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

  1. #241
    Join Date
    Aug 2014
    Posts
    170

    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

  2. #242
    Join Date
    Aug 2014
    Posts
    170

    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
    Last edited by fifa; 09-20-2015 at 03:23 PM. Reason: spelling errors

  3. #243
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    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
    66 and still heartbroken...
    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°
    2014 DXd w/CMT (type 2)

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

  4. #244
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,547
    Quote Originally Posted by fifa View Post
    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
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  5. #245
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Good to hear from you.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  6. #246
    Join Date
    Jul 2010
    Location
    Long Island, New York
    Posts
    87

    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!
    Cathy
    2 sons, one Syracuse University graduate (working for the Mets now), one college sophomore, one great husband and two fabulous cats
    54 years old March 5
    AIS 45 degrees Thoracic at 14, Milwaukee brace for one year in 1977 then in 2012 I found Dr. Baron Lonner ❤️
    Surgery April 8 2015
    Presurgical curves T77 L66
    Post surgical T27 L22
    Fused T3-S1 pelvic fixation, osteotomies and all the other stuff but you know what? It's done...

  7. #247
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275

    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?
    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!

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