Do others have so much post-op pain?

[nuts and bolts]

I am a twenty-six year old female. I had a thorasic and lumbar curve that was progressing. January 2005 I had surgery. Since then I have been on a rollercoaster ride of pain. For about a week, I will feel allright, able to dance, hike, and play with my kids (all the things I love). Then I will go through about three weeks straight of severe, debilitating pain. The pain has been so bad that I once went to the ER thinking that there was something really wrong. The doctor that saw me took x-rays and told me that the only thing he could see was that one of my screws was not placed the same way as the others and maybe it was irritating the thorasic wall around my lungs. I got in to see my surgeon right away in regards to the pain and what the ER doc told me. My surgeon said that that was'nt possible but he did order an MRI. After the MRI, I saw him again. He told me that everything looked great and he said "I don't know what to tell you, people don't come out of this surgery in more pain." That was my last visit with him. I went to my family doctor because if my pain was not from the operation, then I needed to find out what it was. When I described everything to her, she told me that "to say that this was not a result of surgery was proposterous." She sent me to another back specialist for a second opinion, but he did not deal with scoliosis surgeries, so that did'nt help me any.
I've missed a ton of work because of the pain and I am probably going to lose my job entirely because of it. This is what my pain is like in it's most severe instances. I will get a sharp pain that feels like it's drawn horizontally acoss my upper mid-back. The pain quickly increases and becomes so bad that it hurts to breath and I can't take a deep breath. When this happens my husband always has to keep me from hyperventilating because the pain is so intense at this point I am sobbing but yet can barely breath. I also get intense stabbing chest pains. I carry on in this state for anywhere from four to six hours. I am literally crawling around my room trying to find some position that I can rest in. I can never lie down when it's this bad. These are the very worst times, other times, like right now, I will have swelling along the spine and be unable to use my right arm, unable to bend over, and unable to move my neck without extreme pain. When it is like this, I absolutely cannot bend my neck down as if to look at my feet.
If anyone else has similar pain, please let me know about it and what your Dr. has to say.

[Shari]

Hi Nuts and Bolts,

I feel so bad for you that I am without words. I have pain, but nothing that even compares to what you are describing. I just want to reach out and hug you right now!!! Have you been experiencing this ever since you had your surgery, or is it a more recent thing? Would you feel comfortable telling us where you're from?

Very interested,
Shari

[LindaRacine]

Nuts....

I really want to encourage you to get a second opinion, hopefully before you lose your job, especially if your insurance is paid for by your employer.

Regards,
Linda

[JoAnn5]

Nuts..

I'm so sorry that you are going thru all this.. My goodness, makes my little twinges seem as nothing in comparison!!! I'm certainly no doctor or any sort of medical person... but the first type of pain you described seems to be muscle spasms... i too had thoracic surgery and sometimes i get them in the rib area where they had to manipulate the muscles to get to the spine..but nothing to this degree. Are you still taking muscle relaxers?

The second kind of pain which includes the swelling has to be inflammatory (in my guessing), and it's the inflammation which irritates the nerves to your arm and neck... There should be some sort of anti-inflammatory medicine your dr. can give you.

I'd look into another opinion as Linda suggests... also check the availability of a pain management specialist. It is totally wrong for you to have to endure such pain. Do it as soon as you can too, esp. if your job is in jeopardy from it.

Hope you can find some ease soon... Wishing you the best, JoAnn

[Carmell]

Sorry to hear you are in so much pain. I hope you find a doc who will take the pain seriously. This is not typical.

Have you had an infection? The pain you are describing sounds very similar to my daughter's pleurisy. I would be looking at different reasons for the pain, besides post-surgery.

Also, I wonder if there is a nerve-related issue here. Regardless, a pain management team/doc would be able to help you, I'm sure. Good luck!

[nuts and bolts]

Thank-you all for your replies and sincere words. To answer some, yes I am still using muscle relaxers and I have checked into other possible causes such as infection. Unfortunately I don't have insurance so pain management therapy and more opinions are somewhat out of reach. Visiting my family doctor and then the second opinion that I did attempt to get, I had to pay cash for. The surgery itself was paid for by a Vocational Rehabilitation center. Although I praise God that none of you are enduring the same thing, I was hoping to hear that I was'nt alone. If someone else was going through the same thing I thought they might have some answers. Tommorrow I am going back to the surgeon for a sixth month follow-up. I've considered not leaving his office until he tells me some kind of answer. I know it will be confrontational, but I don't know what else to do. I'm going on my third day in a row of missing work. Last week it was two days. Please keep me in your prayers, thanks for your thoughts.

[nuts and bolts]

Oh yeah, I don't mind telling you where I'm from, or atleast where I got my surgery. It was in Charlotte, NC.

[crookedspine]

I'm with Shari...I want to reach out and hug you. Instead, I have already sent a prayer up and will continue to pray...and put you on a prayer chain. I feel for you. I am 3-1/2 months out and have some pain, but nothing like I was used to, and nothing like yours. My prayers and thoughts and definately with you! Linda

[itsjustme]

I'm sorry to hear that you're in so much pain. I can't relate to it on your level by no means, but my surgeon did break through the pedical wall in two places in my spine during my operation. Anywho... The last comment you made was that you cannot look down at your feet. I too have this problem. My surgeon has explained that it is completely normal for that to happen. Especially if your curve was in the thoracic area. :/ It will get better, it just takes time, eventhough it hurts try to bend your neck down and touch your chin to your chest. In time it will become more flexible. My physical therapist has been working with me on this for the past 6 months. It's good to get those muscles moving again in your upper back by doing this. You don't want to end up really really stiff. Have you thought of seeing a pain-specialist?? Just a thought. I hope you feel better and good luck with everything.

~Shelley

[CurvySAT05]

Nuts, you are not alone. I felt the exact same thing after my first surgery. I havent heard anyone like this either. I had surgery Feb 1, 2005 and from that day until I had one of my rods removed it felt like I couldnt breathe. About a week after my discharge from the hospital in Feb. I ended up in the ER with a partially collapsed right lung, pleural effusion (fluid around the lung), and pneumonia. The fluid had to be drained, I was put on antibiotics for the pneumonia, but the expansion never really happened. I had pain along the bottom border of my ribs in the back and lost most of the range of motion in my right shoulder as well as strength. I went about 10.5 months like this and my surgeon ended up taking out the rod on the right side. We believe that it was sitting on a nerve causing all the pain. Since then the pain has been resolved. I am almost at full range of motion, and am starting to work on getting strenght back. I had the rod removed Dec. 15th 2005. The screw/hook/rod could look all in the right place by the MRI but it is the nerves you have to think about. If the rod were on the nerve it could cause the swelling as well.
It hurt to sneeze, cough, breathe, anything with my lung. My cardio went to crap because I couldnt do any exercise during this period.
I hope your appointment goes well today. This might be too late for you to talk to your surgeon about. Let us know how it goes. My prayers are with you and I know how you feel.
Mandy

[csbaby]

My sympathy and heart go out to you.

Nuts and bolts – I sympathize. As with all the other respondents, my heart just goes out to you. I have had various post-op pain for 4 years now. Some of the pain was a direct result of surgical procedures performed; ie: nerve damage, sciatica, mechanical stress. And some is just from age and deterioration. But even though doctors tell us we can resume most of our normal activities, some of those normal activities are really hard on our backs. And let's face it - hardware breaks, loosens, or adjusts so that it causes excruciating pain that can't be seen with an X-ray.

I can’t believe your doctor actually said "I don't know what to tell you, people don't come out of this surgery in more pain." (Personally, if my surgeon said this to me, I would be doing some detailed research on the guy, checking his background, credentials, certifications, etc.) If he checked out all right, I would go back keep asking why? I would be begging and crying out for answers, reasons, etc. I am lucky and thankful that I have a surgeon with his entire team helping me in this life changing surgery process, because I have done all of the above.

Unless there is something wrong, (and it sounds to me like there is) you should not be experiencing the level, or the different types of pain you are having especially since you are over 1 year post op (Jan 05)! Depending on the size of your surgery, in reality, it takes a good 1-2 years to fully recover. How soon after your surgery did you begin to feel “all right”? Do you recall what you were doing when you began to experience the pains you are experiencing or when they became noticeable? Were the pains noticeable prior to you feeling “all right”? I am anxious to hear what your doctor advised you at your 6 month follow up. Hopefully he was more sympathetic and agreed that something is wrong. If not - do whatever you can to get a second opinion from a certified orthopedic scoliosis surgeon, and preferably one that also works on revisions.

So what did your procedure include? You had an S-curve, but what were your degrees of curvature? What levels are fused? How long were you in the hospital? Were you consistent in wearing your back brace? I know you wanted to hold your children, but did you possibly over do it on weight limits? And dancing? One night about 7 months out I felt like dancing (Cher special on TV) – so I did in front of my tv in my living room. And I paid for it big time for several weeks. My boss just couldn’t comprehend why I hurt so much from a little dancing. If someone hasn’t gone through what you and I have experienced, they will never be able to understand.

Having kids is physically demanding on a healthy woman. But with your surgical instrumentation, playing with the kids, hiking, etc has to be mild. As much as you want to play with your children, maybe reading to them, having picnics at playgrounds and taking nature walks will sustain them at this age until you are healed. Rough-housing needs to be curtailed or left to the daddy!

I had my first surgery in 2002 and never fully recovered. (My first surgery I was fused from the top of my thoracic down to L3. I had ribs removed on my right side and a hip graft on the right side as well for bone graft and restructuring purposes.) I did get better after going home. And I went back to work after 12 weeks. (Too soon). I believe I tried to do too much too soon after my surgery. Complete recovery from this extensive a surgery is 1-2 years.

Over time, I was happy to be decreasing my pain meds – that told me I was getting well. But I never was able to give up the pain meds completely because I was experiencing pain isolated in certain locations (around L4 on the left side), nothing like what you are describing however. I spent a lot of time in my surgeon's office, having multiple x-rays. And when they couldn't see why I was still hurting from looking at the X-rays, we went on to do other tests, CAT Scans, myleograms, discograms, etc. And sometimes they just have to open you up in the area you are hurting and visually look at the bones, the fusion, the screws and rods, the nerves, etc to find what the trouble is.

So they find something wrong, fix you back up, send you home to recuperate and tell you not to over do it. And then there is more pain for some other reason – because your body mechanics are different and you are walking differently, or there is nerve damage or something. I have to keep after them until I am satisfied with the results. And sometimes being pain free is not an option – ever. But quality of life is so much more important. I can deal with a little pain, but I am not going to become completely debilitated to the point where I can’t even do the little things (laundry).

It is now going on 4 years from my first surgery, and I am getting ready for #5 next Monday. I have a loose screw in my pelvis. We discovered this around week 5 and have been watching it to see if bone would grow in around it. I have been taking it extremely easy and this is resulting in my feeling much better from my 12/15/05 surgery. I sit, watch TV, walk my dog and do lite housework. Life if getting pretty boring and I am ready to go back to work – but for a week? I don’t think so. I am afraid to call and talk with my “supervisors” because I don’t know what they will say and there have been so many changes over the last year relating to my job – it’s all so confusing.

Like you, there is a possibility that I will lose my current job as my FMLA ends on 3/7/06. But I did not anticipate having a loose screw, nor did I expect to wait this long to get it fixed. Am I worried about losing my job of 19 years – YES. I could go back to work on 3/7 and disregard the loose screw in my pelvis – but then my chances of healing completely would be severely compromised. And at this point, I believe that when I get this repaired, I will be done with surgery and well on my way to complete and lasting recovery. So I am putting my health first. And unless my company has mercy on me, I will be unemployed, undesirable as a potential employee for another company based on my medical history (I have cost my company a bundle), and uninsured. But I will have the satisfaction of knowing that I did not go back to work too soon, that I did what was best for me this time. And then I will begin to figure out what the future holds for me. Am I a little scared – you betcha. I have placed my faith, trust and hope in God. The Lord is on my side; I will not fear: what can man do unto me?

I offer you my friendship if you need / want someone to communicate with. Sorry for the length of this post. Trust in the Lord with all your heart, and lean not to you own understanding. Acknowledge him in all your ways and he will direct your paths.

My prayers are with you.
Christy

[crookedspine]

Cristy & Nuts, I hate that you are going through this. My prayers are with you both. Linda

[jesscv]

I am a twenty-six year old female. I had a thorasic and lumbar curve that was progressing. January 2005 I had surgery. Since then I have been on a rollercoaster ride of pain. For about a week, I will feel allright, able to dance, hike, and play with my kids (all the things I love). Then I will go through about three weeks straight of severe, debilitating pain. The pain has been so bad that I once went to the ER thinking that there was something really wrong. The doctor that saw me took x-rays and told me that the only thing he could see was that one of my screws was not placed the same way as the others and maybe it was irritating the thorasic wall around my lungs. I got in to see my surgeon right away in regards to the pain and what the ER doc told me. My surgeon said that that was'nt possible but he did order an MRI. After the MRI, I saw him again. He told me that everything looked great and he said "I don't know what to tell you, people don't come out of this surgery in more pain." That was my last visit with him. I went to my family doctor because if my pain was not from the operation, then I needed to find out what it was. When I described everything to her, she told me that "to say that this was not a result of surgery was proposterous." She sent me to another back specialist for a second opinion, but he did not deal with scoliosis surgeries, so that did'nt help me any.
I've missed a ton of work because of the pain and I am probably going to lose my job entirely because of it. This is what my pain is like in it's most severe instances. I will get a sharp pain that feels like it's drawn horizontally acoss my upper mid-back. The pain quickly increases and becomes so bad that it hurts to breath and I can't take a deep breath. When this happens my husband always has to keep me from hyperventilating because the pain is so intense at this point I am sobbing but yet can barely breath. I also get intense stabbing chest pains. I carry on in this state for anywhere from four to six hours. I am literally crawling around my room trying to find some position that I can rest in. I can never lie down when it's this bad. These are the very worst times, other times, like right now, I will have swelling along the spine and be unable to use my right arm, unable to bend over, and unable to move my neck without extreme pain. When it is like this, I absolutely cannot bend my neck down as if to look at my feet.
If anyone else has similar pain, please let me know about it and what your Dr. has to say.

Did you ever determine a cause/solution for this pain? ...sounds like exactly what I am experiencing 5 weeks post-op. :/

[nervous]

It saddens me to hear these types of set-backs. You've been through so much and this just makes it more difficult.

My prayers are with you. I am confident things will get better for you!

[scurve4947]

I wonder if any kind of all over pain medication would help...something for generalized pain. After I was having similar symptoms and nothing would help, they finally put me on Lyrica. It has helped tie me over until surgery. I hope your situation gets resolved soon...I feel so bad for you.

Allison