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  • Post Op

    Hello everyone,

    I am 10 months past surgery. I'm only working about 22-25 hours a week. I have a desk job and it really takes it's toll. I am fused from T3-L4. However, i developed massive blood clots in my lungs after surgery and my dr says i will never have full capacity of my lungs. I finish up with my lung exercises tomorrow and i still continue with physical therapy and walk 1.5-2.2 miles at least 4-5 times a week. My question is, that i am dog tired most of the time and my lower back hurts almost all the time. I've read that some of you are 4-6 months past surgery and feel great. Does anyone have advice for me? I try to keep the faith. I must tell you though that the scoliosis pain is gone for the most part. So that is a plus!

    thanks!

    dmb

  • #2
    I think everyone recovers at a different pace. I have always heard that one year postop is when you really feel "normal". You have had a complication and it is understandable that your recovery should take a little longer. I just went back to work after 5 1/2 months postop and I too am feeling the tiredness. I think the fact that you are walking so much is very commendable and will definitely help in your recovery. I have not been so diligent in my exercising as you! Keep up the good work and I wish the best for you.

    Comment


    • #3
      judyk.

      thank you for your well wishes! I also feel very very tight and have alot of numbness. Do you experience anything like that?

      dmb

      Comment


      • #4
        dmb....

        I was numb, tight, and exhausted for at least 6 mos. to a year post-op. I had surgery when I was 42. How old are you?

        --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


        • #5
          I'm also fused T3-L4 and had a lot of tightness in my lower back following surgery. My surgeon told me that getting back to my normal daily routine would help to loosen it up but at the 4-month mark, everything else was feeling great except for my lower back. It was just too stiff, and didn't feel right at all. I asked my surgeon to let me try physical therapy, something he rarely prescribes for his patients and he agreed. I felt an amazing difference within just 3 visits. My physical therapist was someone I had worked with before for other issues and was knowledgable about scoliosis and my medical history. The trust issue was very important to me as I was just so nervous about moving that area of my back in any way. After 12 visits, I was released from PT and have had no extended period of lower back stiffness since. I've joined a gym and keep up the exercises that I learned in PT...the exercise routine is part of my life now...

          I personally feel that if I hadn't had PT, I would still have the tightness in my lower back. PT gave me the confidence to move my lower back area more freely and properly and made me to use muscles that had not been used for months. It's what worked for me and might be something worth considering for you as well.

          Comment


          • #6
            I still have a lot of numbness in my back area but the feeling is gradually getting back. I do have some numbness on my upper right leg (when I touch it) which the doctor promises will get back to normal. And where my anterior incision was made it is still a little numb. In general, my whole back feels "tight" to me still. I think time is the answer to it gettiing back to normal.

            Comment


            • #7
              DMB - I was wondering if you would share with me the details of your lung clots. I am 3 months post-op and just was in the hospital with a PE myself. I am now worried about long-term complications from the PE. I am on warfarin/coumedin, and will be for some time. But, I am wondering if I have permanent damage, or what the standard of care is. (How long will I feel wheezing/rattling in chest/tired??) I am wondering what kind of specialty care you have had, and what kind of tests to indicate whether ther are post PE issues, like reduced lung capacity. (I am just in beginning phase of getting answers, and any help/advice/ways I can better advocate and educate myself are appreaciated.)
              Meg is Spinewhine
              31 years old with thoracic curve
              Wore Boston brace as teenager, but curve continued to progress.
              Surgery on 12/13/2005 with correction from over 55 degrees to under 25 degrees. (Ya baby!)

              The nitty gritty at:
              http://spinewhine.blogspot.com/

              Comment


              • #8
                Originally posted by LindaRacine
                dmb....

                I was numb, tight, and exhausted for at least 6 mos. to a year post-op. I had surgery when I was 42. How old are you?

                --Linda
                Hi Linda,

                I was 35 when i had my surgery. But i've always been in great phsyical shape. For the last 15 years or so, i'd walked 1.5-2 miles several times a week and about 4 years before surgery I trained at the gym with a trainer. I also did pilates a few times a week. I guess i'm just impatient with the recovery process and the tiredness is just terrible. I hate it! Thanks for you encouragement.

                Comment


                • #9
                  Originally posted by SpineWhine
                  DMB - I was wondering if you would share with me the details of your lung clots. I am 3 months post-op and just was in the hospital with a PE myself. I am now worried about long-term complications from the PE. I am on warfarin/coumedin, and will be for some time. But, I am wondering if I have permanent damage, or what the standard of care is. (How long will I feel wheezing/rattling in chest/tired??) I am wondering what kind of specialty care you have had, and what kind of tests to indicate whether ther are post PE issues, like reduced lung capacity. (I am just in beginning phase of getting answers, and any help/advice/ways I can better advocate and educate myself are appreaciated.)
                  Hi Meg!

                  I was home five days post op when i was getting more and more tired when finally i passed out on the toilet. My heart raced and heart, i thot it was going to pound out of my chest and i was sweating profusely. Both lungs were filled with blood clots. I was very fortunate that God wasnt ready for me because all my dr's said I was a walking miracle. Anyway, I too was on coumedine for seven months. Once i was released from the hospital, i was sent home with lovenox with the coumedine. Of course that was hard to get adjusted and i had to have my blood tested every week and then every two weeks and then once a month. Of course the hospital sent me home with a spirometer(one of those things you suck up) and even tho i am at 10 months post op, i am still only getting up to 2000. (and i think the highest is 3500). Then in january, he presribed me to do a nebulizer, which was a real pain in the butt. In fact, i just finished up with that saturday and returned it today. But i still do the spirometer. Then he started me in on lung therapy. All that entailed were some lung/breathing tests done at the hospital to measure some base lines and mine were ok. They said to just walk atleast 30 minutes and continue to do light pt. My surgeon wasnt crazy about the pt because he said he didnt want anyone touching my back. But i'm tired alot and wear down easily. It's frustrating but you gotta keep the faith!

                  I had chest x-rays and ct scans in the beginning to determine the blood clots and the occassional x-ray to see the progression of the clearing of my lungs. When i was hospitalized i also had a dobler study (like a sonogram on my legs). Plus the echocardiogram. I was hospitalized 9 days, where i spent 3 days in CCU and the other six days on the cardic unit. Just keep in touch with your dr and ask any questions you have, dont let anything go unturned. You dont want to risk anything! Walk, eat accordingly to the coumadin guidelines and if you feel short of breath or dizzy, please, please get to the ER. Here is my personal email, if i can be of further help. i apologize that this is so long.

                  Monique5963@aol.com

                  Good luck and let me know how you are doing! Monique

                  Comment


                  • #10
                    lungs

                    Monique:
                    Did you ever consult with a hematologist?--because what you are describing is usually not associated with scoliosis surgery. Some people have a genetic tendency to clot regardless of surgery/scoliosis.

                    It is not unusual to have some reduced lung capacity after anterior surgery because the respiratory muscles are cut during this approach-at least for the first 2 years. Mine is reduced as Dr. Boachie predicted but it does NOT interfere with daily living. I hike, climb stairs and do the treadmill almost every day. It is MUCH better than before surgery--also I am much older and some of this comes with aging. What I do need is a warm-up time with some strenuous activities.
                    K
                    Last edited by Karen Ocker; 03-06-2006, 02:09 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


                    • #11
                      Originally posted by Karen Ocker
                      Monique:
                      Did you ever consult with a hematologist?--because what you are describing is usually not associated with scoliosis surgery. Some people have a genetic tendency to clot regardless of surgery/scoliosis.

                      It is not unusual to have some reduced lung capacity after anterior surgery because the respiratory muscles are cut during this approach-at least for the first 2 years. Mine is reduced as Dr. Boachie predicted but it does NOT interfere with daily living. I hike, climb stairs and do the treadmill almost every day. It is MUCH better than before surgery--also I am much older and some of this comes with aging. What I do need is a warm-up time with some strenuous activities.
                      K

                      K,

                      No i did not consult with a hematologist. My surgeon told me the same thing tho, that out of all the patients he has done surgery on, i was only the 3rd one to have blood clots. As far as breathing i do feel much better, but i'm so tight and tired all the time. But my surgeon also said it would be a full year for recovery and then may some due to my set backs. I'm looking for some stretches do to as well, but i have to be careful.

                      Comment


                      • #12
                        I do know that I have a genetic predisposition toward clotting, a disorder called Factor V Leiden. Which helps a little, since I know more now what I am dealing with. I wonder if they ran the blood tests for you, Monique to see if you have any of the many genetic abnormalities that can make you trend toward clotting. (Helps in planning course of care, and prevention measurements)

                        Here's my deal: I had the doppler on my legs, no signs of a DVT. I had the spiral CT, which is how they found the PE. Definitely doing the lovenox/coumadin thing, and keeping my INR therapeutic. I am just worried that I am still having shortness of breath, heart palpitations, wheezing, rattling, sweating... Even though I didnt really have them when initially diagnosed with PE. It is just no fun. I thought that I would be getting better once on the thinners, but feel like I am getting worse. I am actually going to see my pulmonary specialist tomrrow b/c I am worried.
                        Meg is Spinewhine
                        31 years old with thoracic curve
                        Wore Boston brace as teenager, but curve continued to progress.
                        Surgery on 12/13/2005 with correction from over 55 degrees to under 25 degrees. (Ya baby!)

                        The nitty gritty at:
                        http://spinewhine.blogspot.com/

                        Comment


                        • #13
                          Originally posted by SpineWhine
                          I am just worried that I am still having shortness of breath, heart palpitations, wheezing, rattling, sweating... Even though I didnt really have them when initially diagnosed with PE. It is just no fun. I thought that I would be getting better once on the thinners, but feel like I am getting worse. I am actually going to see my pulmonary specialist tomrrow b/c I am worried.
                          Have you ever tried relaxing techinques? I know when I used to feel short of breath few years back, I'd feel worse when I took notice and started worrying over it, despite the fact my ox sat rate/heart/ect was perfectly normal.
                          30 something y.o.

                          2003 - T45, L???
                          2005 - T50, L31
                          bunch of measurements between...

                          2011 - T60, L32
                          2013 - T68, L?

                          Posterior Fusion Sept 2014 -- T3 - L3
                          Post - op curve ~35


                          Comment


                          • #14
                            Shortness of breath and the sweating is what sent me to the hospital and at those points is when they found that both of my lungs were filled with clots! PLEASE PLEASE see your dr asap, before tomorrow if possible. They are deadly. Please go!! Better safe than sorry. I dont mean to frighten you but you need to take caution. Please let me know how things turn out for you. I'll keep you in my prayers.


                            Originally posted by SpineWhine
                            I do know that I have a genetic predisposition toward clotting, a disorder called Factor V Leiden. Which helps a little, since I know more now what I am dealing with. I wonder if they ran the blood tests for you, Monique to see if you have any of the many genetic abnormalities that can make you trend toward clotting. (Helps in planning course of care, and prevention measurements)

                            Here's my deal: I had the doppler on my legs, no signs of a DVT. I had the spiral CT, which is how they found the PE. Definitely doing the lovenox/coumadin thing, and keeping my INR therapeutic. I am just worried that I am still having shortness of breath, heart palpitations, wheezing, rattling, sweating... Even though I didnt really have them when initially diagnosed with PE. It is just no fun. I thought that I would be getting better once on the thinners, but feel like I am getting worse. I am actually going to see my pulmonary specialist tomrrow b/c I am worried.

                            Comment


                            • #15
                              DMB - thanks for your concerned, I am concerned too. But I also don't know if it is just me being over-anxious. Question: After being hospitalized with my PE, I was let out of the hospital on 2/19. Since then, I continue tohave same/worse PE symptoms as when I was in hospital. I am sure the PE is still there, as it takes a long time to "dissolve". My question is how long did you have the PE symptoms? Just while in the hospital, or for how long afterward? I was thinking that once my INR was stable that my symptoms would diminsh, alas they are not. Not sure if that is standard or what. Definitely keeping my appt for this afternoon!!
                              Meg is Spinewhine
                              31 years old with thoracic curve
                              Wore Boston brace as teenager, but curve continued to progress.
                              Surgery on 12/13/2005 with correction from over 55 degrees to under 25 degrees. (Ya baby!)

                              The nitty gritty at:
                              http://spinewhine.blogspot.com/

                              Comment

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