Going with the Baclofen pump

[LouLou]

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

 

[Schmutz]

LouLou,

I don't have a pump and in fact had SUCH a sleepy reaction to Baclofen that I stopped taking it. I do , however, totally identify with your reaching a point of having to try something new. I wish you the best of luck with everything.

 

[AKmom]

I don't have the pump either. I have become a little immune to the effect of oral baclofen I guess. I do not feel tired from it necessarily. Although even without it I am exhausted from just being upright. So maybe I do not know the difference. Anyway, good luck on your surgery and new equipment. There was someone here about a year ago who got one, haven't heard any updates from him in quite awhile.

 

[LouLou]

Thanks for the good wishes! I attended our monthly PLS support group today. There are two other women in our group that have the Baclofen pump. It is so encouraging to hear their experiences. This has helped me so much! I've been quite anxious about the surgery, but after talking to them again today, I feel so much better. There is such a difference between the amount (micrograms) that one of the ladies uses compared to the other. One uses 4 times more! This is so true with the oral Baclofen as well. I take 45 mgs a day and am so tired from it, where another lady in the group takes 80 mgs and does not experience too much fatigue. She has been taking Baclofen for 12 years.

Many blessings to all -
LouLou

 

[RooRoo]

I will be so interested to hear all about the procedure (good and bad) and how it works for you. I am such a chicken that I can't decide what to do...but I am tired of falling!

 

[wendya432]

I hope that it works well for you. I have just started the oral and it makes me so incredibly sleepy, on top of the fatigue I already have. But I know a lot of people with MS have the pump work really well for them.

 

[LouLou]

RooRoo, falling is a big reason I'm doing this! I have fallen so many times in the past two years. Luckily only bruised myself and have not broken anything. Falling is scary and when you know you're going to fall the spasticity worsens. It's like slow motion and you know you can't control it. You be careful.

LouLou

 

[Bad Balance]

Yes;
Please keep us updated

 

[LouLou]

Hi friends, It has been 2 weeks since by Intrathecal Baclofen Pump surgery. I am healing well and started to feel the benefits of my new body part. The surgery and first week of recovery was more than I anticipated. I had 3 incisions - one on my abdomen where the pump was inserted one on my left side and one on my lower spine where the catheter was placed. I was very reluctant to look at the incisions until this week. For the first time in 2 years I do not feel sedated! It's a great feeling. I am still protecting my body as one does after surgery, but can feel the spasticity has lessened in my legs! I have a bit more in the mornings, and will have the dosage turned up on Wednesday next week. The morning after surgery I had a hard time standing up, so the doctor turned down he dosage by 50%. 2 hrs. later I was walking down the hall with a walker! I am very optimistic that this pump is right for me.
Even though the recovery was a bit rough, I am healing well and getting stronger every day. I started easing up on the pain med last week and this week just took 2 pills. Tylenol works for the back and abdominal pain when it comes. Bending, twisting and turning is uncomfortable still and I need to wear an abdominal brace at all times except while sleeping for 6 more weeks to help hold the pump in place. I have one more week before returning to work part-time. I need to get out and drive and walk more which I plan to do this weekend with my husband.

All in all, this is all good! My surgeon, doctors, and nurses were awesome at the University of Washington Medical Center! Take care and may God Bless you all. Lou Lou

 

[Bad Balance]

Wonderful news !

 

[Maddy]

Hi, I'm dying for an update. I've been considering a pump for a couple of years now, but I'm apprehensive to say the least. I spend most of my time in a manual wheelchair although I can stand, transfer and walk ( not functionally) with a walker. I'd really like to hear how you are doing now. Thanks for sharing your experience.

 

[LouLou]

Hi - It's now been almost 6 weeks since surgery. I am feeling better than I ever imagined I'd feel. Did not expect this so soon! The incisions are pretty much healed and the abdominal area still gets sore at times, but is much better. I can now feel with my hands where the pump is under my skin and have become one with it! I have had 2 increases in the dosage - the first one of 10% did not do much, but a week later - the second one made a big difference in my walking! That was a 20% increase. I can walk without dragging my feet and I stand much taller. My coworkers have all noticed the difference. At home - just walking around the house - can't really see the difference, but in an open area I really notice the improvement. Tomorrow I go back for another increase as I'm having more spasticity in the a.m. and late in the afternoon. The pump can be programmed to give you more or less at certain times of the day. I am not fatigued like I was before! I'm off of my oral Baclofen and Diazepam. I go to bed at night with no meds and sleep without it being drug induced. I wake up in the morning refreshed - not with a drug hangover (grogginess). I am so happy I had this done. If you want to hear more just let me know!

LouLou

 

[AKmom]

that is wonderful to hear LouLou!

 

[Bad Balance]

Great news

 

[Bad Balance]

So Loulu,

What would you say is your total recovery time...from the operation date until now?

Thanks