7 months post-op

[suzyjay]

Chris
I know how you feel I am the main support of my family. I was fused from T4 to L4; I was 44 yr old when I had the surgery. I went back to work full time at 5 months post op. I was up at 5:00 am to get ready for work and commute to New York and back and home by 5:30-6:00 pm. ( an hour commute )and had a staph infection on my spine and on the hardware, (and still have it). I would have returned to work at 4 months maybe even sooner but that was when the doctor discovered my infection and the pain was very bad so I couldn’t do much of anything. Returning to work I was very weak for the first two weeks and thought I am not going to make it; I was so tired, probably because I was still on pain meds and an antibiotic for the infection. Also so for a month I had an IV line in my arm every night I had to give may IV antibiotic for the staph infection. Traveling to work and working all day with the tubing coming out my arm (trying to cover it up so people would stop asking what that thing was). My surgery will be 1 yr on Feb 7 and I feel good and workout 5 days week and have been for about 2 months. I will have to go back in for surgery to remove the rods because that is the only way to get rid of this terrible staph infection (that I got the hospital – NYU Medical Center). If I could do it, anyone without major complications, can do it. Good Luck.
Sue

[Susie*Bee]

Chris WBS--I too, like Singer, could tough it out if ABSOLUTELY necessary. I would just have some limits and be exhausted--but I dealt with that before surgery, too. My job at school is (in my mind) fairly physically demanding--definitely not a desk-type job. Since we decided I wouldn't go back yet, we're just cutting back some on extras--plus my pay at the school wasn't that great. And I know what I would need to do, if on my own, at the grocery store and places like that. I would have my reacher with me, would ask for help if needed, and would bag everything up in small quantities so the bags would be manageable. I could probably stop at the service desk and ask is they had someone who could help me out with my bags... (but really, the bags better be light enough for me to carry into the house!) Small amounts at a store would be ok. Since we live so far, we do two weeks' worth of shopping at a time, so there's a lot to deal with. I think I was just taking a break from trying to be "up" and was wallowing in a little self-pity when I wrote my post this morning--because I DO wonder how long it will take (and yes, if EVER, Singer) to get back to normal. Again, I know "normal" for most people will never be my "normal"-- but to the point where I can get along and feel good about most things. Chris--I am off of all narcotics/pain meds, and was off almost all by 5 or 6 months. I just continued with 1 darvocet at bedtime--kind of like taking a teddy bear to bed as a kid--it was my security pill that I'd sleep through the night ok... I hardly ever have to take anything else--mostly just for an occasional headache. I never did take much for my scoliosis aching, so never got in the habit of getting rid of what I consider livable pain. I understand some of you must experience much more pain than I do/have. When I say I'm aching, it's not the end of the world type pain--just uncomfortable.

I am thankful my husband is so supportive and helpful. It would be a lot different to be on my own! I wouldn't want to sugar-coat any of this, but I think it would be do-able for you, Chris, barring any complications. And, as Singer mentioned, it would have just gotten worse and worse without the surgery. My husband was doing the grocery handling then also, for the most part. It was really bothering my back to put the heavy items on the conveyor belt, etc., back then. (Although I could pick up dropped cans rather than kick them to the side back then!)

[trulyaries]

Susie*Bee - your first post this morning brought me to tears, feeling sorry for myself also. I could relate to so much of what you were saying. It's so great to be able to use this forum to share, vent, whine, and yes, laugh a lot, especially lately with some of the posts. But the reality of our lives still has to be dealt with and some of those simple things like grocery shopping that we used to take for granted become such insurmountable tasks at times. I find daily living especially hard to deal with because I live alone. My family/friends always say to call them if I need something done - well, you all know that realistically I would be calling them like 10-20 times a day - take the trash out - clean up the mess when I drop and break something messy - bring the groceries in - put the groceries away - empty the dishwasher - etc. etc. etc. Fortunately, I have always had an independent and creative spirit, so I can usually come up with a novel way to get things done. For instance, I found that telling baggers to not make the packages too heavy doesn't work very well because they are usually teen guys who don't understand the concept, so I have them help me load my car at the store. Then I carry extra bags in my car so I can lighten all the loads before I carry them in the house.

Chris WBS -please don't get too discouraged. After my first surgery (T4-L4) I was working part-time at home at 3 months, then back to work by 4 months. It took awhile after that to get over the fatigue, but I was able to work just fine and was not on any drugs that doped me up by that time. I had about five good years before my back started acting up again. My situation (a 4th surgery scheduled next month) is not unheard of, but certainly not inevitable for everyone.

Only we on this forum can understand the deep feelings and daily difficulties expressed in this thread. Anyway, now that I've had my cry for the day - back to the fray!

[Susie*Bee]

Thanks!

trulyaries--Thanks a bunch for being so understanding and kind about my little meltdown, but I am so sorry it made you cry. I always want to be an encourager--and today I was a discourager... My apologies to everyone! All of you are terrific!

[JanL]

To add another perspective, I am 6 weeks post op - turned 55 four weeks after surgery. I have been off the heavy meds - oxycotin since 3 weeks and now I am off the Norvo (1/2 Narcotic, 1/2 tylenol). I don't really have pain but have stiffness and the Norco didn't seem to change that so I figured I'd rather get off it so I could start doing more. I sleep better now. I drive a few miles to the grocery, drugstore. I've been out to lunch with friends. I do get tired after an outing but I feel the only way to build my stamina is to do a little each day. My husband has been very helpful though it is frustrating to ask for so much and to be on someone else's time frame. I will have to return to work at 12 weeks to keep my job and I need benefiits now more than ever. I am a dietitian in a hospital so it is not a physical job. I visit patinets, chart on the computer, attend meetings, etc. At least I can alternate sitting and walking. The commute is 45 mins each way so the drive will be the worse part.

So all and all I am doing well. I was thinking about PM Karen Ocker as she has 5 yrs behind her to ask will I eventually be able to bend at the hips and pick things up off the floor? will I be able to sit with my feet tucked under me again?, will I be able to sit propped up in bed rather than flat? Hopefully this will all come but we need to be patient

[lelc2002@yahoo]

Hi JanL-I am 48 now(operations were aug 2006) & I can bend at the hips now. I try to bend mostly at the knees but sometimes forget. I am now mostly back to my before surgery energy level. I still get a bit achey by early evening & need to lie on my bed but as my 83 yr old mom says, I NEVER sit. I'm always doing something!! You'll get there gradually. Each month you'll be able to do more & feel better.
SusieBee & TrulyAries: We have a small group of scoli women now in our area & we have lunch & talk. My goal with the group as we possibly add people, is to have a support network where others can help those who may need a visit or call or a meal especially if they are alone.

[trulyaries]

SusieBee - You weren't a discourager. My tears were tears of recognition and empathy. Not to worry - I bounce back.
Lelc2002 - It might be tough for me to come to lunch - I'm in Michigan - but I will keep in mind the idea of phone buddies. Thank you so much for thinking of me.

[Susie*Bee]

Thanks, trulyaries! And ditto for me, Lynne--I'm too far away to come for lunch (NW Indiana), but that would be fun. And I don't know anyone around here to buddy up with. That's great that you have a local support group! I'm really ok on my own, (with my husband), for the most part--as long as there's this forum for support and encouragement and, yes, a little social life. I guess we can all get down every once in awhile...

JanL--I'm impressed that you are doing so awesome! What an encouragement! Best wishes when it's time to return to work! Also--I was released to bend "slightly" from the hip, whatever that means, at my 6 months check-up. So I do that quite often. Besides, I don't get what the difference is from bending at the hip or sitting--they are both at an angle of your hips to your legs. I wasn't fused to the sacrum though, just to L4, but am not supposed to bend from those lower lumbars. As far as bending over to pick something up from the floor, I'm under the impression that I won't ever be doing that, although I could be wrong. That is why I'm working so hard to be able to squat. Will I ever get there???? That's one of those things I ask myself almost daily... that carrot is always way beyond reach to this ol' donkey, but is getting a tiny closer. It's to the point where I feel I need to ask people (don't worry, not on the street--just ones I know fairly well, like my own kids) if they know how to squat or not, and if not, they'd better work on it in case they can't and need to at some point in time... Something I wish someone had said to me a long time ago, although I'm sure I wouldn't have paid any attention anyway.

[Wishing]

Coping with Pain

Many years ago I had the good fortune to read some books by Norman Cousins, Anatomy of an Illness, and The Healing Heart. He described how he coped with pain in dealing with a serious illness he had. I remember him saying that the mind is not wired to laugh and feel pain at the same time and focused on laughter as a way of coping with pain and healing. So, years ago when I was recovering from extensive thoracoplasty, I had stacked up on lots of funny videos such as Candid Camera, Johnny Carson videos, Funniest Home Videos, funny movies, etc. While I did need some pain medication, I had myself a good laugh and was able to divert my attention from pain. Hopefully, I can put this theory to the test again if I am fortunate to have corrective surgery later this year. T 91, L 68.

[crepehanger]

What a gift this forum is! You all mirror my own thoughts and struggles. I have days that I wonder if I will ever be normal, too. I hate to have to say this but CHRIS WBS has a very valid question about working and recovery from surgery. I am sure I would have been better mentally if I had not been so depressed about not being able to do my job. I am going to have to train for something else. I made 65% of the income in our household. We had to make some hellacious cuts to make it this far, but thank God, we're hanging in there. If our house had not been paid for, we would have been screwed, blued and tattooed. My heart goes out to each and every one of you as you work through your obstacles. On the other side of the coin, I have to admit, even with the uphill battles and the occasional crappy days, I am still glad I had the surgery. I so hope everyone else can honestly say the same, and CHRIS WBS, I hope you can reach the best decision for yourself, you're smart to think it through. I wish we were all close enough to take care of you, we could take turns!

[CHRIS WBS]

You’re so sweet, Lisa. When I get overly anxious about something that might happen, I remind myself that much of what we worry about never comes to realization. As an example, I was convinced I was going to lose my job and health coverage at a time when I need it the most. I had a wonderful boss who suffered a massive stroke 18 months ago and had to retire. I was so worried my job would be eliminated as I sat in limbo for six months wondering what plans executive management had in place. As it turned out, they hired a new general counsel who I now report to. My new boss is one of the kindest and most supportive people I have ever had to report to and I consider myself quite fortunate. Once again, my prayers were answered.

Chris

[Pips]

I have days too when I am discouraged and I am now nearly 2 years post op (will be updating my blog with a few thoughts on that in a few days).

Singer - you touched my heart with this:

On the OTHER hand -- (are you getting whiplash following this?) -- the reality is, I would have become increasingly disabled had I NOT had the surgery. A fused spine is not natural, and it is limiting. But so is severe scoliosis. The hardest part about this condition, for me, is ACCEPTING the fact that EITHER WAY, with or without a fused spine, my back will never be "normal."

Thank you for putting into words what I have felt so often. It's all about acceptance, though isn't it?

I have recently lost my best friend to cancer and I feel so lucky to have had the chance of a future (unlike her) - I do know though that I will be restricted (probably forever) and its nice to know that other people have similar feelings to me.

I am lucky in that I mostly have a very positive outlook on things and try and just get on with whatever life puts in my way - so, I may never be 'normal', but hey, who is?

[Gator]

Thank you everyone

I haven't posted to the forum in a long time-but had to say thanks for sharing. I am now 9 months post-op and have been really discouraged at times. I still have a good bit of pain at the end of the day...the "bearclaw" is very familiar. I am a wildlife rehabber and do have two young band tail pigeons home for care.This is a part of my life I refuse to give up. I had to move out of my space in the antique store last week because I simply can't do all the work anymore. When I need to do something I know will be strenuous I take half a pain pill in advance. We were showing our little French bulldog last weekend at the benched show in San Francisco-you are there from 8:30 until 5:30 each day. Whew!!!
I thank God for my wonderful husband each day..he is great at socks and at keeping me on track. He is a former ER doc and reminds me frequently that "recovery is not linear". It takes time and not each day gets better than the last. He believes that people in pain need to take pain medication and get on with life. I have stopped setting timetables for myself, the old "I should be able to do this by now" and comparing my progress to people 30 years younger with smaller fusions. But I have to tell you that this recent thread made me feel (once again!) that I have your company in this journey we all share. Good luck to us all!

[Theresa]

I can understand where you all are coming from!!! Some days I am so tired of being the "good little soldier". After my A/P surgery in 2004 I went back to work at 5 months. A year later after the second surgery I went back to work at 3 months. This last surgery last May I went back to work at 2 1/2 months. This one has really taken a toll on me. I take my meds daily and still have a pain level of about a 3 out of 5 scale. Just trying to get my body moving fast enough in the morning is a chore! I have not been sleeping well because now I'm having an issue with my hands and arms going numb and all the pins and needle feelings that go along with that. I go in Wednesday to have an upper extremity EMG done and then x-rays of my neck to see if anything is going on. I had an EMG done last year on my hands and it only showed mild carpal tunnel. My doctor is thinking that maybe something is pinched and hopefully we can take care of things with PT. I definetly feel better when I have a few days off (more than the weekend) and there isn't anything going on like Thanksgiving or Christmas, so I can just rest. But as soon as I go back to work, it starts all over again. I only have about 3 1/2 years left to go and I can do full retirement. I am walking nice and straight finally!!!!! I was exactly able to do Christmas shopping in and out of the stores carrying bags and everything!!!! Wasn't able to do that since the surgery in 2004. We can't get rid of the pain though. But I do know that my future is definitly alot brighter because of the surgery. I tease my husband and tell him as he ages he will be getting bent over and have to deal with some of the same issues. He is already asking me how do I handle it everyday. He crashed on his mountain bike last Sunday and hit the ground pretty hard. He has been aching all week! I told him he will get used to it!!!!!

[Kari]

I totally understand where you are coming from. I am 9 months post-op and the Doc says I am doing very well. However, I can only work part-time which is frustrating. When I get down, I make a list of all the things I can do now and then compare it to last months and all the months prior. I then realize that I am making steady progress! Yes, I am in many ways not like I was before my surgery and continue to have limits. But, I remind myself I have a new body now and I have to do things differently.

We have had 11 snow storms this winter and I have not been able to help or play with my three kids in the snow up until today. We got 20 inches of snow and I very carefully shoveled the front steps and made snowmen with my kids. I celebrated this huge milestone! It is the little steps that I make during the healing process that help me get through the days and weeks when I am so exhausted. I too, continue to struggle with over doing it and get fatique easily. I especially get mentally fatiqued, which causes me to be completly disfunctional and very frustrated! It takes time and the hardest thing about all of this is that from the outside all of us look great! No one really knows the emotional and physical struggles we go through, unless they have had the surgery. I know that when spring come, I will feel better!

Kari
age 40 - T3-L3