My Recovery from Scapulothoracic Fusion Surgery

On May 12, 2015 I went to the hospital to get Scapulothoracic Fusion Surgery. If you are not familiar with this surgery, it is basically when the surgeon attaches your scapula to your ribs using wire and a metal plate. It’s a very invasive and somewhat risky surgery. It is not guaranteed that you will always get the results you wanted. Also, there are very few doctors in the world that are actually qualified to do this surgery. You want someone who has done it several times (this could mean as little as 15 times and that’s a lot for this surgery). My surgery was done by Dr. Higgins at Brigham and Women’s Hospital in Boston.

The first few days in the hospital were miserable. I woke up without any feeling in my right arm (the side I got the surgery on). It felt like pins and needles but when I touched it, I felt nothing. I was also in a lot of pain and on a lot of drugs (pretty loopy). They brought me into my hospital room where I was staying. They hooked me up to this machine that was connected to my iv in my arm. Every time I felt a lot of pain, I would just push a button and Dilaudid (stronger than Morphine) would flow through my iv, into my arm. I was also woken up every 2-3 hours so that the nurse could give me more pain medications. So those few days were pretty miserable.

They sent me home with a sling around my arm and a big cushion between the sling and my stomach. Here is a picture of it:

ALL-3102 Arm Sling with Abduction Pillow 2

I could take it off when I wanted to shower and if I needed to change which was great. The first week I pretty much slept all day long. With all of the meds I was taking, it was almost impossible for me to stay awake more than 30 minutes. I was in a lot of pain those first few weeks and all I could think about was how awful the next 8 weeks would be. Some days I would cry because of the pain and the fact that I could barely move anywhere around the house. I felt trapped inside all while it was beautiful outside.

After a few more weeks it was finally about 8 weeks since I got the surgery. I had an appointment with Dr. Higgins on July 1st. He said I could leave the sling on for another week or so and then take it off. That was the best thing I heard all summer. He said my incision looked great and so did my scapula/shoulder. In a few more weeks I had to make my first Physical Therapy appointment.

Here I am, 13 weeks after my surgery in my second week of Physical Therapy. My arm is still pretty stiff, so I can’t raise it to the height of my shoulder, but I’m getting there. It still hurts a lot if I try to lift it too high, but I’m hopeful that with a lot of PT, I will be able to put my hair in a ponytail again. Normal day-to-day activities do not cause me any pain. My scapula no longer sticks out and I am much more confident already. I am planning to get the surgery on my left shoulder done in the winter.

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11 thoughts on “My Recovery from Scapulothoracic Fusion Surgery

  1. Hey, I’m a 28 year old guy with FSHD. The lordosis and the scapular winging is the worst, right? I’m glad to have found your blog! I considered trying the surgery you just had, but never knew anybody who had it done. Tell me how it turns out please.

  2. Hey, I’m a 28 year old guy with FSHD. I’m glad to have found your blog as it’s rare to find others. Isn’t the scapular winging and lordosis the worst? I always feel so ridiculous looking lol. I considered that surgery you just had, but didn’t know anybody who had it done. Please tell me how it turns out. I’d love to talk more.

    Sincerely,

    John

  3. Hi Lexi (not sure if that is actually your name),

    I am a 28 year old female with FSHD, and I am about to get scapular fusion surgery in a couple of months to get my range of movement back. I read your blog, and I was happy to see that you are doing well after 13 weeks. I am extremely nervous, and I haven’t yet talked to anyone that has had this surgery. I know that you must be incredibly busy with your recovery, but if there is any chance you might be able to find a few minutes to chat and answer a few questions, than I would really appreciate it. My parents really want me to talk to someone that has had it done as well. My doctor has done the surgery quite a few times, but not on anyone with FSHD. I’m not sure if that matters or not. Anything you can share with me would be extremely helpful. Thank you so much! I wish you the best and hope that you are back to normal and moving freely soon.

    Kind Regards,
    Caroline

    • Hey there Caroline my name is glen Walsh I live in county cork in lreland, I got my first surgery done in October 2014 on my right side and was a total success, and got my left shoulder done only 2 weeks ago so it’s still early in the recovery period. If you would like to ask me anything about the surgery or recovery period I would be only to happy to share what I can with you don’t hesitate to email me. My email is glenwalsh17@gmail.com there is very few people to get this surgery done here in Ireland so I understand how you would be feeling about the whole procedure.

      Regards

      Glen

    • I am a 57 year old female with painful rhomboid winging as a complication of a cervical surgery that injured my dorsal scapular nerve. I am interested to know who is your surgeon who has done this for persons without FSH.

      Hope you are doing well,
      Karen

  4. I have had my left shoulder done 14 weeks ago in Belfast. Operation was not as bad as I though. I am getting physio now it can be painful as I can’t lift my arm up that high but hopefully I will get there soon.

  5. I had this surgery done in 2013. Lots of pain, tons of complications (chest tube, 2 broken wires and 2 broken ribs) but several years later it has helped manage the pain I used to have due to the extreme winging. Anyone considering this surgery should go into it with realistic expectations. You probably aren’t going to be able to lift your arm over your head. You will have the worst pain you can imagine and healing is long and hard. I was in a sling for 5 months and didn’t resume normal activities for probably a year. Would I do it again? Probably But I’m a slow learner. LOL But seriously, just make sure you are ready for the long road ahead and find someone who has done the surgery before with good results. Positive thoughts to all my FSHD brothers and sisters.

  6. Hi There-
    I’m typing you from the ER, way too many visits with severe pain in my scapula-
    Shoulder. I have had severe winging of the scapula and just found out I have Muscular Dystrophy. I have already had two lumbar fusions and Scoliosis, torn rotator cuff and now this. I have been holding off the surgery as long as I can but I think it’s time….. any advice would be great!
    Tricia Teitelman
    Twoman04@yahoo.com

    • Hi Tricia! If your shoulders are causing you that much pain and that many visits to the hospital, I think it is worth it! When you get the surgery, its going to be like 8 weeks of full recovery, but after that, things go back to normal. Make sure when you do the Physical therapy afterwards, that you actually do the exercises they tell you to at home. It is going to be worth it in the end! Also, if you can, try to see if you can get occupational therapy while recovering for the few 8 weeks. I found that my shoulder that I had OT for, is a lot more flexible than my other one. During recovery, a lot of times you may feel like you overworked your shoulder because it is in pain or something; that is not usually the case though. There were many times I thought that I messed up the fusion, but in the end, nothing had happened. Just try not to move it more than they tell you to. It is a long process, but its worth it and it will change your life! Just know that if you get both arms done, you are going to have 4 big scars on your back. I don’t mind, I feel like it is a representation of my strength! Good luck! Let me know if you ever have any other questions.

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