LouLou
Active member
- Joined
- Jul 11, 2011
- Messages
- 91
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2011
- Country
- US
- State
- Washington
- City
- Woodinville
Hi folks - I have made the decision to have the Baclofen pump surgery. Just two weeks from today I am having this done
After 2 years of using oral Baclofen (which has helped the spasticity a lot) - I am just plain tired of being so tired and the other side effects it causes. My neuro told me about the pump when I was diagnosed just over 2 yrs. ago. At every visit after that he saw how spastic my legs still were even with 45 mgs of Baclofen a day and talked to me about it again. Finally in June I had a long appointment with another neurologist and occupational and physical therapists. They all agreed that I was a good candidate for the pump. So I had the trial injection about 3 weeks ago and it was successful! I was so happy that it worked and I could really feel the difference in my feet, legs, hands and arms afterwards. I still had strength to resist movements the PTs were doing, yet did not feel too loose or wobbly! I also did not feel sedated for the first time in a long, long time! So my neurosurgeon and other neuro discussed the outcome and we scheduled the surgery. I am feeling optimistic about this and also feel lots of anxiety about the surgery and recovery. My hope is to have better movement, a lot less fatigue and start to do things again that I miss doing - like cooking and spending more time with my husband and son. And...feeling up to going out more besides work! I know this is not a cure, but will give me better quality of life. I understand it is a big commitment to deal with having this new "body part", but the outcome will be worth it. I am ready for a change. I told myself in the beginning that I would not let PLS manage me - but I will manage it. I'd love to hear your experiences with the pump.
LouLou
After 2 years of using oral Baclofen (which has helped the spasticity a lot) - I am just plain tired of being so tired and the other side effects it causes. My neuro told me about the pump when I was diagnosed just over 2 yrs. ago. At every visit after that he saw how spastic my legs still were even with 45 mgs of Baclofen a day and talked to me about it again. Finally in June I had a long appointment with another neurologist and occupational and physical therapists. They all agreed that I was a good candidate for the pump. So I had the trial injection about 3 weeks ago and it was successful! I was so happy that it worked and I could really feel the difference in my feet, legs, hands and arms afterwards. I still had strength to resist movements the PTs were doing, yet did not feel too loose or wobbly! I also did not feel sedated for the first time in a long, long time! So my neurosurgeon and other neuro discussed the outcome and we scheduled the surgery. I am feeling optimistic about this and also feel lots of anxiety about the surgery and recovery. My hope is to have better movement, a lot less fatigue and start to do things again that I miss doing - like cooking and spending more time with my husband and son. And...feeling up to going out more besides work! I know this is not a cure, but will give me better quality of life. I understand it is a big commitment to deal with having this new "body part", but the outcome will be worth it. I am ready for a change. I told myself in the beginning that I would not let PLS manage me - but I will manage it. I'd love to hear your experiences with the pump.
LouLou