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Thread: Questions, questions, About sitting and PT, mostly!

  1. #1
    Join Date
    Oct 2009

    Questions, questions, About sitting and PT, mostly!

    I started to add this to Melissa's thread but decided to turn it into its own.

    There was talk there about how one can't sit (at a computer or in general, I guess) only ten days after surgery - and I gather, for a good while after that too. I assume this applies mostly to those whose fusion extends to the pelvis or at least, sacrum.

    So, about this sitting business, how long does that difficulty last? Realistic answers only please - I realize there's a range of outcomes. (My projected fusion is to the pelvis). I've been counting on the post op period to get to writing projects. Not immediately of course, but after a month or two. What about drawing at a slant top drawing table? (Usually you sit at them, on high adjustable stools - backless). It will be a colossal bummer if I can't do one or the other. I guess I can use a laptop on my knees in bed, but...

    Guess I'm having trouble imagining what I will feel like and what positions I can manage, post op - even to how I will lie in bed. (And how high my bed should be).

    Being swamped with more and more questions as I try to picture the whole thing.

    Like, what does it feel like when you try to sit?? Can anyone describe it? What stops you from sitting? Pain or problems with balance or insufficient core strength to support your newly straightened spine or - or what?

    Also - on a different topic. How much PT do you attend after surgery? Not thinking so much of the rehab facility (though I wonder about that too). but once I'm out of a residential setting. How long does the PT period last, and how much can one do at home? This has major meaning in terms of my insurance coverage. When can one start driving oneself to PT appointments, for that matter?

    I live in a medically unsophisticated area. I wonder if the OTs and PTs will be - well, good enough, to know what to have me do.

    Specialists seem to be the way to go with this surgery, where garden variety orthopods are way over their heads. Maybe ordinary PTs are too. Do PTs need special training in helping people recover from a reconstruction/fusion? I've thought of renting a place near the surgeon for a few months for the initial period to overcome this problem to a degree (defining "initial period" as until my three month check-up - barring anything out of the ordinary).

    My medical coverage crosses state lines so that will help, though, of course, the rental will cost money. And then there’s the matter of hiring help when family burns out. Which reminds me, how long should I ask my S.I.L to help me - if she can, of course?

    Whew, out of breath! Hope I'm not making a nuisance of myself. At least, many of these questions are probably of interest to others too. Many thanks!
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  2. #2
    Join Date
    May 2010
    I don't think I can be much help here. My fusion is t3-t12, 10 years ago. I had some problems sitting for the first few weeks, but it was mostly just that it was uncomfortable to lean back against any hard surface. I carried a pillow with me that I could use to rest my back against. It took some time to get used to having a stiff spine against a hard chair, and that's still not a particularly comfortable thing - I'm skinny, so I don't have a lot of padding back there.

    I didn't have PT at all after my surgery. My doctor gave me some exercises to do after a while, but I didn't have any PT. But since my fusion isn't as long as yours will be, it'll probably be different for you.

    Sorry I can't advise more...and good luck!

  3. #3
    Join Date
    Jul 2009
    My fusion is in my lumbar area. For the first 4 months, I was happiest flat on my back! But I did go back to work at 3 months. I'm a reading teacher so I would sit for thirty minutes and then get up and then sit again. This wasn't so bad, but the getting up and down was PT taught me to brace-up my stomach muscles and things like that when I would get up and down. I felt, for the first four months, that I was okay if I could change positions frequently. If I watched TV for thirty minutes, then I would get up and walk around. Standing was tough for me, too..walking was much better. I took a pillow with me to restaurants for a while and used a ton of pillows in bed at first...under my knees, to prop me on my side, etc. I use my laptop on my knees in bed...but I did that even before surgery.

    Good core strength definitely helps...wish mine had been better before surgery. I started PT around 8 weeks post-op...very gentle stretches. Now, when I have time to go, I do a lot with core strengthening and stretching. You can't drive until you are off the meds, which was a big incentive for me to get off, though I took my time.

    I think the sitting is tough b/c after surgery, gravity and the ordinary compression of the spine is just not comfortable. I was surprised that sitting for long periods bothered me...but your stamina will increase. It's not so much painful, as it just begins to ache and makes you want to change positions.

    Hope this helps.
    Kathy, 43
    Diagnosed as a teen
    Boston brace 2 years
    63 degree lumbar curve
    Surgery August 26, 2009
    Anterior approach fused T12-L4
    now 28 degrees

  4. #4
    Join Date
    Aug 2009
    York, PA
    I think I am one of the few people on here who seems to have had little or no trouble with sitting even during the early days in the hospital. It is important to not stay in any position for too long a period of time because you get so stiff but I really was not uncomfortable sitting. I had more trouble lying down in bed. That was just miserable for me for the first few weeks. As far as PT, my understanding is nothing too aggressive is done until they know there is evidence of fusion. I had PT from the visiting nurse folks during my first weeks at home but that was just very gentle stretches, leg lifts standing at the counter, etc. Right now I am doing a lot of walking both on land and in the pool and some very gentle (non-twisting) swimming. I am hoping that after my next app't., they will prescribe PT because I think some of my core muscles are just about non-functional! Definitely want PT people who are experienced with spinal fusion patients.
    As far as help at home, my husband originally scheduled 5 weeks FMLA leave and went back to work after 4 weeks. I was fine on my own at home by then and I had a long fusion.

    Anne in PA
    Age 58
    Diagnosed at age 14, untreated, no problem until age 50
    T4 to sacrum fusion
    63 thoracic now 35, 92 lumbar now 53
    Dr. Baron Lonner, 2/2/10
    Am pain-free, balanced, happy & an inch taller !

  5. #5
    Join Date
    Feb 2010
    I was lucky like Anne, I'm fused T9 to the sacrum and have had no problem sitting really, even in the hospital. I get stiff after a while so I usually would get up then to either walk around or stand for a while.
    Lynette - 44 years old.

    Pre-surgery thoracic 55 degrees
    Pre-surgery lumbar 85 degrees

    Post-surgery thoracic 19 degrees
    Post-surgery lumbar 27 degrees

    Surgery April 1st 2010.

    Posterior spinal fusion from T9 to sacrum.
    Dr. Cronen at University Community Hospital - Tampa, FL.

  6. #6
    Join Date
    Mar 2008
    New Bern, NC
    I still can't sit on a soft sofa for a long time, but I can sit on a hard chair or a rocking chair as long as I want. Post-op, it was very painful for me to sit for more than 15 minutes on anything. It does get better with time.
    As far as PT is concerned, you will get some PT in the hospital. They won't let you go home until you can walk and climb stairs. Walking is the only PT my Doctor prescribed for the first six months, so renting a place near your hospital probably isn't necessary. Maybe you can do a search for a PT in your area and check to see if any of them have experience with spinal fusion. Most younger PT's have Doctorates now and I would expect that they have some training in treating spinal fusion patients.
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F.

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  7. #7
    Join Date
    Oct 2008
    Northern Virginia
    I had no problems sitting at any time after my first surgery. Fused to the pelvis as I am, it was never an issue with discomfort/pain 'down there.' Even in the hospital I didn't want to be in my bed and preferred reclining in the chair in my room. That threw one night nurse for a loop when she rolled her cart over to the bed to get vitals and it was my sister sleeping there! hehe

    At home I couldn't sit in our lounge chairs - they were too cushy, so I sat on a kitchen chair with a pillow behind me. But mostly I just sat straight up and didn't need support. For me the main sitting issue was fatigue. In those early days of recovery everything took an enormous amount of energy and I simply wore myself out after an hour or so - had to lie down and rest. The getting up and down does get easier plus the more you move the less stiff you are.

    My main thing was I just couldn't seem to get very comfortable anywhere. But that gets better with time as everything else. I was simply impatient.
    Julie - 51 yrs old

    Dx'd 1973 - 43* thoracic curve / rotation
    Wore Milwaukee brace 1973 - 1979
    Pre-surgery: 63* thoracic / 52* lumbar curves

    Surgeries: P - March 16, 2009 - Fused T3-S2 with pelvic fixation
    A -April 14, 2009 - Fused L5-S1
    Achieved +70% Correction
    Dr. Khaled Kebaish, (and team) Johns Hopkins Hospital, Baltimore

    Standing x-ray
    New Spine 03/19/2009
    New Spine Lateral 03/19/2009

  8. #8
    Join Date
    Oct 2009

    "Well, before I give you the news, have a seat..."

    You all are fantastic. I don't know what I would do without you "post-op" friends to help allay my anxieties and fears - more a function of the Great Unknown than any specific worries.

    For ignorance, there's no medicine like information. Even "bad news" is better than no news - at least, that's how my mind works.

    I realize I can't know everything - so much differs from pt to pt, surgeon to surgeon and how ones particular situation is able to be managed medically. But I can try!!

    What's more, preparation - physical and mental - has been the key to survival for me and my sons over the years. Every (seemingly) little thing matters to that end, and gives me a greater feeling of control. Evidently, that's important to my personality type and for better for worse, that's not apt to be changeable for the foreseeable!

    And FWIW the financial end being very important, I'm trying to cushion any sticker shocks by investigating all the many possible bad surprises that may await me. I really don't want to find myself forced to deal with insurance appeals right after coming to from this major "bodily insult" (a real medical term, I love ).

    Even now I’ve been spending hours/day trying to sort out a peculiar (and very costly) special charge incurred during my heavy duty NYC week of medical investigation.

    I'll probably post something about it in the insurance sub-forum later, but meanwhile (just to vent ) - get this! It turns out there's a New York State surcharge (tax) of almost 10% on all out of pocket medical expenses!?! Seriously. It's like the more desperate you are, they more they sock it to you. It applies to those without insurance (not me) most of all! I only found out because they’re balking at paying a bone density CT scan. Something about it’s not being “Medically necessary”. I hope (assume – almost) that this will “come out in the wash” as it’s so patently nonsensical.

    But while processing their refusal, I discovered this sadistic tax when I saw the initial charges (around $700) to leap up by $70 – just for starters.

    THIS is why I’m trying to turn over all rocks in advance, in case such horrors lurk beneath. That meaning anything contrary to what I've counted on, even if it’s not something as shocking as this.

    I keep thinking - what if it turned out there were some problem recognizing the medical necessity of the surgery itself!? (Stranger things have happened!). I figure the total charges will come to around $400K in all (surgeon +facility+anesthesia + rehab facility...). First, we start by upping the total by $50K! It seems that it’s a mixed blessing that my plan allows me to go anywhere, Blue Cross is accepted….But pre-determination is next to impossible.

    Meanwhile, I’m trying to anticipate and check, check and anticipate - from sitting and PT units (here), to expectable charges and ALL the fine print. Sheesh, what if I get the kind of shock where they say, “well, first sit down before I give you the news…” - AND I CAN’T EVEN SIT DOWN!?

    Thanks, all, for helping me “cushion the blows” !
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  9. #9
    Join Date
    Dec 2009
    I am just 2 weeks out of surgery and I would definitely say that sitting is more comfortable than laying down.I go to sleep about 10 pm and sleep until 5-6 am and then I must get up as the pain is too bad to go back to bed


  10. #10
    Join Date
    Jul 2007
    I live in New Milford, Ct and grew up in Brooklyn, NY
    Not to discourage anyone but after 4 years, 2 hours is pretty much the maximum I can sit before my back starts to spasm. We just drove into the city last week for a doctor's app't and it was 5 hours round trip. Driving home I had to take Vicodin. We try to stop often and I know I need to build up my core muscles since they atrophied after my infection but I really hate driving or flying more than 2 hours at a stretch. I am sad that this is how it might stay but I keep pushing with exercising hoping this is temporary. I always have a pillow in my car in case the chair doesn't conform to my back. Does anyone have any suggestions about how to improve this?
    If I had known more about PT I would have gone to visit all the local ones beforehand to ask if they had experience with long fusions. I felt a bit like they were experimenting on me based on much smaller fusions and I did injure myself. I finally found a small PT place that stated they had not worked with someone like me but were willing to research and speak to my doctors. That was a good experience.
    ant./post. fusion Jan. '06
    T3- sacrum
    dbl.curve, T47,L43

  11. #11
    Join Date
    Oct 2009

    deliberations about pain relief, new "chair" + driving versus sitting at desk

    Thanks for telling it like it is for you, Dianeh! I already have a lot of trouble driving - can't drive more than an hour as is, though as passenger it's better. OTOH I can sit at the PC for MUCH longer.

    There must be a difference.

    Incidentally, although I'm probably going to get one of those inflatable type chairs dailystrength has been touting, the one I use now has some advantages - at least, as long as I don't slouch (that's a big IF, of course).

    I'll look for an online image as it's too hard to describe. (goes to google)
    Only mine cost LOTS less than $155 (best recollection is at most $25, but it's been a while). If you combine it with core strength and as I said, avoid slouching, it's pretty good, while not being comfy. I figure it avoids letting you sprawl in a non-ergonomic way so you're exercising as you sit.

    Also, having short calves, my lower back hurts a LOT if I'm sitting in a chair whose seat is even slightly too raised over the floor (15" is the most I can handle). This chair meets that standard too.

    But I'm PRE not POST! God knows what it will be like afterward. Meanwhile, I recommend this sitting apparatus (cf. link) - and DON'T take that price seriously. FWIW, I think driving posture is quite different from desk posture - at least, speaking for what's tolerable for me now.

    And I think driving is different from being a passenger in a car too (hurts more). Maybe it's the added tension from being the navigator. Of course, the seating capacity has to be ample! Driving back from NYC with my son in his ECHO I ended up doing yoga in the car - almost a backwards somersault; my lower back got so uncomfortable!

    But then I'm shameless. I've been known to lie down on a tile bathroom floor in a doctor's office, protected only by whatever jacket I've brought - that's to stretch my lumbar area, heels over head! . A long drive for a consult, just does me in - even as passenger. Or even just chugging through hours of errands.

    What in the world am I going to do after this surgery fuses me tip to stern??
    One of my great worries (if not THE great worry) is what if I suffer more when I don't have this avenue of pain relief - the extreme stretching? Also dangling from bars (not the drinking kind ) Right now that self-decompression is vital to give me relief from that squashed feeling in my disks. I need to start a thread where I try to describe this pain better, hoping to get feedback on whether it ever goes away after the fusion.

    If it does NOT and I'm irrevocably fused, I may find myself looking longingly at the water under expansion bridges, I'm afraid....
    Truthfully, if I don't find some realistic reassurance about this, I may not go through with the surgery. And that may indeed be the best decision for me. My motto in making difficult decisions is always "minimize regret". I can hardly think of any greater regret than still feeling the same pain I went into it to escape - PLUS the extra pain that must be unavoidable just from the bone work and metal hardware bolted inside!

    Not to put anyone else off. My pain may be largely a function of my hyper-mobility and the arthritis + spondylolithesthis which has resulted - something probably only affecting a small minority of the rest of you.

    At least, now I can still get comfortable lying down (especially in adjustable hospital beds) and stretching. Plus my floor exercises are providing considerable relief.

    If it looks like fusion will close those doors, without opening others, though, this surgery may NOT be the way to go - for me. Still not sure scoliosis is my main source of pain (instead of the lumbar arthritis, even though it IS accompanied by a lumbar Cobb of 60 degrees).

    SO hard to tell, what's causing what (and therefore what will relieve what). I know various complications can occur more or less unpredictably (and for some, pain IS worse afterward - not entirely sure that part really IS unpredictable if one knows what to look for and ask).

    This is perhaps THE major factor in deciding whether the surgery is right for me. Don't know if these deliberations "speak" to anyone else.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

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