I hope you are having a good start to the new year.
I wondered if others had experience with CIDP progressing post-surgery. I had a laparoscopic hysterectomy (less invasive) in December and was off for 3 weeks (holiday shutdown and vacation) to rest.
I felt pretty awesome for those 3 weeks considering, but I think it triggered the CIDP which is now become evident this last week. I am getting noticeably weaker in the legs and saw some odd symptoms (feet getting red and itchy in a warm shower) return. My IVIG was Tuesday; so I believe I will see the impact next week.
Pre-surgery: My neurologist estimated a 10-20% chance that surgery would exasperate my symptoms and cause me to set back. My nurse said almost all her neuro patients have seen setbacks with surgery, given what stress does. Almost a year from the onset/diagnosis, I was at ~75% strength from pre-cidp state. I developed a hope of future remission in fact, because I haven’t seen any symptoms at my 4 week cycle. I definitely had endurance issues, but I conducted workshops standing 50% of the day (with some repercussions) and drove 4 days a week an hour and half back and forth (3 hours in the car). I had to conserve energy or rest in between, but my reflexes also returned. I was starting to feel that whatever endurance issues I had were more from residual damage caused at the onset, still healing or permanent.
I know I have to allow for rest and there is a lot going on internally that will require healing, whether I feel it or not. At 2 weeks, I was cleared to return to work. My work continues to be accommodating, but I also try to push through. Not sure what the right answer is.
I remember needing about six weeks to recover from a hysterectomy before I even had CIDP. Please listen to your body and keep in touch with your doctors.
I am realizing now that my body is a good tell & reminding myself that I have to be my best advocate. Pre-surgery, my neurologist didn't think a setback was likely (possible). Given my current state, she said it is possible the surgery triggered my symptoms. She doesn't think extra IVIG treatments, which she just ordered, will interfere with internal healing.
My OBGYN, who knows of my CIDP, cleared me at 2 weeks to drive, go back to work, light walks. I was feeling awesome until week 3, when the CIDP became noticeably active. I am over a week out from IVIG with no improvements. From the OBGYN, I am only officially restricted on lifting, etc.
A lot of us have experienced this in one form or another. The ability to get coordinated care/recommendations is hard and you have to advocate with your knowledge. I should have taken it easy on my own and thought through this logically. So, I am putting restrictions on myself now. No choice on going to work, but I have arranged for drivers for a few weeks and have been on rest at night and weekends(that my 6 year old will allow:) .
Hopefully, it will turn the road with these additional treatments.
It seems like the more my body has gone through, the longer it takes to heal. I had my hysterectomy following five major surgeries for cancer. The hysterectomy was unrelated. Since I didn't need the problems, we decided my uterus and ovaries needed to go too:) I had two near death experiences during the surgeries. Once a body is jump started, there are more side effects like slow healing. I was thinking the hysterectomy was going to be the breeze of all of my surgeries. It triggered all sorts of problems, mostly fatigue and not being able to get comfortable. I read an entire book flopped over an ottoman. During surgery, they pulled on my leg and inflamed my sciatic nerve. You just never know what is going on during a surgery, unless you're floating on the ceiling and watching:)
Take care of yourself! I hope your six your old like to color next to you.
JanD
dac1223 said:
Thanks JanD!
I am realizing now that my body is a good tell & reminding myself that I have to be my best advocate. Pre-surgery, my neurologist didn't think a setback was likely (possible). Given my current state, she said it is possible the surgery triggered my symptoms. She doesn't think extra IVIG treatments, which she just ordered, will interfere with internal healing.
My OBGYN, who knows of my CIDP, cleared me at 2 weeks to drive, go back to work, light walks. I was feeling awesome until week 3, when the CIDP became noticeably active. I am over a week out from IVIG with no improvements. From the OBGYN, I am only officially restricted on lifting, etc.
A lot of us have experienced this in one form or another. The ability to get coordinated care/recommendations is hard and you have to advocate with your knowledge. I should have taken it easy on my own and thought through this logically. So, I am putting restrictions on myself now. No choice on going to work, but I have arranged for drivers for a few weeks and have been on rest at night and weekends(that my 6 year old will allow:) .
Hopefully, it will turn the road with these additional treatments.