mn9
07-05-2004, 09:31 PM
I am a 31 year old female with partial CP. I was diagnosed with CP at 14 months. I have recently been diagnosed with patellofemoral pain syndrome in my right knee which is the side that is affected with CP. I also have chronic inflammation in that knee. :confused: Is there anyone else out there that has been diagnosed with the same thing that can help me out in what to expect?
Sponsor
lastramy
07-05-2004, 10:03 PM
Mn9,
Hi! I am very interested in your knee pain as I have been getting quite a lot myself. I am 39 with spastic hemiplegia (L side).
What kind of pain are you having??
I have lots of chronic infammation in my lower back and I am on celebrex for that. It may be something to look into for your knee.
How did they come up with your knee diagnosis????
Lastramy
Hi! I am very interested in your knee pain as I have been getting quite a lot myself. I am 39 with spastic hemiplegia (L side).
What kind of pain are you having??
I have lots of chronic infammation in my lower back and I am on celebrex for that. It may be something to look into for your knee.
How did they come up with your knee diagnosis????
Lastramy
mn9
07-05-2004, 10:29 PM
Mn9,
Hi! I am very interested in your knee pain as I have been getting quite a lot myself. I am 39 with spastic hemiplegia (L side).
What kind of pain are you having??
I have lots of chronic infammation in my lower back and I am on celebrex for that. It may be something to look into for your knee.
How did they come up with your knee diagnosis????
Lastramy
lastramy.
I have sharp shooting pain with popping and cracking. It feels like bone rubbing on bone from having no cartilage in the knee. The doctor says I have some arthritis build up because of there being no cartilage there. I went to the doctor end of April because the pain the knee was too much. He took some x-rays and that's when he discovered the arthritis and diagnosed me with patellofemoral pain syndrome. Because I went for 2 months before going in to see the doctor, I am now paying the price. They are currently trying to treat the inflammation with Neproxen and pain with Tylenol. I was also in PT to try to regain strength in that knee and foot. They are also running blood tests to see what the underlining cause is. The only test that comes back irregular is the inflammation test which is elevated. It is a mutual frustration, because no one has any answers yet. Good luck with yours and get it checked out ASAP. Let me know what they say about yours. :)
mn9
Hi! I am very interested in your knee pain as I have been getting quite a lot myself. I am 39 with spastic hemiplegia (L side).
What kind of pain are you having??
I have lots of chronic infammation in my lower back and I am on celebrex for that. It may be something to look into for your knee.
How did they come up with your knee diagnosis????
Lastramy
lastramy.
I have sharp shooting pain with popping and cracking. It feels like bone rubbing on bone from having no cartilage in the knee. The doctor says I have some arthritis build up because of there being no cartilage there. I went to the doctor end of April because the pain the knee was too much. He took some x-rays and that's when he discovered the arthritis and diagnosed me with patellofemoral pain syndrome. Because I went for 2 months before going in to see the doctor, I am now paying the price. They are currently trying to treat the inflammation with Neproxen and pain with Tylenol. I was also in PT to try to regain strength in that knee and foot. They are also running blood tests to see what the underlining cause is. The only test that comes back irregular is the inflammation test which is elevated. It is a mutual frustration, because no one has any answers yet. Good luck with yours and get it checked out ASAP. Let me know what they say about yours. :)
mn9
jillw
09-09-2004, 03:51 PM
Lastramy & mn9,
I'm familiar w/ the pain & inflammation & have been told it's arthritis. Doctor said I have the knees of a 60 year old, I'm 35! Nine yrs ago I had surgeries which made it possible to wear footrests. Prior to that, my legs & feet got caught on everything. I'm sure that didn't help the situation. Anyway, I take Robaxin 150mg x 4 daily as needed. It works well for me & is not addictive. Let me know how it works or if you have tried it before.
I'm familiar w/ the pain & inflammation & have been told it's arthritis. Doctor said I have the knees of a 60 year old, I'm 35! Nine yrs ago I had surgeries which made it possible to wear footrests. Prior to that, my legs & feet got caught on everything. I'm sure that didn't help the situation. Anyway, I take Robaxin 150mg x 4 daily as needed. It works well for me & is not addictive. Let me know how it works or if you have tried it before.
lastramy
09-09-2004, 07:32 PM
Hey guys!
Thanks for the input there. I have had iflammation problems in the knees, hip and back. My x-rays come back normal though. I had a spinal epidural for the back issues because I had lots of pain when trying to get in and out of a a chair. It was basically antiinflammatory meds put in right at the site of pain as apposed to going throught the whole system. It worked!
I take celebrex now. I thought it wasn't really doing much untill I stopped for a few days and WOW was there a difference.
If you have any problem with the low back or hip or gait issues, so says the docs at the spine clinic. Then you will absolutely end up with knee problems over time. The knees just take too much abuse where walking is concerned.
But hang in there both of you.
I was taking naproxen for inflammation but it didn't really work for me. If it works for you then great. If it doesn't and you want to try something different, ask for celebrex or vioxx. They are in the same drug class as naproxen but they are less harmful to the stomach lining over time.
Gotta go, keep in touch!
Lastramy
Thanks for the input there. I have had iflammation problems in the knees, hip and back. My x-rays come back normal though. I had a spinal epidural for the back issues because I had lots of pain when trying to get in and out of a a chair. It was basically antiinflammatory meds put in right at the site of pain as apposed to going throught the whole system. It worked!
I take celebrex now. I thought it wasn't really doing much untill I stopped for a few days and WOW was there a difference.
If you have any problem with the low back or hip or gait issues, so says the docs at the spine clinic. Then you will absolutely end up with knee problems over time. The knees just take too much abuse where walking is concerned.
But hang in there both of you.
I was taking naproxen for inflammation but it didn't really work for me. If it works for you then great. If it doesn't and you want to try something different, ask for celebrex or vioxx. They are in the same drug class as naproxen but they are less harmful to the stomach lining over time.
Gotta go, keep in touch!
Lastramy
JellyRJFan
09-09-2004, 09:26 PM
If you have any problem with the low back or hip or gait issues, so says the docs at the spine clinic. Then you will absolutely end up with knee problems over time. The knees just take too much abuse where walking is concerned.
Oh man... I've always had some pretty big gait issues, and in recent years have developed back problems (scoliosis and lordosis). Since I moved to a high-humidity climate about 3 weeks ago my hips have been going crazy. I was hoping to avoid further knee problems besides the turning in and hyper extension, but I guess it's good to know now that I have more ahead of me. Sometimes I feel like an old woman and I'm only 18!
Oh man... I've always had some pretty big gait issues, and in recent years have developed back problems (scoliosis and lordosis). Since I moved to a high-humidity climate about 3 weeks ago my hips have been going crazy. I was hoping to avoid further knee problems besides the turning in and hyper extension, but I guess it's good to know now that I have more ahead of me. Sometimes I feel like an old woman and I'm only 18!
prisc1125
09-27-2004, 03:40 PM
Hi Mn9,
I am having the same pain myself, though I have not gotten a dx of it.
I am 35 with spastic diplegia CP dx'd four yrs ago prior to what became 4 reconstructive foot surgeries to correct spastic clubfoot R. Given what I started with, the surgeries helped a great deal. However, in the last several months, I have been having a heck of a time with shinsplints first (rx'd naproxsyn, but stomach could not deal) and over the summer, progressive knee pain on the R.
I have a bony knob on the lateral (outer) knee and it hurts to palpate and I tend to have a shearing pain in that area. My PT/massage person first noticed my knee drifting outward with my foot in July. At that time, I had more pain in my inner knee resulting from tension in the tendon down to my inner foot. As the summer progressed, I found it difficult to stand long much less walk. Ice and anti-inflammatory meds don't help. I have NO idea what it is and my ortho did not say much about it last visit.
So this kind of pain must be typical for CP folks since there is unrelenting tension on the muscles, tendons, ligaments, joints, and bones. What is typically done?
I am constantly amazed by the number of pain and mobility issues the CP presents....and to think it is not progressive. Wonder sometimes! :rolleyes:
Cheers
Prisc1125
I am having the same pain myself, though I have not gotten a dx of it.
I am 35 with spastic diplegia CP dx'd four yrs ago prior to what became 4 reconstructive foot surgeries to correct spastic clubfoot R. Given what I started with, the surgeries helped a great deal. However, in the last several months, I have been having a heck of a time with shinsplints first (rx'd naproxsyn, but stomach could not deal) and over the summer, progressive knee pain on the R.
I have a bony knob on the lateral (outer) knee and it hurts to palpate and I tend to have a shearing pain in that area. My PT/massage person first noticed my knee drifting outward with my foot in July. At that time, I had more pain in my inner knee resulting from tension in the tendon down to my inner foot. As the summer progressed, I found it difficult to stand long much less walk. Ice and anti-inflammatory meds don't help. I have NO idea what it is and my ortho did not say much about it last visit.
So this kind of pain must be typical for CP folks since there is unrelenting tension on the muscles, tendons, ligaments, joints, and bones. What is typically done?
I am constantly amazed by the number of pain and mobility issues the CP presents....and to think it is not progressive. Wonder sometimes! :rolleyes:
Cheers
Prisc1125
Alinka
09-27-2004, 04:06 PM
Hi, everybody, I just wanted to add some input here - I have problems with my knees too, but not all the time. I sometimes find it difficult to go downstairs - my knees often protest against my doing so...I think sometimes it is difficult to tell whether the pain is inflamation or spasticity related, which means that sometimes I try to relax the knee in hot water and if it is worse, I know that I had better to take some anti-inflammatory agent. I have better results with locally applied medicines, though. :-) I think it is better not to make it difficult for my body to cope with too many drugs.
And yes, I have some low back issues too (just to support what was stated above about the connection btw. lower back issues and knee pain. I have a block in my lower back, so I sometimes only drag my left leg behind me, if you know what I mean.
Alinka
And yes, I have some low back issues too (just to support what was stated above about the connection btw. lower back issues and knee pain. I have a block in my lower back, so I sometimes only drag my left leg behind me, if you know what I mean.
Alinka
prisc1125
09-27-2004, 11:28 PM
Hi Alinka
When you go down the steps, does the front of the knee hurt? I have this happen for me, but it is the opposite knee (in this case, L). I get a stabbing pain right on the knee cap and limp down the steps. I have a lot of compensation going on in the L leg; my PT said that it was functionally shorter given the issues in my R leg/foot.
And I also have the hip issues with the weather changes......though the cold is what does me in more. I can barely walk! Thought the humidity might be better, but then again, that could be worse too.
Prisc1125
When you go down the steps, does the front of the knee hurt? I have this happen for me, but it is the opposite knee (in this case, L). I get a stabbing pain right on the knee cap and limp down the steps. I have a lot of compensation going on in the L leg; my PT said that it was functionally shorter given the issues in my R leg/foot.
And I also have the hip issues with the weather changes......though the cold is what does me in more. I can barely walk! Thought the humidity might be better, but then again, that could be worse too.
Prisc1125
mn9
09-27-2004, 11:53 PM
Have any of you ever been told what to expect in the future, or are we just supposed to live with this and deal with the pain. The reason I am asking is, because I keep being referred to sports medicine doctors who give me a glazed look on their eyes as if they have no clue what I am talking about. This in turn makes me doubt myself and make me feel stupid until I finally got my med reports from my childhood. Anybody have any ideas?
prisc1125
09-27-2004, 11:57 PM
Nope...no one has said a word about that. The Sports Med folks are the last ones to have a clue about this and I am surprised that you were ref'd there.
I think for now, we need to keep living in pain. My docs are trying their best at parts of this, but it seems that for every correction surgically, the spasticity seems to wreak havoc other ways. Guess we are all pioneering, for better or worse, I cannot tell!
I think for now, we need to keep living in pain. My docs are trying their best at parts of this, but it seems that for every correction surgically, the spasticity seems to wreak havoc other ways. Guess we are all pioneering, for better or worse, I cannot tell!
Alinka
09-28-2004, 05:32 AM
Hi, Prisc1129,
yes, I think we suffer from the same knee problem. The cup of my knee hurts when I am going downstairs...not always, though. It seems to be cold-related....it happens more often when it is cold and rainy. The other knee hurts too, but that is a bit different and the pain is rather dull than sharp or throbbing or whatsoever.
Hip issues - I have my right hip subluxated because of spasticity of my inner tigh muscles....and this hip really hurts...yesterday I had a lot of ordeal with it actually and on the left side I seem to have developed some blockage of the bones there, so it was really a struggle. :p I was dragging my left leg as something dead behind me and the right one wouldnīt understand I cannot help it and started hurting too...just for the sake of the things :) . Maybe I had better to see some ortho for this, as this is some really new issue to me and it feels as if the calf muscles were shortening again after being lengthened when I was a child. That sounds like a surgery :rolleyes: I donīt want any :rolleyes:
Anyway, I ended up lying in bed and saying to myself: "hey, be brave, you have to survive this :) " I know that the right leg hurts because of overcompensating and I also know that this particular issue has been with me since I was a child. But I must say that the older I am the more difficult it is for me to cope with the pain. I do not remember to have that much pain as a child and the doctors do not do much for me now.
I do not really know - the Czech health insurance covers very little CP care for adults. They do not pay for regular physiotherapy, but for an intensive session once a year....the rest is really up to you.
If you want to go to PT regularly, you have to pay for it, unless you know some physiotherapist personally and do not persuade him or her to work with you. One of my English students is a PT, so I asked him to see to the matters...he said he would try, but he is not too experienced in CP issues. Well, maybe it will mean he will want to be creative with me. :) The answer I get from the doctors most often is: "Well, we do not know." :) and they are afraid to try things out.
yes, I think we suffer from the same knee problem. The cup of my knee hurts when I am going downstairs...not always, though. It seems to be cold-related....it happens more often when it is cold and rainy. The other knee hurts too, but that is a bit different and the pain is rather dull than sharp or throbbing or whatsoever.
Hip issues - I have my right hip subluxated because of spasticity of my inner tigh muscles....and this hip really hurts...yesterday I had a lot of ordeal with it actually and on the left side I seem to have developed some blockage of the bones there, so it was really a struggle. :p I was dragging my left leg as something dead behind me and the right one wouldnīt understand I cannot help it and started hurting too...just for the sake of the things :) . Maybe I had better to see some ortho for this, as this is some really new issue to me and it feels as if the calf muscles were shortening again after being lengthened when I was a child. That sounds like a surgery :rolleyes: I donīt want any :rolleyes:
Anyway, I ended up lying in bed and saying to myself: "hey, be brave, you have to survive this :) " I know that the right leg hurts because of overcompensating and I also know that this particular issue has been with me since I was a child. But I must say that the older I am the more difficult it is for me to cope with the pain. I do not remember to have that much pain as a child and the doctors do not do much for me now.
I do not really know - the Czech health insurance covers very little CP care for adults. They do not pay for regular physiotherapy, but for an intensive session once a year....the rest is really up to you.
If you want to go to PT regularly, you have to pay for it, unless you know some physiotherapist personally and do not persuade him or her to work with you. One of my English students is a PT, so I asked him to see to the matters...he said he would try, but he is not too experienced in CP issues. Well, maybe it will mean he will want to be creative with me. :) The answer I get from the doctors most often is: "Well, we do not know." :) and they are afraid to try things out.
prisc1125
09-28-2004, 10:55 AM
Hi Alinka
It definitely sounds like we have similar pains going on. My knee is rather temperamental, too, esp when it comes to weather changes.
Hips......I had my adductors get so tight at one point that surgery to release them was mentioned. Fortunately, they settled down after awhile due to stretches and Pilates. But they act up, esp in the flexors. Now it is just a matter of finding heat and letting them settle. The calf has been a disaster for me, esp post-botox (botox button). I can see why you'd want to avoid more chats with the ortho if surgery looms as the option.
That is unfortunate about the attitude your country has toward CP mgt and PT. While I do not relish in the thought of it -- time, expense -- its value can be great if done by the right person and possibly minimize the need for other CP care. But when it comes to bottom line, insurance companies don't see it this way.
So, you have to rely on the kindness of friends who might also be PT specialists with a CP focus. Hmmm.....
Prisc1125
It definitely sounds like we have similar pains going on. My knee is rather temperamental, too, esp when it comes to weather changes.
Hips......I had my adductors get so tight at one point that surgery to release them was mentioned. Fortunately, they settled down after awhile due to stretches and Pilates. But they act up, esp in the flexors. Now it is just a matter of finding heat and letting them settle. The calf has been a disaster for me, esp post-botox (botox button). I can see why you'd want to avoid more chats with the ortho if surgery looms as the option.
That is unfortunate about the attitude your country has toward CP mgt and PT. While I do not relish in the thought of it -- time, expense -- its value can be great if done by the right person and possibly minimize the need for other CP care. But when it comes to bottom line, insurance companies don't see it this way.
So, you have to rely on the kindness of friends who might also be PT specialists with a CP focus. Hmmm.....
Prisc1125
Alinka
09-28-2004, 11:24 AM
Hi, Prisc,
I had my adductor loosened at the left side. It helped, but the CP started to be more pronounced at the right side after the surgery, so I do not know whether it was the right choice....maybe it was worth the relief, but the question is what would have happened if I had not done it or had it done on both sides.
PT - I hope to get more of it soon, as I have the contacts now....
It is not so bad with CP kids - they get all the attention they need, but I made the mistake at the age of 18 of not making an agreement with my therapist about continuing the therapy even though I was "old" at that time. I had other issues to deal with at the time - starting at the university - and the contact was lost. Now it is very difficult indeed to find anybody who would be willing to work with me....I am grateful for that offer of my friend that I mentioned in my previous post.
not so sure about seeing an ortho - I am just soooo afraid every time I step into his room ;) Maybe it would not be that bad ;) Anyway, it is good to know that I am not the only one with this problem in the world.
Alinka
I had my adductor loosened at the left side. It helped, but the CP started to be more pronounced at the right side after the surgery, so I do not know whether it was the right choice....maybe it was worth the relief, but the question is what would have happened if I had not done it or had it done on both sides.
PT - I hope to get more of it soon, as I have the contacts now....
It is not so bad with CP kids - they get all the attention they need, but I made the mistake at the age of 18 of not making an agreement with my therapist about continuing the therapy even though I was "old" at that time. I had other issues to deal with at the time - starting at the university - and the contact was lost. Now it is very difficult indeed to find anybody who would be willing to work with me....I am grateful for that offer of my friend that I mentioned in my previous post.
not so sure about seeing an ortho - I am just soooo afraid every time I step into his room ;) Maybe it would not be that bad ;) Anyway, it is good to know that I am not the only one with this problem in the world.
Alinka
prisc1125
09-28-2004, 11:41 AM
Hi Alinka
Nope, you are far from being the only one. It is amazing just how many of us are out there struggling with this. The kids growing up with CP now may or may not face the same thing when they are adults. Remains to be seen.
I ended up at a hip ortho for the hip issues and he did an MRI arthrogram to ensure the release was the right way to go. That MRI showed that I had issues, but at the same time, did not warrant surgery. I was told the huge changes in my gait were responsible for the hip issues, though the spasticity was still a factor.
It is unfortunate for you that you had to lose a contact to help you while going about the business of the rest of your life. Should not have to come to that!
Prisc1125
Nope, you are far from being the only one. It is amazing just how many of us are out there struggling with this. The kids growing up with CP now may or may not face the same thing when they are adults. Remains to be seen.
I ended up at a hip ortho for the hip issues and he did an MRI arthrogram to ensure the release was the right way to go. That MRI showed that I had issues, but at the same time, did not warrant surgery. I was told the huge changes in my gait were responsible for the hip issues, though the spasticity was still a factor.
It is unfortunate for you that you had to lose a contact to help you while going about the business of the rest of your life. Should not have to come to that!
Prisc1125
Alinka
09-28-2004, 01:11 PM
Hi Prisc 1125,
I had no idea it would be like that, since I had quite an intensive therapy till I was 17, I just thought it would continue....nobody warned me that it would be such a big problem and that it is about to stop....
Yet I am glad that I finished my university - I think that it is much easier for me to manage the disability, as I know how to work with information and I
know how to ask questions, which is quite important when it comes to different agressive treatments.
What I want to say is that when there is a will, there is always a way. :)
Alinka
I had no idea it would be like that, since I had quite an intensive therapy till I was 17, I just thought it would continue....nobody warned me that it would be such a big problem and that it is about to stop....
Yet I am glad that I finished my university - I think that it is much easier for me to manage the disability, as I know how to work with information and I
know how to ask questions, which is quite important when it comes to different agressive treatments.
What I want to say is that when there is a will, there is always a way. :)
Alinka
prisc1125
09-28-2004, 02:32 PM
Hi Alinka
Unbelievable that it turned out that way.
Meant to add to the knee/hip dialogue previously...the hip issues I had were also thought to be from the compensation of my left leg and postures from months of recovery/in casts. The cast was so heavy to sit normally so I brought my leg up and that took its toll on the hips.
Ain't that the truth....the will and ammo of info to get the most for your care. Unbelievable how much is needed to do so!
Prisc1125
Unbelievable that it turned out that way.
Meant to add to the knee/hip dialogue previously...the hip issues I had were also thought to be from the compensation of my left leg and postures from months of recovery/in casts. The cast was so heavy to sit normally so I brought my leg up and that took its toll on the hips.
Ain't that the truth....the will and ammo of info to get the most for your care. Unbelievable how much is needed to do so!
Prisc1125
Alinka
09-28-2004, 03:59 PM
Hi Alinka
...the hip issues I had were also thought to be from the compensation of my left leg and postures from months of recovery/in casts. The cast was so heavy to sit normally so I brought my leg up and that took its toll on the hips.
Ain't that the truth....the will and ammo of info to get the most for your care. Unbelievable how much is needed to do so!
Prisc1125
Do you want to say that the recovery period actually made your problems worse? Thatīs terrible....and that is exactly why I am so reluctant with all surgery....you never know what happens afterwards.
Otherwise it seems that we share a lot of similarities, donīt we? It is true that the heat and hot water usually helps to settle the matters for the hip issues, if they are spasticity-related.
Have you tried therapeutic horse riding for the hip issues? I am considering that as it helps to relax the lower back area and the hip joints, or so they say, at least.
And also - do you have problems with the ankles as well? I do and they are related to the contracted calf muscles.... Sometimes I experience some very sharp pain in the ankles when walking - and I am not fat at all, so I think it is not FAIR!!!!! ;)
...the hip issues I had were also thought to be from the compensation of my left leg and postures from months of recovery/in casts. The cast was so heavy to sit normally so I brought my leg up and that took its toll on the hips.
Ain't that the truth....the will and ammo of info to get the most for your care. Unbelievable how much is needed to do so!
Prisc1125
Do you want to say that the recovery period actually made your problems worse? Thatīs terrible....and that is exactly why I am so reluctant with all surgery....you never know what happens afterwards.
Otherwise it seems that we share a lot of similarities, donīt we? It is true that the heat and hot water usually helps to settle the matters for the hip issues, if they are spasticity-related.
Have you tried therapeutic horse riding for the hip issues? I am considering that as it helps to relax the lower back area and the hip joints, or so they say, at least.
And also - do you have problems with the ankles as well? I do and they are related to the contracted calf muscles.... Sometimes I experience some very sharp pain in the ankles when walking - and I am not fat at all, so I think it is not FAIR!!!!! ;)
prisc1125
09-28-2004, 04:20 PM
Hi Alinka
Your post rings true with me in many ways.
For one, yes, the surgeries definitely brought about a whole new set of issues. In fact, it is one of the reasons my ortho tries to avoid surgery at all costs. The surgery spawns new cycles of spasticity and that translates to all sorts of issues (esp. changing the baseline, as he once described). The recovery from surgery definitely affected my hips and my left L did all the work, thereby functionally shortening as well.
As for the hippotherapy, I started to look into it but it was too involved and I had other pressing matters. I am trying to find a happy medium between CP mgt and the other matters of managing life. It has not been easy at all. In fact, almost every year, I end up seeing 5+ docs for one item or another. I get a month or two weeks of reprieve.....here we are with another fall and set of docs/issues. But, I did horseback riding (competitively) as a kid and it helped my posture tremendously. It is an interest, but time is less for it right now.
Ah, the ol' ankles. Do I ever have pain and stiffness in the R ankle. For one, the anterior tib tendon was completely transferred (vs typical split) across the front of the ankle, so to get other function for my foot, I have less dorsiflexion. Then, there is a lot of scar tissue and it cracks. When I drive, I get a catching in the front that often courses up the calf. In fact, I was going somewhere last week and the calf was going off with such force and pain that I nearly had to pull off the road. I also have the inner ankle tendon pulling and acting up with the smallest amount of exertion now.
I have swum for a long time (competitively for many years) and now the kicking can be too fatigueing (energy conservation). Finally, my former PT and I surmised that I had shin splints in part because the calf muscles are so tight they make the shin muscles overwork. Massage helped somewhat to tame the calf. Also have balance issues, though I am not sure now whether that is more about the meds or the spasticity.
My concern now is that I KNOW I need to be active to keep strength and ROM, but it seems that that aggravates the muscle tone and hastens the relapse I feel I am having. My foot seems to be turning out more toward the outside and I have a bunionette. I am not overweight either.....but the foot and ankle sure are speaking up.
Your post rings true with me in many ways.
For one, yes, the surgeries definitely brought about a whole new set of issues. In fact, it is one of the reasons my ortho tries to avoid surgery at all costs. The surgery spawns new cycles of spasticity and that translates to all sorts of issues (esp. changing the baseline, as he once described). The recovery from surgery definitely affected my hips and my left L did all the work, thereby functionally shortening as well.
As for the hippotherapy, I started to look into it but it was too involved and I had other pressing matters. I am trying to find a happy medium between CP mgt and the other matters of managing life. It has not been easy at all. In fact, almost every year, I end up seeing 5+ docs for one item or another. I get a month or two weeks of reprieve.....here we are with another fall and set of docs/issues. But, I did horseback riding (competitively) as a kid and it helped my posture tremendously. It is an interest, but time is less for it right now.
Ah, the ol' ankles. Do I ever have pain and stiffness in the R ankle. For one, the anterior tib tendon was completely transferred (vs typical split) across the front of the ankle, so to get other function for my foot, I have less dorsiflexion. Then, there is a lot of scar tissue and it cracks. When I drive, I get a catching in the front that often courses up the calf. In fact, I was going somewhere last week and the calf was going off with such force and pain that I nearly had to pull off the road. I also have the inner ankle tendon pulling and acting up with the smallest amount of exertion now.
I have swum for a long time (competitively for many years) and now the kicking can be too fatigueing (energy conservation). Finally, my former PT and I surmised that I had shin splints in part because the calf muscles are so tight they make the shin muscles overwork. Massage helped somewhat to tame the calf. Also have balance issues, though I am not sure now whether that is more about the meds or the spasticity.
My concern now is that I KNOW I need to be active to keep strength and ROM, but it seems that that aggravates the muscle tone and hastens the relapse I feel I am having. My foot seems to be turning out more toward the outside and I have a bunionette. I am not overweight either.....but the foot and ankle sure are speaking up.
Alinka
09-28-2004, 04:48 PM
Hi Alinka
Your post rings true with me in many ways.
For one, yes, the surgeries definitely brought about a whole new set of issues. In fact, it is one of the reasons my ortho tries to avoid surgery at all costs. The surgery spawns new cycles of spasticity and that translates to all sorts of issues (esp. changing the baseline, as he once described). The recovery from surgery definitely affected my hips and my left L did all the work, thereby functionally shortening as well.
As for the hipotherapy, I started to look into it but it was too involved and I had other pressing matters. I am trying to find a happy medium between CP mgt and the other matters of managing life. It has not been easy at all. In fact, almost every year, I end up seeing 5+ docs for one item or another. I get a month or two weeks of reprieve.....here we are with another fall and set of docs/issues. But, I did horseback riding (competitively) as a kid and it helped my posture tremendously. It is an interest, but time is less for it right now.
My concern now is that I KNOW I need to be active to keep strength and ROM, but it seems that that aggravates the muscle tone and hastens the relapse I feel I am having. My foot seems to be turning out more toward the outside and I have a bunionette. I am not overweight either.....but the foot and ankle sure are speaking up.
I know what you mean by a balance between CP management and normal life. I also hear you loud and clear on the activity vs. rest question. I do try to lead as normal life as possible, but I am noticing that it is becoming more and more difficult at times. My neuro said I was enormously well considering my age and the level of the disablity, but I feel I am getting easily tired and I have different pains that I know werenīt there. So, it seems that the body is telling me:slow down, or.... It was also suggested that I start wearing crutches, but I do not want to - I feel that it would mean the begining of an end of my independent walking...yet last week I almost used them, as it was soooo painful to walk....just wondering where I am going from this point.
My feet turn rather inwards, but they are both extremely wide and flat, so it is difficult to buy shoes that do not hurt. Forget about anything lady-like.... ;)
Alinka
Your post rings true with me in many ways.
For one, yes, the surgeries definitely brought about a whole new set of issues. In fact, it is one of the reasons my ortho tries to avoid surgery at all costs. The surgery spawns new cycles of spasticity and that translates to all sorts of issues (esp. changing the baseline, as he once described). The recovery from surgery definitely affected my hips and my left L did all the work, thereby functionally shortening as well.
As for the hipotherapy, I started to look into it but it was too involved and I had other pressing matters. I am trying to find a happy medium between CP mgt and the other matters of managing life. It has not been easy at all. In fact, almost every year, I end up seeing 5+ docs for one item or another. I get a month or two weeks of reprieve.....here we are with another fall and set of docs/issues. But, I did horseback riding (competitively) as a kid and it helped my posture tremendously. It is an interest, but time is less for it right now.
My concern now is that I KNOW I need to be active to keep strength and ROM, but it seems that that aggravates the muscle tone and hastens the relapse I feel I am having. My foot seems to be turning out more toward the outside and I have a bunionette. I am not overweight either.....but the foot and ankle sure are speaking up.
I know what you mean by a balance between CP management and normal life. I also hear you loud and clear on the activity vs. rest question. I do try to lead as normal life as possible, but I am noticing that it is becoming more and more difficult at times. My neuro said I was enormously well considering my age and the level of the disablity, but I feel I am getting easily tired and I have different pains that I know werenīt there. So, it seems that the body is telling me:slow down, or.... It was also suggested that I start wearing crutches, but I do not want to - I feel that it would mean the begining of an end of my independent walking...yet last week I almost used them, as it was soooo painful to walk....just wondering where I am going from this point.
My feet turn rather inwards, but they are both extremely wide and flat, so it is difficult to buy shoes that do not hurt. Forget about anything lady-like.... ;)
Alinka
prisc1125
09-28-2004, 04:56 PM
Hi Alinka
Yeah, there are times when I wish it were easier to slow down. But, the pace of our society here makes it almost impossible. I am on the border where I am high-functioning by all clinicians' perspectives, yet I have these unrelenting pains. Like your docs, I am told that I do quite well. My degree of severity has been placed at mild, but that scale is pretty subjective depending on the doctor's experience with CP and spasticity and interactions with certain populations.
I do NOT want to be dependent on others and most of all not my husband. We met in the spirit of activity (hiking) and it is my mission to keep as active as possible to maintain these interests.
Ugh, shoe shopping is the absolute worst. I have always had issues with them, but now I have to look at practical and somewhat stylish. No pumps....so dressing up is not as fun!
Prisc1125
Yeah, there are times when I wish it were easier to slow down. But, the pace of our society here makes it almost impossible. I am on the border where I am high-functioning by all clinicians' perspectives, yet I have these unrelenting pains. Like your docs, I am told that I do quite well. My degree of severity has been placed at mild, but that scale is pretty subjective depending on the doctor's experience with CP and spasticity and interactions with certain populations.
I do NOT want to be dependent on others and most of all not my husband. We met in the spirit of activity (hiking) and it is my mission to keep as active as possible to maintain these interests.
Ugh, shoe shopping is the absolute worst. I have always had issues with them, but now I have to look at practical and somewhat stylish. No pumps....so dressing up is not as fun!
Prisc1125
JellyRJFan
09-28-2004, 05:39 PM
ugh, shoe shopping! It's the absolute worst. My feet are 2 completely different sizes so I can only shop at Nordstroms, or else I'd have to buy 2 pairs and waste half of them. Then when you get 2 different shoes they're NEVER the exact same color and the heels are always different sizes, so I walk even more lopsided then I do barefoot, hahaha! Dress shoes are a nightmare because my legs are so weak that I need a lot of support.
I don't know what's wrong with me... lately my hips, calves and ankels have been getting tighter every day, it's getting hard to walk! Usually just my hamstrings are (noticably) very tight :(
I don't know what's wrong with me... lately my hips, calves and ankels have been getting tighter every day, it's getting hard to walk! Usually just my hamstrings are (noticably) very tight :(
prisc1125
09-28-2004, 05:43 PM
Hi JellyRJFan
Oh no....misery loves company, and you seem to have lots of it! I found a pair of dressier Rockports (not by much, but they don't look orthopedic and yet give the support I need) and got two pairs in different colors. I have to plan my outfits around them. Haven't taken to buying two pairs.....
Again, misery loves company........everything is super tight for me now too....calf is the worst and it goes on from there.
Oh no....misery loves company, and you seem to have lots of it! I found a pair of dressier Rockports (not by much, but they don't look orthopedic and yet give the support I need) and got two pairs in different colors. I have to plan my outfits around them. Haven't taken to buying two pairs.....
Again, misery loves company........everything is super tight for me now too....calf is the worst and it goes on from there.
Alinka
09-28-2004, 06:12 PM
Shoe shopping - a lovely task indeed. I do know what you mean by the two different sizes of your feet, JellyRJFan. I have that too :) as a result of a surgery - my feet are cca 2,5 cm apart in size. I tend to buy shoes with laces so that the shoe stays where it should, i. e. on my feet. I do not buy two pairs of shoes - I cannot afford such a thing. But it is a nightmare...the shoes that I am wearing now has got some holes in them, so the dreaded shops are waiting ;) . How many pairs of shoes do you ladies tend to destroy per season? (3 months)? I usually "do" two or three, but it is because I got someone to repair the shoes for me, otherwise they would be gone in a week. :(
Alinka
Alinka
JellyRJFan
09-28-2004, 07:17 PM
I just noticed the soles in my everyday shoes are just about worn through... Looks like I'll be making a trip the mall as well! I tend to get new shoes about every 6 months or so... by the end of that time they are completely thrashed, but shoe shopping is just so difficult and my parents don't have tons of money to buy me shoes all the time. Also, since the one store is the only one I know of that will split sizes, they can go FOREVER without having a style of shoe that I like.
I normally buy shoes with laces as well, however, I just bought a pair of loafers. As long as I have my shoe horn to get my feet into them I'm ok, but by the end of the day my feet just kill me. Oh, the things we do to be fashionable! :)
I normally buy shoes with laces as well, however, I just bought a pair of loafers. As long as I have my shoe horn to get my feet into them I'm ok, but by the end of the day my feet just kill me. Oh, the things we do to be fashionable! :)
lastramy
09-28-2004, 10:15 PM
Shoes!!! A very bad word in my house! I go through them very quickly. Less than 3 months!
They get torn up with the brace in them, the brace will only fit in certain ones. I need a half size bigger of the left to accommodate the brace, and they have to be something that can be tied on. Once in a while I can do a slip on but I walk out of them a lot.
I can't do anything above a half inch as far as dress goes, which alsomeans no brace. So the cane is a travel friend for such occasions.
I wear the insides of the shoes out first and then the shoes mold that way with my foot that it wants to keep it in that position. I am told I need to have several pair and rotate them often. Ugh yeah.......and which bank should I rob first????? :)
Prisc, I love Rockport shoes!! They are almost indestructable! Great quality for the price. I haven't seen too many stores carrying that brand though. Where did you find yours??
Lastramy
And I am with you all on the pain issues. I am tightening up along the entire outside of my leg. It is hard to bend it at all without complaint.
GEEZZZ................
They get torn up with the brace in them, the brace will only fit in certain ones. I need a half size bigger of the left to accommodate the brace, and they have to be something that can be tied on. Once in a while I can do a slip on but I walk out of them a lot.
I can't do anything above a half inch as far as dress goes, which alsomeans no brace. So the cane is a travel friend for such occasions.
I wear the insides of the shoes out first and then the shoes mold that way with my foot that it wants to keep it in that position. I am told I need to have several pair and rotate them often. Ugh yeah.......and which bank should I rob first????? :)
Prisc, I love Rockport shoes!! They are almost indestructable! Great quality for the price. I haven't seen too many stores carrying that brand though. Where did you find yours??
Lastramy
And I am with you all on the pain issues. I am tightening up along the entire outside of my leg. It is hard to bend it at all without complaint.
GEEZZZ................
musicmaker650
09-28-2004, 11:38 PM
I switched to wearing velcro tennis shoes for a few years now. There cheap ($14) at a local Wal-Mart, and I go through a pair every 3 months or so. I have a pair of dress loafers and some low profile hiking boots, that I don't wear that often... I drag both my feet. The right more than my left though
prisc1125
09-29-2004, 12:24 PM
Hi
Lastramy: I found the Rockports first at a DSW (my sister spotted them first) and after I found success with those -- a funky ruby color -- I checked out the Rockport outlet at a nearby outlet center. Luck should have it that they had a pair in a more neutral color. I have to really tighten the velcro strap and still my foot moves around. But, they are giving support and are pretty stylish. I cannot do slip-ons whatsoever for my R foot -- foot has lost alot of tone (not that it had much) due to surgeries so I don't have that "meat" to keep the shoe on. Any type of slip-on has to have a toe piece for me to latch on.
For those with knee pain, an interesting find that might explain alot...I was digging around for pain tips and plugged in either Mn9 or JellyRFan's dx of patellofemoral pain syndrome....on a reputable site, I found causes of this syndrome. Turns out that tight calves and hamstrings are major players in this syndrome. This makes sense in our cases, since the calf and hamstring are most affected by spasticity. Also, tight hips and ITBs do much to wear down the knee complex. The site doesn't get into too much detail where this is concerned, but since the author cited these areas, the pieces began to fall together for me. All that can be done is stretching (nothing new for us), strengthening the quad (as this weak area is thought to overload the knee) and possibly icing, NSAIDs, and arch supports (to redistribute the load when we walk). These last few items are negotiable in their effectiveness. I was considering a brace but that too is not always effective and in fact can become a crutch.
I am not entirely sure this syndrome is what I have but the symptoms I've read there and on this board support it in my case so I am going w. it for now. One thing I am curious about -- do those of you who have knee pain also have a bony knob on the outside that throbs and is painful to touch? This is odd to me.....have no idea what it is.
Prisc1125
Lastramy: I found the Rockports first at a DSW (my sister spotted them first) and after I found success with those -- a funky ruby color -- I checked out the Rockport outlet at a nearby outlet center. Luck should have it that they had a pair in a more neutral color. I have to really tighten the velcro strap and still my foot moves around. But, they are giving support and are pretty stylish. I cannot do slip-ons whatsoever for my R foot -- foot has lost alot of tone (not that it had much) due to surgeries so I don't have that "meat" to keep the shoe on. Any type of slip-on has to have a toe piece for me to latch on.
For those with knee pain, an interesting find that might explain alot...I was digging around for pain tips and plugged in either Mn9 or JellyRFan's dx of patellofemoral pain syndrome....on a reputable site, I found causes of this syndrome. Turns out that tight calves and hamstrings are major players in this syndrome. This makes sense in our cases, since the calf and hamstring are most affected by spasticity. Also, tight hips and ITBs do much to wear down the knee complex. The site doesn't get into too much detail where this is concerned, but since the author cited these areas, the pieces began to fall together for me. All that can be done is stretching (nothing new for us), strengthening the quad (as this weak area is thought to overload the knee) and possibly icing, NSAIDs, and arch supports (to redistribute the load when we walk). These last few items are negotiable in their effectiveness. I was considering a brace but that too is not always effective and in fact can become a crutch.
I am not entirely sure this syndrome is what I have but the symptoms I've read there and on this board support it in my case so I am going w. it for now. One thing I am curious about -- do those of you who have knee pain also have a bony knob on the outside that throbs and is painful to touch? This is odd to me.....have no idea what it is.
Prisc1125
prisc1125
10-11-2004, 11:04 PM
A twist on the chronic pain and inflammation issue.....I have some considerable pain in the bottom and inner parts of my foot. I have NO padding under the toes -- all seemed to waste away -- so I have no shock-absorption. Also, the musculature I did have in the mid- to forefoot has atrophied so that the foot is thin and narrow, and my bunion is that much more obvious. I have throbbing here as well.
Is this a common occurrence for the foot in spastic CP? And what can be done?
Thanks!
Is this a common occurrence for the foot in spastic CP? And what can be done?
Thanks!
mn9
10-13-2004, 08:09 PM
Hey Prisc1125-
Has your doctor or this website mentioned having a surgery for releasing the tendon in the knee? What was the outcome from this type of surgery? This is what my doctor is recommending as a treatment option for me. I am naturally leery of surgery, but this is the only thing that my doctor (and the ones he has referred me to) is recommending as like this is the only option since everything else hasn't worked.
Thanks for the info.
MN9
Has your doctor or this website mentioned having a surgery for releasing the tendon in the knee? What was the outcome from this type of surgery? This is what my doctor is recommending as a treatment option for me. I am naturally leery of surgery, but this is the only thing that my doctor (and the ones he has referred me to) is recommending as like this is the only option since everything else hasn't worked.
Thanks for the info.
MN9
musicmaker650
10-13-2004, 08:25 PM
Hello mn9,
surgery should always be the last option. I have had many orthopedic surgeries. My knees were effectively straightened by moving muscles. This operation really didn't go as planned. I couldn't bend my knees more than 45 degrees. As it turns out, this stiff knee thing has saved my knees from wearing out. I have Spastic Diplegia CP, and because of these many surgeries, I haven't suffered from spasticity since I was 14... I'm 54 now. Problem muscles were released by surgery.
This is not recommended, nor is surgery appropriate in every case
surgery should always be the last option. I have had many orthopedic surgeries. My knees were effectively straightened by moving muscles. This operation really didn't go as planned. I couldn't bend my knees more than 45 degrees. As it turns out, this stiff knee thing has saved my knees from wearing out. I have Spastic Diplegia CP, and because of these many surgeries, I haven't suffered from spasticity since I was 14... I'm 54 now. Problem muscles were released by surgery.
This is not recommended, nor is surgery appropriate in every case
prisc1125
10-13-2004, 10:41 PM
Hi MN9
No, no word on surgeries for this. I have had four already on my R foot/calf so I think ortho is trying to get by for now with PT and elavil. My physiatrist asked if I had an MRI on the knee -- not yet.
So surgery is the only thing recommended? Hmmm....It could be cuz of a tight ITB, as my PT is wondering.
Glad I could help....
Prisc1125
No, no word on surgeries for this. I have had four already on my R foot/calf so I think ortho is trying to get by for now with PT and elavil. My physiatrist asked if I had an MRI on the knee -- not yet.
So surgery is the only thing recommended? Hmmm....It could be cuz of a tight ITB, as my PT is wondering.
Glad I could help....
Prisc1125