14 replies to this topic

[davebahm]

I met with a neurologist a few days ago and she said I am a good candidate for the pump, pending the results of the screening test. I'm 38, have spastic quadriplegia CP, use a walker and have always been very active. Never had surgery except wisdom teeth and vasectomy (this surprised the doctor). She said that because I have exercised all these years and do use my leg muscles to walk, my recovery should be shorter than average because I don't rely on spasticity to keep me standing. I work full time for a magnet manufacturer as a graphic designer and do a lot of freelancing from home. I plan to speak with my boss tomorrow and let her know about this (discuss what our work load is and FMLA options). I'm trying to get projects at home wrapped up also (I will have a booth at an art show in a few weeks as well). The doc said I need to plan to have down time for at least a few weeks after the surgery (yikes!). So, I'm guessing doing the screening in the next few weeks with the surgery sometime in May.

I'm nervous, but tired of the increasing back and leg pain, plus the limited range of movement. How in the world will I function in 10 or 20 years if I stay this way? My wife has been a huge support, and we have enough of a nest egg that I can take a month or so off work. She is able-bodied, but had ulcerative colitis and her colon removed last year as part of a procedure called J-Pouch. Two major surgeries (one to remove the colon, build a pouch from part of the small intestine and install a temporary ileostomy bag, and the second surgery to reconnect the small intestine to the pouch and remove the bag), with painful recoveries after both. Her strength amazed me, and she's doing so well today. This encourages me to do the pump, but since I've never had real surgery, I am apprehensive.

Those of you who have had the baclofin pump for a few years or more... how are you doing? How was your pain and range of movement before and after the surgery, and today? I can't reach my feet to put my shoes on anymore, and am experiencing more stiffness as the weeks and months pass. I'm 5'8" tall and weigh 175 lbs, so I don't have excess body mass to contend with. I've also been on the elliptical machine 4-5 times a week to exercise my legs and stay in shape. I am healthy and have pretty good family health history, so I'll be around for many years (I have a great grandmother who is almost 108 and still kicking!).

Thanks for letting me share. Any advice you have would be appreciated.

[Lillehammer94]

Wow! It's incredible that you've not had any surgeries related to CP! I have spastic diplegia and am also very active but have been unable to stay out of the operating room for as long as you have (8 surgeries) congratulations!

You actually sound like a perfect candidate for the pump. The fact that you don't use your tone but use your muscles to walk instead is fantastic, that's the number one thing that will help you in recovery.

I've had my pump since Oct. 2003 and have seen vast improvements with it. My range of motion has been my biggest improvement and I sleep a lot better too as my spasms are greatly reduced. I walk semi-independantly and it took a while for me to get used to using just muscle but I think you will be fine.

Good luck!
Gretta

[davebahm]

Gretta,
I placed a reply here last week but it looks like it was lost with the hacker incident. My screening is scheduled for April 6th. I wanted to wait until after the first of the month because my employer's healthcare coverage changes companies then. How often do you have to have your pump refilled and how does that work with your insurance? I just hope all of this will be covered, minus the copays of course.

How is your range of motion now? I can't bend over and touch my toes anymore, so my wife puts my shoes and socks on for me. I'm wondering if the pump will get in the way of me bending over like that since I am not overweight and this thing will probably place a lump on my waistline.

Thanks for responnding. I read your other posts and hoped to hear from you.

Dave

[lori2050]

 davebahm, on Mar 25 2006, 03:37 PM, said:

Gretta,
I placed a reply here last week but it looks like it was lost with the hacker incident. My screening is scheduled for April 6th. I wanted to wait until after the first of the month because my employer's healthcare coverage changes companies then. How often do you have to have your pump refilled and how does that work with your insurance? I just hope all of this will be covered, minus the copays of course.

How is your range of motion now? I can't bend over and touch my toes anymore, so my wife puts my shoes and socks on for me. I'm wondering if the pump will get in the way of me bending over like that since I am not overweight and this thing will probably place a lump on my waistline.

Thanks for responnding. I read your other posts and hoped to hear from you.

Dave

Dave- I too have CP plus I had a stroke about 3 yrs ago. I had a pump implanted last summer and has been great when it has worked. I had it orginally placed in my abdomen but in Dec had it moved to my back because it kept on flipping when I would bend over. I am very active.

Recently I encountered some addition problems but it may not be pump related. Anyway I go about 3 months until I have to have my pump refilled but depends on your dosage. I would say that it takes about 3 weeks to recover, I mean get your strenth back.

Best advice, Find a competent dr and you should have no problems

Lori

[davebahm]

Yikes! Both of your posts concern me. Are you using the 3 inch round pump that's about 3/4" tall? That's the one in the videos - is that considered the generation 1 pump? My neurologist said they're using generation 2 pump now, and she made it sound like it's smaller and rectangular in shape. Which pump do you all use?

[Lillehammer94]

Dave,

Sorry it took me so long to reply, the board was down and I'm a college Freshman so I usually only get to check the board on weekends.

My range of motion now is still better than it was before the pump but not as good as it could be since I've started college. I stay stressed out a lot keeping up with my 5 classes which causes my spasticity to increase. When I stay on top of stretching though my range of motion is quite good. I will be having surgery on my foot this summer but this was expected and placing the pump actually delayed the operation by two and a half years.

I am quite tiny (about 90 pounds) and can bend down to tie my shoes without causing problems with the pump. It does stick out quite a bit but you'd never know it as my regular clothes cover it well. I have not had to buy bigger sizes to accomidate the pump and I have the old one, yours will be smaller.

As for insurance and refills I have Medicaid which pays for them. I get the generic Baclofen and my refills cost about $500. I'm not sure what the copay would be but that would be a good question to bring up at trial since different doctors charge different prices.

Refills for me are every 5-6 weeks but that's because I'm on the lowest concentration (500 ml) which is basically the concentration they put children on. I become sick at high dose/concentration levels and so 500 ml works best for me. I think the normal concentration for adults (depending on the severity of the spasticity) is 1,000 or 2,000 ml which would spread the time between refills out to every 3 months. Dose level is the other factor that determines the amout of time between refills and my dose level is also low at 161 mcg. The higher the dose the faster you will depleat the medicine and need a refill. It's all very individualized.

Hope this helps,
Gretta

[davebahm]

Thanks, Greta... very interesting.

Wow...you are light. It makes sense that you have a lower dosage. I am 173 lbs. but pretty average build.

I was part of an art show over the weekend and spoke with the president of the art guild today whose son is 19 and has had the pump for 10 years (he has CP). My wife and I are having dinner with them on Wednesday so we can ask a bunch of questions. One thing Jackie told me is that after Tim had the pump installed, his back muscles no longer supported his back and he developed scoliosis, eventually having to get vertebrae fused. She said this is one possible complication the doctors don't bring up, so to ask about that when I do the screening on Thursday. I already have developed some minor curving of the lower spine, so this concerns me. However, Tim uses a wheelchair and has a lift in his parents' van, so I wonder how active he really is and if his muscles get exercised (I haven't met or seen him yet). Since I do get a decent amount of exercise, hopefully that won't be an issue (though I hope this loosens up my back a little bit).

Dave

[Lillehammer94]

Just taking a moment before class here. I lost about 25 pounds after the pump which is not common but I can't tollerate large doses of Baclofen and kept getting sick. Once we figured this out my dose was lowered and I remain stable. About the scoliosis, it was a preexisting condition with me before the pump as I've had a minor 12 degree C curve all of my life. Remarkably it has not progressed over time and having the pump put in did not complicate things. Your friend is correct, it is an issue the doctors don't bring up. The risk of developing the condition is much higher in kids who get pumps than adults because they are still growing. You mentioned muscle weakness which is an issue for most people post pump but will probably be less of an issue for you. Physical Therapy will help you regain stregnth.

Gretta

[davebahm]

Okay, I had the screening test Thursday morning (my wife Jennifer was with me) and here it is 48 hours later. A few observations:

- They decided to give me about 80 micrograms instead of 50 because of the extreme stiffness in my legs. At the two hour point, I was able to walk around, slowly and somewhat difficult, but my wife and the PT were astonished and said I wasn't scissoring at all. Apparently I was walking almost as a normal AB person would. At the four hour point I could barely move my legs, though they did have the strength to hold me up. I went home after about 7 hours, and I had to sit in my desk chair with wheels and my wife and son push me into the house. We have a ramp in the garage, and there was no way I had the strength to get up it on my own.

- I wasn't able to take steps again until about 7:30 that night. That 80 or so micrograms lasted a long time, and my feet were still floppy yesterday morning. Lots of lower back/sciatic pain in both legs the first night and in the morning.

- I had a very difficult time urinating the day of the procedure until after it wore off (11:00 or so that night it was mostly normal). While at the hospital especially, I had to "bear down" like having a bowel movement just to get it flowing...and had to keep doing it until I finished. I've never had such a difficult time urinating (even when I've had a few UTIs, I didn't have to force it out like Thursday - and my bladder was full too!).

- I had a temp of 101.8 about 8:00 Thursday night. I laid down but was very cold and Jen took my temperature. I had a headache too, but I was too stubborn to call the doctor (Jennifer was a little worried at that point). I took three, 200 mg Ibuprofin and laid down again. An hour later it was down to 100.9 and the back pain had subsided. Friday morning I woke up with a decent amount of lower back and sciatic pain, and a temp of 99.8, so I took the same dosage. I walked carefully, because if I twitched too much my lower back had brief stabs of pain.

- I just woke up a while ago and have incredible pain in my lower back. This is different from the aching from the procedure - that is pretty much gone. I've had trouble with low back pain for ten years, and this is the worst ever (sciatic pain shooting into both legs, when it's usually just my left leg, and not all the time). I got some coffee and am feeling better as I sit and type this. Typically my back pain is worst when I get up, but I was scared this morning because it was so extreme. My legs are back to normal, spasticity and all. I'm kind of relieved.

So, that's where I stand (no pun intended). The doctor said I'm a great candidate for surgery and the Baclofin worked well... probably a little too well since I couldn't move my legs for so long. But I was amazed how relaxed my muscles were when the PT and doctor worked with them while I was laying down. Very little spasticity and resistance. The back pain worries me, though. I wonder if she hit the disc in my spine or something. I'll do the surgery eventually, but I'm just not ready now. The only surgeries I've had are wisdom teeth and vasectomy, so this is a big deal for me.

Dave

[meme]

hi dave i am having my test monday not looking foward to it.

[davebahm]

Meme... please don't worry. I feel completely back to normal now. I'm not sure what happened to my back last night and this morning, but I took two Ibuprofins and felt great an hour or two later. I expect the pain to return while sleeping, but that's just my back. I'll call my doc on Monday and tell her about the pain and see what she thinks. The thing is, the Baclofin worked, and better than we expected! Once I have the pump in, the small dose all the time will probably work great. If they can get me like I was after two hours of the injection, it will be great because I could tell I was building muscle walking around and not relying on spasticity. Good luck!

[Lillehammer94]

Glad to hear all went well Dave,

I had terrible low back pain after my trial and a really severe spinal headache but after they subsided I was fine. It's really great that your test dose worked so well, most of your negative symptoms sound pretty normal but it sounds like the positive results were worth it.

Gretta

[willow]

 davebahm, on Apr 3 2006, 02:35 AM, said:

Thanks, Greta... very interesting.

Wow...you are light. It makes sense that you have a lower dosage. I am 173 lbs. but pretty average build.

I was part of an art show over the weekend and spoke with the president of the art guild today whose son is 19 and has had the pump for 10 years (he has CP). My wife and I are having dinner with them on Wednesday so we can ask a bunch of questions. One thing Jackie told me is that after Tim had the pump installed, his back muscles no longer supported his back and he developed scoliosis, eventually having to get vertebrae fused. She said this is one possible complication the doctors don't bring up, so to ask about that when I do the screening on Thursday. I already have developed some minor curving of the lower spine, so this concerns me. However, Tim uses a wheelchair and has a lift in his parents' van, so I wonder how active he really is and if his muscles get exercised (I haven't met or seen him yet). Since I do get a decent amount of exercise, hopefully that won't be an issue (though I hope this loosens up my back a little bit).

Dave

The scliosis complication interests me. I have had back pain for some time now and had an MRI of my lumbar spine in Feb. It showed some lumbar scoliosis along with two buldging disks degenerative changes and eak muscles in the lumbar area. the rehab. doctor {one I don't see anymore} said it was no big deal. I was going to have my neurosugeon look at the films, changed my mind, but now I might have him check them out again when I see him next month.
LA

[davebahm]

LA,
I met with the surgeon yesterday. He's primarily a back surgeon, but he's done five of these pump procedures and had great results. He took x-rays of my back, and it was completely straight from the front view! I was amazed. I just left a voice message for him and asked about the bulging disc I had when I saw him four years ago, and why I have a hard time now sitting up straight without using my left arm/hand to hold me up (Since my back is so straight, why has this been a problem for the last few years? I lean to the left when sitting, and didn't have this problem until a few years ago.). I wish I had thought of these questions yesterday when I was there. He did note my right hip is a little higher than my left, because one leg is shorter than the other. Nobody had ever told me that before! My wife and I saw a chiropractor for a year a while back, spent (wasted) some big bucks, and he said he could fix my hips over time. He treated me for a year and I felt no better. Over $3,000 down the tube! The doc yesterday said the only way to "fix" my hips is to break the shorter leg and lengthen it over time. No thanks!

So, I am encouraged, and the surgeon is excited to see what kind of progress I can achieve. He even said I might be able to get rid of the walker and use canes. I am not expecting that at all... that's pretty significant because I've always used a walker... but if it will allow me to not be so tight and move around easier, I'll be happy. He also was amazed that I've never had surgery for the CP and said I am in very good shape. That was a morale booster.

I sent my resume for a job opening last week - an opportunity I didn't want to let get by. I'm waiting to see if I get an interview (will probably start calling tomorrow to follow up and show that I'm serious about the opening). I'm very qualified for the job and I like the company, so if I get the job I will probably put the surgery off for a while. If I don't get it, I'll probably get the surgery in June.

Dave