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Thread: Fifa's Surgery 11/10/14 with Dr. Buchowski

  1. #226
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    Fifa - my heart goes out to you. What you are going through is very difficult, but for the most part they are problems that many people have dealt with on here over the years. The depression is something that is more of a concern and something you should probably speak with the doctor about. If the nurse didn't seem to pick up on it enough to mention it to your surgeon, maybe you should talk to your PCP about it. It is probably caused by the medications, but depression, caused by anything, is a serious problem.

    Some suggestions, in case you are not already doing so: keep a diary of your daily meds. Check them off when you have taken them. That will help you remember to take your vitamins and calcium and not get mixed up on whether you took anything already or not. You can just list your AM and PM ones and the vitamins and calcium and the date... and voila! Keep track of everything-- your stool softener, milk of magnesia, etc. Then you have that as a reference if needed.

    It is good that you are doing well pain-wise. Hooray! As for having been a bit more energetic before, nothing can undo that, so just move on. You have your new mindset, you know now about not bending and twisting. Don't "take to your bed"... The best thing for you is to walk and have a normal life. Being active will help with your healing plus brighten your day. I know you said sitting is not comfortable. Try rotating things a bit, (sit, stand, lie down for awhile) or getting out of the house if possible and meeting a friend-- or having someone over. It might surprise you how you can put up with discomfort a little better if you have someone to talk with.

    As far as memory goes, there are several (?) threads or posts on here that discuss that. I know that most people just chalked it up to the long surgery and the anaesthesia. It does a number on many people that way. I'm sure you can do a search and see that you are in the company of many, many others who shared the same problem.

    As for weakness, and feeling hopeless... I think I can give you some help there. I am sure that everyone thought I was nothing but a wet blanket the other day when a new person asked about her chances of going back to school (as a teacher) not too long after her surgery, just for a short-while, and for their graduation from 5th grade. She was having a long fusion with lots of osteotomies... I didn't want to bum her out, but she asked for ideas on the reality aspects. Maybe she can. I couldn't have. I thought I would be able to go back to school as an active librarian/teacher at 3 months post-op, only to discover I was way too weak and there was no way I could possibly survive a day's work at school... (Hey, I used my shower seat for 5 months!) If you do searches, you might run into my "turtle and hare" thread -- some people seem to bounce back quickly from this surgery and others of us take awhile to heal. The nice thing, barring complications (yes, there unfortunately are some people such as Susan, but she's getting there) is that even the turtles eventually regain their strength and get to the finish line. The goal isn't to see who gets there first, it's to have your curve stabilized, usually the curve is straightened a fair amount, and often (not a guarantee) there is either no or less pain than before. HOPE? I tended to look behind me for hope. To see how far I'd come. I kept a scrap book, so that made it easy. I could see the pictures... in the hospital, barely managing, watch the progress. You are so much farther along now. Don't lose sight of that! Sometimes it's such a gradual thing that you can barely see any progress at all. Yes, I got discouraged also. It's a slow healing process. And at the end of that first YEAR, I thought, well, I guess this is what it is... I sure have a lot of limitations!!! But as I, and Ed, and tons of others will tell you-- it keeps getting better. Year after year. I think the end of year 3 was my real year of "ta-dah" -- I have reached my normalcy, although I still continue to improve. DO NOT GIVE UP HOPE, EVER! It just takes time. And work. I worked hard that first year, walking and exercising-- but only exercising after given the go-ahead (at 6 months my surgeon let me start on arm and leg strengthening PT).

    So-- you have people that say things to you? I had people at my church, at 8 months post-op, ask "what went wrong?" Sheesh. You just have to explain that they cut your back open, fileted it in a sense, kind of chopped at your vertebrae, drilled holes, inserted rods, put numerous set-screws, totally re-set your spine, sewed you back up, and now everything has to learn its new place and heal. It may take about a year. Show them a picture of your x-rays if you have one. That should keep them quiet... Of course, I didn't think of that at the time either. I read on here of others doing things like that. (smile)

    Since you are a person of prayer, I would suggest you find a prayer partner you can confide in and ask them to hold you up with your depression. If not, you have all of us who pray. I will pray for you, Fifa dear.

    And it sounds like it's time for you to have a Potty Party! Yay! Here's to many more unaided BMs! Take care of yourself and know that we care. Hugs, Susie
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  2. #227
    Join Date
    May 2009
    Posts
    3,745
    valium is used as a muscle relaxer by some doctors...
    including some psychiatrists...
    good or bad....that is one of reasons valium is prescribed...
    often on very limited basis

    jess

  3. #228
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Susie,
    Thanks for staying active on the forum. Your input is so helpful for others. I, also, accepted that at one year post-op, things were as good as it would get and was pleasantly surprised to improve after year 2 and year 3!
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  4. #229
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Hi Fifa!
    I pray you'll be able to see some steady progress. I read your post last night & I've been thinking about how I want to respond. I remember seeing a thread about a study for PTSD associated with major surgeries like ours. Your body has had a traumatic shock, especially with being released from the hospital too soon and all the pain meds you were on. You mentioned grieving your old self and possibly seeing a counselor - I think counseling could be very helpful. I've used it many times. know it's hard to move and sit, but can you see some positives? Are you straighter? You had a big weight loss - was that a good thing? Do you need a new outfit? (Of, course!)
    I like the idea of carrying a copy of your X-ray to help friends try to understand what a major surgery this was. I have an xray photo in my purse. People hear, 'back surgery' & think a couple of months recovery, at the most! Once they see the extensive hardware, they might get a glimmer of what you're going through to heal.
    Have you searched for a house cleaner? If you have Groupon or Living Social in your area, they have good deals. I used those to try out a few companies prior to surgery.
    Your PCP may be able to write a script for PT. I have been fortunate enough to have had PT right from the beginning. The therapists are a good source of helping me keep my 90* restriction. I've ask them to watch me sit down, get in & out of the car, etc. to see if I'm doing it correctly.
    If the depression doesn't decrease as you wean off your meds, please see your PCP. Sometimes people need a little boost with antidepressants, temporarily, to get back on even ground.
    You have lots of support on the forum - it's just not the same as in person.
    I'm sending prayers & hugs!
    Peggy
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

  5. #230
    Join Date
    Aug 2014
    Posts
    170

    Fifa at the Five Month Mark

    Hi, everyone -

    I am SO SORRY that it has been two months since I posted, but what a difference two months makes. LOL

    Re-reading my posts from February, it is hard to believe that is me...that I wrote them. It is funny, but some things are the same as they were two months ago, and some things are different (as in better!).

    First of all, it was funny to re-read what I wrote about Tylenol and finally being able to tolerate it (albeit with aid from Zofran). My pain reliever of choice preop was ibuprofen - I never have used Tylenol. Anyway, at the five month mark, I can say that my chief complaint is headache. We've been keeping very detailed records since I came home from Barnes, which I would highly recommend to anyone going through such a surgery. It is nice to be able to look back and see exactly what I took, when I had a headache, pain scale, activity level, input/output, etc. Hubby did a simple Excel spreadsheet, which I added to because it was so easy to lose track of my last BM, meals, etc. Anyway, I kept at it and still use it.

    In looking at my records, I can tell you that two weeks ago, I switched from oxycodone to Percocet. My local primary care physician is managing my meds now. My PCP is hesitant to write for oxycodone and prefers to write for Percocet. Since starting the Percocet, I've had a raging headache nearly every day - only one headache-free day in two weeks. Before the Percocet, I was taking one Tylenol per day in addition to the oxycodone, and was having frequent (but not daily) headaches. I stopped taking the Tylenol when I switched two weeks ago to Percocet (as you all know, Percocet is 5 mg of oxycodone and 325 mg of Tylenol). Also, in the last month, I have noticed some hearing loss (I'm 51) and last night especially noticed a lot of ringing in my ears. So, last night, I read up on "rebound headaches" and am quite confident this is what is going on with me. I had been using the last of the 5 mg oxycodone that Dr. Buchowski prescribed, taking only one-half of a 5 mg oxycodone once a day. I don't know if it is the Tylenol in the Percocet that is causing the headache or the oxycodone - both can cause rebound headaches. So, my goal this week is to break the half tablets into fourths and use them as sparingly as possible.

    Pain management is tough in the best of circumstances, but right now, trying to increase my activity level also increases my pain. Consequently, I'm spending more time in bed than I should. I still cannot sit through an eight-hour day at work. I'm working from the office four or five hours a few times a week, and working the rest of my time from home, from bed. Riding in the car is still difficult. Standing and walking is extremely difficult.

    My mood and outlook are completely different than they were two months ago, and especially from four months ago. Since I'm not taking any muscle relaxants or gabapentin anymore, life is a whole lot better. I'm not a big user of meds to begin with, as I don't care for being "altered." Right now, my goal is to walk more, sit more, and not take pain meds of any kind (even Tylenol). I asked Dr. Buchowski what I could take instead of oxycodone, and there isn't anything. They don't want me to use Tramadol as it can interfere with the fusion. There is nothing over the counter except Tylenol. They have suggested I use gabapentin again and muscle relaxers, but I'll be darned if I'm going down THAT road again. LOL The muscle relaxers just ruined me.

    My memory is still wonky and I don't know if it will ever come back. I just don't feel as "sharp" mentally as I did before surgery. This may simply be that I'm still taking oxycodone and may improve once I stop that. Will keep you posted.

    My surgeon recommended a laxative after surgery, but I've found that a daily stool softener works much better for me, especially while on the narcotics. The stimulant laxatives like Dulcolax and MOM caused a lot of cramping and pain for me, plus folks can get dependent on it. Dulcolax makes a stool softener, so that's what I use. My bowels move daily again - hooray! No more impactions!! WOW, was that a nightmare! LOL

    I still use a shower chair at the five month mark. I'm still down nearly 30 pounds and two dress sizes, which I needed (I'm not unhappy about this). I can't eat like I used to. Still have a hard time with sugary foods and I still can't drink anything carbonated. I think my soda habit, even though diet soda, made me feel like I was hungry when I was not. Hopefully, as I increase my walking, I can lose some more weight. My muscles are non-existent in places where I had muscles before...like my calves and my glutes. My rear end is gone and butt cheeks are kind of floppy (sorry if TMI). LOL The walking will help with that, I'm sure.

    The only thing I'm sad about right now is that I thought surgery had cured my horrible preop rib pain. When I woke up from surgery, I was amazed that I was rib-pain-free, and credited the surgery with this great news. As it turns out, the lack of rib pain had everything to do with not sitting or walking. Once I've resumed these activities, the rib pain has returned, albeit not as bad as it was preop. That's really the only surgical thing I'm most unhappy about. Although I can't clean myself up the "same" way after toileting as preop, I've adjusted to using a two-handed technique that works just fine, and I'm grateful to be able to reach myself at all. (winks) Suffice it to say that I used to wipe completely from the front. Now, I wipe the front from the front with the left hand, and reach around to wipe the back with my right hand. Sorry if this is TMI. I was so worried about not being able to take care of my own needs, so maybe that will help someone else.

    Even with the shower chair, I still cannot reach my legs in the shower to shave them or shave my toes. However, the good news is that I have an electric razor, so I can shave my legs and toes while lying in bed (on a towel) by sort of crossing my legs while lying down. I can't yet manage my own toenails in an aesthetically pleasing way - I leave a lot of jagged edges. LOL Someday soon, I'll go for a pedicure.

    I've learned not to care about the condition of my house, but have yet to learn how not to care about the yard. I try not to look at it and just look forward to next spring when hopefully I'll be all healed up physically (and mentally).

    Trying desperately to think of what I've forgotten to say. (smiley) I thank you all for your support and your prayers, good wishes, and fantastic advice. I couldn't have done this without you all!!!!

    Oh, and my dad is doing great! He goes to physical therapy twice a week (they are working now on his upper body strength). He had a cervical fusion and spent quite a lot of time in the hospital preop and postop. You'll recall that he fell the Friday before my surgery was scheduled on Monday, so he spent the month of November in the hospital waiting for the spinal cord swelling to go down so he could have surgery. He had surgery in the middle of December, so he was down a long time and has lost 50 pounds. His main problem now is debilitation, but he is slowly gaining back some weight and some strength. His surgeon, a neurosurgeon here, told him that they would consider him recuperated in two years, so my dad was very encouraged by this. He is excited to know that he can expect improvement up to two years out (like me, he has been discouraged by his slow progress). Thank you all for your prayers!!

    I'll try to post in this thread a little more regularly and get back on the boards, too. Thank you all for everything - I hope you are all doing well!!

    Love and gentle hugs,
    Fifa

  6. #231
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Hi Fifa!

    Sooooo good to hear from you! I'm glad you're seeing improvements.

    It's great to have the mental fog lift. Sometimes mine is still there - I keep telling people it's the anesthesia. That explanation is getting a little old!
    My husband has ear ringing as a side effect of Tylenol. I hope those headaches stop!
    Don't be in a hurry to go back to sweets & diet soda. I just watched the documentary: Hungry for Change. (Available on Netflix) I need to kick the sugar habit!
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

  7. #232
    Join Date
    Aug 2014
    Posts
    170
    Quote Originally Posted by PeggyS View Post
    Hi Fifa!
    I pray you'll be able to see some steady progress. I read your post last night & I've been thinking about how I want to respond. I remember seeing a thread about a study for PTSD associated with major surgeries like ours. Your body has had a traumatic shock, especially with being released from the hospital too soon and all the pain meds you were on. You mentioned grieving your old self and possibly seeing a counselor - I think counseling could be very helpful. I've used it many times. know it's hard to move and sit, but can you see some positives? Are you straighter? You had a big weight loss - was that a good thing? Do you need a new outfit? (Of, course!)
    I like the idea of carrying a copy of your X-ray to help friends try to understand what a major surgery this was. I have an xray photo in my purse. People hear, 'back surgery' & think a couple of months recovery, at the most! Once they see the extensive hardware, they might get a glimmer of what you're going through to heal.
    Have you searched for a house cleaner? If you have Groupon or Living Social in your area, they have good deals. I used those to try out a few companies prior to surgery.
    Your PCP may be able to write a script for PT. I have been fortunate enough to have had PT right from the beginning. The therapists are a good source of helping me keep my 90* restriction. I've ask them to watch me sit down, get in & out of the car, etc. to see if I'm doing it correctly.
    If the depression doesn't decrease as you wean off your meds, please see your PCP. Sometimes people need a little boost with antidepressants, temporarily, to get back on even ground.
    You have lots of support on the forum - it's just not the same as in person.
    I'm sending prayers & hugs!
    Peggy
    Hi, Peggy!!!

    I think of you every day and pray for you! Sorry for the delay in this response.

    At my last visit with Dr. B, I had the radiology folks there print out my last x-ray, which I do carry with me. I've found it invaluable to try to explain to other people what I've been through. I can't remember if I said this before, but I got a third rod "dominoed" next to my rod on the left side in the lumbar area, which is better explained when I have the x-rays with me. When people see all the rods and screws, especially the pelvic fixation, they have a better understanding of the magnitude of this surgery. As we've all said before, most folks know someone who has had a diskectomy or maybe even a fusion, but they have very little understanding of this type of procedure and the extent of the instrumentation. It has been exhausting being back at work - my coworkers, who are wonderful, all want to know the details, which can occupy a great deal of time. So, I sort of limit my comments now to the fact that I'm doing great and show them the x-rays. That cuts down on the time spent telling my story over and over. (smiley)

    I never did hire someone to clean but still might. I've learned to not care as much as I did before...to accept what I cannot change. LOL I just simply tell myself that I'll do it when I can. Hubby will do whatever I ask of him, but he's done so much that I cannot bear to ask for more. It will get done when it gets done...in the words of Susan, it just is what it is! I will, however, have a yard worker soon. I cannot bear the sight of all my perennials trying to bloom through a thick layer of leaves. I'm not even considering trying to do anything out there myself, although I sometimes think I could probably run the leaf blower. LOL I sure couldn't bag any leaves after I had collected them anyway. If the yard and the house are my main worries, then I'm both lucky and grateful.

    I'm overjoyed at the weight loss that continues! I've lost another five pounds in the last couple of months and am down two sizes. I've ordered some new clothes and have never looked better. Although I don't know how much height I've gained, I've gained enough that I don't have to go up on my tiptoes to kiss my husband (he's 6'5"). My eating habits have changed for the better - I'm more of a grazer now than an eater. Hopefully, once I start getting in my two miles per day, the weight will continue to come off. Right now, I'm interested in toning up - my muscles are floppy!

    I did consider counseling, which I'm a huge believer in (my undegrad and grad major). I had one major depressive episode back in the early 1990s which turned out to be mostly due to a reaction to an antidepressant prescribed by my gynecologist (Prozac). I was depressed because I was having a hard time getting pregnant, so I took Prozac, which really helped the first time I took it. I weaned off and stopped taking it (didn't want to try to get pregnant while on Prozac - no one knew at that time if it might harm a baby and I wasn't willing to chance it). I was off it for about a year and then started it again. When I restarted it, I was flung into the pits of despair and couldn't leave my house. I finally ended up seeing a psychiatrist, who prescribed a different antidepressant (Effexor), which turned my brain chemistry around. I weaned off that and have never taken another antidepressant again. I mentioned this prior ordeal because at that time, seeing the psychiatrist, I found out my brain chemistry is different (the doctor said, and I quote, "You have a special brain.") LOL Hubby and I still joke about my "special brain." (smiley) Drugs sometimes do to me the exact opposite of what they are supposed to do. Sorry for the long story, but in short, I knew that my brain just couldn't handle the multiple medications I came home on. So yes, while I'm a huge believer in counseling and consider it extremely beneficial, my first priority was to eliminate brain chemistry issues and then seek counseling if the depression persisted. Thank God it hasn't. As soon as I stopped the muscle relaxants, the depression began to lift. I say depression - it was more a feeling of being hopeless.

    I think my body and my brain are trying to cope with what has happened, and I agree about the post-traumatic stress. This was a huge surgery, the magnitude of which I'm still trying to comprehend. I've learned to go easier on my self and watch my self talk (not focusing on what I can't do).

    I'm heading over to your thread to see how you are doing. Hope all is well with you!!

    Take care!
    Fifa

  8. #233
    Join Date
    Aug 2014
    Posts
    170
    Quote Originally Posted by Lizardacres View Post
    Fifa,

    Good for you for listening to your own body and not the nurse and ditching the Valium. I would definitely not call Valium a mood stabilizer, it is a sedative, and if your mood is low it can cause depression. Also, this class of drugs prevents memories from being formed which is one reason it is so useful for medical procedures.

    Have you thought about going to your PCP and asking to try an antidepressant? I started taking Effexor many years ago as an adjunct to pain control. I found it really dialed down the pain and helped me in coping with all the difficulties the scoli was causing in my life. I take 75 mg which is considered a low dose. I was also taking klonopin and Vicodin, which are downer drugs and the Effexor seemed to balance out the downer effects of those drugs. That combo of drugs kept me quite functional. Many here got injections to hold off surgery, but I managed with drugs, probably because I had been seeing a neurologist and that was his approach.

    I too am starting to feel the effects of fusion, particularly when walking. It's really odd being forced to move a different way but it's reassuring that things are proceeding as they should.

    But seriously, consider an antidepressant, it just might make a world of difference for you and readjust your brain chemistry after all that Valium.
    Hi!!!

    Long time, no response from me. I'm so sorry!

    I found your post to be very helpful (see my response to Peggy with regard to brain chemistry and my previous experience with antidepressants). I agree with everything you said! In the past, I needed a different class of antidepressant to change my brain chemistry back. So far, I wouldn't consider it at this time. My brain chemistry seems to be okay since stopping the muscle relaxers (especially Valium). I do still have memory problems, so I was glad to read what you said about that class of drugs keeping memories from being formed. That is the best description so far as to what happened/is happening to me.

    In re-reading some of what I posted, it seems surreal, like it wasn't me who was posting. I am glad I posted (I kept a journal here at home, too) so can see how much progress I've made. I only have bits and pieces of memories from both hospitalizations. I remember more from being at Barnes for surgery than I do from being at Boone for the resulting ileus. I remember the ambulance ride home from St. Louis, but I don't remember the ambulance ride three days later to Boone (or much from that hospitalization). It's weird. I feel like it shouldn't be spring...like I'm still waiting for Christmas (we didn't celebrate Thanksgiving or Christmas). It is just a weird, surreal sort of feeling that I have now. Definitely not depression, just like an "out of body" experience. LOL It's like this surgery happened to someone else. I'm grateful to "her" for having done it!!!! God bless her for what she went through to help me!! LOL I'm laughing as I type that. Sometimes, it is hard to believe I'm on the other side of surgery.

    I also feel the effects of the fusion. The outside rims of my pelvis are sore to the touch. Sort of like where you would put your hands on your hips. I'm sure that is from the pelvic fixation. I wake up stiff in the morning and especially feel the hardware when I walk and when I sit. My feet still burn and my legs go to sleep while sitting for five or six minutes on the toilet. I have icepick jabs now and then, mostly in the hips and groin area, but not enough to warrant taking anything for nerve pain. Oh, and I'm still numb in the lumbar area and butt and still have the "board nailed to the butt" that everyone talks about. These things are slowly getting better, but I'm very aware of the hardware. It feels like I'm wearing an iron girdle on the inside. My iron girdle feels heavy, too, like I'm wearing a belt with heavy weights attached.

    The hard part so far with physical activity is that I feel like I need something for pain after I've been active. This is tough because I'm trying not to take anything for pain. So, I spend more time in bed than I should. Going to try to work on that this week. I've added an activity level to my meds spreadsheet so I can track how far I'm walking. Hopefully, that will help.

    Hope you are well and things are going great with you!! Take care!

    Hugs,
    Fifa
    Last edited by fifa; 04-13-2015 at 04:31 PM. Reason: spelling - typed "to to sleep" instead of "go to sleep"

  9. #234
    Join Date
    Aug 2014
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    170
    Quote Originally Posted by Susie*Bee View Post
    Fifa - my heart goes out to you. What you are going through is very difficult, but for the most part they are problems that many people have dealt with on here over the years. The depression is something that is more of a concern and something you should probably speak with the doctor about. If the nurse didn't seem to pick up on it enough to mention it to your surgeon, maybe you should talk to your PCP about it. It is probably caused by the medications, but depression, caused by anything, is a serious problem.

    Some suggestions, in case you are not already doing so: keep a diary of your daily meds. Check them off when you have taken them. That will help you remember to take your vitamins and calcium and not get mixed up on whether you took anything already or not. You can just list your AM and PM ones and the vitamins and calcium and the date... and voila! Keep track of everything-- your stool softener, milk of magnesia, etc. Then you have that as a reference if needed.

    It is good that you are doing well pain-wise. Hooray! As for having been a bit more energetic before, nothing can undo that, so just move on. You have your new mindset, you know now about not bending and twisting. Don't "take to your bed"... The best thing for you is to walk and have a normal life. Being active will help with your healing plus brighten your day. I know you said sitting is not comfortable. Try rotating things a bit, (sit, stand, lie down for awhile) or getting out of the house if possible and meeting a friend-- or having someone over. It might surprise you how you can put up with discomfort a little better if you have someone to talk with.

    As far as memory goes, there are several (?) threads or posts on here that discuss that. I know that most people just chalked it up to the long surgery and the anaesthesia. It does a number on many people that way. I'm sure you can do a search and see that you are in the company of many, many others who shared the same problem.

    As for weakness, and feeling hopeless... I think I can give you some help there. I am sure that everyone thought I was nothing but a wet blanket the other day when a new person asked about her chances of going back to school (as a teacher) not too long after her surgery, just for a short-while, and for their graduation from 5th grade. She was having a long fusion with lots of osteotomies... I didn't want to bum her out, but she asked for ideas on the reality aspects. Maybe she can. I couldn't have. I thought I would be able to go back to school as an active librarian/teacher at 3 months post-op, only to discover I was way too weak and there was no way I could possibly survive a day's work at school... (Hey, I used my shower seat for 5 months!) If you do searches, you might run into my "turtle and hare" thread -- some people seem to bounce back quickly from this surgery and others of us take awhile to heal. The nice thing, barring complications (yes, there unfortunately are some people such as Susan, but she's getting there) is that even the turtles eventually regain their strength and get to the finish line. The goal isn't to see who gets there first, it's to have your curve stabilized, usually the curve is straightened a fair amount, and often (not a guarantee) there is either no or less pain than before. HOPE? I tended to look behind me for hope. To see how far I'd come. I kept a scrap book, so that made it easy. I could see the pictures... in the hospital, barely managing, watch the progress. You are so much farther along now. Don't lose sight of that! Sometimes it's such a gradual thing that you can barely see any progress at all. Yes, I got discouraged also. It's a slow healing process. And at the end of that first YEAR, I thought, well, I guess this is what it is... I sure have a lot of limitations!!! But as I, and Ed, and tons of others will tell you-- it keeps getting better. Year after year. I think the end of year 3 was my real year of "ta-dah" -- I have reached my normalcy, although I still continue to improve. DO NOT GIVE UP HOPE, EVER! It just takes time. And work. I worked hard that first year, walking and exercising-- but only exercising after given the go-ahead (at 6 months my surgeon let me start on arm and leg strengthening PT).

    So-- you have people that say things to you? I had people at my church, at 8 months post-op, ask "what went wrong?" Sheesh. You just have to explain that they cut your back open, fileted it in a sense, kind of chopped at your vertebrae, drilled holes, inserted rods, put numerous set-screws, totally re-set your spine, sewed you back up, and now everything has to learn its new place and heal. It may take about a year. Show them a picture of your x-rays if you have one. That should keep them quiet... Of course, I didn't think of that at the time either. I read on here of others doing things like that. (smile)

    Since you are a person of prayer, I would suggest you find a prayer partner you can confide in and ask them to hold you up with your depression. If not, you have all of us who pray. I will pray for you, Fifa dear.

    And it sounds like it's time for you to have a Potty Party! Yay! Here's to many more unaided BMs! Take care of yourself and know that we care. Hugs, Susie
    Hi, Susie!

    I found your post very helpful and will look back through the threads for memory loss and the "turtle and the hare." I, too, am still using my shower chair at the five month mark. Probably will continue to use that until I can bathe in November. What I wouldn't give for a real hot bubble bath!!

    I have found the daily med list an invaluable tool, and I have added to much to it (and am adding more this week). I track everything I take, my food, my BMs (which I'm happy to report have returned to normal albeit with the aid of a daily stool softener), and my pain level/symptoms. It was because of this list that I noticed the frequency of the headaches I was experiencing that still continue. I have no doubt the headaches are rebound headaches and probably due as much to Tylenol as oxycodone. Now, in order to motivate me, I've added an activity tracker where I can document how far I'm walking. That should help increase it.

    One thing I should have mentioned in my update post is that I'm a little shaky when I stand for more than about five or ten minutes. I'm sure this is due to inactivity - my muscle tone has decreased greatly and I know I haven't been doing enough. Did you have this? That's part of why I don't stand in the shower - that and I'm scared of slipping and falling.

    I'm just now feeling like I want to work on my activity. In a prior post, I relayed the story about how the nurse scared the crap out of me....when I met with her, she observed me doing many things that I shouldn't have been doing (leaning forward, leaning left and right, etc.). I got scared that I was screwing things up and I did take to my bed. I still catch myself doing things like that, but I just "feel fused" now. Hard to explain. A couple of months ago, I had an occasional very mild pop or something that felt a little crunchy or odd - I don't know how to describe it. It's like how a house settles, maybe - that may be a good analogy. I would log roll out of bed, and when I stood up, there would just be a sensation in the lumbar area, again, a kind of pop-crunch. This isn't happening anymore. So, that's what I mean by "feeling fused." I have little pain now getting in and out of bed and occasionally get in bed without logrolling (I still try to logroll but forget sometimes).

    While my recovery is going very slow, I think it is going great, and I'm happy. I'm looking forward to what lies ahead now. My department had a kickball tournament last Friday, and I so wanted to participate (but didn't, obviously). So, I'm getting better for sure!

    Thank you so much for your encouragement - it means the world to me!!!

    Hugs,
    Fifa

  10. #235
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    Dear Fifa-- it sounds like you have really come a long way in these two months! I'm so proud of your dedication at keeping your diary of everything! How clever of you to track it all! At the time, I did jot down (on our calendar) my walking-- "30 min.", etc. and you are so right, it keeps you accountable and on track, because you don't like to see blank days. Ha ha. Oops, missed a day. How disappointing. Right?

    I am sorry about the shaky episodes. Can you check with your doctor about possibly having physical therapy for leg strengthening? Explain to him about your shakiness and weakness... Will your insurance cover that? I had become very weak and that was so beneficial to me. I had arm and leg strengthening PT at 6 months post-op. Just make sure the therapist is knowledgeable about scoliosis fusion and never do anything called "bridging". Also, make sure your blood sugar level is ok-- people will get shaky if it is low. I just finished a round of PT for my legs for a different reason and it is always so good. It really strengthens you. Too bad you just can't keep going there!

    I am approaching my 8 year anniversary and still always logroll out of bed. (smile) They say that (logrolling), squatting (or going down on one knee), and so many other things we learn to do are the best practices for ALL people for their backs anyway. Best wishes as you continue improving. It sounds like you are doing great! What a super attitude! Hugs!
    Last edited by Susie*Bee; 04-14-2015 at 07:25 AM.
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  11. #236
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    I didn't know you had a 3rd rod, Fifa!

    I'm not limber enough to cut my toenails - I'm having to 'settle' for pedicures! I bought a long handle to insert a razor, so I could reach my legs. It doesn't help. I've added leg waxing to pedicures. Oh, and I've been having neck massages once a month. I guess I'll make it through all this NECESSARY pampering!
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

  12. #237
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Fifa,
    It is still so very early in your recovery. I kept a daily journal describing what I did physically for the day and how I felt, including everything from constipation to aches and pains. I had a lot of rib pain, tailbone pain, and other aches for at least a year, however, when I would reread my journal, I realized that I was still making progress. It is so slow that you often don't realize it. At a year, I was sure that it was as good as it could get with some aches that I assumed would be permanent. I definitely felt a little better each year. I think you will find your mind getting sharper whenever you can reduce your pain meds. Hang in there!
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  13. #238
    Join Date
    Aug 2014
    Posts
    170
    Quote Originally Posted by Susie*Bee View Post
    Dear Fifa-- it sounds like you have really come a long way in these two months! I'm so proud of your dedication at keeping your diary of everything! How clever of you to track it all! At the time, I did jot down (on our calendar) my walking-- "30 min.", etc. and you are so right, it keeps you accountable and on track, because you don't like to see blank days. Ha ha. Oops, missed a day. How disappointing. Right?

    I am sorry about the shaky episodes. Can you check with your doctor about possibly having physical therapy for leg strengthening? Explain to him about your shakiness and weakness... Will your insurance cover that? I had become very weak and that was so beneficial to me. I had arm and leg strengthening PT at 6 months post-op. Just make sure the therapist is knowledgeable about scoliosis fusion and never do anything called "bridging". Also, make sure your blood sugar level is ok-- people will get shaky if it is low. I just finished a round of PT for my legs for a different reason and it is always so good. It really strengthens you. Too bad you just can't keep going there!

    I am approaching my 8 year anniversary and still always logroll out of bed. (smile) They say that (logrolling), squatting (or going down on one knee), and so many other things we learn to do are the best practices for ALL people for their backs anyway. Best wishes as you continue improving. It sounds like you are doing great! What a super attitude! Hugs!
    Hi, Miss Susie Bee!! (huge smiley)

    Thanks for your post. I see the surgeon back in early June, so I am going to ask him about PT at that time. Now that I'm doing more sitting and walking, even though I still am not sitting for a full eight hours (six to seven is about the max now), I'm having upper back/neck/shoulder pain that I didn't have before. I think my body doesn't know how to carry itself now that I'm upright (if that makes sense), so I definitely think I need therapy to re-learn how to carry myself.

    I will say, though, that getting in and out of bed is not at all painful right now. I don't have much pain. I take 1/4 of a percocet per day now, and not on any regular schedule, but I tend to take one before I go to work to help with the walking and sitting. It has been hard to increase activities while decreasing meds and seems counter-intuitive to me, but I'm doing it. It is just SO.....SLOW!

    Hope you are well - hugs to you!!

    Fifa

  14. #239
    Join Date
    Aug 2014
    Posts
    170
    Quote Originally Posted by PeggyS View Post
    I didn't know you had a 3rd rod, Fifa!

    I'm not limber enough to cut my toenails - I'm having to 'settle' for pedicures! I bought a long handle to insert a razor, so I could reach my legs. It doesn't help. I've added leg waxing to pedicures. Oh, and I've been having neck massages once a month. I guess I'll make it through all this NECESSARY pampering!
    Hey there, Peggy!

    Okay...where did you find a long-handled razor insert? You won't answer this fast enough, so I'm headed over to Amazon right now. LOLOL The hairy legs have been an embarrassing problem, plus I haven't wanted to go get a pedicure until my legs were smooth. I've decided to wear slacks and not care. (smiley) But, I will get the handle for the razor for sure!!

    So good to hear from you! I would love to go have a neck and shoulder massage, but am just kind of scared still.

    Yes, I was amazed by the third rod, too. My lumbar spine was just dust. In hindsight, it is a wonder I put off surgery for as long as I did. I'm blaming "the third rail" for my slower progress. That probably isn't fair. Honestly, I was a fat smoker before surgery, so I'm sure that had/has a lot to do with my recovery. Although I was active, I couldn't walk for more than five minutes or so, and I couldn't stand for any length of time. My current state of health is clearly better. However, I will say that spending months in bed resulted in a lot of muscle loss.

    At least finally my mind is better, although I have no memory of things...somehow, it is like we fast-forwarded from December to May. I barely remember being readmitted two days after discharge for the ileus. I remember the air beds at Boone and that they were an absolute nightmare. I don't remember the ambulance ride there now, but I remember that I walked myself down the steps and got on the gurney myself on our front porch. I remember being in the ER, but that is about it.

    Hope you are doing great! I think of you often and pray for you!!

    I'll try to do better about getting on the forum. Things have been crazy with getting back into the swing of things, going to the office, etc. My parents put their house on the market and there has been just a lot going on.

    My ability to "cope" is less than it was before surgery. I used to do a lot of yoga and meditation, but I seem to have lost my ability to focus mentally. It's weird.

    Take care!! Giant pain-free hugs to you!!

    Fifa

  15. #240
    Join Date
    Aug 2014
    Posts
    170
    Quote Originally Posted by golfnut View Post
    Fifa,
    It is still so very early in your recovery. I kept a daily journal describing what I did physically for the day and how I felt, including everything from constipation to aches and pains. I had a lot of rib pain, tailbone pain, and other aches for at least a year, however, when I would reread my journal, I realized that I was still making progress. It is so slow that you often don't realize it. At a year, I was sure that it was as good as it could get with some aches that I assumed would be permanent. I definitely felt a little better each year. I think you will find your mind getting sharper whenever you can reduce your pain meds. Hang in there!
    Hi, Karen -

    THANK YOU for that! The rib pain is especially bad. The tailbone pain is getting better. You know, I thought of something on Friday (I had my first appointment with my primary care physician after surgery). I gained a little over an inch in height and am still down about 30-35 pounds (depending on if I use my scale or the doc's). I bought a couple of pair of pants last month and they are already too big. Anyway, I was thinking after the appointment that I probably need to raise my monitors on my desk now that I am taller and sitting taller in the chair. This could be part of my neck and upper back/shoulder pain.

    The other positive thought I try to keep in my dulled brain is that it took years for my spine to curve and deteriorate, which they "fixed" in a day's time. All those bones are just settling back into the correct place. (smiley) At least that's what I tell myself.

    I feel so much better than I did a month ago for sure. I'm doing more now. The journal really does help me see where I've been, especially those days when I'm feeling a bit low.

    Hope you are doing great! Take care!

    Fifa

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