Knee replacement – help me!

    • August 16, 2017 at 3:57 am

      Hi I’m looking for information regarding knee replacement and how a GBS patients fare with this. I had GBS when I was 12 years old. Worked full, had 2 beautiful daughters and just plowed on. Fast forward to now, my knees are shot,ankles,calf muscles are AND have been weakened by
      GBS. But now it is worsened because the lack of knee support.Funny…I was disabled but never showed it,now I truly am and show it. I’m 55 years old and move like I’m 90. Cane and all! I had GBS in 1974- no advanced treatment was available. So PT & OT for 8 years. While I am very grateful for my life but really need support to get answers to help my current situation. I’m tough and willing to fight another battle, just would like to know how much ammo I need and my odds.
      Thanks for any support or suggestions!

    • GH
      August 16, 2017 at 5:30 pm

      The usual reason for this operation is osteoarthritis — the cartilage in the joint breaks down. Is the reason it is recommended for you?

      GBS affects the motor nerves, primarily, and can leave someone with permanently weak knees. I don’t know whether this would increase the liklihood of needing this surgery, but I don’t think it would be a reason to avoid having it.

      It is best to discuss the matter with the surgeon who would do the procedure, giving him (or her) the history of your knees.

    • August 16, 2017 at 5:43 pm

      Yes I have OE in knee and under knee cap. Bone on bone and no cartilage there. Cortisone shot and gel injection did not help. I have lots of pain and instability because of the knee issue. My other knee is also giving me issues. Having been adolescent when I got GBS, and ankles weak, I’ve wear my knees out with my poor gait. Thanks for your information.

    • August 16, 2017 at 5:49 pm

      I also have expressed my concerns and he feels it will eliminate my pain but my muscles will still be what they are. But I was active, bike riding, dancing before. Now I can barely walk, so I believe I have to get this and just work very hard to gain strength and stability.

    • December 22, 2017 at 6:08 am

      I agree with doctors, too risky for replacement and may damage my mobility situation even more.

    • December 22, 2017 at 1:50 pm

      Look into Rituximab as an alternative treatment for OE. It may also help with GBS/CIDP symptoms. Use the forum search to learn more about Rituxan.

    • December 22, 2017 at 3:12 pm

      Thank you John will look into it.

    • December 22, 2017 at 3:13 pm

      ” Jim., sorry 😊

    • December 23, 2017 at 3:23 pm

      By 1973 I had all the cartilage in my left knee removed (prior to arthroscopic surgery). I got GBS in (October) 2012. When I was struggling with my PT I complained about my knee pain. My doctor (I think he was orthopedics) told me to build up my quads. I can’t believe the difference. It took at least 6 months, but for me it made a huge difference. I sill work my quads hard most every day, but my knee feels better than it has for 40 years.

    • December 24, 2017 at 6:40 am

      Eric did you have the IVG or hemoglobin transfusion?
      What method did you use for the quad strength rebuild? I am doing spin bike 45 minutes, I don’t stand, too painful. Thanks for your help.

    • December 24, 2017 at 12:18 pm

      To start I sat in a chair and did 3 sets of 10 leg extensions every day. After awhile I added 2 and 1/2 lbs weights. Once that became easy I added 3 sets of 15 getting up from a chair using only my legs (I kind of hold my arms in “I dream of Jeanie”). Finally, I was able to do deep knee bends, 3 sets of 15. Almost forget I joined a gym and do 3 sets of full leg extensions every other day. I think it took close to 2 years to get where I am today.e

      As for IVIG, I was really lucky. The emergency room doctor had seen a GBS case before. After determining that I had not had a stroke he suspected GBS. Within 48 hours IVIG was administered. I realize the good fortune I had so it helps me grind through the work.

      I hope this helps.

    • December 25, 2017 at 4:24 pm

      Thanks Eric, it seems that the IV treatment helped to stabilize your muscle weakness. I haven’t been able to do knee bend/squats since I contracted GBS in 1974. Or stand on tip toes, jump. My calves show atrophy as I was not able to regain those muscles. Even after 8 years of PT. In 2015, I was able to get up from the floor without using my hands. The doctor was impressed. Then fluid buildup in my knees, tightness and pain set in. I also experience greater instability. I had always had stability issues, like plush carpet, rocks, sand, it was hard to stand without leaning on something. But this new symptoms of steps, harder to do and lifting my leg to get in SUV. Doctors say knees are wore out from walking 42 years by compensating my muscles for lower ones that I could not build back muscle as nerves we’re not conducive. So unfortunately our outcomes are very different. I have been active for years, bike riding, bowling,walking theb dog on cold wonter nights and was very active and strong. I just did things alittle different and compensated for muscles that did not come back with the muscles that were stronger. To say the least I am very disappointed in my new demise. My weakness was very profound. I walked 9 mts after being in hospital for 4 months. I worked 36 years, had 2 babies, normal delivery, full term. No issues. Just trying to understand what or why. I see see my EMG results. Probably try to see if bracing would help. I live in Michigan so walking in snow is tough. I wear calf high boots that are like ski boots. They help. Sorry so long, really would like to hear from any GBS patients from 1974 to 1980’s. Curious about their progress. Thanks😊