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View Full Version : Three to Four Month Post Surgery Blues?



djkinkead
11-28-2011, 06:01 AM
Writing to see if those who are further along in the post surgery timeframe if they had kind of a three to four month "blues" period.

I have not been really good at getting out and walking. Some of your posts have inspired (or is the word guilt :-) ) to get walking and I have did probably close to two miles a few days ago and one to one and half miles past few days.

I am really starting to feel my "hardware" now. I have done shorter walks before and I never was super aware of hardware, but boy am I now! It's sometimes painful, sometimes just a weird feeling. With the longer walks, I find I need to take four rounds of meds instead of three (doing 1 tylenol and 1/3 of a vicodin per sitting).

It's also making me think about what I can and cannot do after this. Yet, when I see videos of people skiing, I kick myself and try to think of bright side. I used to show dogs (60 lb dogs), not sure if I can again. You have to do a pretty fast jaunt with them around the ring.

I do understand that my condition would eventually push organs into each other and this stopped that process.

Also, I wonder if these feelings are because, unlike many of the forum members, I wasn't in a lot of pain before the surgery. I definately have more pain now.

Is this normal for this period of recovery?

kennedy
11-28-2011, 08:38 AM
well i could never tell or feel the metal in my back. Some time if someone has a high pain tolerins then you will feel pain

leahdragonfly
11-28-2011, 08:52 AM
Hi there,

I can totally relate to everything you described when I was around 4 months post-op! I returned to work at 14 weeks due to increasing feelings of isolation, boredom and feeling blue (not to mention strong financial pressures). I should have waited another 2-3 weeks before going back, as it did set me back in terms of pain and progress. Unrelated to work though, I remember clearly about 4 months post op I still had a very significant amount of "aches and pains", and I remember being very discouraged thinking that was the final outcome of the surgery. My wise friend told me that I should expect that I wouldn't feel great until about 6-7 months later. At the time I was very distressed by this, and thought how much it all really sucked, but he was right. I actually felt much better at the 6.5 month mark, but even now, at 13 months post-op, I feel I am continuing to improve a lot.

I think one part of the blues at this period have to do with what a huge surgery it is. For the first 6-8 weeks one is in survival mode, living in the moment for pain meds, position changes, bathroom problems, trying to eat, etc. After 2 months of this, and some significant improvements, one is ready to move on back to the former life (not that of an invalid). However the body is just not ready yet, nor is it even at 4 months, although the mind wants to be! I think at this point it is normal to experience sort of a post-traumatic letdown period, as if your mind is saying "OMG that was terrible what I just went through" and now that the survival mode is through, you experience a bit of a mental slump. I know I did at that period.

You are still early in recovery and you have a huge amount of improvement to look forward to. You must be patient (which is certainly not easy for me!!). But you will get better. Keep active, take your pain meds if they help (that is nothing to worry about - 1/3 of a vicodin). Try to remind yourself that you still need good rest, good nutrition, and regular activity. Try not to dwell on what you think you can't do, because most likely, you will be able to return to it, or you will find other ways to do certain things.

I found that I was totally unprepared for the mental aspects of this recovery and the mental aspects of getting a large amount of hardware placed into my back. It caught me off guard, and I don't see a lot of discussion about that here. There is a huge mental/emotional component to recovering from this type of surgery. I bet if you write down some of your feelings and experiences now, and go back and look at them in 4 months, you will be amazed at how much better you are doing then.

Please feel fee to PM me if you want to talk further. I truly know how you feel, I was there too. Hang in there, it WILL get better, I promise.

Marina63
11-28-2011, 01:23 PM
Hi! I am a month ahead of you and I completely understand how you feel. I also was not in much pain and really had no idea my curve had worsened until I went to an ortho last January for the first time in 17 years. I was having some issues of discomfort, not pain. My curve had doubled in that time frame. I was very active, mobile and flexible. I feel like I am 80 now. I have tons of energy but my body won't do the things it used to do. It is depressing since, like you, I wasn't in any major pain before and feel worse now. I'm sure I did the right thing by having the surgery. Just not feeling it right now.

I need to be patient. Everyone says I'll be back to normal by 12 months. Hang in there!

walkingmom
11-28-2011, 07:25 PM
Hi!
For what it is worth, you are not alone as to how you are feeling. I just returned from my almost 7 mos. post-op appt. The good news was that all of the instrumentation looked great, no screws loose! However, on the down side, I am one of those who is now sitting on the wrong side of the bell curve as to when all of the muscles settle down. Darn - I was never one to be below average and yet here I am! Disheartening, yes, because I went into surgery in somewhat good physical shape, but knew it had to be done because of the progressive curvature. However, the upside is that my dr. and his pt gave me suggestions for some other things that I can do to move beyond my plateau. So I will continue with my daily walking regimen, but I will now start doing some strengthening exercises. I know that this won't be easy especially since I never did have any upper body strength to speak of (which is probably not uncommon for us scoli patients).

The beauty of this forum is having folks who can relate to you and are here to cheer you on. As I just recently read, year 1 is about healing and year 2 is about strengthening. My prayer is that we can all be healed so that we will eventually be strong enough to follow our passions (showing dogs for you & playing tennis again in 2013 for me). Just remember how far you have come already and just take it one day at a time.
Donna

djkinkead
11-28-2011, 08:21 PM
Just wanted to thank those of you who posted of your similar experiences to what I am going through. At least now I know I am not totally "abby normal".

I guess I also need patience and practice what I preach when I tell those about to go through the surgery: "Each day it will get better".

Thanks once again for sharing what you are experiencing and what I can look forward to (sounds like the six month marker is a good one).

Dollie

Kayde
11-28-2011, 10:35 PM
I'm a couple months behind you and I agree with everything that. Shared. I usually bounce back quickly from the few surgeries I have had. I had a breast tumor last December and most of my right breast had to be removed and reconstructed. I was back to work in 16 days. I thought mentally this couldn't be worst. Truly the mental aspect of this is hard. I live for position changes, bathroom runs and the 2 days my house assistant comes for laundry. Raining here for 2 days. No walks. I was walking farther 2 weeks ago. I'm more tired easy now so 8 blocks and then maybe a mile every few days. Been back this week to the walker because it has a seat so in case I walk and don't feel I can make it home I have a place to sit. My neck hurts now which never hurt before. I had horrible right hip pain over 2 years and knew I had to have the surgery but I wasn't in the same kind of pain I see some people had. I knew some things I couldn't do anymore which was hard but feelings of isolation and feeling like an invalid isn't something you can prepare for I guess. The Tylenol does ok but I know I ache because I lay. I can't sit up for too long or I hurt. Lots of just uncontrollable tears you can't explain. I feel 86 and struggle with little things like showers wanting to go to the store for little things. I ramped up my peanut and walnut consumption as I read it helps muscle and skin repair...and it helps with bathroom issues. In my head I had it all figured out - I was in fairly decent shape before surgery. I had gotten out my stitch pad, photo's I wanted to draw or paint, audio books, kindle books, my knitting.....I thought by three weeks out I would have to take it easy but was not prepared for just the exhaustion and inability to do anything It takes a toll on you. You wonder how long do I have to feel like this and be so dependent. I am thankful I did this and not waited till I could be wheelchair bound etc. But it doesn't do much for you some days. I'm told this is all normal. I guess most of us go in with I'm going to improve faster than normal. I'm in awe of some of the strength of the people who returned to work @ 6 to 8 weeks in an office with long commutes. I got enough nerve to go to walgreens. By the time I got my stuff stood in line I was sitting in the floor. I know keeping moving is the key to getting over sore but just breathing is like a work out some days. Idk if I feel rods, screws or just laying and still having fluid around my surgery area makes my hips and neck hurt but the neck really hurts and I swear I feel something. Not being able to make anything for thanksgiving really hit home on how little I can function. Took me all day and a great postman but I made shortbread today and my postman who brings my mail to the door was nice enough to get it out of the oven. I also tried on dresses I have normally had to wear sweaters over to hide the curve and I was pleased to see I don't need the sweaters anymore. I just need my 11 pounds back. But some days I just can't heat up my dinners-too sick or too tired. I was also to,d 6 months is the real corner you notice you turn. I know I better than 5 weeks ago but in my head I'm really over this. Your not alone in how you feel. My dr told me spi e surgeries can re,ease enzymes that can cause temperature fluctuation and depression. Beginning to think he is correct. I find it harder to get myself to be more mobile and do more things I think I should do to keep my body active and blood flowing. I guess this is just part of the process and I think it's harder for people who were active with busy lives to just hit a brick wall. I sort of feel like humpty dumpty and I fell off my wall. :).

progress
11-29-2011, 04:18 AM
Hi,
I had my surgery on the 15/8/11 in Sydney. The first couple of days in hospital I felt surprisingly well then the bowel ileus set in which was terrible and kept me in hospital for two weeks. Once that was resolved, (I think the prune juice was the best), and I got home, I felt I was on a bit of a high. It didn't feel as bad as expected and I was walking around the neighborhood and going out for lunch easier than expected. At 6 weeks I went back to work (very easy job physically) and found I became deathly tired and down in the dumps. I had always been sore in the soft tissue on my right side that had previously been concave but now had been filled. I complained to my surgeon about this in hospital when it was really gnawing and he said he had done a lot of cutting and slicing in that area. I kind of want to know exactly what he did but maybe it's better not to know. I find now when I have been doing some bending this area gets quite achy, I was hoping it would be better by now and is holding me back but I seem to be improving overall. I'm not walking enough and when I do I feel limited insofar I can't really take big strides and power walk but have to pace myself. I'm still stiff and largely bending from the knees as much as I can. I have had various aches and pains which have been a bit scary but seem to change places. My spine area itself feels pretty good with some little aches that come and go in the muscles. I'm starting to feel that I need to stretch myself out to up my recovery but I am afraid to as my Dr ddin't say anything about stretching. I will ask him in Jan when I see him. I know what you mean about the 3-4 month blues I kinda feel good but not quite and worry that I will never be the same again. I also had little pain before surgery but a feeling my spine was collapsing and a feeling of discomfort. I also had some nerve impingement in my right hip that I had to reposition in bed. Having said that I'm loving my even hips and wearing wasted clothes.
I'm glad others say you keep improving because I'm definately still limited now still. My lower right back is still numb too but I get little flutters in there which I think are the nerves trying to regenerate. I think when that right soft tissue comes good I will feel pretty good.
I 2will keep in touch
Kelly

jeneemohler
11-29-2011, 01:44 PM
Even with as smooth and uneventful as my recovery has been, there still has been several ups and downs. I also felt that 3-4 month depression. Not really depression in my case-it was more of a frustration thing for me. I was running out of patience, getting bored, and tired of the whole darn thing. Leahdragonfly described it perfectly. I couldn't have put it any better about no longer being in survival mode. At this point, you are getting frustrated with the whole "trying to be patient" attitude. "I want to be done and I want to be done with all this RIGHT NOW!" You are feeling this way now, because you ARE doing better. Otherwise, you would still be more concerned about just survival. I had to make a conscious decision to be positive and realistic about my recovery.

But it DOES get better. I had a huge turnaround at 6 months. That was when I took a much-needed vacation. I needed out of the house. Taking a break was really helpful for me, mentally. It distracted me from thinking about my back every waking moment, and allowed me to just relax and enjoy life and new adventures. I finally felt like I was somewhat of a normal human being again, and it made me realize that everything was going to be fine. Then I hit another plateau at 10 months where it felt like I was not improving and was never going to feel normal again. It was a let down after feeling so good at 6 months. I didn't expect it. Now this 11th month has been better again, and my energy and stamina is getting better.

When I was told that it takes about 2 years for full recovery, I couldn't believe it. Now I'm a believer! Surely, I thought, I would be fully recovered at a year. I was in really good shape and very active. But there is still so much healing going on with my nerves and muscles. I have recently gotten a lot more feeling (finally!) in my back. And I still get a lot of spasms. Ed must have loaned me his "bear trap"! I believe mine is related to not being able to stretch and use those back muscles. They are so tight. I cannot wait to hopefully get the go-ahead in January at my 1 year anniversary to be able to do a little twisting so I can stretch them out. I think it will help.

Well, enough about me. Just hang in there and things will get better. I compare the recovery process to saving for retirement... You start at the bottom (surgery) and hope for a nest egg (full recovery) at retirement time. You can't worry too much about the little ups and downs in the market (plateaus and depressions) over the time period in between. It is all about the end result!

djkinkead
11-29-2011, 06:49 PM
I really liked the description of moving from survival mode to the next phase. That is truly the best description.

I am mostly doing part time telework and have gone into the office for part of a day one day a week.

Kayde, what you are going through right now is so fresh in my mind. I found I had to sleep on my back without a pillow. I got neck aches from using a pillow. You do have the memory foam on your bed, right? Also, when sleeping on my side, per the hospital staff, to be sure to keep a pillow between my knees to keep the hips aligned. I keep an extra pillow that I use for my knees beside the bed for the times when I decide to side sleep for a while.

I know many feel like me: I couldn't have gotten this far without you guys. You are all the best! You are a blessing from God.

golfnut
11-29-2011, 08:20 PM
Jenee',
I can't believe how similar our recoveries have been. My lulls were exactly the same time as yours. I became a little frustrated at 9 months post-op thinking that I should feel better than I did at 6 months, which fortunately was pretty good, but I actually felt more aches. I had felt so well that I tried to kick up my workouts and hiked up and down some really steep hills, which caused some muscle inflamation and had to resort to ice and Aleve. I hadn't even taken a Tylenol in several months. Now, I'm almost 11 months, feeling better again and looking forward to my year checkup. It's too bad we can't celebrate the milestone together!

KathK
11-29-2011, 11:02 PM
Dollie,

I used this simple, mental trick to help me "make it" to the one year point. If I thought about the one year point as being my "goal", I would then calculate how far I was towards that "goal" every couple of weeks. So, at 10 weeks, I was just (approximately) 20% of the way to the one year point. Somehow that made it more tolerable for me. If I would get frustrated with my progress, I would think, "well, I am only 20% (or 30% or even 50%) of the way to that one year mark. That made it seem more natural to still have some things I couldn't do. (Also, I like math :-) ).

I can also "feel my hardware" when standing or walking, and I'm almost a year ahead of you. It's not painful, just strange. For me, I mostly feel it at the bottom of my fusion, what I guess to be the L5/S1 area.

Hang in there!
Kathy

Kayde
11-30-2011, 09:00 AM
I have the topper and it is wonderful. Wouldnt have made it without it. In fact, I have 2 friends and my step dad that liked it so well they all bought one. I have tried use the pillow between my legs but that lasts about 10 minutes and as soon as I fall asleep i kick it out. I do think mentally you tend to think you can do better or have a faster recovery etc especially if u were active before and sort of beat the odds of surgery for longer than most because you didn't have the pain as early as dr's told you and you hear what they say but your head says well yeah but I do well with this so I should be able to feel better sooner. When you don't it is a let down you created but still feels nasty all the same. You just can't guess how you will feel until you have the surgery and how you did before or how great of shape you were in doesn't always kick in like you think. I like the percentage thing. I guess I need to make a graph so I can see the visual. :). In my head I thought I would be back at my job telecommuting by this week......right. I can't even sit up and stay awake 8 hours at a time. Lol. I made notes starting the first day I came home( I like checklists) and I pu first day climbed 1 stair in so much pain I fell and had to crawl up. Day 3 climbed 4 stairs, day 1 right leg numb, butt numb, knee pain. Day 4 leg numb gone, half butt numb, knee pain gone and 9 stairs. Now it's more like awake 5 hours all at one time, sat on couch 2 hours, watched an entire movie without sleeping. No pills today not even Tylenol. Forgot to take vitamins lol. It helps me to look back cuz I'm so over this already it's hard to see improvements.

Marina63
11-30-2011, 10:28 AM
I kept a log of my progress from week to week as well. It was very encouraging to look back and see how far I had come despite feeling I hadn't been doing so well. I still update but am up to monthly instead of weekly. I made huge strides in my recovery those first 6-8 weeks. Now it is going slower but continues to improve.

djkinkead
11-30-2011, 07:17 PM
I started teleworking one to two hours a day starting around 2 months. Just enough to answer the most pressing emails. Yep, I slept a lot of the day, but it made me feel like I was doing something productive.

Will start the percentage of accomplished time towards six months and then a year. Maybe that will help with the mental blues.

Glad to hear others can feel their hardware too. I get nervous when I am trying to turn in bed or starting to do some normal "life" things that I might screw up my back.

Meet with the surgeon in 1.5 weeks. He runs marathons and I am sure he thinks I am a total wimp.

progress
12-03-2011, 02:23 AM
Hi everyone, Been Xmas shopping all afternoon, or more like walked around aimlessly, I am quite sore on my right side and it is worse if I have been bending. My right soft tissue has always been the problem but I feel like it has got worse. My thoracolumbar curve curved to the left so my R hip stuck out and I lost my L hip. My right concave side has been filled and this is where the discomfort is. It can feel like a severe stitch. Also it goes down to the lower R centre of my back which is the only part still numb now. The numbness is decreasing and I wonder if that is why it is more sore. Also the R lower centre of my back has developed horrible dry patches but lucky they are not itchy. Does anyone know what has been done to the muscles on this side?, I'm surprised the L side feels perfect. I had bone taken from my R iliac crest through the same incision but the pain feels muscular and continues higher up into my mid back. I'm impatient now and expected this tight sore feeling to be better at this point. It is fine when I wake up but gets worse throughout the day. Unfortunately my mother is a hypochondriac so now that it's been nearly 4 months I don't get much sympathy or concessions even though I barely complain. Just want to be back to normal. I have a good feeling about my spine itself but wonder what I should be doing at this point. Does anyone know recommended stretches?
On a good note my energy level is now pretty good.
Kelly

Susie*Bee
12-03-2011, 03:02 PM
Dear DJ-- I don't get on here as often... but I want you to know I think it's very common to have those ups and downs as you recover. I certainly did. I'd make slow progress and think I was doing ok, and then all of a sudden think "what is going on?-- this is taking forever! Will I ever get back to having anything like a "normal life?" At times like those, my greatest help was prayer and also looking back at pictures (I was keeping a scrapbook) and seeing the progress I had made so far. It's kind of like someone who loses weight. It's not really something that someone notices very much who sees the person every day, but it is to someone who hasn't seen the person in a long time. You've come a long way in what you can do from when you were in the hospital. It will keep getting better and better. Some of us take longer than others, but unless you have a problem, it WILL get better with time. I am now at 4 1/2 years post op and still continue to improve all the time, although I was doing pretty good quite awhile ago. It's just that the healing continues, the strength returns, the abilities grow... I would say I was at least at 90% at year 2, but I still have some challenges. You can't change the fact that you are fused. I don't remember how long your fusion is. I can't do everything I could do "once upon a time"-- but I couldn't do them anymore anyway, when my scoli had progressed. Take heart and work at it. Remember, you'd be going downhill the other way if you hadn't had the surgery. It's a chunk of time out of your life-- but you'll be glad you went ahead and got it over and done with and now the healing has begun. You'll be running around soon. Just be patient, do your walking, and you will heal.

You have quite THE STORY to tell, with an earthquake during your surgery! Wow! Take care!

Confusedmom
12-04-2011, 12:18 AM
Thanks everyone who has posted on this thread. Good preparation for those of us awaiting surgery. I think it will help to expect the "blues." At least I will know that they are normal.

Thanks,
Evelyn

rohrer01
12-04-2011, 06:35 AM
Hi there,

I can totally relate to everything you described when I was around 4 months post-op! I returned to work at 14 weeks due to increasing feelings of isolation, boredom and feeling blue (not to mention strong financial pressures). I should have waited another 2-3 weeks before going back, as it did set me back in terms of pain and progress. Unrelated to work though, I remember clearly about 4 months post op I still had a very significant amount of "aches and pains", and I remember being very discouraged thinking that was the final outcome of the surgery. My wise friend told me that I should expect that I wouldn't feel great until about 6-7 months later. At the time I was very distressed by this, and thought how much it all really sucked, but he was right. I actually felt much better at the 6.5 month mark, but even now, at 13 months post-op, I feel I am continuing to improve a lot.

I think one part of the blues at this period have to do with what a huge surgery it is. For the first 6-8 weeks one is in survival mode, living in the moment for pain meds, position changes, bathroom problems, trying to eat, etc. After 2 months of this, and some significant improvements, one is ready to move on back to the former life (not that of an invalid). However the body is just not ready yet, nor is it even at 4 months, although the mind wants to be! I think at this point it is normal to experience sort of a post-traumatic letdown period, as if your mind is saying "OMG that was terrible what I just went through" and now that the survival mode is through, you experience a bit of a mental slump. I know I did at that period.

You are still early in recovery and you have a huge amount of improvement to look forward to. You must be patient (which is certainly not easy for me!!). But you will get better. Keep active, take your pain meds if they help (that is nothing to worry about - 1/3 of a vicodin). Try to remind yourself that you still need good rest, good nutrition, and regular activity. Try not to dwell on what you think you can't do, because most likely, you will be able to return to it, or you will find other ways to do certain things.

I found that I was totally unprepared for the mental aspects of this recovery and the mental aspects of getting a large amount of hardware placed into my back. It caught me off guard, and I don't see a lot of discussion about that here. There is a huge mental/emotional component to recovering from this type of surgery. I bet if you write down some of your feelings and experiences now, and go back and look at them in 4 months, you will be amazed at how much better you are doing then.

Please feel fee to PM me if you want to talk further. I truly know how you feel, I was there too. Hang in there, it WILL get better, I promise.

These words are truly an inspiration for those of us who have not had surgery and those freshly on the other side. If I end up having surgery, I think I will print this out and hang it on my wall! Thank you so much! BTW, my curve is about what yours is. I found out yesterday when I looked at my cd and read the report that I am still progressing. It is a little disheartening. Family doesn't understand, but you folks on here do.

leahdragonfly
12-04-2011, 10:34 AM
I am glad my feelings and experiences can help others! It is difficult because most of us do not know anyone personally who has gone through this surgery. Many people do not understand why we need to go through such a serious surgery, nor do they really understand how serious it is.

My own mother is pretty mental about my back. She knows I was extremely unhappy being braced, but she feels defensive or criticized that I still have negative feelings about being braced, even though I have never expressed blame or criticism toward her. She told me she was surprised I even remember wearing a brace!!--duh, I was in jr high, OF COURSE I remember! My doctor recommended surgery for three years but she refused to consider it. When I was 17 and was tired of extreme back and leg pain I made an appt to talk about surgery and informed my mother of this. She has an unnatural fear of surgery for some reason. When I developed increasing back pain several years ago she was very unsympathetic and unsupportive. She refused to accept that I needed such a huge surgery last year, and refused to believe that my teenage surgery hadn't healed properly. She is not a bad person and we are close otherwise, but she is just very unbalanced on the topic of my back.

There are plenty of us here who understand, so it may be best for you to minimize discussion of your back problems with people who are unsupportive.

Confusedmom
12-04-2011, 09:16 PM
As I am approaching my surgery, I've been talking to my friends more about it. I find myself refering to things I've read on the Forum a lot. And of course all my friends look at me like I'm totally losing it. Not only am I about to have this huge surgery, but I'm relying on information/experiences of people I've "met" on the Internet for information. When I hear myself talking to them, I understand why they look at me like that.

But truly, where else are we supposed to go for support? I have met two lovely ladies locally through this Forum who have had the surgery. Otherwise I would have no "real life" contacts who have dealt with this. Plus just the expertise of people like Linda is invaluable.

So, adding my thanks to the Forum, and all of you who post your true feelings -- good and bad. Thank you!

Evelyn