Re: Ankle and foot problems

[Guest guest]

I am swamped in email and just found this! Sorry

.

My calves, especially my right, are floppy and stay

that way even when I do strength training exercises.

My thighs get stronger and firmer (not firm, just

firmer than they are), but the calves stay curiously

scrawny and floppy.

The ROM in my ankles is awful. I have done PT and

stretch all the time. Just last night, my calves were

aching and I tried to flex my foot and dang, are those

ankles tight!

My right toes curl. My arches are very high. They

always have been and surgery (two of them) didn't do

much for any of these things.

--- Filipi wrote:

> Hi everyone,

>

> I have a question for the group. Since my

> detethering my calves are atrophying despite

> rigorous strengthen. Because of this my toes are

> starting to curl in and my arches feel tighter.

> Also it feels like I am loosing range of motion to

> my ankles when I flex toward my chin.

> I have been stretching like crazy.

>

> Has anyone had similar issues? ( I know Rick has had

> some experience, has anyone else?). And what are

> you doing for it?

>

> Thanks for your reply.

>

> Blessings,

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hi ,

I haven't posted on here in quite some time. I had my detethering

surgery in January 2005. Prior to my surgery and finding out I had

tcs, I had seen a podiatrist because I had weakness in my ankles and

she noticed my left calf was a bit smaller than my right, like

almost an inch. I recovered quickly from surgery and was eager to

build up the muscle. My neurologist told me to do weight training

to build up the muscle and try standing on the left side more. On

the flip side, my neurosurgeon told me no matter what I did I would

not be able to build up that muscle because it was damaged from the

spinal cord not sending blood flow to that area and nerve damage,

etc. So I didn't know who to listen to. I decided to stay positive

and keep working out. The muscle seems to have gotten smaller in my

opinion so I don't know what else to do. Also over a year ago I

wore a size 7 shoe. Now I wear a size 6 1/2 or in some shoes a 6.

So weird that half of the shoes in my closet I can't wear. I also

cannot wear alot of the cute heels or wedges I have because I feel

off balance in them. I can wear them for a bit but have to take

them off because I feel like my ankle is going to give out. I almost

feel like I'm worse off since surgery. I can't seem to stand on my

tip toes on my left side with out swaying. I'm fine on my right

side. I want to go back to my neurologist to see if there is any

other type of treatment he can recommend. I never had physical

therapy, which I'm surprised he didn't suggest.

>

> Hi everyone,

>

> I have a question for the group. Since my detethering my calves

are atrophying despite rigorous strengthen. Because of this my toes

are starting to curl in and my arches feel tighter. Also it feels

like I am loosing range of motion to my ankles when I flex toward my

chin.

> I have been stretching like crazy.

>

> Has anyone had similar issues? ( I know Rick has had some

experience, has anyone else?). And what are you doing for it?

>

> Thanks for your reply.

>

> Blessings,

>

>

>

[Guest guest]

Hi ,

I can so relate to everything you describe.

I was detethered in Jan 2006. My symptoms were low back pain. My surgery was

much more that my NS expected. I was in the hospital for three weeks. Before

the surgery I was in pretty good shape. I am 32 and was an avid runner and also

enjoyed many outdoor sports. The rehab has been a long process for me because I

have had extensive peripheral neuropathy related to the surgery. I am still

trying to get back to my job as a nurse (I only worked part time because I have

a little boy). Anyways, I can't stand on my toes at all. If I try to wear

anything with a heel I am sure to fall. In fact I have had some doozies of

falls So I have just learned how to adjust my life accordingly.

It sounds like you also have neuropathic limb (I don't know this, it just sounds

like it from what you described). Rick on this website has been helpful with

his experience. He also had his toes curl up, foot drop and lost the ability to

stand over time. Eventually he had surgery and thankfully has regained his

ability to stand.

I have found a journal article that explains all this very well. I encourage

you to check it out. http://www.oandp.org/jpo/library/2005_02S_004.asp It

described my symptoms to a T !!!! My toes are curling up, my ankles are feeling

tight and increased numbness and I feel like I am loosing my balance more often,

I have had a foot wound that took forever to heal and as this article explains

it is related to autonomic neuropathy. This is where your body looses the

ability to produce sweat and oil in the affected areas. My feet would dry and

crack then the cracks would get infected, Thankfully it has healed and my feet

are fine.... but this is the main point of the article... to prevent any

infections whereas the preventing the possibilities of amputations.

I am surprised that your doctor hasn't sent you to Physical Therapy. Your

surgery must have went well. I also am trying to find out if there is any

treatment for what we are going through and try and prevent further limitations

in our mobility. If you find out anything will you let me know? Thanks.

Blessings,

Re: Ankle and foot problems

Hi ,

I haven't posted on here in quite some time. I had my detethering

surgery in January 2005. Prior to my surgery and finding out I had

tcs, I had seen a podiatrist because I had weakness in my ankles and

she noticed my left calf was a bit smaller than my right, like

almost an inch. I recovered quickly from surgery and was eager to

build up the muscle. My neurologist told me to do weight training

to build up the muscle and try standing on the left side more. On

the flip side, my neurosurgeon told me no matter what I did I would

not be able to build up that muscle because it was damaged from the

spinal cord not sending blood flow to that area and nerve damage,

etc. So I didn't know who to listen to. I decided to stay positive

and keep working out. The muscle seems to have gotten smaller in my

opinion so I don't know what else to do. Also over a year ago I

wore a size 7 shoe. Now I wear a size 6 1/2 or in some shoes a 6.

So weird that half of the shoes in my closet I can't wear. I also

cannot wear alot of the cute heels or wedges I have because I feel

off balance in them. I can wear them for a bit but have to take

them off because I feel like my ankle is going to give out. I almost

feel like I'm worse off since surgery. I can't seem to stand on my

tip toes on my left side with out swaying. I'm fine on my right

side. I want to go back to my neurologist to see if there is any

other type of treatment he can recommend. I never had physical

therapy, which I'm surprised he didn't suggest.

>

> Hi everyone,

>

> I have a question for the group. Since my detethering my calves

are atrophying despite rigorous strengthen. Because of this my toes

are starting to curl in and my arches feel tighter. Also it feels

like I am loosing range of motion to my ankles when I flex toward my

chin.

> I have been stretching like crazy.

>

> Has anyone had similar issues? ( I know Rick has had some

experience, has anyone else?). And what are you doing for it?

>

> Thanks for your reply.

>

> Blessings,

>

>

>

[Guest guest]

I am not sure how long ago you had your Detethering. But

I wanted to mention that these Symptoms could also

be caused by a Tethered (retethered) Cord as well.

More about the tightening of the Ankles. I have also gotten this over the

last few Years........my last Detethering was

about 9 1/2 Years ago. However, it is only in my left Ankle. For myself, I

confident that it is caused by a couple of things. First, that I am

dependent on a

Wheelchair, thus my legs are stationary. Secondly, that I am

Retethered.

Sorry to hear you are going through this. I hope things improve for you.

Me

Nebraska, USA

mymocha@...

Because of this my toes are

starting to curl in and my arches feel tighter. Also it feels like I

am loosing range of motion to my ankles when I flex toward my chin.

I have been stretching like crazy.

[Guest guest]

Hi Brande,

Thanks for you reply. I had my detethering Jan 2006. My last MRI was in May.

At that time I was untethered. So I hope that this still is the case. I had

similar symptoms in May. I think it is related to Neuropathic limb. It seems

to follow the pattern anyway. However I am still learning about all the

different surprises of TCS.

I sincerely thank you for reply. It has definitely crossed my mind of being

retethered. That is why my NS got the last MRI. So I continue to pray I won't

retether and learn how to adjust accordingly.

Thanks again for your concern.

Blessings,

Re: Ankle and foot problems

I am not sure how long ago you had your Detethering. But

I wanted to mention that these Symptoms could also

be caused by a Tethered (retethered) Cord as well.

More about the tightening of the Ankles. I have also gotten this over the

last few Years........my last Detethering was

about 9 1/2 Years ago. However, it is only in my left Ankle. For myself, I

confident that it is caused by a couple of things. First, that I am

dependent on a

Wheelchair, thus my legs are stationary. Secondly, that I am

Retethered.

Sorry to hear you are going through this. I hope things improve for you.

Me

Nebraska, USA

mymocha@...

Because of this my toes are

starting to curl in and my arches feel tighter. Also it feels like I

am loosing range of motion to my ankles when I flex toward my chin.

I have been stretching like crazy.

[Guest guest]

Hi ,

You know I had surgery on 2 of my toes back in 2000. They were

curled just a bit. Not too bad. At the time I wore the high heels

with the pointy toes and my podiatrist told me wearing shoes like

that had caused my toes to turn like that. She did a 'tendon

release' surgery where she clipped the tendon and and re-positioned

it and the toes were completely straight. Little did I know at the

time that the tethered cord was most likely the culprit for my toes

to turn like that.

Like you I used to run alot. Back in 2004 I noticed that when I ran

my left foot would start to feel numb and the numbness would run up

my ankle until I stopped running. It almost felt as if my foot

wasn't there. And then if I walked in heels on uneven pavement or

walked in certain heels I felt off balance. This prompted me to go

back to my podiatrist thinking I did something to my ankle. Never

in a million years did I think it was my spinal cord. She sent me

to a neurologist and that's how I came to find out it was tcs.

I don't really have any problem with my toes. I guess because she

did the tendon release. My big problem is the weakness in my calf.

I almost wish I didn't have the surgery. I wonder if I would have

just held off what the outcome would have been. If it would have

progressed slowly or what. I will let you know what I find out when

I go see my neurologist again.

Thanks for listening!

> >

> > Hi everyone,

> >

> > I have a question for the group. Since my detethering my

calves

> are atrophying despite rigorous strengthen. Because of this my

toes

> are starting to curl in and my arches feel tighter. Also it

feels

> like I am loosing range of motion to my ankles when I flex

toward my

> chin.

> > I have been stretching like crazy.

> >

> > Has anyone had similar issues? ( I know Rick has had some

> experience, has anyone else?). And what are you doing for it?

> >

> > Thanks for your reply.

> >

> > Blessings,

> >

> >

> >

[Guest guest]

,

Were you having any other symptoms other than numbness and your toes curling up

before you had your detethering? Were you having weakness in your legs or

anything? I said that I was having back pain as my symptom which is true. That

is what got me into the NS. But I was also feeling like I was going to loose

bladder control and I was having some weakness in my right leg. Then between my

first visit to the NS and surgery my weakness progressed rapidly. I know TCS

usually slowly affects people. However, by the time I had surgery I could

hardly get upstairs. So for me I don't know if I had a choice but I still play

the whole game of " what if I didn't have surgery " . Because my NS said that I

would walk better after the surgery and I could probably be back to work in a

month. Also that I would only be in the hospital for four days..... three weeks

later I was still there. It has been a challenging recovery. Anyways, things

don't always go as planned. I have tried to learn that I am not in control God

is.... It is hard to surrender sometimes though.

I agree what really stinks is that I can't wear any cute shoes with heels!!!!

Ha ha ha No but really I am blessed that I can still walk. If you don't

mind me asking how old are you? I noticed that it seems like most adults with

TCS that develop symptoms seem to be in their 30's and older. This could be

totally wrong but it just seems that way. Were you able to have children? I

think that the birth of my son may have been part of what caused more symptoms,

because I was lifting him all the time (I wouldn't change having him for the

world!). He is two now and 33lbs. So maybe the wear and tear on the spine.

Also, I did lift quite a bit as a nurse.

Just to let you know I have been unable to strengthen my calves either. I am

trying everything. I can't stand on my toes at all ... unless I am in a pool.

I have been learning how to swim freestyle for exercise. I love to run but I

think those days are over. That article I told you about warns that running is

the worst exercise for people with neuropathic limb. It can cause small

fractures in some people. Those affected with Charcot joint which is sometimes

seen with NL. You might look into getting orthodics made. I am in that process

now. I hope it prevents the damage seen with NL.

Thanks for your reply. Good luck with your rehab.

Blessings,

Re: Ankle and foot problems

Hi ,

You know I had surgery on 2 of my toes back in 2000. They were

curled just a bit. Not too bad. At the time I wore the high heels

with the pointy toes and my podiatrist told me wearing shoes like

that had caused my toes to turn like that. She did a 'tendon

release' surgery where she clipped the tendon and and re-positioned

it and the toes were completely straight. Little did I know at the

time that the tethered cord was most likely the culprit for my toes

to turn like that.

Like you I used to run alot. Back in 2004 I noticed that when I ran

my left foot would start to feel numb and the numbness would run up

my ankle until I stopped running. It almost felt as if my foot

wasn't there. And then if I walked in heels on uneven pavement or

walked in certain heels I felt off balance. This prompted me to go

back to my podiatrist thinking I did something to my ankle. Never

in a million years did I think it was my spinal cord. She sent me

to a neurologist and that's how I came to find out it was tcs.

I don't really have any problem with my toes. I guess because she

did the tendon release. My big problem is the weakness in my calf.

I almost wish I didn't have the surgery. I wonder if I would have

just held off what the outcome would have been. If it would have

progressed slowly or what. I will let you know what I find out when

I go see my neurologist again.

Thanks for listening!

> >

> > Hi everyone,

> >

> > I have a question for the group. Since my detethering my

calves

> are atrophying despite rigorous strengthen. Because of this my

toes

> are starting to curl in and my arches feel tighter. Also it

feels

> like I am loosing range of motion to my ankles when I flex

toward my

> chin.

> > I have been stretching like crazy.

> >

> > Has anyone had similar issues? ( I know Rick has had some

> experience, has anyone else?). And what are you doing for it?

> >

> > Thanks for your reply.

> >

> > Blessings,

> >

> >

> >

[Guest guest]

,

No I wasn't having any other symptoms than that. No weakness in my

legs. The Neurosurgeon asked me about bladder and bowel issues and

I didn't have any at the time, although I had been to see a gastro

dr, back in 2001 for ibs but it went away on it's own.

To answer your question. I am 32. I was diagnosed in October 2004.

I was 30 at the time. My surgery was in January 2005. I was in the

hospital fo 5 days. Out of work for 1 month. I was back in the gym 3

weeks after surgery. It was a quick recovery. I almost wondered why

I had it until now. I have been pretty active all my life. When I

was younger I figure skated and took ballet. In high school I

played field hockey and was a cheerleader. In college I ran alot

and worked out all the time. It's amazing that I went all these

years and never showed symptoms until I was 30. I do not have

children yet. I'm actually getting married this October and we plan

to have children in the next couple years. I still go to the gym and

do the bike and the elliptical. I walk outside as well. I tried

running a couple weeks ago but my left quad felt really tight

afterwards. Also, when I walk alot, say if I go shopping all day my

legs feel more tired than they used to before surgery.

One other thing I noticed is on some days when I'm at work all day,

I've had one of my friends ask me if I'm limping. I really hate

that. Because I don't think I am. It's usually on a day when I wear

shoes with a 2 inch heel or so. I work in advertising so I have to

dress up for work. But then other days I'll ask my friend if I'm

walking okay and she'll tell me yes. I guess it depends on how much

activity I've done or should I say not done. Like today I've been

in meetings all day and had to sit down all day and I notice my

lower back aches a bit and my quad does too. If I hadn't been

sitting all day I'd be fine. The surgery went fine and I felt okay

afterwards but in the past few months I noticed my legs getting

tired more easily and the left calf muscle not building up. It just

seems like I'm getting worse now. Not sure where to go from here.

> > >

> > > Hi everyone,

> > >

> > > I have a question for the group. Since my detethering my

> calves

> > are atrophying despite rigorous strengthen. Because of this my

> toes

> > are starting to curl in and my arches feel tighter. Also it

> feels

> > like I am loosing range of motion to my ankles when I flex

> toward my

> > chin.

> > > I have been stretching like crazy.

> > >

> > > Has anyone had similar issues? ( I know Rick has had some

> > experience, has anyone else?). And what are you doing for it?

> > >

> > > Thanks for your reply.

> > >

> > > Blessings,

> > >

> > >

> > >

[Guest guest]

Hi AG,

I did have surgery. My first surgery was when I was two. I either had a

lipomyelominingeocele or a myelominingeocele. I thought it was a myelo. But my

most recent surgery in Jan. 2006 for detethering also showed a lipoma probably

left from years ago and quite a bit of scar tissue.

I didn't develop neuropathy until after this last surgery along with the claw

toes and ankle stiffness. I am sure it is related to damage to L5 -S1. I also

have lost the ability to do toe raises. My gastroc (calf) muscles are almost

non-existent.... but the great thing is I can WALK !!!! So I do have many

blessings. But that doesn't stop me from praying for a complete healing.

Thanks for you reply.

Blessings,

Re: Ankle and foot problems

Hi ,

You know I had surgery on 2 of my toes back in 2000. They were

curled just a bit. Not too bad. At the time I wore the high heels

with the pointy toes and my podiatrist told me wearing shoes like

that had caused my toes to turn like that. She did a 'tendon

release' surgery where she clipped the tendon and and re-positioned

it and the toes were completely straight. Little did I know at the

time that the tethered cord was most likely the culprit for my toes

to turn like that.

Like you I used to run alot. Back in 2004 I noticed that when I ran

my left foot would start to feel numb and the numbness would run up

my ankle until I stopped running. It almost felt as if my foot

wasn't there. And then if I walked in heels on uneven pavement or

walked in certain heels I felt off balance. This prompted me to go

back to my podiatrist thinking I did something to my ankle. Never

in a million years did I think it was my spinal cord. She sent me

to a neurologist and that's how I came to find out it was tcs.

I don't really have any problem with my toes. I guess because she

did the tendon release. My big problem is the weakness in my calf.

I almost wish I didn't have the surgery. I wonder if I would have

just held off what the outcome would have been. If it would have

progressed slowly or what. I will let you know what I find out when

I go see my neurologist again.

Thanks for listening!

> >

> > Hi everyone,

> >

> > I have a question for the group. Since my detethering my

calves

> are atrophying despite rigorous strengthen. Because of this my

toes

> are starting to curl in and my arches feel tighter. Also it

feels

> like I am loosing range of motion to my ankles when I flex

toward my

> chin.

> > I have been stretching like crazy.

> >

> > Has anyone had similar issues? ( I know Rick has had some

> experience, has anyone else?). And what are you doing for it?

> >

> > Thanks for your reply.

> >

> > Blessings,

> >

> >

> >

[Guest guest]

Hi

I forgot to mention activities that require repetitive flexion-extension at the

waist as triggers to tsc, I'm sure you've noticed.

I'm debating whether I should do some imaging next winter with a more dynamic

MRI (like prone or cine) to see if my right leg issues are all residual damage

from the tsc or persistent adhesions at some level that weren't removed during

surgery. I only had regular MRIs prior to surgery, they didn't offer anything

else. My surgeon felt it was pretty straight forward b/c TFT and only needed

section filum which in a way is nice b/c it is only a small laminectomy at S1 to

access the cord whereas some surgeons will do L2 to S1 to get better access to

full lumbar cord. Pluses and minuses of course of the different techniques, not

much of a standard out there. I don't want to get greedy but at some point it

might be useful information for the long term. I don't think my surgeon will

think any further tests are needed, I have my follow up in Sept, will see. I

probably need a good neurologist for the long term, I don't know any that know

anything about tsc. Mine was fairly convinced that I had a virus and kept

telling my how much healthier I was than the elderly patients in the office and

blew off my problems. I see those situations the other way round, the younger

the pt, more to lose. I'm 38, still need to raise to small kids and make a

living!

Did you do any imaging or NCS/EMG/SSEP since surgery?

ia

Re: Ankle and foot problems

Hi ,

You know I had surgery on 2 of my toes back in 2000. They were

curled just a bit. Not too bad. At the time I wore the high heels

with the pointy toes and my podiatrist told me wearing shoes like

that had caused my toes to turn like that. She did a 'tendon

release' surgery where she clipped the tendon and and re-positioned

it and the toes were completely straight. Little did I know at the

time that the tethered cord was most likely the culprit for my toes

to turn like that.

Like you I used to run alot. Back in 2004 I noticed that when I ran

my left foot would start to feel numb and the numbness would run up

my ankle until I stopped running. It almost felt as if my foot

wasn't there. And then if I walked in heels on uneven pavement or

walked in certain heels I felt off balance. This prompted me to go

back to my podiatrist thinking I did something to my ankle. Never

in a million years did I think it was my spinal cord. She sent me

to a neurologist and that's how I came to find out it was tcs.

I don't really have any problem with my toes. I guess because she

did the tendon release. My big problem is the weakness in my calf.

I almost wish I didn't have the surgery. I wonder if I would have

just held off what the outcome would have been. If it would have

progressed slowly or what. I will let you know what I find out when

I go see my neurologist again.

Thanks for listening!

> >

> > Hi everyone,

> >

> > I have a question for the group. Since my detethering my

calves

> are atrophying despite rigorous strengthen. Because of this my

toes

> are starting to curl in and my arches feel tighter. Also it

feels

> like I am loosing range of motion to my ankles when I flex

toward my

> chin.

> > I have been stretching like crazy.

> >

> > Has anyone had similar issues? ( I know Rick has had some

> experience, has anyone else?). And what are you doing for it?

> >

> > Thanks for your reply.

> >

> > Blessings,

> >

> >

> >

[Guest guest]

Hi ia,

I am 32 and have a two year old little boy (almost three). So I know what you

mean about needing to stay healthy. I wouldn't want to miss any part of Luke's

(my son) life!

The only imaging test I have had done post op is another MRI. I was having more

back pain and my NS wanted to make sure I didn't retether. I didn't. Thank

God! I have been working so hard to rehab since Jan. 2006 that it would

devastate me to retether. I know it happens but I will continue to pray that it

doesn't.

Your NS seems to be progressive. That's great! I had Laminectoimes from L4-S2.

I guess it still gives you structural support... at least that is what my NS

said. It seems like alot of bone would be missing. But I know it is only the

central most aspect of the vertebrae.

I hope all is well with you.

Blessings,

Re: Ankle and foot problems

Hi ,

You know I had surgery on 2 of my toes back in 2000. They were

curled just a bit. Not too bad. At the time I wore the high heels

with the pointy toes and my podiatrist told me wearing shoes like

that had caused my toes to turn like that. She did a 'tendon

release' surgery where she clipped the tendon and and re-positioned

it and the toes were completely straight. Little did I know at the

time that the tethered cord was most likely the culprit for my toes

to turn like that.

Like you I used to run alot. Back in 2004 I noticed that when I ran

my left foot would start to feel numb and the numbness would run up

my ankle until I stopped running. It almost felt as if my foot

wasn't there. And then if I walked in heels on uneven pavement or

walked in certain heels I felt off balance. This prompted me to go

back to my podiatrist thinking I did something to my ankle. Never

in a million years did I think it was my spinal cord. She sent me

to a neurologist and that's how I came to find out it was tcs.

I don't really have any problem with my toes. I guess because she

did the tendon release. My big problem is the weakness in my calf.

I almost wish I didn't have the surgery. I wonder if I would have

just held off what the outcome would have been. If it would have

progressed slowly or what. I will let you know what I find out when

I go see my neurologist again.

Thanks for listening!

> >

> > Hi everyone,

> >

> > I have a question for the group. Since my detethering my

calves

> are atrophying despite rigorous strengthen. Because of this my

toes

> are starting to curl in and my arches feel tighter. Also it

feels

> like I am loosing range of motion to my ankles when I flex

toward my

> chin.

> > I have been stretching like crazy.

> >

> > Has anyone had similar issues? ( I know Rick has had some

> experience, has anyone else?). And what are you doing for it?

> >

> > Thanks for your reply.

> >

> > Blessings,

> >

> >

> >