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

[PeggyS]

FIFA - you're back!!

I've been wondering how you're doing?! I'm glad that, overall, you're happy with your surgery.
How often are you going to St Louis for PT? I'm hoping for a green light for aggressive PT at my 1 year appointment.
I had some mild cognitive issues at my little part-time job. I couldn't add in my head, either & I kept making mistakes. At one point, I almost quit because it seemed like a cop-out to keep blaming anesthesia. I kept plugging away & now things are ok.
I wonder if I'll ever get my metabolism back?!
I take 3 mile walks a few times a week. It's wonderful to be able to stand & walk as long as I need to!
It's so good to hear from you!!
How's your dad?

[cathydrew]

Toto

Wow I thought I was crazy but I too was fixated on toilet issues prep, and I, too, got the Toto Washlet I love it, hubby and I installed it...I was totally independent the moment I got home. Thing is, apparently I have super long arms because I don't need any adaptations any more, even being fused T3-S1 with fixation I can "take care of business" LOL which enables me to have freedom out in the world, but at home I still use the Washlet all the time!

[jackieg412]

Good to hear from you.

[titaniumed]

I hadn't thought about any brain trouble after surgery.

Fifa, I know what you are saying....

The short term memory really gets affected. (and some long term)

At least some of the people that I work with that know me say I forgot more than everyone in the room combined. I guess it feels good to an extent, but in reality it sucks trying to think about some things that I did know in the past. Sometimes, I get completely locked up on certain thoughts...and really have to think about some things for a long time. I have my on and off “mental” days.....and in the late afternoon my mind can shut down at work, where it just doesn’t make any sense being there so I leave. Sometimes at work I can be non-productive and I tell everyone that, and they say its ok, they want me hanging around anyway.

Some data will say 30 days or state some made up timeframe for our chemical normalization after taking our meds.....and its bullshit because they really don’t know about what happens with our brains. I do feel that there are permanent changes or some mental disability from all of this in adults over 50. The hospital told me that I had the strongest medication regiment known to man......

I quit cold turkey because of it, and replaced with nutrition at 6 weeks. March 14, 2008 It seemed the logical thing to do.

Scoliosis surgery recovery for me was more about lower GI management and saving my brain. My spine priorities dropped down a few notches.....

I have had to adapt to all of this. I guess I am fortunate that my spine problems have been repaired, after all that was the main goal.

Its good to hear your doing ok

Hang in there

Ed

[Susie*Bee]

Dear Fifa- it's so good to hear from you! You have been very busy! And yes, if you do a search, there have been many people who have had brain fog and memory problems that lasted awhile after their surgeries. I think I remember talk of the long time under anesthesia being the culprit, but of course the meds would contribute as well. I recently read an AARP article on the 10 top meds for causing possible memory loss and I had been taking 4 of them, although I was down to just 3. YIKES! Trying to get off another, but the neurologist has to approve and wean, etc.

It sounds like you have a good PT plan. Dr. B is probably wise in his caution about therapists as some don't understand the limitations and might have you do something you shouldn't. Slow and steady. (smile) You are making good progress! Recovery takes awhile! Have you looked into those stand-up desks? I wonder if you could try one out to see if that would be any better. Best wishes for figuring out what will work out right for you at work. It sounds as if you are doing fairly well for this stage of the game. Hugs, Susie

[fifa]

Fifa's New Best Friend - The Toto Washlet Bidet

Hi, everyone -

A lovely person on the board asked me about our bidet, how we chose it, etc. Here's what we ended up doing and why. (smiley)

My biggest concern preop, knowing that I would be fused from the low thoracic area to the sacrum with pelvic fixation, was being able to clean myself after using the toilet. I didn't want to be dependent on adaptive equipment and have to store and clean that, and perhaps even take it with me when I left the house. My bowel issues (ileus/impaction) resolved a few months after surgery, thankfully, so my need for a bidet was purely hygienic.

Since cleaning myself was my one big fear, we addressed it before I had surgery. We did a lot of internet research and finally settled on the Total Washlet S350-E. You can Google it as there are several people who sell it online. The "E" I think means "elongated," and whether you need the E or a different model is going to depend on the size and shape of your toilet. Our toilet seat is elongated (not round), so that was the first consideration when we bought the bidet.

There are many bidets on the market and thankfully the prices have come down. Other countries rely on a bidet way more than Americans do, and as they have become more popular here in the US, the prices are now coming down. I must say that Japan has all the high-tech bidets, and this one was fairly expensive... it was nearly $1,000 when we got it a year ago. I was scared to spend so much money on something that I wasn't sure I was going to need plus something that I didn't know would work for me, but we decided to take the chance and bought the one that had all the features we wanted. You can't return these things, so I would suggest you do your own research and buy the one that fits your specific needs. Also, we found the online reviews very helpful. Some of the American-made bidets were said to have been noisy, which was a consideration for us. We didn't think having everyone in the house hearing the thing running would work for us. (smiley) Places like Lowe's and Home Depot sell bidets, too, but the only place we could find the one we wanted was online. Some online vendors offer free shipping. Again, you can't return this after it has been used, but you can return it if it shows up broken or something.

What I knew when we ordered this was that I didn't want to be blasted with cold water or room temperature water. I wanted warm water. There are two kinds of bidets - those which have a tank and those that don't. We chose a tankless one that heats the water as you use it. I would highly recommend doing that. When a bidet has a tank, you are going to be limited to the amount of hot water you have available to you. When I had an impaction shortly after surgery, I would have run out of hot water pretty quick as much time as I was spending on the toilet dealing with constipation and impaction. Also, the tank on some of these bidets takes up some space, and we didn't want that. So, that's why we chose one that was tankless. If I want to sit in there and blast my bits for an hour, I never run out of water (I've never blasted my bits for an hour). LOL

These things come in all sorts of styles with all kinds of bells and whistles. The one we bought has a light in it. Yes, a LIGHT! LOL I thought this was about the dumbest thing I had ever heard, but it is kind of cool that when I get up in the middle of the night and go to the bathroom, the bidet has a motion sensor on it and turns on a little light as I approach the thing. (smiley) Who knew?? The motion sensor can also raise and lower the lid for you, but we keep the lid open all the time, so that is of little use to us. The one we bought has a self-cleaning feature, too. Every so often, the little nozzle comes out and you'll hear a trickle of water as it washes itself off. Maybe a couple of times a day this happens. It just sends a tiny bit of water through the nozzle - it doesn't spray the room or anything and you don't have to keep the lid down or worry about it spraying everywhere when it cleans itself. Also, when you approach it, the light turns on and the little nozzle comes out and wets down the toilet bowl before you use it. Making the bowl wet above the water line up to the rim of the toilet makes it easier to clean later. Residue rinses away when you flush rather than sticking to the porcelain above the line where the water sits in the bowl.

The other thing I knew for sure before we ordered is that I wanted a bidet with a remote control rather than having the controls attached to the side of the seat. I knew I wouldn't be able to twist around after surgery, so it didn't make sense to me to have all the controls on one side of the seat or the other where I couldn't see them easily and had to struggle to use them. The remote control is about the size of a television remote - probably about five or six inches long. I keep it on the edge of the tub next to the toilet. The bidet we bought has a lot of options with regard to the intensity of the pressure and the position of the nozzle, and I want the controls to all of that in my hand rather than on the side of the seat. I hold the remote in my hand and run the nozzle through several positions at several different intensities before I feel completely clean, and this isn't something I want to reach around to the side of the seat to do. I highly recommend a bidet with a remote if you won't be able to twist and lean after surgery. Our remote is wireless, by the way, just like a TV remote, and is battery operated. I wouldn't want a remote that is attached to the bidet by a wire (don't even know if that is an option).

This bidet looks pretty much like a regular toilet seat except for the hose coming out of the side of it (near the floor so not really that noticeable). It runs on electricity, so you'll need an outlet. My husband installed it and it took only a few minutes to replace our old toilet seat with the new bidet, attach the water supply, and plug it into the outlet. That is all it took.

The seat has a pressure sensor on it, too, so if you get up off the toilet while it is spraying water, it will stop. You can't make it spray unless you're sitting on it.

This has been a life saver for me. Again, toileting issues were my main worries preop and a big reason why I didn't want this surgery. I didn't want to take a chance that I would come home and never be able to clean myself adequately (without adaptive equipment). We resolved this before surgery with this bidet and installed it in enough time to where I got used to having it well before surgery. I just couldn't live without it.

If you have questions, post publicly or privately. I'm happy to help if I can!

Hugs to you and yours,
Fifa

[fifa]

Fifa At The Ten Month Mark

Hi, everyone -

It has been forever since I've been on the forum. Hope you all are well.

I have had two problems since surgery, both of which are getting better. All in all, I'm very happy I had the surgery and am VERY happy it is behind me! My ability to stand and walk is much improved postop, and standing and walking gets better every day, although I'm still not quite as active as I was before surgery. My activity level is no one's fault but my own. My work got behind while I was out, and it seems to be taking forever to get caught up again.

My main problem now, at ten months postop, is some nagging upper back/shoulder/neck pain. My surgeon, Dr. Buchowski at Wash U in St. Louis, doesn't want me to see a physical therapist where I live (Columbia, Missouri) so he has sent me to a physical therapist in St. Louis. She is wonderful and has helped me quite a bit. Since my fusion was all lumbar and low thoracic, it seems my upper body now doesn't know exactly where it is supposed to be in space. I have very little pain in the low back - I get twinges/grabbing if I move the wrong way (like if I forget precautions and twist or lean more than I should). This is just a sort of a grabbing tightness that goes away almost as soon as it happens...just a little reminder that I shouldn't have leaned or bent that far. (smiley) It is no big deal. As far as the neck and shoulders, it is almost like my shoulders are coming up toward my ears and that I'm sort of hunching forward in the upper back area. The therapist has given me exercises, which seem to help. I'm also supposed to start swimming again, but so far, I haven't been able to fit that into my schedule. I'm also getting massage therapy once a week, which is helping more than anything else I'm doing. However, it has been hard for me to lay flat on my back on the table. I haven't tried getting on my stomach and won't try that probably ever. I see the therapist again in October, so hopefully she will have more suggestions for me then. At that visit, we will work on my gait and my posture. I'm also going to order a "posture bra" to try and see if that helps. This upper back pain is now my biggest problem postop. I think some ibuprofen would help, but I can't have any of that until November at the one-year mark. This upper back pain started in earnest when I began spending more time at my desk at work. I've moved my monitors around and done everything I could do to make my work station ergonomic, but it hasn't helped much. The more I sit at my desk at work, the worse the pain is. Hopefully, we'll find a solution to this soon. It is annoying and unexpected.

The other problem postop is a bit harder to explain, but happily seems to be going away. I've had quite a bit of cognitive difficulties in the last few months. When I returned to work full-time in April, I found that I couldn't do simple math in my head anymore, and I also found that my reading comprehension was pretty bad. I found myself staring at an e-mail and knowing that I needed to read it, and it was like my eyes just scanned the lines but the words didn't sink in. My brain knew that I had a task..."read this e-mail," and so my eyes just followed it line by line, but my brain was off in Tahiti or somewhere. I made a lot of mistakes when I first went back to work, which really upset me. I was easily distracted, too. I would start to respond to an e-mail, and then another e-mail would come in. I would open the second e-mail and start responding to it, ignoring the first e-mail I had opened and started answering. In short order, I had six or eight e-mails open at the bottom of the screen. More than once, I put a reply to one e-mail in a different open e-mail. It was terribly difficult to multitask, and although it has gotten a lot better in the last month or so. I don't know if it is actually better or if I'm coping with it better.

The cognitive stuff scared the living crud out of me. I hadn't thought about any brain trouble after surgery. My preop worries were all about the physical things. I thought I was losing/had lost my mind. When I saw my surgeon in August, I told him that the cognitive stuff was really distressing me more than the physical recovery. He said to me, "Does it feel like early Alzheimer's?" I said, "YES! That is exactly it!" He said, "It is because you had such big surgery. Everyone has this." I began to cry and didn't ask him any more questions, but have a few for when I see him again in November at the one-year mark. I don't know if he meant "big surgery" as in the amount of time I was under anesthesia, the amount of rods/screws, or maybe the amount of pain medications that I took until I finally quit them in May. I had never heard of people still having difficulties with anesthesia effects months and months after surgery, but apparently it happens. Frankly, I think it was all the pain meds and muscle relaxants. Also, maybe it was/is because my brain was focused on healing to where it didn't have enough energy to think. (smiley) It might also have to do with nutrition. Who knows? All I know is that I haven't mentally quite felt like me again. Happily, this is MUCH better now.

I'm very happy with the results of surgery and wouldn't hesitate to do it again if I needed to. While my recovery has been slower than I would have like, it is what it is, and I feel better now than I have in probably 15 years or so. It is still hard for me to believe sometimes that I'm on the other side of this. What I know is that I couldn't have done it without the support I've had from all of you, and I thank you.

I'll try to post more frequently. I think of you all often - I have lots of catching up to do here now that I can read and absorb it better.

Oh, and someone sent me a private message about the bidet that we bought. I would be lost without it! I will post info publicly about what we bought and how we chose it. Yay - another poop thread! (LOL)

Love and hugs to you all!
Fifa

[fifa]

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

[fifa]

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

[fifa]

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

[golfnut]

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!

[PeggyS]

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!

[Susie*Bee]

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!

[fifa]

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

[fifa]

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