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Old 12-22-2003, 09:00 PM   #1
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coletteb123 HB User
tight muscles in legs getting worse, help!

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Hello everyone. I'm new to the msg board thing, so have a heart. I'm 28 years old with spastic diplegia. I had an operation to lengthen hamstrings/heel cords when I was 6. During the past few years my muscles, especially behind my knees, have gotten considerably tighter. In the past I have walked by myself with no help but now I am so nervous about tripping over my own feet and falling down that I always hold onto someone's arm or a wall or whatever's available to remain up when walking. I have recently been through the gait lab and doctors tell me they have not seen anyone get so much tighter so fast before, and they aren't sure why. They have told me about the baclofen pump but after a trial for it I have formally decided I don't want to go that route. Does anyone know of any other methods of making my situation better, meaning loosening muscles with surgery similar to what I had when I was little (even though at this point I'm not growing anymore as I was then), or some other way of making a significant improvement in my walking. This is killing my self-esteem and keeping me from going out much. Even going shopping at this point is scary!!! Please help as soon as you can. Thank you.

 
Old 12-28-2003, 10:05 AM   #2
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lastramy HB User
Re: tight muscles in legs getting worse, help!

You might want to try looking into botox injections. I have mild hemiplagia that has gotten tighter over the years and now I am getting botox to calf area and hamstrings. I am really tight behind the knee too.

Something to think about.
Lastramy

 
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Old 12-30-2003, 07:35 PM   #3
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prisc1125 HB User
Re: tight muscles in legs getting worse, help!

Hi coletteb123,
I am 35 with "mild" spastic diplegia. Never had surgeries or knew I had CP until 4 yrs ago, when I started what turned out to be a series of 4 surgeries (last one this past Feb). on my R foot for spastic clubfoot.

Since that time, I've noticed my calf to be tightening more and more, extending behind the knee and into the hamstring. This is on the operative leg. In fact, I had my FDL lengthened in Nov 2000 as part of surgery 2 and had it relengthened in Feb 2003 since it retracted 5 cm. I had botox between and was active......still not sure why I tighten so easily.

My left leg is also getting tighter and there is a noticeable bend that no amount of stretching can hold straight for long. The odd thing is that when I was a baby, it was the left foot I had clubfoot with casting and now that foot is fine......go figure.

Lastramy and some others have had luck w. botox and it might be worth trying. Unfortunately, I cannot sing its praises from my experiences. I saw your mention of the pump and I never broached that subject w. my docs. My husband and I might start a family in the future so I don't want this obstacle hindering our chances. I've read posts of adults having luck with the pump although gait retraining is huge.

I've been having lots of issues w. hips and my calf/toes so I know where you are coming from in trying to identify best options. I am happy to be of more help if needed.....

Good luck!
Cheers,
Prisc1125

 
Old 01-03-2004, 09:23 PM   #4
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coletteb123 HB User
Re: tight muscles in legs getting worse, help!

Quote:
Originally Posted by lastramy
You might want to try looking into botox injections. I have mild hemiplagia that has gotten tighter over the years and now I am getting botox to calf area and hamstrings. I am really tight behind the knee too.

Something to think about.
Lastramy
Thanks for answering. Do you know if a separate injection is needed in each area of the leg where there is tightness? Or can it work for a large area? I would imagine I would have to get at least 2 each time I go to an appt, one for each leg, but I wonder if it would be even more to cover hamstrings quads etc. I'm not a needle fan but if you have seen much improvement with what you've been getting maybe I could be brave?

 
Old 01-03-2004, 09:33 PM   #5
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coletteb123 HB User
Re: tight muscles in legs getting worse, help!

Quote:
Originally Posted by prisc1125
Hi coletteb123,
I am 35 with "mild" spastic diplegia. Never had surgeries or knew I had CP until 4 yrs ago, when I started what turned out to be a series of 4 surgeries (last one this past Feb). on my R foot for spastic clubfoot.

Since that time, I've noticed my calf to be tightening more and more, extending behind the knee and into the hamstring. This is on the operative leg. In fact, I had my FDL lengthened in Nov 2000 as part of surgery 2 and had it relengthened in Feb 2003 since it retracted 5 cm. I had botox between and was active......still not sure why I tighten so easily.

My left leg is also getting tighter and there is a noticeable bend that no amount of stretching can hold straight for long. The odd thing is that when I was a baby, it was the left foot I had clubfoot with casting and now that foot is fine......go figure.

Lastramy and some others have had luck w. botox and it might be worth trying. Unfortunately, I cannot sing its praises from my experiences. I saw your mention of the pump and I never broached that subject w. my docs. My husband and I might start a family in the future so I don't want this obstacle hindering our chances. I've read posts of adults having luck with the pump although gait retraining is huge.

I've been having lots of issues w. hips and my calf/toes so I know where you are coming from in trying to identify best options. I am happy to be of more help if needed.....

Good luck!
Cheers,
Prisc1125
Hi, thanks for answering. May I ask what you did not like about botox?

My reasons for not wanting that pump that doctors seem to LOVE is that I don't want this big thing sticking out of my stomach (I am skinny so even more so) that needs maintenance forever and ever amen. Also, what I want so badly is to look better, less of a freak (yes I am hard on myself)--not having something else about me looking odd. I had a trial of it and felt so awful with the drug in my system--was numb and had no control over my legs at all. I couldn't walk at all; I was so upset looking across a room and feeling like it was such a huge distance to have to go.

Write back if you wish. Thanks again. -Me

 
Old 01-04-2004, 01:42 PM   #6
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prisc1125 HB User
Re: tight muscles in legs getting worse, help!

Hi Colette123:
The botox injection was guided with an EMG device/heavy-gauged needle to ensure that the right muscle was being targeted. I have a really skinny calf -- more so then -- and the doctor literally plunged the needle well into the gastroc. My entire leg went into what felt like a shock -- from foot to hip. Then, the doc injected the FDB on the sole of my foot using the EMG again. My entire foot shook and seized. I was sweating a storm and literally biting a pillow so as not to scream. I limped out of the office as my calf was quite painful. After all that, I did not get the desired result of the toes and calf relaxing. In less than a year, I had another surgery (the Feb one in 03) to relengthen the FDL (originally lengthened in Nov 2000) and re-release the toes (originally released in Mar 01). I have the calf and toes back at it again, but the botox injections are not an option!!!! Even to this day, I have a sort of "botox button" in my medial gastroc that is quite painful to touch.

As for the pump, I've never had it mentioned as an option. Lots of docs ask me about doing the anti-spasticity meds and every time I deny. Not to be difficult, but because I don't like to walk around in a fog and have the side effects do me in more than the spasming! I had a horrible reaction to a small dose of oral baclofen and cannot imagine how I'd fare with the pump. Like you, I don't think I could deal with the high maintenance required of it not to mention the physical discomfort of having that puck in my gut.

Sounds like you are dealing with similar feats.....

Prisc1125

Last edited by prisc1125; 01-04-2004 at 01:43 PM.

 
Old 01-04-2004, 01:55 PM   #7
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musicmaker650 HB User
Re: tight muscles in legs getting worse, help!

Quote:
Originally Posted by coletteb123
Hi, thanks for answering. May I ask what you did not like about botox?

My reasons for not wanting that pump that doctors seem to LOVE is that I don't want this big thing sticking out of my stomach (I am skinny so even more so) that needs maintenance forever and ever amen. Also, what I want so badly is to look better, less of a freak (yes I am hard on myself)--not having something else about me looking odd. I had a trial of it and felt so awful with the drug in my system--was numb and had no control over my legs at all. I couldn't walk at all; I was so upset looking across a room and feeling like it was such a huge distance to have to go.

Write back if you wish. Thanks again. -Me
Hey girls,

how about exercise and some sort of physical thearpy. Swimming is great. You and I can't expect to stay flexible (if we ever were) as we age. Afterall, AB's get stiff with age too. I'm a 53 year old male, and I was born with Spastic Paraplegia CP. Is Spastic Paraplegia an outdated term? Diplegia "Di" means two, right? I have had my share of surgeries and both my legs are affected, and my right arm coordination is poor. I can walk using 2 canes, and I'm at home in a wheelchair too. I am the wise CP grandfather in this Forum... I think.

 
Old 02-10-2005, 06:05 PM   #8
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anjadoug HB User
Re: tight muscles in legs getting worse, help!

Hi:

I am a mother to a 2 1/2 year old boy who has mild to moderate spastioc diplegia. He is scheduled for his first round of botox tomorrow. Needless to say, we are a bit nervous.

Right now our son is receiving PT twice a week, OT once a week, and speech once a week. Is there anyone out there who can share with us what we should, or could do for our son? Right now is is walking with the assistance of his walker, but he still has the scissor gait.
Thanks

 
Old 02-10-2005, 08:46 PM   #9
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prisc1125 HB User
Re: tight muscles in legs getting worse, help!

Hi Colette123 (hope I got this right!)
I guess the experience of having the needle plunged into an already thin calf was my first trauma with it. There was no sedation to the spot either, which I'd hoped for. Then having the leg freak out (foot, too). And now, after an undesired result -- ok, failed? -- to have this button or bruise deep in my calf as a constant reminder. I was still at the beginnings of CP treatments when I tried botox, so I entered with high hopes, having been told of its benefits. None of this happened for me in the end.

At this point, with so many scars on my foot/ankle, and a super thin calf, I have to learn not to dwell on getting that stuff perfect. I am sure you look great....I know what you mean about being hard on oneself. With the CP and gait issues, it is easy to scrutinize ourselves in ways similar or worse to what non-CPers do. Perceptions get warped.....been there and still there.

Hope this helps....ask away!

Prisc1125

 
Old 02-11-2005, 05:07 PM   #10
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lastramy HB User
Re: tight muscles in legs getting worse, help!

collette,

Did you get your botox questions answered?? I get 2 shots in my gastroc muscles in my left leg. One in the lateral muscle and one in the medial. They are just regular injections as if you were getting a flu shot except the needle is a bit bigger. I also get one shot in the soleus muscle.
And working my way up the leg I get 4 shots throughout the hamstring area, and 2 shots in the adductors.

The only really painful one was in the posterior tibialis. They used an EMG guided needle and it was pretty painful. I had that shot because my foot was turning in quite a bit when I walked. I have hemiplegia CP.

I used to get all this and the hip flexors as well, but then my leg became so weak that I couldn't hardly move it at all. I got even more fatigued when I walked, so we stopped the shots there. Now I can use my leg better, but I have more pain and ROM problems.

I still think they work for me, and a little bit of advice, get a massage right after the injections if it is at all affordable for you. I find the injections work much better after a massage.
Actually I recommend massage for a lot of CP issues. It is extremely beneficial towards fatigue. I always feel like a pool of jell-o when I am done.

Lastramy

 
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