PTSD due to 6/21/2013 scoli fusion-new study in Spine

[susancook]

I don't know how long the symptoms might last. It is not as bad as it was. There is a YouTube video of a posterior scoli surgery. I found it there a few days pre op, but I was afraid to watch. Post op I have been too afraid to watch it. Afraid of what, I don't know. There is a lot of stuff I am afraid of now that I wasn't before Surgery. I watched the video today. I felt empowered by overcoming my fears and watching what was done to my body. I was not grossed out by it. I was informed. I was thinking "So that is why it hurts so much". I was almost in awe of how much destruction my body can sustain without dying. I am stronger for it. And I feel proud that I am enduring the aftermath. Were it not for this forum with others sharing their stories and support I don't think I would be doing nearly so well. Thanks.

Wendy, I agree with you and thanks for sharing. Graphic pictures of spine surgery really help to illustrate the phenomenal anatomical changes that can occur w/ scoliosis surgery. The videos that I have seen do not show how the surgeon "cranks" for lack of a better word, the back into straightness. Did you see one of those? I think seeing that would help me to better understand how all of the muscles are pulled from their original place and stretched.when my PT was discussing why my muscles hurt so much, he said that when I moved my back before surgery, the muscle tugged on the spine and the spine gave with it. Now, when I pull I. certain directions on my back, the muscles are pulling from a stationery back that does not give, thus the muscle has to stretch further than it did before. Ah-ha! I get it.
Susan

[rohrer01]

This is a very interesting topic to say the least. I haven't had spine surgery and was never in the ICU. However, I did have a C-section in which I was supposed to be under general anesthesia. The anesthesiologist failed to give me the "knock-out" after the paralytic drug was administered. This resulted in me being fully conscious, yet unable to move or scream as they were cutting into my belly. Afterward, I told them about it and they really drugged me up good with something. I don't know what. They were constantly coming in and injecting stuff into my IV and giving me shots in the butt.

I had the psychosis part. I swore I heard the nurses talking about my positive HIV results. Here I'd just had a baby and was convinced that I had HIV. I cried and cried. I felt that they were secretly keeping it from me and weren't being honest. I finally confronted a nurse about it and she said they had talked about an HIV conference that they had gone to. I wasn't convinced. Then they lowered my meds and I snapped out of it. Of course I don't have HIV, but I laid there for two full days, not seeing my baby and thinking I was dying. It was HORRIBLE.

[Pooka1]

{{{{rohrer01}}}}

So sorry to hear that!

[LindaRacine]

I highly recommend animations as opposed to watching surgery videos. They're far more simplistic, but if you're interested in how the straightening procedure works, the animations show that well.

http://www.youtube.com/watch?v=OfWQr_2yF9g

http://www.youtube.com/watch?v=WBIf4AQj5s0

http://www.youtube.com/watch?v=wYrm2GBQxqQ (Though it says it's a scoliosis correction, it's actually a kyphosis correction.)

[WLB1]

The actual surgery video did show the surgeon reducing the curve and placing one of the rods. It was a help to my husband who has thought I should be well by now. Tomorrow is my six month birthday from surgery. And I am feeling and doing a lot better. My nightmares are almost gone. I have increased my daily activity rate to at least half of what it was...it is good. I can tell it will get better. We have discovered that the right half of my body is smaller than the left. My right leg is an inch shorter than my left, my right foot is a size smaller than my left, even my right hand is smaller than my left. I would imagine my scoli was a lifelong thing. Thanks, Linda, for the links.

[Pooka1]

It was a help to my husband who has thought I should be well by now.

Hi. Can I just ask why he thought that? Was that thought based on anything real or just his imagination?

I am always slightly shocked how it is that lay people seem to be able to form opinions about things on which they have not one iota of data. It's breath-taking really.

[susancook]

Hi. Can I just ask why he thought that? Was that thought based on anything real or just his imagination?

I am always slightly shocked how it is that lay people seem to be able to form opinions about things on which they have not one iota of data. It's breath-taking really.

Sharon: re: "opinions on which they have not one iota of data", I do not think that a lay person that has had scoliosis surgery or a lay support person needs to be a spinal surgeon or an intense medical researcher to appreciate the magnitude of the surgery when videos are watched. Yes, opinions are formed on very limited visual data, but in many cases, that data is sufficient to get for a lay person to get an appreciation of the magnitude of the situation and then to be supportive.

Of course, there are many people on the forum who want far more detail and comb the medical literature for details. I am not sure how much information lay people might get out of an intense research project that summarizes data with a regression analysis (aside from the fact that while you and I and the researchers on this forum would find it fascinating) boring.

In patient and family member medical education, there needs to be a minimal level of education that helps the lay person to understand what is happening, yet is not so overwhelming or gross that it turns them off.

I show people my X-rays that I have a small version of it laminated in my purse. It has before and after pictures. I think that the majority of people that I show them to gain a basic appreciation of what I went through with the surgery.

Cliff's notes of above: seeing visuals or X-ray pictures can give most/many lay persons a sufficient understanding of the basic process that people with spinal surgery go through and can therefore probably reassure both the surgical person and the support person that the process is enormous and that it involves a lot of anatomical changes.

Susan

[Pooka1]

Sharon: re: "opinions on which they have not one iota of data", I do not think that a lay person that has had scoliosis surgery or a lay support person needs to be a spinal surgeon or an intense medical researcher to appreciate the magnitude of the surgery when videos are watched. Yes, opinions are formed on very limited visual data, but in many cases, that data is sufficient to get for a lay person to get an appreciation of the magnitude of the situation and then to be supportive.

I just would like to know how he formed the opinion, after seeing the materials, that his wife should be further along in her recovery at six months than she is. I mean what could he possibly be basing that on other than sheer imagination and guesswork? How can he have an opinion one way or the other with no ground truth whatsoever?

[WLB1]

Scoliosis surgery is really hard to describe to someone who has not lived through it. I, who lived through it, had a hard time understanding what happened to me. I only had three weeks between being told that my scoliosis was an emergency case by my surgeon and having the surgery. Dr. Bagley is a well known Nuerosurgeon who specializes in scoliosis and spinal reconstruction. He is also a professor at Duke University, he does about one scoli surgery a week and he is booked out for months. Evidently my case was urgent. I simply did not have the time to know what was to be done. I had been in terrible pain for several years. I figured since I was used to terrible pain the surgery couldn't be worse. Wrong, wrong, wrong. I was completely unprepared for the pain levels I endured. I have issues with pain meds, not being able to take morphine and several other types of pain meds, so I think I was probably under medicated. With just a straight fusion such as when one has several levels of ruptured disks, the procedure is straight forward. Even the youtube clip we saw was a simpler surgery than mine must have been. My upper curve was 20 degrees to the left thoracic, not so bad, but my lower curve was really complicated..my L2 and L3 were twisted into a horizontal kink that was lodged between my ribs and pelvis on my right side. I had a grade two spondylothesis between the two vertabre that was quickly becoming a three. The shots I was given before I was referred to my surgeon made my symptoms worse. I was loosing bowel control, I had pain and numbness in both legs, weakness in both legs. My surgeon had to unkink those two vertabre and settle the spondylothesis back together before he could straighten the spine. In the process of doing so he created a large pocket of stretched out muscle on my right side, with a hernia where my spine used to be between my ribs and pelvis. There seems to be an area just above the hernia where my ribs were damaged. That is the area where I had my most intense searing pain following surgery. At six months it remains painful even with continued use of Percocet and plain oxycodone for breakthrough pain. I am also on lyrica and cymbalta. I use tramadol at times and am on the maximum dose of Celebrex. I really don't think anyone can know the depth of another's pain. In my husband's defense, he does a lot of work out of town, and was not with me during my consultation with my surgeon. When I asked the surgeon what the recovery was like, he sort of danced around the issue and said most people start to feel a little better at six weeks. I fully expected to be well at six weeks, as I had been for other surgeries. Why would my spouse not expect the same? I think viewing the film reassured us both that I have been through a lot, and the fact that I am still in pain and weak is probably normal, and does not mean that I am going to be this way forever. As far as PTSD is concerned, realizing what was going on with me went a lot way towards my being able to deal with it. As I understand that diagnosis, in most cases it is a temporary problem, not a permanent one.

Sorry for my long ramble, and thank you all. If I were not able to read, learn and share here, I would be sure I had some rare complication!

Wendy

[Pooka1]

When I asked the surgeon what the recovery was like, he sort of danced around the issue and said most people start to feel a little better at six weeks. I fully expected to be well at six weeks, as I had been for other surgeries. Why would my spouse not expect the same?

Okay there was a deep misunderstanding between both you and your husband and the surgeon it seems. Even without all the extra complications your case had, many adults are certainly still deep in recovery at 6 months with much of the the recovery still ahead of them as far as I understand these testimonials. And given your case seems more complicated (an emergency) than most adults, I would think that might push the timetable back even more.

I guess I am a little amazed at the possibility your surgeon didn't seem to manage your expectations and give you a far better idea of what recovery would likely entail. Maybe he did but you were too deep in the whirlwind to take it all on board.

Eyes on the prize.

[WLB1]

Thanks Sharon! Indeed! Eyes on the prize!

[susancook]

I agree with some of what your doctor said, Wendy that "most people start to feel "A LITTLE BIT BETTER" at 6 weeks....emphasis on little. I would change it to SOME people start to feel better. While your doctor might be an awesome surgery, he is unrealistic about recovery time. I hope that you understood from our experiences that your recovery was normal and that the fact that you still felt poorly at 6 weeks could be very normal.

Unsure what you mean by having a surgical hernia with a stretched muscle, but I hope that you are better.

Time is always on our side and recovery involves patience..... Susan

[jrnyc]

hi WLB1
i hope you continue to feel better every day....

may i ask why it was an emergency surgery...?
do you mean as in "life threatening" emergency...?
was the curve(s) impeding your breathing...?
your heart function...?

just wondering why it was essential to move so fast on
it...

jess

[WLB1]

Jess, it was an emergency in that my spinal cord was at risk of being broken at the L2-3 level. My neurological symptoms were progressing rapidly. My loss of bowel control was complete, but only at night. I had read those things become permanent quickly, if not addressed sooner rather than latter. I fave a football shaped bump on my side where my spine used to be, when I contract my abdominal muscle that area no longer contracts. The area where the hernia is sometimes has a large intestine protruding from it just under the skin. I also seem to have some nerve damage along with the damaged ribs. All this I think, is due to the difficulty of my surgery. My back is now almost 100% straight. I still have some residual weakness in my left leg. My Surgeon said my nerves roots were "mashed flat", some of them came back to life quickly, some did not. They X-rayed my right foot to see if it was "still living". It is, but it is blue at times and has no ankle reflex. Time will tell whether these things will get better on their own or not. If the nerve pain that starts between T7 and 8 and circles around my ribcage to my damaged ribs does not improve, my pain management Doc has suggested another minor surgery to repair that. I think my football on my side will be with me for the long run and my final touchdown. All in all, considering that I am getting better, I am beyond thrilled with the results of my surgery. My back is now 100% straight, i love the feeling of it. I have a sister who is three years older than I am. She also had scoliosis, and had a two day surgery in Atlanta, Ga. On her second day she had a stroke from a blood clot. In trying to remove the clot, they burst a blood vessel in her brain so she had a bleed in her brain. Five years later she still has issues with talking and her entire right side still shows stroke damage. She was a marvelous musician and writer who loved good conversation and good people. Today, she slowly walks with a cane and only speaks to family members who can understand and interpret what she says. She has adapted to her limitations and seems ready to move on to the other side. My fear of having scoli surgery was amplified tremendously after her experience as I am no ready to pack it all in just yet. Fearfulness multiplies the chance of PTSD.

So there is where I am at six months. Still healing and being careful, but finding much to be grateful for and happy about with my life. I have a beautiful straight back! A good sweet husband and many, many blessings to focus on, and a whole raft of new friend who know where I have been and can talk me off the ledge of despair when it's needed. Onward and upward!

[jrnyc]

thanks for the explanation, Wendy...
it all sounds really frightening...
and the speed with which you had to go into surgery...
i am sure that contributed to alot of mental disequilibrium...
such a drastic change in your physical being, so fast...
must have been disorienting...overwhelming...

i hope you heal completely, one day at a time...

best wishes for a good New Year
jess