Announcement

Collapse
No announcement yet.

4 weeks and counting...

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • 4 weeks and counting...

    Hi everyone,

    I've been inactive for a little while, just doing a lot of reading and research for my upcoming surgery (T3-L3). My date is set and I've decided to stick with my doctor, after getting several other opinions. I am a nervous wreck but really trying to stay positive and think good thoughts! I had my pre-op appt the other day and it was quite a reality check. I've never been hospitalized before, other than when being in labor with my 2 children. My doc is very optimistic and I'm hoping with my curve and relativity young age (42), my surgery will go smoothly. I'm wondering if anyone could suggest anything to do in advance at home to make life a little easier for both me and my family. I work FT and would like to prep as much as possibly to help out my husband and kids.

    Another question is in regards to a blood transfusion. Has anyone needed one with their surgery and did they donate their own blood?

    Thank you in advance for your feedback!

  • #2
    Welcome! I decided not to donate (as we live 12 hours from the hospital and I did not want to go down just to donate, so arrived 7 days before surgery) but my son and husband did. I needed more blood than that. My surgeon will of course allow donations, but does not encourage it.

    I read lots of older threads and found tons of getting ready discussions. This was also my first big surgery of my life. I somehow found confidence in my surgeon and relaxed 2 weeks before the surgery. I wanted peace before that, but it finally came to me.

    I am almost 7 months out and am pleased with the results. I have very little to no discomfort now. I continue to improve.

    Can you talk with people that are your age that have had your surgeon? Sometimes that is reassuring.

    Where is your surgery? Who is your surgeon?

    Best of luck. Susan
    Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
    2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw
    2021: Removal T1 screw & rod

    Comment


    • #3
      I donated my own blood (three units) for my first fusion. I did have all three replaced after surgery. For this surgery on the 13th I am not donating my own blood. I know it weakened my immune system the first time and that was with taking prescription vitamins. When is your surgery and where is it?

      Tamena
      Diagnosed at age 12 with a double major curve

      Braced till age 15

      SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

      Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

      Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

      Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

      Comment


      • #4
        Tamena made a good point that also worried me, that of weakening the immune system. I felt very strongly about donating before surgery, but the point of self-donating and decreasing my immunity won in the end and I chose not to donate the one unit. I needed far more than the usual person, I believe that I received 10 units of blood.

        Susan
        Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

        2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
        2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
        2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
        2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
        2018: Removal L4,5 screw
        2021: Removal T1 screw & rod

        Comment


        • #5
          I am going to discuss this with my doctor again. Thank you for your feedback. Honestly, the thought of a blood transfusion didn't even cross my mind until I had my pre-op appt last week. I am having surgery at Abington Hospital- Abington Spine Institute in PA in mid November.

          Comment


          • #6
            I had a surgery with the same doctor that Susan did. My doctor did not encourage blood donation because it would weaken me. She said that most likely I would need more blood than I would be able to donate and I would end up with somebody else blood anyway. She was right - I had a lot of transfusions because I lost quite a bit of blood during the surgery. Second opinion doctor had the same views on transfusions.
            I am stronger than scoliosis, and won't let it rule my life!
            45 years old - diagnosed at age 7
            A/P surgery on March 5/7, 2013 - UCSF

            Comment


            • #7
              Good luck! Looks like we shall be recovering at the same time frame. :-) Nothing but positive thoughts from here on out.

              Tamena
              Diagnosed at age 12 with a double major curve

              Braced till age 15

              SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

              Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

              Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

              Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

              Comment


              • #8
                I feel much better about it. I called my doctors head nurse and she said he doesn't not recommend it either. I'll hope for the best that I wont need one. Thank you for all and best of luck.

                tae_tap- just curious about your second surgery...was the first one not successful?

                Comment


                • #9
                  [QUOTE=jworth;154176]I feel much better about it. I called my doctors head nurse and she said he doesn't not recommend it either. I'll hope for the best that I wont need one. Thank you for all and best of luck.

                  tae_tap- just curious about your second surgery...was the first one not successful?[/QUOTE

                  Well, the first surgery I tried to correct a double major curve by doing a procedure call Short Segment Bone on Bone where we removed the disks in between and compressed the bones together to heal like a broken bone. I fused T12-L2. In one years time above the fusion the curve progressed and below it started to collapse and the disk is thinning quickly. Here is a little example of how fast things are progressing, I went from being 5'1 1/2 to 4'9.9 in a matter of 8 months.

                  I am fusing both curves now from T3- Sacrum with pelvic fixation. Part of me wishes I had done it to begin with but I probably would have regretted not trying the smaller fusion.

                  Tamena
                  Diagnosed at age 12 with a double major curve

                  Braced till age 15

                  SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

                  Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

                  Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

                  Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

                  Comment


                  • #10
                    Good luck to you, jworth and try to relax. I know, either said than done. Do not stress out about transfusions - it is very common and they check blood thoroughly before giving it to the patient. The word 'blood transfusion' might sound scary if you've never had it, but even if you need it, you would not care much about anything.

                    Right now, try to stay busy and think PAST surgery. Think about your new life that is almost here, what things you always wanted to do, but could not because of your back.

                    Make sure that the house is safe for you - remove any area rugs, make sure you have enough room to move around the house with a walker. We had to move some furniture pieces because I could not maneuver with my walker around it. I think I only used a walker for a few weeks, but it was helpful in the beginning. Move your clothes from the lower drawers to the upper ones because you won't be able to bend or squat in the beginning. Switch drawers with your husband if need be. Do you have a sponge on a long handle and a shower chair? A toilet seat raiser or a commode toilet? They might give you a commode in the hospital. Buy a few bras that close in the front - you would not care about any bras in the first month, but then a front closure ones would be nice. You don't want any hooks to irritate your scar. You would need several grabbers around the house. And buy all the perishables you can think of - toilet paper, napkins, detergents etc so that your family would not have to worry about that.
                    I am stronger than scoliosis, and won't let it rule my life!
                    45 years old - diagnosed at age 7
                    A/P surgery on March 5/7, 2013 - UCSF

                    Comment


                    • #11
                      Hi,

                      I wanted to chime in about blood transfusions--my surgeon would not allow me to donate ahead either (that was fine with me). He wanted me going in to surgery as strong as possible and without compromising my immune system. I was fused T8-sacrum/pelvis at age 42 and required I think a total of 6 units of blood...4 during and 2 more a couple days after surgery. Likely you will need banked blood, but I was reassured that it is very safe and carefully tested.

                      As far as what to do to get ready. I would recommend exercising every day if possible. Make sure you have thighs of steel, and a good strong core. Consider getting your legs waxed a week before surgery so you don't have to worry about shaving. It will be out of the question for a while (and you will not care). If you practice any other "ladyscaping" or trimming I would do it a few days before surgery because you will not be able to bend to view things for awhile. Sorry if this is TMI!

                      If you have school-age kids at home prep them for how you will be after you get home from the hospital. They need to be guided about what to expect so they aren't upset (Mommy will be sore and tired for weeks, and will need to lay in bed and rest a lot). About the only activity I could do with my kids in the first few weeks after surgery was lay down and read aloud, so if you have school-aged kids you want to stock up on some good read-aloud books.

                      You will not be able to do ANY housework for weeks, so your family needs to be prepared to pick up all the slack. You will not be able to shop or cook for awhile either. Many of us did not drive until at least week 8, some longer. Be prepared to let the housework go because you will be exhausted and sore, and must allow your body to heal. This is not the time for a perfect house.

                      You may want to stock up on movies (load your Netflix que!) or music to listen to so you have something to do during the day. I definitely suffered from toxic levels of TV exposure by the time I returned to work at 14 weeks. How long do you plan to take off?

                      Stock up on some of your favorite "sick" foods that are easy to digest even when you don't feel well. Many people do well with soups or smoothies. Think excellent nutrition, high protein, plus plenty of fruit/veggies for fiber.

                      Also, don't forget to have some laxatives and stool softeners on hand. You will need them for sure. There are lots of helpful threads about this (search "constipation"). You want to minimize this as much as possible, as it is extremely uncomfortable and almost unavoidable with all the narcotics you will take. I found Miralax, Senokot-S and Colace helpful. You also should have a bottle of MagCitrate available for severe constipation. It is the bomb. You can find all of these items at the drugstore over the counter.

                      When you are ready to be discharged make sure your family picks up your pain meds BEFORE you leave the hospital. We learned this the hard way after getting the runaround from our local pharmacy about the huge quantity of pain meds prescribed (Safeway was unable to fill it for some reason, not sure why). I almost ended up in the ER because of this. We live 2 hours from the hospital where I had my surgery, which made the situation worse. The day before you are discharged the doctor should give your husband your prescriptions so he can have them in hand when you leave the hospital. You will probably have to ask about this to make sure.

                      You may also end up with your period in the hospital, even if it's not time. You might prefer to bring some of your own sanitary products to the hospital, as they will be more comfortable than what the hospital offers you. The nurses will help keep you clean if this happens, and you will not care. Bring some lip balm and either sturdy slippers or easy slip-on shoes. You will be out of bed and up walking a day or two after surgery. Other than that you don't need to bring a lot to the hospital.

                      Best of luck and please let us know how things go! There are lots of us here who have been through this and you will get through, too.
                      Last edited by leahdragonfly; 10-21-2013, 03:55 PM.
                      Gayle, age 50
                      Oct 2010 fusion T8-sacrum w/ pelvic fixation
                      Feb 2012 lumbar revision for broken rods @ L2-3-4
                      Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                      mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                      2010 VBS Dr Luhmann Shriners St Louis
                      2017 curves stable/skeletely mature

                      also mom of Torrey, 12 y/o son, 16* T, stable

                      Comment


                      • #12
                        Hire someone to help clean your house occasionally if you can afford it. Like Gayle said, keep an arsenal of stuff for constipation. Most everyone has been there and it is not pretty. Get an enema and rubber gloves and other meds for constipation mentioned earlier. The gloves are for your husband to give you the enema if you need it. it will happen. Get your partner/husband someone on board to help out with everything. Kids are great with this. Church groups and neighbors can bring food.

                        Get lots of grabbers. Irina has a post about folding ones that are great.

                        Get a notebook and have the people with you keep notes. I do not remember very much about UCSF hospital. The pharmacist put together such a marvelous cocktail of drugs that I remember little. I was so out of it, that I never knew that I had a PCA button. As I said that I needed pain meds, my husband said for me to press my PCA button. I was clueless and while he was not supposed to press the button he did and I finally fell asleep. I must have been labeled a "difficult patient" for many reasons and I must have an abnormal reaction to drugs because I went from in pain (I do not remember it) to barely breathing and needing Narcan to counter the meds.

                        Be as prepared as you can, but I found that recovery took longer than I thought that it would. I, of course, was above the possibility of constipation.hahahahahahahaha.

                        Get as organized as you can, do your homework, take lots of deep breaths, pray and just go with it.

                        Susan
                        Last edited by susancook; 10-21-2013, 04:22 PM.
                        Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                        2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                        2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                        2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                        2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                        2018: Removal L4,5 screw
                        2021: Removal T1 screw & rod

                        Comment


                        • #13
                          Thank you everyone. This is really helpful. A few more questions..


                          - bringing kids to the hospital...OK on day 2 or 3, or not a good idea? I know my kids will want to stop by when I'm there
                          - has anyone needed to go to rehab after the hospital? My doc said its probably a 50/50 chance and to be conservative about it
                          - suggestion for a bed on the main level of our house so I wont have to climb the stairs...good idea?
                          - chances of going out for a nice dinner to celebrate my dads birthday about 4 weeks post-op
                          - when did everyone get out of the house for a few hours?

                          Sorry for all of the questions!

                          Comment


                          • #14
                            Originally posted by jworth View Post
                            Thank you everyone. This is really helpful. A few more questions..


                            - bringing kids to the hospital...OK on day 2 or 3, or not a good idea? I know my kids will want to stop by when I'm there
                            - has anyone needed to go to rehab after the hospital? My doc said its probably a 50/50 chance and to be conservative about it
                            - suggestion for a bed on the main level of our house so I wont have to climb the stairs...good idea?
                            - chances of going out for a nice dinner to celebrate my dads birthday about 4 weeks post-op
                            - when did everyone get out of the house for a few hours?

                            Sorry for all of the questions!
                            Kids: How old? Need to be prepared as you might have blood hanging; D3 at earliest. Time when you will be up in a chair; play be ear, so do not promise them as you may feel like you want them to visit on D3-4 but then again, you might be vomiting and receiving blood; short visit; have them make a card for you [they will feel good about that and you will cherish it forever]; adult to bring them and take them home; have someone get you ready with your best face on, stage the room and hide any grossness; HOWEVER: I do not remember D 1-5 in hospital and imagine that I would have been awful company; for the kids, that would be great, so I would have done it for younger kids if I had them [mine are adults]

                            Also, if you have kids under 10, you might want to give them a picture of you and an important article of yours to hold on to until you get home [that way they know that you are coming home and their fear of your dying will lessen; show them pictures of what your back incision line might look like [there are great pictures on You Tube and you might have them watch a You Tube of somebody else's surgery stay]

                            RehaB; I went to rehab for 7 days and really thought that it was great! I di remember rehab and kids are very welcome and can see you walking around; they basically throw you out of the reg hospital with little self-care competencies; yu will be better rested to come home to kids

                            Bed: Main level would be better, esp if you do not go to rehab as you gain strength for stair walking in rehab

                            Dinner at 4 weeks: Probably yes, great idea for everyone; get handicapped sticker; plan not to be gone for more than an hour

                            Out of the house: After rehab, I went out of the house almost everyday for short trips than progressively got longer; walk every day a few times for short times every day; brought a walking stick with me. Outside is great for mental health and feeling normal; you will not be driving until you get off heavy narcs, which for me was about 2.5 months. Varies a lot. If it is cold, have somebody drive you to a mall and walk. The first time that I had sunshine on my head in rehab I knew that I was truly alive and felt so invigorated! You will get tired, naps are a must!

                            Good luck! I think that you will do well; Susan
                            Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                            2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                            2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                            2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                            2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                            2018: Removal L4,5 screw
                            2021: Removal T1 screw & rod

                            Comment


                            • #15
                              In your and my age group people might go straight home IF they have an adult at home with them 24/7. I remember discharge instructions saying that I should not be left alone for more than an hour during the first week. My husband took a medical leave for a month and my parents live near by, so somebody was always with me for about a month. They would always be next to me when I took short walks to make sure I won't fall. You cannot fall! You might be groggy from the meds and shaky on your feet in the beginning. I could dress by myself (they teach you how to do that in the hospital with the use of different tools), but I needed help in the shower. I remember my first shower I was so exhausted and a chair in the shower came in very handy. You will need somebody to cook for you for at least a few weeks.

                              Can your husband or parents stay with for at least several weeks? If not, it's better to go to a rehab. Also, there are some people on the forum who did a solo recovery, I'd imagine that must have been hard.
                              I am stronger than scoliosis, and won't let it rule my life!
                              45 years old - diagnosed at age 7
                              A/P surgery on March 5/7, 2013 - UCSF

                              Comment

                              Working...
                              X