problems with the pump

[brayden722]

Hi everyone, just came back from a lovely 2 and a half week vacation from the hospital (going to fire my travel agent lol) My baclofen pump catheter kinked or the pump malfunctioned and I went through severe withdrawal symptoms. The pump's alarm only went off once a day and it was so low it sounded like any electronic device I had at home, It took me over a week to realize it was the pump alarm. The neuro had me come I right away and I went into ICU right away and even coded while I was in receiving tests. I am now waiting to go back in and get my pump fixed. Been 3 weeks now. I know some may be asking themselves if it may not be better not having the pump. Good question. Answer to that is that I haven't been more flexible and free from walking devices and 7 different oral muscle relaxers in years since I had the pump implanted over a year and a half ago. No more afos, canes, kafos. I was walking on my own and even golfing and coaching again.

My question to all of you that have taken the time out of your lives to read this novel is have any one ever gone through this? I had to explain to many neuros and nurses what hsp was and even show them the pump. Even had 2 student nurses come in and do their final papers to receive their RN licensing on my condition (not that I am complaining about that haha). I was at a very well known hospital in Madison, WI and it amazed me about the lack of knowledge they had about the pump and hsp.

Anyway, just bringing this out there to see if any one else has gone through this or anything like it before.

Thanks everyone. Take care

Craig

 

[LouLou]

Craig - so sorry to hear you went through this pump issue. Happy to hear you're doing okay now and that you'll be getting the pump and/or catheter fixed. In December 2014, my neurologist and I suspected I may have something wrong with my pump also. I had a sudden increase of spasticity over my whole body. I supplemented with oral Baclofen 3 times a day with that helping. But, my doctor ordered me a catheter and pump dye study and it showed everything to be working fine. I believe it was a fast progression period of PLS as I generally felt unwell for several weeks. Since early January, after increasing the pump dosage, I've been doing much better. I've also had my pump for 1 1/2 years! Exercising and stretching almost every day has been very beneficial to me since the few bad months I had late last year. I'm feeling stronger and can move around better (although I use a walker). I understand about having to explain the pump and the disease to those not familiar with it and hope I'm not in a situation as you were. Best of luck to you Craig. If you would like, please private message me here for an update. LouLou

 

[brayden722]

Thanks for your response LouLou. Not much comfort when you have to explain to the people taking care of you what a pump is and the disease that you have I had early symptom signs such as double vision, dizziness, feeling a being in lala land but that is normal for me so I didn't really think anything was unusual lol Thanks again for your kind words and response. Craig

 

[Mike in Maine]

Craig,
Sorry to hear about your troubles, glad to hear your doing better. Got my pump in early Feb was living in Maine at the time and had to go down to Boston for the pump install due to no one in Maine that could do the pump maintenance. Much like Lou Lou I'm having to have mine turned up latter this month due to a sharp increase in spascity, I'm having to to take addition Baclofen orally. Like you I have found the pump to be a godsend, I'm walking a mile a day, put the cane up and generally feel better. Thanks for writing up your experience, I'll have to watch for that.

Mike

 

[Clearwater AL]

Mike, as you wrote, "I'm walking a mile a day, put the cane up and generally feel better."

You are so fortunate from where you once were. For so many... it stays the somewhat the same or gets worse. Keep doing whatever you're doing.