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  • not doing well

    My surgery is July 18th and I am not doing well for many reasons. To begin, I am very nervous about having this surgery. During my first surgery, May 2010, my kidneys stopped working for three days and I almost had to go on dialysis. During my second surgery, there was the chance that I would have been paralyzed. I am , also, very concerned about what if this surgery does not work and I go through all of this for nothing. I am now in CA and know no one here as my daughter refuses to come here and help me. I screamed at her on the phone yesterday and now she , most likely, will not talk to me for a long time. I have nothing to say to her except how upset and angry she has made me. There is always the chance that I will not make it thru this surgery and she just doesn't seem to care. It is going to be very hard on me when I return home from the hospital and rehab to have no one here to help me except my 16 year old son who doesn't cook or drive.I just feel alone as my husband is off his meds and is acting out as a child.

    Thanks for listening

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    April 21, 2020- another broken rod surgery

  • #2
    Leading up to surgery is a horrible time, wondering about all the bad things that could happen. But you have a great surgeon this time Melissa, and that's the difference. That, and the fact that he knows your history and will be taking good care of you. I believe the quality of the surgeon is of prime importance in determining your outcome. I know yours comes very well recommended and what you've told us about him here, I can tell he's a caring man who understands the difficulties you've been having.

    I'm just sorry that you have this separate issue with your daughter. I'm afraid at this age, kids often seem very uncaring. It's likely she will regret her decision in the future but that will be too late for you now. Do you have any family you could call on? A caring friend? I doubt they will send you home from Rehab until they are sure you can cope. Could your doctor speak to your husband for you? Other than that, will your insurance pay for some home-care?

    I feel for you going through this. We need everything right when we go in for surgery, but it seems you are going to come through this without the help of those who should be there for you. And you will. Get as much prepared before surgery as you can. Have your computer near your bed so you can get onto the forum where hopefully someone will be, to listen to you and hopefully offer advice. Can you freeze down some meals so all you need do is pop them in the microwave? Or buy ready-made meals for your freezer. Can your son do the laundry? Do you have a neighbour you can ask for help from, if necessary? People want to help Melissa and if she knows the situation before you go in, she will be prepared and may be a great asset. Is there a community or neighbourhood assistance scheme - whether that is for help with shopping, driving you to your GP, house-cleaning etc. Check to see if there's a Help Line of some sort, and have the number handy. Often we don't even know these things exist until we go look for them.

    Don't hide your situation from your GP or surgeon. Make sure they know your home situation. They may have some suggestions too.

    We'll all be barracking for you Melissa. Just get through this week, through your surgery, through Rehab then take one day at a time. It may not be nearly as bad as your last two recoveries, because I believe you have a better surgeon.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

    Comment


    • #3
      Hi Melissa...

      It must all feel very overwhelming. I don't have any tips about getting your husband and daughter in line, but I'll urge you to check out if your county has some sort of peri-transit system. I think it would also be a good idea, if it's not too painful, to get some casseroles made and frozen. And, if you can find a grocery store that allows you to order groceries over the internet, and have them delivered, that might be very helpful.

      Hang in there friend. It's all very daunting, but it seems like there's no alternative for you.

      Regards,
      Linda
      Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
      ---------------------------------------------------------------------------------------------------------------------------------------------------
      Surgery 2/10/93 A/P fusion T4-L3
      Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

      Comment


      • #4
        Melissa,
        We can't be there physically for you but you have our thoughts and prayers for a successful surgery and smooth recovery. Having a good surgeon will make all the difference! Best of luck.
        Karen

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

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

        Comment


        • #5
          Melissa--
          Just wanted to reiterate what everyone above has said. Also, through your doctor can you be set up for home visits from nurse, physical (very minor type exercises on the bed) and occupational therapist? These 3 came to my home someone almost everyday if I recall. They were really helpful and one--can't remember which now--would have even helped with a few minor household things. This was arranged with my St. Louis doctor thru a Homeward program in my local hospital. I'm sure every place has something different, but I'd call ahead and ask about the possibility.
          Especially good for asking ?'s. They were especially helpful when I was having very low blood pressure problems. They knew when it was time to see my home doctor, etc. etc. I got home after 2 weeks and they came for about another 3 weeks. All that is pretty blurry. Another good reason to have them to check on medication, etc. It was covered by my insurance. Obviously, another consideration. Hang in there. I hope you can get the Huddleston book too. I can't remember if you are taking any anti-anxiety meds now. I think you have good reason to. We want you to go in calm and peaceful with as much positive energy as possible. We're sending it your way! Janet
          Janet

          61 years old--57 for surgery

          Diagnosed in 1965 at age of 13--no brace
          Thoracic Curve: 96 degrees to 35 degrees
          Lumbar Curve: 63 degrees to 5 degrees
          Surgery with Dr. Lenke in St. Louis--March 30, 2009
          T-2 to Pelvis, and hopefully all posterior procedure.

          All was posterior along with 2 cages and 6 osteotomies.

          Comment


          • #6
            Melissa

            Be upfront with your surgeon and be sure to tell him that you might have support problems at home. I did mine alone and my surgeon was pretty concerned. He sent all sorts of people out to my house everyday to check up on me. There are programs, and local people that will help you out.

            On the grocery delivery issue, just call the closest supermarkets and ask them, I’m sure you can get food and items delivered.

            I have faith that you are going to pull this one off. You know that you don’t have any choice in this matter and after all you have been through, you deserve a full recovery and you are going to get it. Try not to worry too much, you know what to expect. I’m sure that the surgeons will have this totally under control for you.....

            Calm blue ocean

            Ed
            49 yr old male, now 63, the new 64...
            Pre surgery curves T70,L70
            ALIF/PSA 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

            Comment


            • #7
              Thanks everyone but I am crying all day. My daughter just told me that she is getting married in march and that I will not be involved at all . She does not even know if our names will be on the invitation. She also said that she does not know if any of my friends will be invited.

              i am not comfortable leaving my 16 year old son alone for two weeks and when I get home, he will be useless.

              melissa
              Melissa

              Fused from C2 - sacrum 7/2011

              April 21, 2020- another broken rod surgery

              Comment


              • #8
                Melissa, my advice would be to see your GP, speak to her and ask for something for anxiety. You have one more week to get through, I'm not even sure that medication would kick in in time, though when I used it, I noticed a marked difference within 24 hours. I slept and I relaxed. This is what you need. My surgeon was fine with it. I stopped it the day I had surgery because I never needed it again.

                Tell your GP what you are up against right now. Honestly, you are the perfect candidate for some anti-anxiety meds.

                It's terrible what's happened with your daughter and the timing is very bad, but, and I know this won't help you now, from my own experience with daughters, this will blow over. Perhaps you will never quite have the relationship you once had, but I believe this will blow over.

                Right now you need to let her get on with her life and you have to take care of yourself.
                Surgery March 3, 2009 at almost 58, now 63.
                Dr. Askin, Brisbane, Australia
                T4-Pelvis, Posterior only
                Osteotomies and Laminectomies
                Was 68 degrees, now 22 and pain free

                Comment


                • #9
                  I do not even have a GP as I have only been here in CA for 2 weeks

                  Melissa
                  Melissa

                  Fused from C2 - sacrum 7/2011

                  April 21, 2020- another broken rod surgery

                  Comment


                  • #10
                    When we discussed moving to CA , my daughter agreed . When I discussed having surgery in CA, my daughter agreed that she would be here to help me. That is what I am so angry about

                    Melissa
                    Melissa

                    Fused from C2 - sacrum 7/2011

                    April 21, 2020- another broken rod surgery

                    Comment


                    • #11
                      Melissa-- I could be wrong, but I think there are also social workers at most hospitals that could at least get you going in the right direction for the help you need in arranging for day help at first. I know there must be home health care that is available. And surely if you explain things to your surgeon's office, they could possibly make a referral to a GP???

                      There have been several people who have gone through the surgery "on their own" and managed, but they made sure they were well-stocked with frozen food, other supplies, 2 reachers in case they dropped one, etc. Have you met a neighbor yet that you could call on if you need help? If not, take the plunge and try to be friendly. Test the waters and see if that person would be one that could be a help if you get in a tight spot... If not, you can always call 911.

                      That is pretty jerky of your daughter, but life is full of disappointments with people we love and depend on. One thing most of us scolis have learned is that we are a tough bunch, and when push comes to shove, we can find the inner strength somehow to get through it. If you have a faith, now is the time to rely on it too. I'll be praying for you. Hugs, Susie
                      71 and plugging along... but having some problems
                      2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                      5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                      Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

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

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

                      Comment


                      • #12
                        Melissa,
                        The hospital where I had my surgery, during my pro-op appointment, questioned me as to what I had for a support system at home. I am sure arrangements will be made in your particular case. Try not to worry about this as I am sure it will all work out for you. Darn, if you had stayed in North Carolina, I would have been able to come and help you in your recovery.
                        I am so sorry about the daughter situation. I have been there, so I know what it feels like. She is being very selfish. Are you sure your son will be useless? My church family was a God send for me. I will be praying for you also.
                        Sally
                        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. Rands735.photobucket.com/albums/ww360/butterflyfive/

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

                        Comment


                        • #13
                          This is what I did

                          Melissa,
                          With a revision I would not even consider going home. It's too much of a burden on family.
                          One practical suggestion I have is to go directly to a rehab(also called "sub-acute") hospital as soon as you are discharged from hospital. This is usually covered totally by insurance. You will get excellent care, pain relief and rehab. By the time you are finished there you will be more home ready. The discharge planner can arrange it. This is what I did because my husband was still working and I had no one else who could help--my mom was over 80 and lived a great distance away. I was in rehab about 2 weeks. I originally got this suggestion from a revision forum I was a member of(flatbackers). I also suggest using a pain doc for the first few months. No one can fine tune pain relief safely like they do--and then taper off gradually when you heal.

                          A visiting nurse also came when I first came home after rehab. Try working all this out either with your surgeon or with the hospital discharge planner.That is their job and this is what I actually did. Transportation to the rehab place I did by ambulance.

                          I sent you a PM.
                          Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                          Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

                          Comment


                          • #14
                            Thanks for your suggestions. I will be going to rehab after the hospital. I will be in the hospital 8 days and then I will be going to a rehab.

                            I am feeling better today. I just wish that this week would fly by

                            Melissa
                            Melissa

                            Fused from C2 - sacrum 7/2011

                            April 21, 2020- another broken rod surgery

                            Comment


                            • #15
                              Hi Melissa,

                              I'm the one who lives out by Palm Springs. I wish I wasn't so far from you, or I could help a little. I haven't read your whole story, but I know this will be a revision surgery and you've been through a lot. And now with the added stress with your daughter, wow. I just wanted to wish you well. In fact, I hope everything goes extraordinarily well for you, from here on out. Sounds like it's way past time for that!

                              Lisa

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