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WLB1
12-03-2013, 01:47 PM
Hi,

I am five months post op from a long fusion, l6 to s2. I am still in pain and weak, but I am getting better. I have the impression that everyone thinks I should be well and over it already. I will never be over it, but why I will never be over it can't be explained. It has to be lived. I know that given time I will become adjusted to it, be used to it, but I am not there yet. So when do you get to the point that your feelings aren't hurt when you know you are being "tuned out" when you mention it? And how do you go about not needing to mention it? I know I could walk away, but I'd just run into him again at bedtime when we go to bed. We have been married 42 years and he's really been a great nurse. I don't really want to make an issue of this, that won't make it better. Or maybe I am just being to sensitive to what I perceive to be others feelings?

Susie*Bee
12-03-2013, 04:57 PM
WLB1-- what you went through having your surgery was a life altering affair. You are so correct in saying you will not get over it, but believe me and many of the others who have years, rather than months, behind their surgeries. You will adjust and do things differently, but that doesn't mean it will be bad. We change and it's almost like Robert Frost's "fork in the road" bit-- we took the path that would halt the progression and hopefully get some correction to our crooked backs. The other path would have resulted in more severe scoliosis for most of us. The path of healing from surgery is not an easy one to walk down for many of us. I lead a perfectly normal life now and no one would look at me and think anything is wrong. It's actually not "wrong" -- it's different. I have limitations, but I am used to them (in general) and am very happy with my outcome. And yet yesterday after doing a lot of things, there was a little flare up with pain, even after 6 1/2 years. Time to back off and cut out some activities for a little bit. I am able to do so much more after these years of recovery than I ever thought possible at your stage of the game. I remember what MY 5 months was like, and it was difficult. You are still pretty "young" in the recovery aspect. If you can't talk about it to the people around you, you can always come on here and talk. That is one of the reasons why we are together. We make a community of brothers and sisters who have experienced (and are still experiencing) something no one else can relate to.

There are just times when you wonder if you'll ever get beyond the point you're at-- and you will. It just takes time-- more time for some than for others-- and if you want to vent and let out your frustrations, please do so here. We are the ones who will understand because we've been there also.

I remember so well when many of my friends asked "what went wrong?" because I was still walking like an old lady and didn't have any oomph. And that would have been somewhere between 5-8 months or so. You are probably doing just fine and your support people will need to understand. Best wishes in your continued healing. Think about how far you've come already! Take care-- Susie

WLB1
12-03-2013, 06:47 PM
Thanks, Susie, for your comments! It is so good to be able to vent! And to be understood and validated. I had ankle reconstruction and revision of an earlier botched surgery ten years ago, and it still hurts at times.
Yes, I have come a long way towards my new normal, whatever and whenever that might be. I even have whole days when I do well and have energy. Looking down my new path I can sometimes see a light at the end!

jrnyc
12-03-2013, 09:36 PM
i think there are alot of conditions and a lot of surgeries that
people cannot understand without having lived thru it...
and even when it is life altering...it can actually be boring to
someone far removed from it...
that is true of all kinds of things....
having Lyme disease changed my life...for a long time..
but no one who hadn't experienced Lyme personally...themselves
or a loved one....was interested...it actually scared people who
lived in Lyme endemic areas to hear about it...
so i am not surprised that there are people who might look
like their eyes are glazing over when you talk about your scoli
surgery to them....

please try to understand...from their point of view...
if it doesn't directly impact their life, and unless they are close
to you (and even then sometimes) they are not trying to be mean...
they don't get it...

jess...and Sparky

WLB1
12-03-2013, 09:44 PM
Eyes glazed over...I know that look! And you are right. Nothing good comes from picking fights over hurt feelings. Goodness, I just survived the most catastrophic surgery there is...surely a glazed over eye or two is no biggie. From now on, I think I will start my needed conversations about my back issues with, I am sorry to still be talking about thus but I need to talk about it. Maybe I will wear my sunglasses so I don't notice the glaze that much.

moonglow
12-05-2013, 12:26 AM
I just wanted to say how sorry I am that your husband is not (or is unable to) give you the emotional support that you so rightly need and deserve during this time. That must hurt. Scoliosis surgery is so extreme that unless someone has been through it, I don't think they can ever grasp how huge of a thing it is. This includes the surgeons. Also, there are all those people who have had maybe one or two vertebrae operated on for slipped discs and this is their understanding of spinal surgery. For them their surgery is the most painful thing they have ever gone through and I understand this...and yet, I would give my eyetooth to have their surgery instead of mine. So I avoid talking with those people in detail. If someone asks me do I have a herniated disc, I say, "No, I have a spinal deformity" or "spinal disease," and this alerts them to the seriousness of it and helps me feel more validated. And it helps them to understand why I didn't recover as fast. I think Scoliosis surgery is like pet loss grief - if you say to someone who has never loved a dog that you are mourning the loss of your beloved dog, they will not understand and may belittle it, which in turn devastates me. So it's important to go to the appropriate places and people for support. This is a great site for that support. I hope you feel better soon.

WLB1
12-05-2013, 03:14 PM
Thanks, Moonglow.

Spinal disease...that is what it is. That is why so many of us wind up with revisions. The spine continues deteriorating as we age.

I know about grieving for a dog as well. I had to put down my little seventeen rear old dog two years ago. Still makes me cry to think of her. I got a new puppy the next day, but not to replace my little buddy. You can't replace them. I just needed a dog. Now I have two schnoodles. More than anything they have helped me endure these last months. They cuddle beside me where ever I am and lift my spirits if not my pain.

golfnut
12-05-2013, 07:28 PM
WLB1-I think we all have the need to talk about daily issues and aches and pains with someone during the first year. I had several friends from this forum that I actually started corresponding with on a daily basis via email. They were a few months ahead of me with their surgeries and were so helpful and encouraging to me. The recovery was difficult, although I think I had it better than many on this forum. That being said, I still would like to burn the pajamas and jogging suits that I wore during that period. Now, if someone mentions my surgery or has any questions, my face lights up with delight because I am so happy with my results and feel so great. It is still really early in your recovery and you should expect to have a slow and steady improvement for many more months. Although I felt better than I expected at 2 years, I have continued to feel fewer aches after my 2 year anniversary. BTW, I just had to have my 16 year old schnauzer put down 11 days ago. She was such a sweet dog and was instrumental in my recovery. It helps to vent, so take advantage of this forum. We are listening and understand!

WLB1
12-05-2013, 09:17 PM
Oh, Karen,

I am so sorry about your schnauzer! They are such precious little dogs. My two schnoodles, half schnauzer and half poodle, are amazing company for me. They don't just lie around, they bring me toys and beg til I play with them, it's like they understand everything I say. You have my sincere sympathy in your grief for your sweet companion.

Yes, I am so grateful for this forum of support and hope. Even though the last six months have been a true living nightmare, I had no choice but to have the surgery. And now though my thoracic area is really painful, my lumbar area is great. The best word I have to describe it is comfortable, like someone is following along behind me holding up my back. I am glad I had the surgery, glad I can look forward to better things.

Thanks so much,

Wendy

Irina
12-06-2013, 12:01 AM
Hi Wendy,

I wanted to talk about my surgery too in the early months and even my own mom told me several times: "Enough already talking about it". I was lucky that my husband was always willing to listen, but go ahead and share your thoughts here. We all understand.

I am nine months out today and don't have a need to talk about it much anymore because first, I feel good and second, I am back to a very stressful and demanding job. It's a new job, 36 miles away from home, bad traffic and I work 10 hours days. Quarter and year end are coming, and pretty soon I'll be working weekends too. Knock on the wood, I handle it well physically, but my head is SPINNING! Guess what I want to talk and b...ch about when I come home - work. My poor husband has to listen to this song now :-)

I am saying it because it does gets better. Some people just need more time. Hang in here, vent all you want and we'll listen.

susancook
12-06-2013, 01:37 AM
WLB1: I have been thinking a lot about your initial comments. I am about 9 months postop now and was thinking about my sharing of the story about my scoliosis, degeneration,pain, and surgery. For the first 6 months after surgery, spinal fusion surgery defined me. I thought that I was probably running for poster child! Almost everyone that I met, even on airplanes or friends were subjected to seeing my pictures of my before and after back with and then without hardware. Comments ranged from"cool" to "that's gross". Almost everyone said, "wow, I bet that hurt a lot!" For the last month or so, I have shared much less. Why?? I am not sure, but I think that I am getting on with my life and find that I am more than just a woman with a spinal fusion. If someone asked me about my surgery, I will gladly share the information with pictures and even will show many people my back....I am not bashful. But, my surgery is less my defining moment. It is me and will always be me and yes, I still have some pain and continue to have physical therapy, but I am more than spinal surgery and a scoliosis survivor. Sometimes I do need a little bit of sympathy and am a little bit down about not making all of the progress that I want FAST enough, and I seek support from my family or very close friends. I sometimes specifically ask for support, and they know when I need it. If I really wanted targeted support from somebody that has been there, I would call Irina or Gayle. Like you said, unless you have been there, you don't really understand what it is like. Having said that, we are all so different in our experience with scoliosis, our pain, postop experiences, etc. No two of us are alike.

I have babbled enough and hope that some of this resounds with you and helps you feel better. Being in pain, no matter why is surely exhausting and it must be difficult to feel that you are not understood. Please continue to post here and look for support here. Let us know how you feel and we will listen, or at least I can say that I will listen. Sometimes when people post that they have been in pain for so very long postop, I feel guilty having had such a relatively pain free postop recovery. Most of the time, I have very little pain and my pain is gradually decreasing. I figure that I am on the two year plan for recovery and I am trying to be patient.

Here is wishing you a better year next year. I am sending you my good wishes. Susan

leahdragonfly
12-06-2013, 08:14 AM
Hi,

I am finding this a fascinating thread. As many know here I have been through my original surgery in 2010, then broken rods 15 months later followed by a huge revision in Feb 2012. As I approach the 2 year mark of the revision, I still think about the surgery and recovery a lot at times. I do think about my back every day. I have wondered what I can do to stop thinking about it every day. I have wondered the very same thing as WLB--how long does one think about it? I realized long ago, like you, that people who are not on this forum don't really want to hear about it. I think even those who are close to me and empathic thought I should really stop whining about it after 8 weeks. For me, the experience changed me, and I am not sure I will ever stop thinking about it.

My mom, who never supported me having this surgery and is an utter whacko about my back, never came to see me in the hospital either time. Apparently she feels blamed and hurt because I told her I hated wearing my brace as a teenager. My husband clearly remembers her saying to me at 5 WEEKS POST-OP!!!!!!, "Oh honey, is your back still bothering you?" It was all my husband could do to walk away from that one. My Dad got on her by saying "She had her entire back filleted Mom, of course it still hurts her." Bless his heart.

Suffering broken rods (which happened at work, so it became a very public event unfortunately) and the subsequent revision was infinitely more traumatic than the original surgery. As I approach my 2-year appointment and x-rays, I am experiencing some of "that dreaded x-ray feeling" as I worry that a hardware compromise could be found. What would I do if I needed another revision? I can't even hardly stand the thought. I know this is not entirely rational, but it is where I am right now. I am not consumed by this worry, but I do have it it the back of my mind. Going through a huge, unexpected revision on one week's notice was really traumatic and difficult.

I have definitely found, like you, that people don't want to talk about it. I would see their eyes glaze over and shift away if I wanted to talk about it. And I am really a private person who does not like to be in the spotlight or talk about themselves constantly. That's why this forum is great. We have all needed to talk, and when we do, our forum friends are always here.

I think that most surgeons do not mention the mental aspect of this recovery to their patients. I am a tough person, but I was completely floored by the difficulty and length of this recovery. It would be helpful if surgeons gave some sort of heads up to pts about the mental health aspects of this recovery.

I am so sorry to hear of your situation, but happy that you are going to get the help you need. We never tire of talking about scoliosis and surgical recovery, so you can vent here all you want. We are always here for each other.

WLB1
12-06-2013, 11:37 AM
Thanks everyone. I am feeling better about the whole thing. I know I must sound like a broken record to my husband. He really is a great guy. He works full time and for the last 16 years has been an unpaid Bishop or Minister, another full time job, for our Church. We are LDS. He actually does counseling with the members when they need it, but our relationship is that of husband and wife, not Bishop to church member. That makes things different. After reading all your experiences, I am better able to cut him some slack. I will be more understanding and grateful to him. He waited on me hand and foot for the first three months following my surgery. I don't know what I would have done without him.

May I express my gratitude to all the members of this forum. You have helped me deal with what in my life has been my worst experience ever. Thank you.

Wendy

WLB1
12-06-2013, 08:32 PM
Hi again,

I misjudged my husband. We had a really good conversation this evening, at his instigation, about my future difficulties with what will be a lifetime disability, considering that there will always be a need for me to be mindful of some limitations. I mentioned some near future goals I had for myself, and he commented that I wasn't physically ready for that yet. Then he said what everyone says on the forum, that one day I will surprise myself with how far I'd come, but that day is not tomorrow. He said that my progress was so slow that I might notice it, but that he did.

I think my feeling that I sounded like a broken record was my intuition telling me that is time to start moving on with life. I am an artist, but I have not darkened the door of my studio since I finished my last commission three days before my surgery. I spent some time in the studio this afternoon, taking stock of things to do, getting two new pieces ready to go to the gallery, looking at my website. Time to focus on other things now.

Thanks, everyone!

Wendy

debbei
12-06-2013, 09:59 PM
It took me a good few years to get over it. What Susie said is right, you can't come out of this the same as when you went in. Now that I'm thinking about it, I think it was MORE than a few years for me. I'm 5 years post op now, and I do feel totally over it; I don't know if I could have said that 2 years ago. Give yourself time. Along with the physical recovery, you have to give yourself time to MENTALLY recover as well.

debbei
12-06-2013, 10:01 PM
Awh, what sweet comments from your husband. It's easier for others to notice our small improvements in the beginning that we do ourselves. Give yourself time; 5 months is just the start of your recovery!!

WLB1
12-06-2013, 10:33 PM
Hi, Debbe,

I think it may well be harder to mentally recover than to physically recover. Your body does its thing without much input from your conscious mind, that's the autonomic system at work, like a computer's operating system it is automatic. The subconscious mind now, that you do have a little more control of, even though it takes forever to make it do what you want. That's the system that takes care of your routine tasks, like driving. If you ever wind up at the store you shop in most of the time, instead of the store you wanted to go to that you rarely go to, blame Mr. Subconscious. That's the system that when all is said and done takes over the job of dealing with the scoli surgery when you have dealt with each issue you must deal with as a survivor of scoliosis surgery enough times that your responses become automatic. Turning with the whole spine, for instance, instead of just part of it, to reach a light switch. How many times must that maneuver be done before it is a habit? When you are still in pain you are unable to switch on to automatic, or you may have a compensatory for the pain movement become automatic that would be detrimental to your long term health, like a limp favoring a low back caused pain that wears out a hip or a knee. I would imagine that is why some of us like me benefit from physical therapy to see to it that we recover properly, without putting something else at risk. Looking at it in that light, I'd say you are right that five years to truly mentally process this surgery is more like what I am going to be dealing with.

Thanks so much, Debbe, for you post, because you got me to analyze the problem I am faced with using what little I know about brain function. I taught myself something in the process!

Wendy

susancook
12-07-2013, 01:05 AM
Great stuff here and honest too! Take home messages for me: there is not just one way to do the healing and all of us are different, we need to be honest with the loved ones around us when we need some support and have unshared feelings, pain is a mediator of the experience, talking about it may help some of us to get to a new place.

Gayle's experience makes me very afraid. I cannot imagine how awful that must have been to break a rod and go through the surgery again. I think about my surgery MANY times a day and I imagine that I will think about it every day for the rest of my life. If I did not at least acknowledge the surgery....I'm not talking about dwelling on it, then I am denying a very big part of myself. Yes, in some ways, I have moved on, but everytime that I look in the mirror and see that huge scar [which I am very proud of and think is beautiful, by the way], there is a part of me that says, "Susan, can you believe that you had that huge surgery?" My incisional hernia is a constant reminder of my surgery. It is ugly and I think that people look at me and wonder why I look pregnant. If I do need a spine surgery revision....who knows how that would set me back.

Watching Wendy seemingly move so quickly during her writing to better communications with her husband and renewed interest in her art brought tears to my eyes...as did Gayle's honesty about her feelings about her second surgery and all of the uncertainty that it brings with it. Recovery from surgery is not for the weak. We do not give ourselves enough credit for surviving this whole process. And who are our role models for recovery? If we could all get together for an hour most days and reassure each other in person and share experiences, this whole ordeal would be SO much easier! I am on the forum a few days a week for an hour or so and the rest of the time, I negotiate life by myself. Sometimes it's lonely.

Thanks everyone for sharing your feelings and being so honest as you have helped me so much! I doubt myself and my recovery and worry about my lower spine and cervical pain and wonder about what that will mean in the future. When I told Dr. Hu about my neck, she said, "Oh, I could fix that too if you want" and I wanted to run out of there as fast as I could and hide. The thought of more surgery is so scary.

Susan

rockycarm
12-11-2013, 08:27 PM
WLB1-I think we all have the need to talk about daily issues and aches and pains with someone during the first year. I had several friends from this forum that I actually started corresponding with on a daily basis via email. They were a few months ahead of me with their surgeries and were so helpful and encouraging to me. The recovery was difficult, although I think I had it better than many on this forum. That being said, I still would like to burn the pajamas and jogging suits that I wore during that period. Now, if someone mentions my surgery or has any questions, my face lights up with delight because I am so happy with my results and feel so great. It is still really early in your recovery and you should expect to have a slow and steady improvement for many more months. Although I felt better than I expected at 2 years, I have continued to feel fewer aches after my 2 year anniversary. BTW, I just had to have my 16 year old schnauzer put down 11 days ago. She was such a sweet dog and was instrumental in my recovery. It helps to vent, so take advantage of this forum. We are listening and understand!

Karen,
First let me say how sorry I am for the loss of your 16-year-old schnauzer. I have put down 2 dogs 14 years and 12 years and both were my babies. Unfortunately I did not have either in my recovery but can see how they would have been instrumental. It's kind of funny, I have a cat who grew up with my last one Rocky who thinks he is a dog. When I was laid up and on the couch during my recovery he would lay down on the floor right by my side :) I also want to say to all those recovering.....staying positive is also instrumental. Remember....you needed to do this and you will only get better each day. 19 months post op and feeling good with the grace of God! Best to you all!

rockycarm
12-11-2013, 08:36 PM
Hi,

I am finding this a fascinating thread. As many know here I have been through my original surgery in 2010, then broken rods 15 months later followed by a huge revision in Feb 2012. As I approach the 2 year mark of the revision, I still think about the surgery and recovery a lot at times. I do think about my back every day. I have wondered what I can do to stop thinking about it every day. I have wondered the very same thing as WLB--how long does one think about it? I realized long ago, like you, that people who are not on this forum don't really want to hear about it. I think even those who are close to me and empathic thought I should really stop whining about it after 8 weeks. For me, the experience changed me, and I am not sure I will ever stop thinking about it.

My mom, who never supported me having this surgery and is an utter whacko about my back, never came to see me in the hospital either time. Apparently she feels blamed and hurt because I told her I hated wearing my brace as a teenager. My husband clearly remembers her saying to me at 5 WEEKS POST-OP!!!!!!, "Oh honey, is your back still bothering you?" It was all my husband could do to walk away from that one. My Dad got on her by saying "She had her entire back filleted Mom, of course it still hurts her." Bless his heart.

Suffering broken rods (which happened at work, so it became a very public event unfortunately) and the subsequent revision was infinitely more traumatic than the original surgery. As I approach my 2-year appointment and x-rays, I am experiencing some of "that dreaded x-ray feeling" as I worry that a hardware compromise could be found. What would I do if I needed another revision? I can't even hardly stand the thought. I know this is not entirely rational, but it is where I am right now. I am not consumed by this worry, but I do have it it the back of my mind. Going through a huge, unexpected revision on one week's notice was really traumatic and difficult.

I have definitely found, like you, that people don't want to talk about it. I would see their eyes glaze over and shift away if I wanted to talk about it. And I am really a private person who does not like to be in the spotlight or talk about themselves constantly. That's why this forum is great. We have all needed to talk, and when we do, our forum friends are always here.

I think that most surgeons do not mention the mental aspect of this recovery to their patients. I am a tough person, but I was completely floored by the difficulty and length of this recovery. It would be helpful if surgeons gave some sort of heads up to pts about the mental health aspects of this recovery.

I am so sorry to hear of your situation, but happy that you are going to get the help you need. We never tire of talking about scoliosis and surgical recovery, so you can vent here all you want. We are always here for each other.

Gayle, question -- I am 19 months post-op and sorry to hear of your having to have a revision. Please educate me. I was under the impression from my PT that once we were fused we really don't need the rods anymore. Is that true? Did they just remove the hardware? If not, what had to be done?

Wish2bstraight
12-14-2013, 08:23 AM
I just saw my scoliosis surgeon,I am ten months postoperative. He told me that if the hardware gets too heavy in my back, I could have it removed down the road. He was not specific on any timeframe, but it really does not matter to me, because my stay in the hospital was not the originally planned four to six days, but eleven. Although nobody will talk about it, I believe I was in seriously critical condition. I think my husband does not want to relive the experience. So as many have said, be your eon advocate, I ordered all the reports from the hospital. Yup, I was in critical condition. Anyway, that is not why I started this post.

When I was not happy with my progress, I would look back and see how far I have come. Doing that and talking to my friends who are supportive is the way I get through the doubts about my progress. My husband did not want me to have the surgery, but was supportive when I decided to do it. He was great during my recovery. I always say that I should rent him out to the disabled.

The only major problem I am having now is standing. Due to fused vertebrae prior to surgery, which we did not know about, the doctor was not able to give me the lordosis and kyphosis that ordinary people have. My back is very straight. Of course there is another surgery for that also. Yup, nope. I will deal with it, unless I have no choice.

I don't get to post often, so I am taking this opportunity to wish everyone on the forum happy holidays and a healthy and happy new year.

Libby