Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Hi Cherie I am the same as you re the leg muscles. TCS doesn't necessarily mean that muscles are weak. It depends where you are tethered, and the nerves affected by the tethering Re your 2nd paragraph, swelling, discoloration, normal blood flow. I have this in both ankles and feet and it has been diagnosed as erythromelalgia and Complex Regional Pain Syndrome. It is due to the damage to the nerves where I was tethered - L5 to S2. There is no cure, but management of it is by elevating feet, wearing compression stockings if needed, keeping skin on legs and feet in good condition, and trying to exercise to keep the circulation good. Try www.rsd-crps.co.uk for information and a support group best wishes Nina Bristol, UK -- > Hi, > I have firm leg muscles, my calf muscles are large and my doctor thought > that they should be flaccid and skinny. > > Does anyone else have firm leg muscles? > > One of the legs is always swollen in the lower part and ankle, on the > shin the leg is red, shinny sometimes bluish in colour. I had a Doppler > test done and the blood flow is good so no blockage. > > Cherie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Hi, I was a competitive swimmer for fifteen years growing up. I lifted weights several times a week as well. My calf muscles are big too, but during the last few years they have become extremely tight and hard to stretch out. I do have scarring in my veins in both lower legs due to deep vein thrombosis (two branches of same vein on right lower leg & one vein on left lower leg) which occurred when I injured both my ankles in 1991. Did not know I had developed these thrombosis until this spring. Scared me to death. Evidently my body punched holes through the blockages but there is scarring of the veins in both legs. My left leg has thrombophlebitis in the vein that had blocked. This means inflammation of the vein. All I know now is that I do have pain in my left leg from radiculopathy (from lumbar region), ankle and foot pain (from high grade chrondomyelasia), and nerve damage from radiculopathy & morton's neuroma (from nerve compression between two middle toes). Basically, my left leg is a mess from the hip down to the toes. As for the extremely tight calf muscles, I don't know what has caused it other than the possibility of the tight filum which will be operated on September 12th. It hurts to walk very long because they tighten to the point that there is a lot of pain. This could be what is called neurogenic claudication, but I wonder if I don't have vascular claudication too. Take care, Life's Journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting, " WOW, WHAT A RIDE! " leg muscles Hi, I have firm leg muscles, my calf muscles are large and my doctor thought that they should be flaccid and skinny. Does anyone else have firm leg muscles? One of the legs is always swollen in the lower part and ankle, on the shin the leg is red, shinny sometimes bluish in colour. I had a Doppler test done and the blood flow is good so no blockage. Cherie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Hi Cherie, I can't comment on the muscle issue but I have the exact same thing with the swelling and discoloring on only one leg (the one on which my foot is also very painful). Have you gotten any ideas as to what this is? Rgds, --- Cherie DeVries wrote: > Hi, > I have firm leg muscles, my calf muscles are large > and my doctor thought that they should be flaccid > and skinny. > > Does anyone else have firm leg muscles? > > One of the legs is always swollen in the lower part > and ankle, on the shin the leg is red, shinny > sometimes bluish in colour. I had a Doppler test > done and the blood flow is good so no blockage. > > Cherie > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2006 Report Share Posted August 14, 2006 After my last Detethering, even though I lost quite a bit of function......my Dr.'s were suprised that I was able to keep the tone in my legs. One leg is smaller then the other, though........always has been. The tone has decreased now though.......because of lack of/non-existant Therapy. Therapy should be continued, even if for just that reason. My Ankles are almost always swollen to some extent. And sometimes my Feet.......but more so my Ankles. Me Nebraska, USA mymocha@... I have firm leg muscles, my calf muscles are large and my doctor thought that they should be flaccid and skinny. Does anyone else have firm leg muscles? One of the legs is always swollen in the lower part and ankle, on the shin the leg is red, shinny sometimes bluish in colour. I had a Doppler test done and the blood flow is good so no blockage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 I dont know if my question on this subject is relevant - I had thought that my daughter who was 7 months at the time of tether release surgery for a small intraspinal lipoma with no nerve involvement (not lmc) was asymptomatic. Even during all our ns visits, the reports always said symmetrical and asymptomatic. However last month I realized that her left calf is smaller than the right. I am very worried about this, but nobody seems to be paying attention. The pediatrician didnt think it was significant even though he agreed that there was a difference, and the ns office said it was a pediatrician issue, and not related to neurosurgery. I am getting referrals for PT now. I am very worried that the difference may increase, and not sure what is causing this difference. And I worry that if this means that some of her nerves have been affected, and if that means that her bladder or bowels will be affected as well. I also really dont want my daughter to have to wear braces, and be able to walk and run normally, and I am hoping this does not mean any long terms effects on her. What are your thoughts? The difference is a little visible if you look hard, but not very great - no layman will probably be able to pick it up unless pointed to. I think the muscle tone difference may be more visible now than when she was tinier because she is pulling up and doing other activities and the muscle is being built. Is there any simplistic explanantion for this - like simple programming, and no nerve damage? Will regular PT/exercises/activities be able to help in building equal muscle tone? Needless to say, I am so very concerned and upset by this finding. I measure her everyday, and work with her everyday to make sure she is using both her legs equally. When crawling she seems to lead and use the right more, but when pulling up or climbing stairs thru a crawling motion, she seems to use both legs. Who would be the department that I should be interacting with? What are your thoughts? Thanks a lot, Abby. > > After my last Detethering, even though I lost quite a bit of > function......my Dr.'s were suprised that I was able to keep the tone in my > legs. One leg is smaller then the other, though........always has been. The > tone has decreased now though.......because of lack of/non-existant Therapy. > Therapy should be continued, even if for just that reason. > > My Ankles are almost always swollen to some extent. And sometimes my > Feet.......but more so my Ankles. > > Me > Nebraska, USA > mymocha@... > > I have firm leg muscles, my calf muscles are large and my doctor > thought that they should be flaccid and skinny. > > Does anyone else have firm leg muscles? > > One of the legs is always swollen in the lower part and ankle, on the > shin the leg is red, shinny sometimes bluish in colour. I had a Doppler > test done and the blood flow is good so no blockage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Humm...here's a thought...if your Pediatrician and NS are ignoring it, either it's not a significant difference or they are just ignoring it or they don't get the opportunity to observe her during extended periods like you do that might make the difference more obvious to you. If you still have doubts, maybe have a neurologist or rehabilitation doctor take a look just in case? It's good you are observing and trying to get her to work her muscles. What made them look for the lipoma to start with? Did she have any symptoms then? AG Re: leg muscles I dont know if my question on this subject is relevant - I had thought that my daughter who was 7 months at the time of tether release surgery for a small intraspinal lipoma with no nerve involvement (not lmc) was asymptomatic. Even during all our ns visits, the reports always said symmetrical and asymptomatic. However last month I realized that her left calf is smaller than the right. I am very worried about this, but nobody seems to be paying attention. The pediatrician didnt think it was significant even though he agreed that there was a difference, and the ns office said it was a pediatrician issue, and not related to neurosurgery. I am getting referrals for PT now. I am very worried that the difference may increase, and not sure what is causing this difference. And I worry that if this means that some of her nerves have been affected, and if that means that her bladder or bowels will be affected as well. I also really dont want my daughter to have to wear braces, and be able to walk and run normally, and I am hoping this does not mean any long terms effects on her. What are your thoughts? The difference is a little visible if you look hard, but not very great - no layman will probably be able to pick it up unless pointed to. I think the muscle tone difference may be more visible now than when she was tinier because she is pulling up and doing other activities and the muscle is being built. Is there any simplistic explanantion for this - like simple programming, and no nerve damage? Will regular PT/exercises/activities be able to help in building equal muscle tone? Needless to say, I am so very concerned and upset by this finding. I measure her everyday, and work with her everyday to make sure she is using both her legs equally. When crawling she seems to lead and use the right more, but when pulling up or climbing stairs thru a crawling motion, she seems to use both legs. Who would be the department that I should be interacting with? What are your thoughts? Thanks a lot, Abby. > > After my last Detethering, even though I lost quite a bit of > function......my Dr.'s were suprised that I was able to keep the tone in my > legs. One leg is smaller then the other, though........always has been. The > tone has decreased now though.......because of lack of/non-existant Therapy. > Therapy should be continued, even if for just that reason. > > My Ankles are almost always swollen to some extent. And sometimes my > Feet.......but more so my Ankles. > > Me > Nebraska, USA > mymocha@... > > I have firm leg muscles, my calf muscles are large and my doctor > thought that they should be flaccid and skinny. > > Does anyone else have firm leg muscles? > > One of the legs is always swollen in the lower part and ankle, on the > shin the leg is red, shinny sometimes bluish in colour. I had a Doppler > test done and the blood flow is good so no blockage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Abby, Take a deep breathe and try to relax (I know, much easier said than done)... I remember from all my old art classes that the human body is NOT symmertical. People are right or left legged, just as they are right or left handed; and just as your right hand will be a little bigger than your left, if you are right handed, so will the rest of your body. So the difference may not mean anything, and that may be what the pediatrician is thinking. But, in case it's not - a physical therapy evaluation is the best way to start. S/he can evaluate your daughter's muscle strength, and if it's significant, can help you with developing a program to strengthen her weaker side. Encouraging her to use both of her legs equally daily is a good idea in the mean time. Make it a game that you both can have a little fun with. V > that her left calf is smaller than the right. I am very > worried about this, but nobody seems to be paying attention. The > pediatrician didnt think it was significant even though he agreed that > there was a difference, and the ns office said it was a pediatrician > issue, and not related to neurosurgery. I am getting referrals for PT > now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 The pediatrician atleast looked at it during the normal 9 month appointment. He didnt ask us to come back for monitoring after a mon th or anything. She wasnt crawling or mobile at her 9 month appt (she is now), but he wasnt concerned about that either. The neurosurgeon didnt even look at it. In fact I dont think he is aware of it. I have to go via the nurse, or get an appointment (which takes time), and the nurse decided that it was not an issue for neurosurgery. So, I have sent an email to the neurosurgeon, but not sure how that is going to help. He hasnt responded yet. There is a developmental center in the same hospital which is meant for monitoring kids of specific condition - like tethered cord, but the ns office never referred us, perhaps they thought our case was very minor (in the spectrum of tethered cord, according to them). The pediatrician still tells me that if it were his daughter he would not have had the surgery done. While I dont agree with him, he actually knows his stuff. He knows all about tethered cords and how they can affect from a textbook standpoint. My daughter had a small, almost unnotice-able lump on her back, which was not noticed by the myriad of doctors who checked her after she was born. At 3.5 months I noticed it, and talked to the pediatrician who took an x-ray and there was no vertebral anomoly. So, he said it is not lmc, and to forget about it. I read about it and emailed a neurosurgeon who was kind enough to see us the next week. He ordered an MRI. Turned out her external lump had no connection to the internal spinal lipoma and her dura was intact. Her conus was in right location too - and the lipoma was so small and not near any nerves. So, everyone(I got 3 second opinions) told us that my daughter would not suffer any long term damage, and this would just be a one time thing... Anyway...thats our story, and now there is a muscle difference. And she is crawling favoring her right side (just a little bit).. Abby. > > > > After my last Detethering, even though I lost quite a bit of > > function......my Dr.'s were suprised that I was able to keep the > tone in my > > legs. One leg is smaller then the other, though........always has > been. The > > tone has decreased now though.......because of lack of/non- existant > Therapy. > > Therapy should be continued, even if for just that reason. > > > > My Ankles are almost always swollen to some extent. And sometimes my > > Feet.......but more so my Ankles. > > > > Me > > Nebraska, USA > > mymocha@ > > > > I have firm leg muscles, my calf muscles are large and my doctor > > thought that they should be flaccid and skinny. > > > > Does anyone else have firm leg muscles? > > > > One of the legs is always swollen in the lower part and ankle, on the > > shin the leg is red, shinny sometimes bluish in colour. I had a Doppler > > test done and the blood flow is good so no blockage. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Thank you . I do keep wishing and hoping that the difference has such a simplistic reason such as normal human variation, and my husband is really mad at me for not considering that as a possibility. I really do consider that as a possibility, and hope thats the case. But I also have to consider that thats not the case. But honestly though with my first daughter I never observed her calf. But I was surprised one time we went to buy shoes for her, her one foot was a little bigger than the other. The shoe sales lady said that it was common in babies, and I forgot about it. I checked the other day and her feet are now of exactly the same size and she is 4.5 years old...so it is possible. The next few weeks are lined up with physical therapy and developmental evaluation. So, atleast I feel that something is being done about it now. Thanks for you words . They are reassuring, as always! Abby. > > Abby, > > Take a deep breathe and try to relax (I know, much easier said than > done)... > > I remember from all my old art classes that the human body is NOT > symmertical. People are right or left legged, just as they are right > or left handed; and just as your right hand will be a little bigger > than your left, if you are right handed, so will the rest of your > body. So the difference may not mean anything, and that may be what > the pediatrician is thinking. > > But, in case it's not - a physical therapy evaluation is the best way > to start. S/he can evaluate your daughter's muscle strength, and if > it's significant, can help you with developing a program to strengthen > her weaker side. > > Encouraging her to use both of her legs equally daily is a good idea > in the mean time. Make it a game that you both can have a little fun > with. > > V > > > > that her left calf is smaller than the right. I am very > > worried about this, but nobody seems to be paying attention. The > > pediatrician didnt think it was significant even though he agreed that > > there was a difference, and the ns office said it was a pediatrician > > issue, and not related to neurosurgery. I am getting referrals for PT > > now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Personally, I am not sure I would always say that symmetrical means asymptomatic, or that asymmetrical means symptomatic. Everybody has some asymmetry to them.........such as your domminant hand is bigger then your non-domminant one...........for some they don't even take notice to it. If the asymmetry is progressing though, then I would be more concerned that it is a Symptom. Also, and this is very individual, just because a Symptom is there, doesn't always mean that that Symptom warrents Surgery. Every Symptom doesn't warrent Surgery for everybody......very individual, like I said......something you have to decide with the information you are given. Good luck. Me Nebraska, USA mymocha@... Even during all our ns visits, the reports always said symmetrical and asymptomatic. However last month I realized that her left calf is smaller than the right. I am very worried about this, but nobody seems to be paying attention. The pediatrician didnt think it was significant even though he agreed that there was a difference, and the ns office said it was a pediatrician issue, and not related to neurosurgery. I am getting referrals for PT now. I am very worried that the difference may increase, and not sure what is causing this difference. And I worry that if this means that some of her nerves have been affected, and if that means that her bladder or bowels will be affected as well. I also really dont want my daughter to have to wear braces, and be able to walk and run normally, and I am hoping this does not mean any long terms effects on her. What are your thoughts? The difference is a little visible if you look hard, but not very great - no layman will probably be able to pick it up unless pointed to. I think the muscle tone difference may be more visible now than when she was tinier because she is pulling up and doing other activities and the muscle is being built. Is there any simplistic explanantion for this - like simple programming, and no nerve damage? Quote Link to comment Share on other sites More sharing options...
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