Walking Quad Foot Pain Issues

[Princess "Leia"]

After almost seven years post op from a Spinal Cord Tumor, C2-C6, 95% resected, (just had MRI, no regrowth)I have been walking, granted it is difficult because of weakness,numbness all complicated by very bad gait. I now have Plantar Fascistic/major heel spurs and am in incredible pain and now have great difficulty walking. Seems I may have damaged my arches by the shoes I have been wearing which had little arch support which I feel is only part ofthe problem. I thought they were great because they were Rockport, had rubber soles and also strapped in the back. With numb feet it was all I could keep on that did not hurt. I live in sandles.

I went to foot doctor a week ago and he injected cortisone, gave me splints to wear and exercises to do as well. Now I am in even more pain than I can bear and it seems to have aggravated it. I go back to see him today.

My questions, do you think I damaged my feet by walking and that my very weak leg muscles are a large part of the problem. I know that the calve muscles/tendions work in conjuction with the feet muscles/tendons. The doctor does not quite grasp what I am telling him about situation. Did I read here at CC a walking quad who was concerned about working and damaging the body further. I am neginning to wonder what if anything I am damaging.

I did manage to get to a great shoe store to try and purchase a pair of NOAT"s or a shoe of that calibur but my feets hurt so bad I couldn't make an informative choice and with the price tag of 100+ I wanted to be right.

This is so frustrating because it only complicates by other pain issues even further. Please,anyone out there have any thoughts or ideas or similar issues.

Thanks,
Pam

[firesmurf]

hi princess,you know,you could be right.just from my own experience with my knee?i developed whats called charcots syndrome in it and this,from what my NS told me was solely due to the fact that I have partial desensitization in my right side from the chest on down only on my R side,absolutly nothing on my L.so of course,this includes everything down to my little toes now.I also have brown sequard syndrome,this is what actually caused the loss of sensitization and also the loss of the ability to actually feel the difference between hot and cold.they both feel like sorta "room temperature' now?

well,he told me that because of the loss of desensitization,i now walk very differently than I did before.believe me,my shoes( one particular pair of sandles I wore all summer last year?)REALLY show this by the huge amount of damage to the heel area on my R one.it is like demolished looking and the other sandle looks just fine and dandy.I never really noticed this until I really just looked at them one day before I put them on.the damage is kind of only on one side of the sandle too so I am really displacing my wieght in a very wierd way now.

with the charcots(which by the way can also be what your problem is) happens because of the different way we now walk,it does not always really "appear' that we are,but we are walking differently now just because of that los of sensation we used to have.my NS told me that one of the many problems i have in my knee is indeed the charcots because of having the loss,everytime I took a step and came down on my leg,the knee is actually taking hits causing repetitive micro or mini traumas,this can cause a deterioration of the joints and a huge list of other issues too.

try doing some research on charcots syndrome and see what you think as far as comparative symptoms.this could be a very likely possibility just from what you have explained here about your symptoms/damage,and most importantly,the desensitization issue.let me know what you think,K?the charcots is just one of many possibilitys.marcia

[Tarkus]

I'm a para "walkie" and have the same problems brewing.

As firesmurf so aptly put it not all doctors understand the long term effects on the rest of the body, in my case the hips from what I call my "John Wayne" swagger caused because of walking heavy on the heels.

The best I have found is try to find the right shoe, easier said than done, and when I know I have a lot of walking to do I use a mobility device.

Notice I said "mobility device", not wheelchair or scooter. God has given me the ability to stand when the doctors said I wouldn't so I don't plan to start sitting now after all the rehab I did to get on my feet.

So I use a "stand-up" device that keeps the pounding and wobble to a minimum.

Regards,
Alan

[Princess "Leia"]

Hi Marcia,
Thanks for the very interesting heads up info but I am not too sure about Charcots. I will ask the Dr next week. My feet are about 40% without feeling. My gait is different post op because of assorted weak muscles in my legs damages when they removed the tumor. Actually, I always had problems with the left foot sort of dragging,which was a symptom of the tumor but never realized it untill the tumor was discovered. After it was removed I sustained permanent damage on the left side, I too have Brown Sequard

I was with the doctor on Friday and he said my feet are in great shape except for the heel spurs, exasperated by a weak gate. The ligaments are extremely tight and as I do the appropriate exercises, while working through the pain, I will feel better. Without a proper shoe to support the arches it would not work so I found a store that sells a shoe called NAOT. I purchased a pair and already feel a remarkable difference. Oh yea and no bare feet, flip flops or (slippers) which I love. I did manage to find a great pair of slippers with arches that I could hold on my feet, somewhat pricey but worth it to me. And I thought the Rockports were doing the job! I was very good about replacing the style I had about every 6 months and rotated 3-4 pairs at a time. But again they had no arch support which made it all the worse. Just a heads up to all.

Hi Alan, I sure don't swagger like John Wayne rather waddle like a duck doing an bad impression of Jaylo. LOL. I am afraid my center of gravity is much lower too as is the case with many women..I probably should not be doing all the walking I am doing too but just continue to push myself for fear of not wanting to get back up. I guess it is to my detriment and beginning to catch up to me. But there are so many places to go, so much to do and so little time. Am curious about what sort of stand-up device you are using?
Hey, I see from your profile you are from NJ. Me too..although I have long gone ages ago. I also was just up your way at Amelia Island for a long weekend. Very pretty up there although I think we have some mighty gorgeous beaches down this way in St Lucie County. Great fishing too off the Ft Pierce inlet.

Thanks,
Pam

[Tarkus]

Pam,
St. Lucie and Martin counties are two of my favorite parts of FL.:applaud:

If you boat or fish it's "The Crossroads", Atlantic or Gulf take your pick.
I also see the big subdivisions have started in that area. Hard to hide a nice place to live.

As far as the "Stand-Up" check out this thread and feel free to contact me about anything you want about the device. It has changed my life.

http://sci.rutgers.edu/forum/showthread.php?t=63799

All the best,
Alan

PS-I don't sell these things, I'm just looking to show options. If you would like to demo let me know.

[firesmurf]

well,its nice to meet anoth BS person.is this not the wierdest flippin crap ever to deal with?its just soo hard to try and actually explain all of this to anyone.yea,I can feel you touching me but not the ice cube or the hot burning cole you just layed on my leg.and by the way,just take that needle and stick it into my leg or my stomach,i can feel it but it doesn't hurt one bit.oh yea,I DO have some really horrid pain down below tho.WHAT??this just really totally amazes my husband.just to freak him out,i will stick a needle into my stomach once in a while.he just totally freaks.

I would really do some research on charcots before you go to your next doc appt just to compare your symptoms?then print off the most informative stuff just in case he really is not aware of what charcots actually is.i have done this with alot of my other specialists I have to see since they don't specialize in these areas and have no clue just what it actually is,so i just do this to give them some idea of what specific types of syndrome I have developed since my SCI.since some of the symptoms I have,mostly from the specific tract damage in the cord,they govern many areas and are affecting things that my other medical condtions consist of.this just gives them reasons as to why certain things may be going on in one of 'their' specialized areas.just a suggestion.its good when all your docs are really aware of all of your 'syndromes' that you have developed since your SCI.i know I seem to aquire or mutate all kinds of new syndromes that seem to pop up whenever the mood strikes.life is never dull anyway,lol.just look into it.i do think that the charcots may be playing a big part in your particular situation.you unfortunetly have the 'perfect set up" just like I have.

let us know how things go at your next appt.good luck princess,Marcia

[Tarkus]

well,its nice to meet anoth BS person.is this not the wierdest flippin crap ever to deal with?its just soo hard to try and actually explain all of this to anyone.yea,I can feel you touching me but not the ice cube or the hot burning cole you just layed on my leg.and by the way,just take that needle and stick it into my leg or my stomach,i can feel it but it doesn't hurt one bit.oh yea,I DO have some really horrid pain down below tho.WHAT??this just really totally amazes my husband.just to freak him out,i will stick a needle into my stomach once in a while.he just totally freaks.



You are a bit twisted:applaud: ......I will on occasion, just for kicks, have someone put a cigarette out on my foot.

Freaks out the wife too !!:D

Yes it's a load of crap because few understand how a person could look healthy yet be in an "alien" body.

Best to all, keep us posted.

Alan

[metronycguy]

i have major foot problems from my cauda equina injury, its a combination of a neuropathic foot from the nerve damage, rsd from a another injury to the foot and i pancake my foot by walking on denerved atrophied foot muscles, the afo is needed for pain anytime i go more than 50 feet, i wear the plastic clogs around the apartment for cushioning. the MBT sandals are the best thing i have found for my painful walking foot, the MBT sandals have a huge rocker sole with carbon plate plus inches of cushioning. i find that bending of the metatarsals causes a lot of my pain, with the MBT no bending.
in the colder months i went on lyrica which enabled me to wear a closed shoe somewhat, now thats its warm enough to wear a MBT sandal i am so much better mbt are expensive at 250 a pair but after dealinmg with this i would spend whatever it takes. i also use a lidioderm patches cut up to help with the localized pain in foot from pancake action.

[Broknwing]

I haven't been able to keep up with all the specifics and detail of evryone that has posted, but it seems that one common thread of evryone here(myself included) is a difficulty to find decent/adequate shoes....I recently found what have been a life-saver for me & my feet. They are the Nike Free 5.0s...Yeah, they cost about $85/pair, but after the painful hours upon hours of shoe failure, once I found one pair that I was able to put on, walk w/out my ankles rolling in and have my toes not crushed or feel like they were on fire, I was more than willing to order more. I can go on and on about them, but I'll be short and just tell what the purpose behind these shoes is....They are running shoes that are designed to train the foot, they are also intended to be worn without socks. I was fortunate enough to be able to try them on and test them out in a Niketown store when i was on vaca in Seattle a couple months ago, they are the only stores that actually carry them in stock. :( They can be ordered(and customized) online from the Nike website however. Unfortunately for you other FL folk, we do not have a Niketown store here in the state....The website will however show where they are located. www.nike.com

OK, no more of my Nike ravings here... :p

[firesmurf]

Thats it!! we are all just in reality aliens who came here from another planet.wow that DOES explain alot.think about it,who else out there is really like us???hmmmm.could it be a conspiracy?eventually we will take over the earth and everyone will come to know and adore us just like ET.And everyone WILL know just what we actually go thru just to get thru a day,and they will worship us as the ultimate gods of pain.
Tarkus.and you say I"M twisted???we could always join the circus?

okay,its just a thought.marcia

[Tarkus]

Thats it!! we are all just in reality aliens who came here from another planet.wow that DOES explain alot.think about it,who else out there is really like us???hmmmm.could it be a conspiracy?eventually we will take over the earth and everyone will come to know and adore us just like ET.And everyone WILL know just what we actually go thru just to get thru a day,and they will worship us as the ultimate gods of pain.
Tarkus.and you say I"M twisted???we could always join the circus?

okay,its just a thought.marcia

Circus, not bad....Human Cannonball would work for me, nit much left to break !:D

[Princess "Leia"]

Well I am glad to report that the foot exercises are kicking in, the new shoes work great and I have almost "happy feet" again. I will report back after I see the Dr end of week.

Broknwing, I think shoes are a big issue for so many of us and a hit or miss thing as well. Getting a proper fit is key! I prefer open shoes because anything else is uncomfortable because of nerve pain and most laced shoes kill me. Where are you in FL? We have a great group of us from the Sunshine State.

Yep, Alan I have been out to the Crossroads a few times. Never went out on the boat much because of the balance issues and numb hands which made it extremly difficult for me to hold on. So I prefered the lazy St Lucie River and my (captian) likes the Ocean or Indian River. Actually boating here is crazy because the water ways are so over crowded like our roads. Lots of nuts on our waters....

Pam

[Broknwing]

Broknwing, I think shoes are a big issue for so many of us and a hit or miss thing as well. Getting a proper fit is key! I prefer open shoes because anything else is uncomfortable because of nerve pain and most laced shoes kill me. Where are you in FL? We have a great group of us from the Sunshine State.
Pam
Pam-
I can completely agree about shoes being a big issue and hit & miss for us...I am sooo thrilled about the Nike's, I'd thought I'd never find shoes I could actually wear...Although my profile still says Orlando(i'm too lazy to change it..lol) a few months ago I moved to Avon Park. It's beautiful here, far enough from the city madness & traffic, yet close enough to EVERYWHERE that I could wanna be...It takes me about 1 1/2 hrs to get to just about anywhere I'd wanna go...

[Princess "Leia"]

Well, the heel pain is still here after 3 sets of cortisone. This is beginning to really tick me off. We are now beginning to discuss a new process called Orthoscope a extracorporeal shock waves therapy as a treatemt for chronic pain in the heels. Its non-inavasive and quick, 25 minitues. Anyone eve hear of this? Can I have shock therapy with such damage to my cspine.

My lower back is now all messed up with pain as well. I think my next step is to see a physiatrist(SP), have not since I left rehab. Again I think because I am walking with such problems I am setting myself up for permenent problems down the line. My gate is bad, my hips do not rotate properly when I walk and my feet hit awardly. Any other walkers out here with similar a situation?

Help,
Pam

[queen]

I walk on painful heels with curled toes on one foot and a hammertoe on the other. Making appt. soon with Physiatrist as well. Maybe she'll recommend breaking some toes so at least they will be flat in shoes and stop the sores from forming. This walking is really affecting the knees and
hips big time.
Q

[Tarkus]

Well, the heel pain is still here after 3 sets of cortisone. This is beginning to really tick me off. We are now beginning to discuss a new process called Orthoscope a extracorporeal shock waves therapy as a treatemt for chronic pain in the heels. Its non-inavasive and quick, 25 minitues. Anyone eve hear of this? Can I have shock therapy with such damage to my cspine.

My lower back is now all messed up with pain as well. I think my next step is to see a physiatrist(SP), have not since I left rehab. Again I think because I am walking with such problems I am setting myself up for permenent problems down the line. My gate is bad, my hips do not rotate properly when I walk and my feet hit awardly. Any other walkers out here with similar a situation?

Help,
Pam

We are getting into what my doctors refer to a my "physical currency". I have so much per day then the problems worsen.

For the longest time as a "walkie" I pushed it to the point that I would fracture my heels for landing hard on them. I have zero planter flex so the toes are just there for show.

I have played around with my shoes but now, to avoid hip etc. problems down the road, I "spend" the currency carefully and use a mobility aid at times to keep pace through the day.

Regards,
Alan

[Princess "Leia"]

Tarkus,
What a great way to put it. Some days my "physical currency" is very limited and I am afraid it's in the red. I need to be careful! I am at last seeing results from the treatments and can walk without pain which is great.
Pam

[Tarkus]

Tarkus,
What a great way to put it. Some days my "physical currency" is very limited and I am afraid it's in the red. I need to be careful! I am at last seeing results from the treatments and can walk without pain which is great.
Pam

I'm so happy to hear of you progress, and I hope it continues.:)

It took me a long time to figure out not to beat myself to death, but sometimes it's hard.

All the best,
Alan

[joanne]

I know this is an old posting, but I related to it! I have BS too!
I've been having pain, in my lack of sensation foot...under the ball of my foot. It hurts like mad. It travels into my toes. It's around the 3rd and 4th toe. I tried the wide shoes. The padded shoes and the cortisone shots.
Absolutely no relief. I don't want surgery. I am afraid of it...afterall it got me here in the first place. :(

So, does anyone else with BS have foot problems with their strong side(lack of sensation side)????? This pain is driving me crazy......i wish there was something Topical I could put on it to numb it. (oh yea, put a pain relieving numbing cream on my left foot that is already numb to pain.....just not numb to the phantom type pain!!??) ;)