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View Full Version : Any polls on long term post-op pain levels? Eye opening experience today....



TwinmomTN
12-12-2011, 02:30 PM
I had an eye opening experience today after my colonoscopy when the anesthesiologist called me at home to reach out and discuss post op pain levels for spinal fusion surgery. I had mentioned in the pre-procedure discussion when asked about implants that I will be having spinal implants/fusion surgery next year. He called to warn me about multiple spinal surgical outcomes with worse post op pain than prior and to advise me to at least get multiple opinions. Of course, I explained to him that with the severity of my curve my goal is to stop progression and of course pain. In his field of work he sees many that regret having the surgery and that have worse pain in the long term than before surgery. But then I refer to the sticky threads here on the forum with several that are glad they chose to have the surgery, while no one has posted a regret post. So I am a bit confused. Are those with regrets hesitant to come forward and post? Needless to say I was a little taken back today and find myself questioning my choice with doubts in my head about the surgery. I do have daily pain and push through because I have no other choice in order to hold down a job. I was once confident in my decision and now am questioning the decision.

If you have had surgery and are past the initial recovery, is your pain level worse or better than before your surgery? What was your pain level on a scale of 1-10 prior to surgery and after surgery?

JDM555
12-12-2011, 03:17 PM
I don't think you need to over worry. Yes, some people do have bad outcomes and regret having surgery, but that most of the time is because something surgical went wrong, such as pseudarthrosis, broken rod, loose hardware, etc. If you have a successful surgery, and it stops progressing the curve, that by itself is pretty good result. You need to understand this is major spinal surgery, it's not a 100% fix automatically to everyone, everyone is different and every surgeon is different. I had severe pain before my first surgeries in 09. I would say it was around 5-9/10, it would fluctuate depending on what I was doing, but at some points it was horrible. After surgery within the first 7 months, when I guess I was recovering, the pain was gone and I was doing fine. Low 1-2/10 pain. When I started going downhill recovery, it was because of pseudarthrosis and loose screws and progressing curve, so yes it was painful and a bad result of surgery, but that didn't change my mind in the sense that I "regret having surgery". I knew surgery was the right answer, it's just the surgery I had wasn't successful, so I had revisionals last month and so far so good.

Living with pain and a progressing curve is not something fun. Yes, there are risks in surgery, but there are risks in staying the way you are. I would get some opinions, and go to the best surgeon you can find with a solid plan, and go with it. Because once you're fused and the curve isn't progressing, most of the time, your pain should be gone and you would be able to return to your normal activities.

BTW, I'd say the majority of this forum came on here, because they have problems and want answers. That doesn't mean everyone that had the surgery posts on here. All the successful surgeries are living their lives and don't even know there is a scoliosis forum. I think you'll be fine.

jeneemohler
12-12-2011, 03:24 PM
You poor lady! Nothing like scaring someone just before surgery! But he probably has your best interest at heart. So many people don't realize how big of a surgery this is and don't get another opinion. Many (but not all) of the people who have issues or revisions have had care/surgery with inexperienced docs. And of course, you tend to hear mostly about the bad experiences. He was just making sure you knew all your options and didn't get a doc who was anxious to operate for his own personal reasons. I ran from docs who wanted to operate when I was in no pain and my curves were stable when I was younger. It seemed like they were wanting to operate just for the business, the experience, or the thrill. When I found a doctor who said surgery is a last resort, not a quick fix, I finally found someone I could trust!

I don't have numbers to back this opinion, but it seems like the majority of patients are glad they had surgery. All people are different, have different pain tolerances, and different pain levels before and after surgery. No cases are just alike. It is just a personal decision you and your doctor have to make together after weighing all the facts and options. I put it off after many years of pain, and the time was just finally right to go ahead with it. I feel different, and will never feel like I am 20 with a nice, straight back; but I do feel good, all things considered.

I was very nervous, too. We all were. It is a big surgery. But I was confident in my doctor, and the pain became a factor in my quality of life. I couldn't do much of anything during that last year, so I figured it wouldn't put much of a cramp in my lifestyle if I was still in pain afterwards, too. But at least the progesssion would stop! I have been fortunate that I am able to do more than I was before surgery, and the pain is gone. I still have aches and muscle tightness, but no more sciatica with pain in my hip, butt, thigh, all the way down to my ankle. I can stand for hours and take long trips in cars or planes without the pain I had before. No more ribs sitting on my pelvis. Look at the bright side and what will likely happen after surgery. Now, recovery is no walk in the park! It is the toughest thing I have been through. But I expected it, and knew it was temporary and I felt better every week.

I hope others pipe in with positive vibes for you! We are a supportive group who care. Hang in there.

JenniferG
12-12-2011, 03:33 PM
I think most of us have doubts during the lead up to surgery. But if we're confident in our surgeon (and in some cases, have had several opinions) and the pain and deformity are engulfing us, I think it's a risk worth taking. Yes, some do have bad outcomes. You can minimise your risks firstly by choosing the most experienced surgeon you can find, one that's well recommended, keeping yourself fit and healthy, avoiding other health issues that may complicate surgery. There are no guarantees, but the odds are good. Try to imagine worsening pain and deformity as you grow older, eventually limiting your life to inside your home, possibly a wheelchair or bed. Struggling with pain and possibly breathing difficulties. Is that something you could tolerate?

My pain levels were only ever moderate - around 5. Some days there was little pain, more on others. But I knew it was increasing. Now my pain levels are zero. I'm one of the lucky ones, but from my reading here, most of us believe we're lucky and glad we had surgery. It'd be terrible to be one of the unlucky ones and there are a few here, who've had horrible outcomes, and I feel terrible for them. But the long term future for many of us scolis, without surgery, isn't much better, if at all. I hope you can make your decision and feel at peace with it.

walkingmom
12-12-2011, 04:27 PM
Hi Pam,
I am 7 mos post op so I canít really speak to long-term post-op pain. However, I am one of those who hasnít yet posted about ďbeing HAPPY that I had the surgeryĒ. As of now, I am just RELIEVED that I had it done. Prior to my surgery, I had daily aches and pains (along with headaches), but after awhile I just got used to tuning out the pain and grabbing for the ibuprofen every morning. I probably could have delayed the surgery for a little bit, but I could feel that my back was getting progressively worse. Approaching 50 years old, I knew too that I was in the best possible shape that I would ever be in. My health was not going to get any better. I didnít want to wait until I was completely pain-ridden in a hunched over position before I would consider having the surgery. So really my decision wasnít IF I should have the surgery, but WHEN.

Now, seven months later following surgery, my headaches are generally gone. I am dealing with some annoying muscle tightness and the pulling/tugging/burning sensation, but this is slowly diminishing. I know that this is a 1-2 yr recovery period, and with time, I am hoping that as my muscles continue to get stronger, all these other issues will settle down too.

Sorry that I didnít give you a pain #. I am so horrible in using that scale :) Hope you find comfort with your decision. Itís so easy to second guess ourselves, but finding a qualified surgeon that you feel comfortable with is most important.
Donna

Lue
12-12-2011, 05:16 PM
Hi, I'm 7 mo. after surgery, and I feel great, before surgery my pain was 11. I could not stand for 3 min. without pain and holding on. I used a cane for 2 years. now I have no pain and can walk a mile if I want to. I had anterior and posterior May and June. DR. Kebaish at Johns Hopkins. The best thing I did. good luck, Lu

golfnut
12-12-2011, 07:36 PM
I agree 100 per cent with the people who have already replied and probably couldn't have expressed my feelings as well as they did. I often had people with no knowledge of scoliosis or the surgery telling me that I was making a huge mistake by having surgery. Their comments bothered me and I would often second guess my decision for surgery, so I know what you are experiencing. I think if you weigh the pros and cons, you'll make the right informed decision.

titaniumed
12-12-2011, 08:22 PM
Pam
My pain levels were completely out of control...and was at the end of the line and would have died from a heart attack. Dr Menmuir saved my life. My pain has been reduced 99% and will have the occasional tightening feeling in my thoracic spine....I went from 10 level back pain to maybe a 1 every once in a while. (No biggie)

My recovery was 90% in the 1st year, and the last 10% took another year. If Dr Lenke does a posterior only, it will be a shorter recovery time.....

I really didnít have a choice. Many of us are put in that situation. Itís a tough thing to have to deal with and I still think about it often and I still cant believe how well I turned out. Miracles do happen, and it seems that Dr Lenke performs these miracles all the time. There are also many great surgeons out there, quite an improvement over the years.......

Do you have a choice? Only you can make this decision. When we lose our choice, we have to become brave people. After your recovery and you heal, all the little things in life donít matter anymore, they just donít. Itís a transformation that many adult scolis go through. That huge ton of bricks falls off your shoulders.

Having a second chance has no value. Itís a extremely positive change....

Ed

Mojo's Mom
12-12-2011, 08:47 PM
I think the important perspective here is that very few doctors really understand progressive scoliosis and how different it is from the more common instrumented spinal fusions done for different reasons. Most of us really don't have a choice, and our problems are very different from other spinal fusion patients. Your anesthesiologist was almost surely talking about his experiences with common spinal fusion patients, where you frequently hear that pain is worse after the surgery, or no better. That is why some insurance policies are no longer wanting to cover those kinds of fusion surgeries.

But with progressive scoliosis you are talking about something completely different. We are, until fused, all moving at varying rates toward crippling deformity and severe pain, and crushed organs with related health problems. We really are forced into these surgeries if we want to have any quality of life. And it's much more likely, I believe, that we will have much greater quality of life with our progressions at least stopped, if not significantly reversed. We may not all end up pain free, but we're going to have to choose the best surgeons and jump into it anyway.

LindaRacine
12-12-2011, 10:29 PM
Hi...

My pain is 95% better than preop.

I cannot believe how unhelpful the anesthesiologist was being, despite the fact that he apparently thought he was helping you. While adults who have very little pain going into complex spine surgery, frequently come out of surgery with more pain, that is just not the case with adults who have significant pain, especially those who choose experienced specialists. Scaring a person about surgery is not helpful when the surgery stands a good chance of returning that person to a decent quality of life.

Regards,
Linda

Lorz
12-13-2011, 08:09 AM
I am very surprised that an anesthesiologist would have that much contact with post-op spinal fusion pts. Unless he worked as a pain management Dr. prior to his current job doing colonoscopies, he would have limited contact with post-op pts. He probably only saw pts. who had bad outcomes, and were coming in for repeat surgeries. And, they may have been 1-2 level fusions people have for totally different diagnoses. I really doubt he had a lot of exposure to people who had extensive fusions, done by experienced scoliosis surgeons. And, if he did, he would not have seen the ones with good results, because they would not have been returning for more surgery.
Before my surgery, I learned to tune out opinions from well meaning Drs. who had no experience with scoliosis surgery. I work with a whole group of them, and most thought I was crazy to do this!
Sorry to repeat what was already said. I didn't read the last 2 posts before I posted mine!

decide
01-23-2012, 09:31 PM
Helllo everyone!

I had surgery 12 years ago and really I have surely more good days than not, like way more good days. Never anything unbearable.
I can't tell you if it's worth it or not but considering every now and then to everyday is so much better. But during these 12 years I haven't had anything bad that required me to seek help or medication or anything.

It can be pretty scary because even though so much time has passed i fear the future too but 12+ years virtually pain free is worth it to me.

rohrer01
01-24-2012, 04:45 PM
Pam,
I haven't had surgery, either. I went to a pain specialist who was an anesthesiologist. He wanted to insert an intrathecal catheter into my spine KNOWING that my curves are progressing and KNOWING that catheterization is contraindicated in an unstable spine. He told me, "A pretty straight spine isn not a pain free spine." He also told me with the amount of pathology that I have I will NEVER be off narcotics. He then proceeded to tell me a horror story about how he tried to get a catheter into a young girl who had been fused and was in pain and wasn't able to place the catheter where he wanted and she's on narcotics the rest of her life, blah, blah, blah. You have to remember that these are ANESTHESIOLOGISTS. They work at eliminating pain for people. They ONLY see people with bad outcomes. So, of course, that is their experience with scoliosis surgeries. It's the nature of their work. No one without pain will EVER come and see them for help. So, coming from an anesthesiologist, you have to expect that their own personal experiences are skewed beyond belief! I do believe that many of these doctors also have private practices, as other doctors do. When they are in the OR, they administer anesthesia for all sorts of surgery, but in their private practices they are PAIN specialists. I could be wrong about the cross-over duties. BUT, I'm sure that many, and probably including this doctor that saw you, have had experience in both areas. They do make them do clinicals in med school.

I hope this helps you to understand HIS perspective so that YOU don't freak out.

Sincerely,
Rohrer01

Karen Ocker
01-24-2012, 06:07 PM
I wonder about where the anesthesiologist got his info. Many patients in pain management are NOT post-op scoliosis patients but other post-op situations like spondylolisthesis or other unstable type spines/injuries. There's also the other confounding factors: persons who use "back pain" for permanent disability payments(and work under the table)or chemically dependent persons seeking prescriptions.
I have worked many years professionally sedating pain patients for assorted pain management procedures.

I have not seen a single post-op scoliosis fusion patient in 37 years of giving anesthesia. Scoliosis fusions have been done for over 45 years.

rohrer01
01-24-2012, 10:38 PM
I wonder about where the anesthesiologist got his info. Many patients in pain management are NOT post-op scoliosis patients but other post-op situations like spondylolisthesis or other unstable type spines/injuries. There's also the other confounding factors: persons who use "back pain" for permanent disability payments(and work under the table)or chemically dependent persons seeking prescriptions.
I have worked many years professionally sedating pain patients for assorted pain management procedures.

I have not seen a single post-op scoliosis fusion patient in 37 years of giving anesthesia. Scoliosis fusions have been done for over 45 years.

That is truly amazing! Not saying that there should be a large amount of post-scoli fusion people, but not a single one? Do or have you worked in a private practice or in a general hospital setting? Just curious. You, of all people would know. So that is VERY encouraging! I don't know what was up with my doc. He moved and I'm glad. I just hope the next one has a better bedside manner.

Karen Ocker
01-25-2012, 12:31 PM
I worked 10 years in a free standing surgery center with pain management and 2 years in a large medical center.

What I did see sometimes, over the years, were people with single level-non-scoliosis fusions with issues above and below those single areas in unstable spines.

SMPC5
02-06-2012, 11:09 AM
I am 25 years post op and I can tell you.....there is pain. If you can google scholarly documents on the long-term effects of scoliosis fusions this will help you. I believe that I would have surgery again....as I had severe s cures. I have degeneratve disk disease which is very common in scoliosis surgery patients as well as arthritis in the spine and hips(also common). My surgery was done at HSS in NYC and it was VERY successful. My rod is still in place and I have been told recently by another orthopedic dr. that my back looks "beautiful" and I am good shape.....for a scoliosis patient. I am 40 years old and had three children...I believe that carrying the babies were what did me in! LOL...seriously though we can do most things and I am not trying to scare you but I feel like people should understand that surgery does not necessarily mean pain free for life.

Confusedmom
02-06-2012, 09:31 PM
SMP,

Thanks for your personal account. We don't get many 25-year fusion patients posting. Do you think you would have been better off without the surgery? Did you really have a choice? You must have been a teenager.

Getting fused next month...wondering about all these issues.

Thanks,
Evelyn