. He knows I'm stubborn. I was trying to walk five miles by around week 3 or 4 post-op (the BF "told" on me to Dr Dad but my doc said it wouldn't cause any harm, just might make me a bit sore after). I think the fact that I KNOW I can't do a lot is significant since I'm not so good at resting.

Another factor -- My BP was fine last time it was checked but my resting pulse is pretty high, esp when I sit. The nurse for the sleep doc counted it at 100 and it was up to 120 on Sunday night when I was just trying to sit to watch TV with the BF (and I wasn't THAT wrapped up in Once Upon a Time!). I can feel my heart beating pretty hard when I am out of bed for more than a short while. Dr. Dad says it is the stress of dealing with pain and that I don't need to be rushed to an ER or anything but it worries me and is an added reason for staying in bed...it is measurably better when I've been lying down for a bit. It has always been higher than one would expect, even when my BP was on the low side (more normal range now)


I've def wondered if it is the hardware somehow. I have two titanium cages. I don't think there are screws but I don't really know that for sure. I don't know if the MRI would help reveal that. The surgeon was supposed to get the films within a day or so but I haven't heard back yet. Part of me hopes I get a "come in right now b/c we see something and want to fix it ASAP" call since it would be some sort of answer but I don't really expect that.

I'm just counting the hours till the pain doc. I know that there's unlikely to be any sort of real relief from a first appt, but I need to feel like there's at least some sort of plan.

 
Old 03-21-2012, 04:27 PM   #8
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Re: Update - return/worsening of pain 7m post ALIF

You have much more control than I would have if my dad were a neurosurgeon. I'd be on the phone all the time asking him the "could it be's and what if's."

I was just about to write and say that without screws, there is a chance of the cage migrating. But I was thinking you had TLIF. The I read your title and remembered. But anyway, it would be worth asking if that is a possibility. There was someone on the board who had his cage migrate and he was in tremendous pain...but that was with a TLIF.

Maybe something on the front side is being irritated(something the vascular surgeon was responsible for!) and that is responsible for all your other symptoms with the high BP, fast pulse, etc.

I'm just thinking out loud here...trying to come up with some possibility that perhaps you hadn't thought of.

Your symptoms certainly are different from most things I've heard....

 
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Old 03-21-2012, 10:13 PM   #9
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Re: Update - return/worsening of pain 7m post ALIF

cheryl, I was just thinking maybe it's your SI joint, however your symptoms don't exactly fit that either. Maybe you can mention it to your doctor anyways. I read somewhere that SI joint dysfunction is very common within the first five years after spinal lumbar fusion. Not sure if you had lumbar done though? I have SI joint problems, and they started about two years after my fusion. Sitting is the worst. Also, walking AFTER sitting or lying down. I would research it on the web, it can't hurt. Hope you feel better!!...janiee

 
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Old 03-22-2012, 06:36 AM   #10
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Re: Update - return/worsening of pain 7m post ALIF

It seems kind of dumb to suggest a cage migration when Dr Dad is encouraging you to be patient...but here goes anyway! Do you have your operating notes? If so check to see if you have any screws or a plate. I wasn't sure if a cage could migrate in ALIF, even though it was a big problem in TLIF before surgeons began to use screws to hold the cage in place. S o I did a bit of investigating and ran across several articles on PubMed that were the published results of research studies done on this very topic. It is not common, but a cage can migrate. If screws or a plate were used, those too can migrate.

Unfortunately this does not always show up on MRI due to the artifact that may make it difficult to pick out. A friend of mine was told for 3 years that her fusion "looked great" on MRI. She went from one spine surgeon to another and kept being told that they could see no reason for her pain. And yet her pain was agonizing. Her surgeon insisted she see a pain psychologist because the pain was all in her head. She had a horrible time -- was beginning to doubt herself, etc. Eventually she found a spine surgeon who specialized in spinal reconstruction and revision surgeries who ordered a bone scan and perhaps some other tests and found that she had only fused on one side. On the other side, the screw had come loose and had poked through a nerve and scar tissue had grown around the whole thing and was binding the nerve to the screw.

So, even when you get the results of your MRI, it may not tell the complete story of what is actually going on around your hardware.

Please ask your doctor about the possibility that you may have a problem with your hardware, whatever it may be!

 
Old 03-22-2012, 06:39 AM   #11
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Re: Update - return/worsening of pain 7m post ALIF

Hardware issues are def on my mind. I only see the two cages on the xrays but don't know if there's anything else that's harder to see. I'll ask about it when they call.

That's interesting that SI joint issues can follow on the heels of a fusion. I'll mention that too.

Thanks to you both!

Last edited by cheryl1213; 03-22-2012 at 06:40 AM.

 
Old 03-22-2012, 06:49 AM   #12
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Re: Update - return/worsening of pain 7m post ALIF

SI issues are unfortunately a fact of life with lower lumbar issues. The SI joints are designed to move a very small amount. Once the lower lumbar segments are fused, there is a block that used to be the most mobile that is now unable to move at all...so all that energy is transferred to the SI joints, which are the next available "moving part." My surgery told me, when I mentioned having SI joint pain, "remember when I told you that you'd be exchanging leg pain for butt pain?" Well, NO. I didn't recall him ever saying that...but he was well-aware of the possibility. It took me about 15 months to work through all the issues...and now I'm OK and it isn't a problem.....

However, I do not think what you have described sounds like SIJ issues, but it is easy enough to have a diagnostic block to see if it provides relief...to rule it in or out.

 
Old 03-22-2012, 07:05 AM   #13
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Re: Update - return/worsening of pain 7m post ALIF

The pain is, quite frankly, worst just above my butt crack (wow....I never thought I'd use that phrase online!!...but it is the truest description). it goes up a few inches.

 
Old 03-22-2012, 08:41 AM   #14
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Re: Update - return/worsening of pain 7m post ALIF

[B].feels like I'm sitting on a pole when I'm upright or like someone is twisting knife in my back[/B]

I'm voting for a hardware issue --

 
Old 03-22-2012, 08:25 PM   #15
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Re: Update - return/worsening of pain 7m post ALIF

The funny thing is I have the same kind of pain in low back right above the buttcrack, constant pain, went through excruciatiing pain in left left before surgery, but now is numb...so nerve pain is now intermittent...I only had a discectomy, but looking into a discogram to see if fusion is the option...I hope you start feeling better, I know we all have different levels of pain threshold, and what is severe to me , may be minor to you or vice versa...I wish I could help and hope you find results soon

 
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