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Cerebral Palsy Message Board


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Hi Lastramy:
Sounds like you have had better luck with botox than myself. That is awesome! I had it done to my calf and foot last April and got nothing from it. Ended up having surgeries to those areas (FDL tendon and toes) this past Feb.

If I may ask -- is the mild spasticity affecting the joints to the extent that surgery will ever be necessary? This had been the case for me and I began wondering just how mild my spasticity was/is.

My adductors and hip flexors are especially tight, though it is possible that this is partly due to my new gait and subsequent effects on the muscles.(Had three major foot surgeries in the last three years). Takes the body a bit to adjust. The PT felt lots of resistance and I had an MRI done last November since the flexors were not easing up at all. Sleep w. heat packs.

Like you, all the walking and biking at the gym and outdoors do nothing to add bulk to the right leg. My left calf is benefitting!

Water therapy has helped me alot. I swim and find that the kicking has helped loosen the ankle joints and strengthen the legs. The hips can be sore after, especially if I use flippers for extra power. I did water therapy as part of my original gait training and it has been a mainstay of my exercise regimen. Give it a try!

Try Pilates too for core strengthening. It has done TONS for me! I do the Stott mat method, but there are lots of different methods.

All the best!

PRISC1125
Lastramy:

I like my team of doctors and they have had great discussions with me. My foot ortho has really been a great support and has helped connect me with the right specialists. My endocrinologist is the same. Problem is, no one really knows what to make of certain things. I'm told that I am doing all the right things with exercise and that it is hard to tell what to expect. I saw a hip ortho in the fall and had an arthrogram MRI done because my hips were very painful and not responding to anything. He said any intervention he'd try would make matters worse. I've managed to compensate well and undoing that could incur more risk than benefit.
I did see a neurologist last fall and did not get from it what I expected, other than a new diagnosis of spastic diplegia vs hemiplegia. He said there was little he could do and thought I was too mild for botox (go figure!).
You are right -- adults are kinda on their own with this and it is frustrating. We don't have the typical hip problem where a certain protocol can be followed. So much is available to kids (which is great), but no one knows how to deal with adults, especially mild ones. (and each mild case is very unique!)
Also, I've had many PTs in the last four years and not one of them really knows much about treating CP. My recent PT, while good at typical ortho injuries, finally conceded that he rarely sees a case like mine. We have no way of telling whether I am progressing or what is "good enough." Really hard to gauge.

The botox peaked last May after 6 weeks and I got maybe 1 day of relief. The toes still curled and the calf began cramping later last year. I spent the better part of last year at various specialists and can honestly say that I am completely burnt out now. All of this parallel to looking for a new job and trying to change careers. Again, the teetering between managing the CP and "pretending" that I am normal with the stresses in life we all must face.

I just threw myself into researching CP and spasticity from the get-go and armed myself with as much knowledge of anatomy and physiology, esp with respect to CP and the foot. It also helped that my ortho had fellows and residents in the appts and I learned over and over again about my case so I had oppts to develop my knowledge. I established early on with the docs that I was very serious about getting through this all with maximum benefit. I went in with a positive attitude and maintained it throughout. It was important to me that I was considered a team member vs a "case" and this has gone a long way to getting the desired outcome.

Do you have foot issues as well? Or, is it mainly the hips/back/quads? I had that last June and went through a round of myofascial release therapy. I'd researched it and my doc encouraged me to try. Did not quite work for me but it has for others. Like you, I began having problems going a mile and my posture was awful. It is entirely possible that gait changes due to botox contributed. Also, I have a leg length discrepancy which contributed to the back pain (something to inquire about). My foot ortho noticed it and rx'd a lift in my shoe. Seems to have helped. The harsh weather change in September set off another round of hip pain. Then the past round of surgery and compensating with the left leg.

I guess the ticket is surrounding yourself with knowledgeable and resourceful people who are willing to go the distance. It took me about four years to find it and the rewards have been fabulous.

I cannot wait to get to biking outdoors again w. my husband. He got me a mt. bike for Christmas and it has been my motivator to recover!

Hang in!
Prisc1125
Hi Lastramy and everyone,
Funny, my husband and were talking about that "too private to mention" area and recalling a time last year when we were at my ortho. I was having awful hip pains in the adductor area and my ortho wanted to test it. He and my husband were at either side of the exam table and my ortho was explaining how to stretch my hips. He pulled my leg out and I yelped. The moment was hysterical in that both he and my husband turned around and looked at me in shock! He then had me feel in the adductor area (very embarrassing since it was so close) and I said I thought I felt a bone. Turns out, it was a tendon, but very very tight! Does anyone else have this for their adductor/groin muscle?

Lastramy, for my toes, my great toe seems to want to pull down and "shrink" and does so automatically, esp when I am just standing. The calf goes off too. I also have had the toes go off, and they still do despite the recent procedures. I had the botox in the arch as well. Hmmmm.......connection too strange!

Has anyone who has had tendon release surgery been informed that their tendons are tethered? (esp FHL and FDL). Trying to get to the bottom of it so I can consider this as yet another part of the package!

I am more than happy to help anyone w. anatomy info.

Hang in all!

Prisc1125
Hi Lastramy,
I told my doctor that I was burnt out and have hit a wall. Gee, it has been 3 yrs of all this plus the two or so that it took to find a doc that actually listened.

My hesitancy too for this is the failed outcome from botox and the inevitable surgery that was supposed to have been avoided. My mind seems to play all decisions against that experience when it comes to taking more chances.

I decided over the day to see whether driving and swimming continue to set off the spasms (likened to wringing out a wet rag). If lots of things seem to be stressors, that is all I need to take the next step of talking to a rep. I guess I am trying to determine the extent to which these spasms are bothersome before encumbering myself with more treatments. (Thankfully, the hips are not doing their painful bit; just tight)

My husband and I have already taken our summer vacation but I love your idea. I've been trying to distract myself in other ways w. volunteer work and job searching. Went biking this weekend. Just need to find a niche that offsets the other stuff.

I appreciate your encouragement and support on this. It feels great knowing that someone truly understands the mental and physical complexities involved. It can be hard talking to a husband who is so close to the situation and doesn't understand the minutae. I try to spare him because I don't want to have it consume our relationship. Already taken a huge chunk out of us over the surgeries.

I don't think the brace idea would work here and in fact my doc has not mentioned it. Glad it is bringing you such relief.

Hope your forecast is right!

A buddy who honestly feels your pain,
Prisc1125
Hi Lastramy,
Ok, I am supremely frustrated right now. I saw my ortho yesterday and could see he was visibly frustrated and stumped. The cramps are bad and he doesn't think doing more releases is the right approach because he doesn't think the tendons can take more. I felt like I was being difficult, but I didn't want to deal with any of the options offered: botox again, baclofen implant (fellow suggested), and, the worst, neurosurgery to deactivate the nerves in the muscle. This is supposed to have the same effect as botox, but more permanent. The botox did nada but lead to more surgery. I scratched that out of my mind. I finally asked if I could just suck up and he didn't think I should. (True). Add to that my hips (he asked about and I said they hurt even though I am doing Pilates moves to encourage ROM), pains in my foot, off-kilter thyroid levels, and gagging issues that I need to see a doc about next week. Needless to say, I was stressed last night. In fact, for most of Weds and Thursday, I was in contact w. my endo trying to troubleshoot why my TSH levels were off the charts. So, by the time I got to yesterday, I had no mental energy level for considering options.

That IS surprising that you keep getting the run-arounds in a place where you have esteemed doctors (have no idea where you are but going w. what you said)
Even though I feel I am pushing the limits on things w. my current ortho, I don't have the energy at times to start over. I had to weed through some winners to get here and I cannot bear to do it again.

So, I really have some big decisions looming. Right now, I can only deal with one battle at a time.


Gotta go. You are right, we are gonna get through this. In my mind, I really have no choice but to keep forging. I mean, what is the alternative?

Hang in girlfriend. I really wish we could email offline....I have so many sites to send and I think of you when I am reading them....

Cheers,
Prisc1125
Hi Lastramy
Gosh is today a newsy one.
For starters, my bday are the last four characters of my username. I will be 35 (a speed limit bday!). My mom's is in March, too.

I went for a barium test today and had to drink the stuff. This is to see why I gag and wretch. Lately, the prilosec has NOT been working and my back and stomach hurt daily. I mean, even to touch!

On top of that, the neuro my ortho was trying to reach called in response to the my ortho's request and I might be checking into a gait test with him. I brought that up to my ortho and he suggested we inquire w. the neuro. I see him the day after tday.

Then, my husband found out that the surgery he had two weeks ago to repair his severed tendon didn't take. It was some local ortho that totally botched but since it was an emergency, we had no choice. Now he has to have the botch job fixed and tendon repaired. We are hoping my ortho can squeeze him in.

I cannot do yoga anymore with my foot stuff. I do pilates and love it. I reached a plateau w. yoga -- and my teacher had us inverted alot which makes me nauseated.

No anti-spasticity meds for me at all. I really don't want to deal with those right now or ever preferrably.

Yeah, I am getting worn out between the calf/foot/hips and stomach. Plus working and helping my husband. He stands to be laid up a month so he has to juggle school and work as well.

No one ever said life was fair.

Thanks for the hug. Much needed!

Glad you are finding success with botox and massage.

Cheers,
Prisc1125

Hey LionKat
Lastramy is being way too generous with her kind words...I am just glad that I can be of help somehow. Makes me feel great to know that even if a small part of what I've discovered -- through experience or research -- can bring benefit to anyone else in this fight.

Regarding the hips, funny thing.....I had HUGE amounts of pain last year (hard to pinpoint when they really started; surgery recoveries didn't help) and my PT told my ortho that I had significant hip dysfunction. My foot ortho sent me to a hip ortho who did an arthrogram MRI. While the pictures came out pretty clean, they did detect some "interesting" findings....nothing too pathologically awful (ie subluxation). But, the CP has definitely taken its toll on them. I have had internal rotation and the hip flexor tendons get so tight that I feel they want to snap. Triggers mainly include weather changes, but some exercises and even PT can be troubling. The paradox is that while I have noted dysfunction, they are too mild for botox. Stand to lose more than gain. Hmmm.....

By all rights, I should be in PT too to manage this. As Lastramy and I have shared in the past, there is nothing like having a skilled person do the stretches and monitor progress. Right now, my life is hectic with my husband in a cast and my own calf/toe, stomach and thyroid issues....not to mention holding a computer job in between. If I am going to do PT again though, I want to find one that specializes in CP cases. Mostly, mine have done sports and "typical" ortho cases so I bring a huge challenge to the table for most. My previous PT really tried hard for me but conceded when I plateaued that I am beyond the scope of his skills. I respected his saying so, because another PT fudged his way through and I had to call the shots of when I felt we were regressing. So, I finally realized that if I am going to do this PT thing, I want to do so where I get the most bang for my buck and time. Trick is finding that......I don't meet alot of the textbook "definitions" of a CP case. Or, PTs who are willing and able to take on my case.

When is your back surgery? Are they inserting a bar to straighten it? (I've read about this approach). Hang in there....keep me informed and I am here for questions!

Cheers
Prisc1125





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