Random Questions

[valleygirl]

I have been reading through the old posts on this forum and I have learned a lot! The first thing I learned early on was what a great group of people you all are. You are all so warm, caring and compassionate. I am so thrilled and grateful to have found you!

My apologies if this is a “dumb” question, but in my reading I have come across a term, more than once, that really confuses me. I think it's used mostly by people describing their "post-op" experiences. Can someone explain to me what the term “break-through pain” means? Is this a good thing or a bad thing? Does it last, does it come and go? I am so confused?

Also, when it comes to suffering from pain (before surgery), what types of pain do most of you feel? I have a 53* lumbar curve and all of my pain is from my waist down. I suffer with back pain and leg pain. Initially the leg pain was just in one leg and that foot is now almost totally numb. Now the other leg is giving me problems with numbness and tingling from the knee up. I can’t stand or walk for more than 5 minutes at a time with the pain becoming increasingly unbearable. It is also becoming more difficult to sit and/or lay down comfortably.

Any advice, ideas, or explanations?

[Pooka1]

Hey,

I assume break-through pain is pain that isn't ameliorated by meds. Either the meds weren't strong enough or the correct type or they weren't taken on time.

I lived in fer of missing a dose when my daughter come home from the hospital. It is important to stay on top and ahead of the pain.

Good luck.

[LindaRacine]

Hi Valleygirl...

Yes, breakthrough pain is pain that is felt despite the use of continuous pain medication. With proper post-op pain management, your pain should not be unbearable. You should know, however, that you could have significant pain for weeks, months, or even years. In my own case, the lower back and leg pain I had before surgery were resolved from surgery, but the surgery itself created new, mostly thoracic, pain. The thoracic pain didn't completely resolve until about 3 years post op.

The fact that you have a numb foot is an excellent reason to have surgery. As far as I can tell, numbness due to nerve damage from the spine, rarely goes away on it's own, and often becomes permanent.

Regards,
Linda

[valleygirl]

I lived in fer of missing a dose when my daughter come home from the hospital. It is important to stay on top and ahead of the pain.

Thank you Pooka and Linda so much for the responses. The break-through pain response makes a lot of sense and it's good to know. I'm usually one with a high tolerance for pain and when left to my own devices, I would probably wait until I was in total agony before taking any meds. Now that I understand what it is, and that it's not a "good" thing, I will certainly plan to have my pain management handled better than I normally would.

Yes, breakthrough pain is pain that is felt despite the use of continuous pain medication. With proper post-op pain management, your pain should not be unbearable. You should know, however, that you could have significant pain for weeks, months, or even years. In my own case, the lower back and leg pain I had before surgery were resolved from surgery, but the surgery itself created new, mostly thoracic, pain. The thoracic pain didn't completely resolve until about 3 years post op.

Interesting...did you have thoracic pain before the surgery? I don't - at least not yet. Although my doctor does want to fuse all the way from T4 or 5 to the bottom (I'm confused as to whether he said to the pelvic, or the sacrum now -and now that I've learned there is a difference, I have more questions for the doc ). I hadn't even considered that I might have upper back pain. Funny how that doesn't scare me nearly as much as continuing to live the way I am now does. I just can't seem to function at all anymore.

The fact that you have a numb foot is an excellent reason to have surgery. As far as I can tell, numbness due to nerve damage from the spine, rarely goes away on it's own, and often becomes permanent.

Thank you for that. My pain management doctor didn't think it was enough reason to even talk to the surgeon. But as I told her, every day I feel as if my situation is changing for the worse and I didn't think that my curve was going to get better on it's own. Now the numbness is still in the one foot, but my other leg is starting to get numb and tingly (at the knee) also.

BTW, Linda, while I've been reading the older posts, I've come across many of your previous responses to others. I have found myself clicking on your website many times during the day. You have a wealth of great information on your site and I can't thank you enough for maintaining it.

Thanks again to both of you for your responses.

[debbei]

Valleygirl,

my presurgical pain was mostly below the waist too. The pain started getting worse and worse over the last year prior to surgery. Motrin and heat helped, but it was only temporary. I didn't have numbness yet, but I also had nerve pain down one thigh. Walking wasn't so much of a problem, but standing still was a real challenge. I just couldn't stand still for long without my back hurting.

All of that lower back and leg pain have been totally gone since my surgery 9 months ago.

Good luck,

[valleygirl]

Thanks Debbei,

Glad to hear you are doing so well and that there really is hope. I can't wait to be rid of this pain. It's become almost constant.

[LindaRacine]

Thanks Valleygirl. I'm glad you've found my website helpful. It's badly in need of an update.

I did not have any upper back pain prior to surgery, so it really game as a surprise when I had it afterward.

--Linda

[debbei]

Hi Valleygirl...

.....but the surgery itself created new, mostly thoracic, pain. The thoracic pain didn't completely resolve until about 3 years post op.

Linda,

Do you think your post op thoracic pain was muscular? I seem to go in cycles where I feel fine in that area, I over-do it, and then I'm in pain (spasms I think) again for a week. It's on the left side, where prior to surgery the muscles were all overly stretched. My Physical Therapist says all the muscles are still finding their place.

[johnsonbunch]

Valleygirl,
Your curves are about where mine were 10 years ago. I, too, have pain only in the lower regions, though I'm get some occasional "pinched" nerves in my right shoulder blade area since the top curve has progressed. Almost all my pain is in my sacrum, to the left of my waist, and a constant sciatic pain down the left leg. I am also getting a long fusion to the pelvis in 17 days. I'll be sure to post, or have my daughter post, my progress for those are looking at surgery.

It seems, from reading the posts, that many people get pain in the upper back just above their fusion when it's a shorter fusion only in the lumbar area.

[lumbar3491]

Hi Valleygirl,

Your experience sounds very much like mine. Over this past year, my lumbar pain on the lower left side has steadily progressed until I can't walk without pain for more than several minutes. The pain and numbness extend down to my left knee. I find that using a Carex rolling chair helps greatly because I can sit when I need to. The increasing pain is what headed me toward my upcoming surgery.

Hang in there!

Karen

[loves to skate]

Valleygirl,
It seems, from reading the posts, that many people get pain in the upper back just above their fusion when it's a shorter fusion only in the lumbar area.

I had upper back pain about 7 months post-op just to the left of my right shoulder blade. Prior to surgery, my pain was always low back and sciatica. Some Pt exercises took care of mine in about a month and 1/2. Even when the fusion is lumbar only, the entire spine does some adjustments on its own to level things out. Before surgery, my right shoulder was higher than the left, now they are even. I'm sure the pain I experienced was not as bad as those with higher fusions. Sally

[asccbodypro]

break through pain meds

Valleyfirl,

If you are having numbness, that is definitely a bad sign and you want to get that taken of as soon as possible. I to like you thought I had a high tollerance to pain and also to pain meds. I need my break through pain meds almost every 4 hours which the Dr. finally realized wasn't good. It was making me sick and I couldn't eat.

He upped my long acting pain meds and cut down on "the break through pain meds" and I started doing much better. I stopped taking the break through pain meds at about the 2 month post op point and take tramadol instead. Which is a med that I took prior to my surgery and had very good luck with.

I am 3 months post op now and think I am ready to cut back on my long acting meds. I will be sending an email to the Dr. here shortly to see what he thinks. Good luck and remember no question is stupid when it comes to dealing with scoliosis especially when surgery is in the future.

I can honestly say that at 3 months post op it's the best thing I ever did for myself. I feel better now that I have in 5 years. I am ALMOST pain free. I am a very happy girl now! I thank my Doc everyday and thing the sun rises and sets on him :O) I just can't wait to be cleared to pick up my son then I will feel that it was THE BEST THING EVER TO DO! Take care!

[mgs]

Susan, your comments about your pain control prompt me to ask this. . .I have a pretty high tolerance for pain, too (now, pre-surg, I do have pain pills in the cabinet, but most days I just opt for rest and heat) BUT I thought I was the only one in the world with a high tolerance to pain meds. I would like to talk w/my surgeon about this at my pre-op work-up appt,but I admit I feel weird about asking about it. I have had 5 prior surgeries (none back related, and none nearly this major) and I always need the highest in the "usual dosages" range for Demerol injection post-op, and then about 2 - 3 percocets/dose to cover the pain once I go down to pills. . .it's never caused a problem because my local docs know me (that I don't have a problem in this area) and because I always get off of them as quickly as possible, within 3 or 4 days post-op. I maintain that if you can really bring the pain down as low as possible, and then walk, walk, walk. . .healing is better, and the post-op pain is gone quicker - at least this is the rationale that has worked for me in the past. I do get it that this is a whole new level of post-op pain and healing and recovery. BUT. . .I know that I'll need more than most people do to have adequate pain management. (As an aside, I always require more than usual anesthetic for dental work, too.) This doctor doesn't know me - I'm afraid that, if I bring it up now, he's going to think I'm a drug seeker.

Are those of us who need doses that are higher than most people need - are we unusual? Should I be worried that I will have a hard time with pain control and break-through pain? I don't like pain but, just as importantly, I want to walk around as much as I can, as often as I can.

[valleygirl]

Thanks for all of your replies. It's a big help to come here and read these responses.

Sandy & Karen, I am wishing you all the best on your up-coming surgeries. I'll be anxious to hear about all of your experiences too. So when you are up to it, I'll be looking for your posts. In the meantime, I'll keep you and everyone else on this board in my prayers for happy, healthy and pain-free days ahead.

Sally, it's good to know that PT was a help for you. I haven't been able to do my normal routine of exercising for the past 2 months, so I know I'll be anxious to hit the PT route as soon after surgery as I am allowed.

Susan, you sound fantastic for just 3 months post-op. I aspire to have your outlook when I'm done. Yay you! Keep up the good work!

*************************************

Ok, one more question about the type of pain that you all had before surgery - I have been experiencing a weakness in my knees. Sometimes, out of nowhere, one or the other of my knees just sort of "gives out" on me. Usually I catch myself but sometimes I fall. Not fun! Has anyone else experienced this? I am hoping this is something that is related to my scoliosis and not just another bone or muscle issue. I know it's a question to ask my doctor, but I'm curious if anyone else has felt this. It's the reason I can no longer exercise - I'm not steady on my feet right now and I certainly hope this one, very large surgery will take of this issue too!

Thanks again for your replies. Best wishes to you all!

[lumbar3491]

Hi Valley Girl

Sometimes when numbness spreads down to my left knee (the only side where I have any issues), I feel as if that leg is going to give way. It doesn't happen every time I have numbness but enough to know they are connected. I'm very cautious about walking these days, especially down stairs because I don't trust that knee. Recently I had a wrought iron railing installed on the stairs in front of my house. Helps greatly. So, it sounds as if we have the same issue.

Karen