Can you describe your pain?

Hi Everyone,

I'm having trouble distinguishing the level of my pain from what others consider bad. I think we've touched on this subject in other posts.

Today is a good example of the pain I frequently feel. I am extremely achy - from top of my back to the bottom, and feel like I have to keep stretching my back to get comfortable. I rarely EVER take any sort of pain meds, mostly because I am so used to it I really don't feel the need to take anything for the pain. It's funny how people have pointed out to me on this forum that my pain is not normal.

I am curious if this general achiness goes away after fusion?

I also have a very specific pinching pain in my lower left muscle where the lumbar curve "pushes" the muscle. This pain has gotten worse over the past year or two and has become annoying for lack of a better word. I am gathering this is specifically from this curve and from nothing else, but can I really assume it's from the curve and once corrected it will go away completely? People talk more about swapping pains on this forum, and I am very concerned that this achiness and specific pains will be traded by others or maybe just not go away at all.

I am meeting with my doctor to ask these same questions next week, but feel it might be helpful to ask the same question here.

Thanks

[Confusedmom]

I would also like to know the answer to this. What is the level of pain that justifies surgery, and what can you expect afterwards? I suppose this is different for each person.

I have lower back pain pretty much every evening after making dinner and washing dishes. It goes away after sitting for a while. I also have pain where my neck meets my shoulders that can be with me all day, but sometimes is not there at all. I don't believe either of these justify surgery. If I do it, surgery for me will be to prevent progression and worse pain.

Evelyn

[jrnyc]

no surgeon who is any good will guarantee a pain free result after fusion...some say you will hopefully have less pain, but there is no sure thing...and as far as i know, most pain doctors do not look kindly on this kind of surgery...not that that is qa reason not to do it...just something to add to the mix...

i would recommend a consult with a pain doctor as long as your insurance covers it, which it should...i get botox shots in thoracic area for muscle spasms, and it really helps...unfortunately, not much has helped my lumbar curve, where i also have degenerative disc disease, arthritis, spinal stenosis and listhesis. but i keep trying...epidurals, facet blocks, nerve ablation, sacroiliac joint injections (the last worked well, but were very short term, as most of the treatments have been for lumbar). my surgeon will operate whenever i'm ready...which i'm not...yet..the fusion i need is from T11-sacrum, with pelvic fixation...they would leave the upper curve alone...
i am grateful for oral pain meds, which i've been on a long time...i know they are not a solution...but for now, thank heavens for a prescription or 2 or 3...

now, if they could hand me a pain free guarantee....well, that'd be different...i'd be in the OR tonite!


jess

[ShariMSU]

I am only a little over 5 weeks post op so can't speak to pain I will have as I have all my surgery pain right now. I can say that I don't have the pains I had before surgery. I had pain very similar to what you described. And I too did not take alot of pain meds.
I am hopeful to be pain free once healed from surgery, about a year from now. I too hope I have not just traded one pain for another. I had to do the surgery though has my vertebrae were beginning to shift and this would cause possible paralysis later in life.
I am pleased though to see the pain I used to have is gone.
Feel free to ask more questions if you have some.
Shari

[ADMoul]

Evelyn, I can really relate to that achey pain in the evening thing. Before my surgery, mine was always worse later in the day. The pain I experienced was stiff/achey stuff and it got to the point that I could not stand comfortably for longer than 15-20 min. I kept feeling like I had to bend forward to get some relief. Am sure that was an attempt to relieve the disc compression. I also had tingling from my knee down into my left foot and the last month or so before surgery was beginning to get the same sensation in my groin. The pain was insidious--it just very gradually over the years kept getting worse and more constantly with me until it became an obstacle to things I wanted to do and enjoy. My massage therapist had a great understanding of scoli and would explain what these constricted muscles were doing and why we experience the type of pain that we do. I did get tremendous relief from epidural injections--usually 6-8 weeks, but I knew that was not a long-term answer nor was taking vicodin every time I had a concert or something that required extended standing in the evening.

[naptown78]

Pre-surgery pain

Before my first surgery I endured years and years of lower back pain that started out with achiness, then back spasms, then over the years it gradually got to the point that my job was aggravating it and I would come home and spend the day recuperating in bed. I also had very severe sciatica in my left leg that was a 10/10 severity. At the point I decided on surgery my physician had told me that my curve had progressed 10 decrees in one year and my pain was at a severe level. I was not able to do the activities I once was able to do and it was affecting every avenue of my life.
As for post surgery, I had a disasterous first surgery. I had pain for a long time after surgery but my pre surgery pain is not there any longer. No more sciatica.
I am still in the recovery stage of my 2nd surgery and in a brace which reduces pain so I cannot speak yet on the results of this surgery. But so far , things are really good. I am taking minimal pain meds at this point.

[jrnyc]

i think all you guys made the right decision! i hope i get there, cause my pain varies daily between a 5 (good day) and a 9!

i think alot of my pain is disc and stenosis caused...although the curves are contributing...because with all that, i have no support in my spine!

best of healing to all of you!

jess

[CHRIS WBS]

and as far as i know, most pain doctors do not look kindly on this kind of surgery

It was precisely a pain doctor who alerted me to the seriousness of my situation and the need for surgery. One of the first two surgeons with whom I consulted (both SRS members who did not impress me), referred me to a pain management physician for an epidural steroid injection. This doctor spent a great deal of time with me and in a very subtle manner questioned why I was never surgically treated. He emphasized the severity of my scoliosis and the obvious prognosis for future problems. That’s when I knew I had to make it my mission to find the best doctor who could treat me.

[foofer]

Hi JamieAnn,

I started a thread in the non-surgical forum on May 17 and got some interesting responses. You and I even titled our threads the same (almost), so we are channeling!!

http://www.scoliosis.org/forum/showt...=describe+pain

I had a doc visit with a top specialist on May 6 and he did not feel I was ready for surgery. At the time that I filled out the forms, I tried to really accurately describe pain levels, but I think the doctors come in the office and get a feel for how their patients are doing, what they can do, how well they move around...This doctor measured my curves at 57T and 56L (guess I need to change my signature) In September of 2009, another top surgeon had measured my curves in the mid-60's. The one conclusion I can make is that I am not progressing presently, and my pain level does not prohibit me from living my life.

Still, I can totally relate to that achiness you were describing, and it does wear you down, being ever-present. The other pains do tend to come and go, but mostly they come. I still do not take anything stronger than ibuprofen, but have some narcotic standby in case medications. I really don't want to use them and try to work. I know that some need them so they CAN work, or even just exist.

I think about this endlessly, and I guess at this point the bottom line for me is that as long as I can work and exercise carefully, I will keep on keepin' on. I've tried to back off a little on the forum (hard to do-it has become by favorite habit) so there will be time to work, workout, see my friends and family, and do some dishes! Some of my friends have mentioned that I might need to stop getting on this forum as the whole subject has become all-consuming, but I will just keep quiet about it. "Straight people" just don't understand.

Thank you to all the post-surgicals who are weighing in on this: PLEASE continue to let us know what differences you are noticing, especially in the achiness department.

Here is today's body weather report: Woke up, right lumbar twanging area, leaning to the left, achiness everywhere, gradual straightening by noon, chance of exercise class today......

[foofer]

Another thought,

I remember in Sept 09 asking the NY doc about the muscle achiness and he did say that would improve. The muscles are constantly battling to hold the line with progression, and after fusion, they would not have this formidable job.

That would be heaven.

[jrnyc]

hi Chris
your pain doctor is rare, believe me...i suspect if we took a survey on forum of patients who have gone to pain docs, most would say the pain docs were anti fusion...mine just keeps warning that he has post surgery fusion patients, and also that he doesnt like that there is a chance of more or worse pain after healing from the surgery...
i take it with a grain of salt, as i consider the source...this is his bias, and he has a right to it, i guess...he is very dedicated to trying to relieve pain for people, but any time i mention having surgery, he backs off of being my doctor, so i keep my thoughts to myself as long as i need his help....

jess

[golfnut]

I am active and have moderate pain only if I have been working in the yard or standing a long time. Most general exercise actually makes my back feel better. Dr. Lenke recommended surgery for me because my curve has progressed and to quote him, "Your prognosis, unfortunately, is not good." (without surgery) He said I could wait, but that I shouldn't wait too long since the older you are, the longer the recovery time and the results aren't always as good according to Dr. Lenke. For those reasons, I got on his waiting list. I hope and pray I'm making the right decision. Although I'm happy I can do almost anything now and happy I'm not in constant pain, it would be an easier decision if I had
more discomfort. My husband does not understand my obsession with this forum. The other day when I mentioned a concern about the surgery, he said, "Well, don't do it." I guess I have to convince him that it's the right decsion, too, since he'll be carrying the workload of the house, dogs, cooking, etc.

[jrnyc]

hi Karen
i get the same comments when i am on forum

i am in alot of discomfort, though...but just keep changing my mind about the surgery...whenever i see the surgeon, and he says i am a great candidate, and looks happy about what he believes he can do for me, i decide "yes," then later i think about the lack of flexibility (though people write me on here and tell me it is better than they expected after lumbar fusion to pelvis)...or i read a post surgery posting about being in bad pain after months of healing, and i change to "no." worst part is my lack of being able to exercise, from the pain! i had to early retire 3 years ago!
doesnt help that i am getting older and am already there

so i vascillate..even with bad pain, lots of injections and meds, i am ambivalent...suspended between yes and no! but i do think it is great that you are on his waiting list...you will be glad in Nov. that you did that!

jess

[Confusedmom]

"Straight people" just don't understand.

Love it.

I am losing sleep up reading this forum. But I am gaining knowledge and confidence!

Evelyn

[JamieAnn]

Thank you so much everyone for posting replies and sharing information on your individual pain. This helps a lot.

Funny that there was another post on this - and so similar!

As much information as I have possibly read on this forum, I still cannot help but feel confused and even more torn about the surgery. I am so anxious to meet with my surgeon next Thursday and go through my long list of questions and make a decision for sure. This decision will be whether or not I want to do the surgery within the next year, or wait until after kids (God willing!).

Thanks again everyone!
-Jamie