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Andrew's knee reconstruction surgery

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Dolly (Andrew's mom) Find out more about Dolly (Andrew's mom)
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  • Andrew's knee reconstruction surgery

    After 6 very long months, we are finally seeing an end to Andrew's blown knee problems! He will be having reconstructive surgery on Tuesday the 19th. He will be the first surgery in the morning. We have to be there by 6:00 AM. Should be fun getting a constantly fatigued teenager up at 4:00 AM!!!

    I am very nervous about this, but also glad to finally be seeing an end to it. We had a ton of problems just finding a hospital that would do the surgery. There needed to be a cardiac unit at the hospital that was doing the surgery and a cardiologists present. First thing was to find a hospital with both a cardiac unit and an orthopedic surgeon. We found that, but they refused to take him because he was a "pediatric" heart patient and they only had adult cardiologists! With the help of both our hometown hospital and Andrew's pediatric cardiologist's office, we did finally manage to get a hospital that will do the surgery. However, they also do not have any pediatric cardiologists, only adult cards. nor do they have any HCM specialists. But it was the best that we could do! (They DO have an ICD specialist there though!)

    SO......... we had 4 1/2 hours of pre-op yesterday. Not only the "usual" pre-op stuff but also meetings with this adult cardiologist and anesthesiology due to his special situation. (HCM and ICD).

    Surgery is expected to be about 2 1/2 hours, however we were warned it could turn into more if they come across unexpected damage. Due to his ICD they were not able to do an MRI, so they are kind of going in there unsure to the extent of damage! They do know for sure on three areas that were blown (through physical testing) but not sure if that is all.

    This will be a combination surgery of both open incisions and arthroscope surgery. We were told along with his two scope wounds he will have about a 4 inch incision running vertically down his knee. We were also told it is a very long (6-9 months)and painful recovery. They said in addition to the anesthesia that he will be given a femoral nerve block. This is an injection that will completely numb his leg for anywhere between 12- 16 hours. They do this to help reduce the immense pain the first few hours when he wakes up after surgery.


    We also found out that they will be shutting off his ICD for the surgery. they will shut it off just before starting surgery and turn it back on right afterwards.

    SO I guess we are all set!

    One additional note...............coincidently, his heart clinic called yesterday morning and they want us to do a CareLink phone transmission of his ICD Monday morning. His ICD battery has been on the low end for about a year now. PLEASE keep your fingers crossed he doesn't need that replacement surgery within the next month or two now also!!!
    Dolly~
    mom to Andrew(HCM) 21 years old
    Diagnosed \'95 age 5
    Myectomy \'96 age 6
    ICD implant \'99 age 9
    First ICD shock (X2) \'04
    ICD replacement surgery \'05 age 15

    *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

  • #2
    You sure have a lot going on right now! Know that I'll be thinking of you both during next week and please keep us posted as you can.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      I hope and pray all goes well and that the surgery turns out to be less painful and less extensive than they think.

      Rhoda

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      • #4
        Dolly, Please keep us posted. Wishing you the best, Linda

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        • #5
          Thinking of You

          Wow! Andrew has had to deal with a lot! We are thinking of you and sure hope all goes great! We hope that his recovery will be painfree and he'll do well. Keep us posted! Janet
          My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

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          • #6
            Andrew

            Hang in there ok, my brother had knee surgery 3 weeks ago and now is out fishing a little he is 43 and he tore the cartlidge in his knee jumping into a boat so take it easy and you will be up and going before you know it

            Shirley
            Diagnosed 2003
            Myectomy 2-23-2004
            Husband: Ken
            Son: John diagnosed 2004
            Daughter: Janet (free of HCM)

            Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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            • #7
              Thanks everybody for the well wishes!

              Shirley, Andrew's surgery is more complicated then a cartlidge surgery. One of the main things he will be having is an ACL reconstruction. Instead of getting a graft from a donor, they are going to take ligament and bone from his knee cap area (thus the incisions) to "make" a new ACL graft out of, then drill holes into his femur and tibia, insert the graft and then secure it all with screws. Getting the graft from his own body is a longer recovery then if it were a donor graft, but the final outcome is a stronger grafting. Considering he is young and a boy, it needs to be strong! He also has a crushed meniscus plate (that can hopefully be repaired to avoid arthritis complications in the future) and possible ruptured MCL that may need repair.

              He has been told it will up to 2 months before he is even walking well. 4 months before he is able to do moderate activity and a year before he is cut loose to do as he pleases.

              Thanks again everyone!
              Dolly~
              mom to Andrew(HCM) 21 years old
              Diagnosed \'95 age 5
              Myectomy \'96 age 6
              ICD implant \'99 age 9
              First ICD shock (X2) \'04
              ICD replacement surgery \'05 age 15

              *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

              Comment


              • #8
                Dolly,

                I do hope that all goes well for Andrew. Grafts are tricky and do take awhile. I had my left wrist reconstructed 18 years ago and they used the bone from my left hip and plated it and screwed it all together, leaving a space for bone to bridge across and put a cast on top.. Long recovery 5 months before I was clear to use it and a lot of therapy before that to retrain and strengthen the whole package. I can not imagine what it would have been like if I had to walk on it!

                I will be thinking of him.

                Pam
                Dx @ 47 with HOCM & HF:11/00
                Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                Lead failure,replaced 12/06.
                SF lead recall:07,extracted leads and new device 2012
                [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                Genetic mutation 4/09, mother(d), brother, son, gene+
                Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                Comment


                • #9
                  Dolly,

                  I know what you are going through on trying to find doctors to operate on a knee with HCM. I had an accident at work almost 2 years ago now. I did a quick turn I felt and heard a pop in my right knee. Worker's comp told me that since I didn't fall down or actually hit something it wasn't work related. So, I went to my own ortho guy he did the physical exam and said I definatly have a torn meniscus and possibly a ligament tear as with Andrew cannot do an MRI because of the AICD. He said he could fix it (he's the ortho for the Orlando Tragic oops I mean Magic!) but was scared to death of the heart condition and my many complications. He said if I could get cardiac clearance and one of them there then he would do it. But, apparently after he spoke with my cardio the consensus was walk on it until you can't walk anymore. It has already limited me quite a bit. No more roller bladeing just too painful and some days after a lot of standing or walking it is killing me the entire night. I'm just not too thrilled with injuring my knee more to the point they will finally do something! I am also facing the same situation with an ovarian cyst they will not do anything for it until the pain gets to the point I cannot function.

                  At this point I'm pretty much over doctors who are too scared to do the job!

                  I hope all goes well with Andrew! And don't worry about the AICD being turned off during the surgery they will have defib pads on him just in case anything goes wrong and a rep is usually there as well. At least, that is what happened with my hernia operation last year

                  Mary S.

                  Comment


                  • #10
                    Mary, thanks for sharing your surgery "complications" with me! It really was a fiasco trying to get this surgery arranged. Many days I didn't know whether to laugh or cry after another round of a dozen phone calls and no solutions, just more hassles!

                    Right from the very begining when they said surgery was needed I called Andrew's PC and asked if he would be ok for this surgery and if there were any certain cautions or possible problems we should be aware of as far as his HCM goes. His response was "I honestly don't know myself. I have never had an HCM patient who needed a major surgery like this, so I have never run into this before!" And when I mentioned they would need to shut off his ICD his response was "Well, I wouldn't think they would do THAT! What if he needs it during the surgery?!" So it was obvious he really had not ever had a patient go through a surgery other then cardiac related. I really was surprised by that!

                    And then there were the couple dozen people I have had to deal with in arranging this surgery that have NO CLUE about what was going on, so I would have to sit and explain every single thing to them. (I can't tell you how many times we have been asked by clinic/hospital staff there why Andrew needed to see a cardiologist for an orthopedic surgery!) Just the other day when we were at the pre-op appointment with the surgi-center the lady going through the pre and post op information with us came upon a note that he had HCM. Then she says "Oh. What is that? A heart problem?" and "how do you pronounce that?" and "could you tell me breifly what exactly that is, can you explain it to me?" Mind you this was about the third time that day I had to go through it all!!!

                    I can't wait until this is over! It has been a fiasco from the get go
                    Dolly~
                    mom to Andrew(HCM) 21 years old
                    Diagnosed \'95 age 5
                    Myectomy \'96 age 6
                    ICD implant \'99 age 9
                    First ICD shock (X2) \'04
                    ICD replacement surgery \'05 age 15

                    *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

                    Comment


                    • #11
                      Dolly, good luck to Andrew and you too mom. It is harder on moms. I am sure he will have a good recovery I work for a physical therapist and we do a lot of teens and they seem to bounce back good. Youth is wonderful. I am sure all will go well. Please post as soon as it is over.
                      Midge

                      Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                      ICD&Pacemaker 1996
                      Heart transplant March 19, 2004 @ Mayo Rochester
                      Mom of Kaye.

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