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ANY IDEAS?!

Posted by Dionne C on 8/30/02 at 15:43 (093998)

I had a stroke in 1996, aged 17. Most movement has returned, apart from my right foot. The only way I can describe it is like club foot i.e turning in and over. Over the past 6 years I have tried splints, botox, 3 tendon tansferrals and now a caliper, to name but a few. All of which have failed. I am in an imense amount of pain all of the time. I am considering amputation, which my surgeon has not ruled out. Obviously this is a last resort.

I would like to know if anyone has, or knows of, anything else to try. I am prepared to try anything, or travel anywhere, to relieve my pain!

Thanks,

Dee

Re: ANY IDEAS?!

BrianJ on 8/30/02 at 19:01 (094017)

I am very sorry to hear you are in so much pain. I suggest that the best way to find an answer would be to find a hospital, medical school or clinic that will address your problem as a 'case study' for a team of doctors and/or med students to consider to consider. In this way, you can have the benefit of different doctors with different specialities all collaborating at once to help you. I think this will work much better than the typical 'one doctor at a time' method, where the first doctor rarely collaborates with the next one.

Good luck, and please let us know how things are going.

Re: ANY IDEAS?!

kay f on 8/30/02 at 20:04 (094025)

bryan, do you know how one would go about getting into seeing the docs at one of those places? are they more expensive than seeing a regular doc? are you talking about a teaching hospital?
kay

Re: Pain management!!

BrianG on 8/30/02 at 21:24 (094035)

Have you tried a pain management clinic? It makes more sense than amputation. Get a referrel from your doctor, or a local hospital. Sometimes there can be a long wait, tell them that you will be glad to come in if there is a cancelation.

Good lck
BrianG

Re: ANY IDEAS?!

Joe S on 9/14/02 at 00:23 (095302)

Where are you located? Have you seen a physiatrist. These are physicians who specialize in physical medicine. When I see complicated cases that involve various contractures and spasticities I will send these patients to a physiatrist. From there they typically perform an EMG which is an electromyograph. It's kind of a test that looks for an alteration in nerve conduction and such. You were 17 when you had the stroke? That's pretty young. One question, do you have any use of your ankle? Does your foot flex at the ankle? When at rest, how does your foot lay? Is it contracted in a certain position? Can you pull your toes up without assistance? Patients who have had a stroke will typically develop a foot drop. Sometimes this requires a special brace. If I understand you, your foot is turning in. You may be a very good candidate for a rearfoot arthrodesis (fusing your foot into a certain position). There are a ton of medical centers that specialize in difficult cases such as this. If you will tell me you general location, I maybe able to point you to a good university or teaching hospital.

Re: Pain management!!

Joe S on 9/14/02 at 00:32 (095303)

Brian, the only problem with pain management is that this young lady may want to try and lead a somewhat normal life. I have an individual right now that I'm seeing for severe foot deformity secondary to a car accident that has developed into a chronic nonhealing wound. He has had multiple surgeries to try and save his foot. The trauma surgeon did save his foot but the deformity is such that he can't walk without exrteme pain. This man is 30 years old and basically broke down into tears the other day because he can't play with his son due to pain in his foot. He is unable to take narcotics due to his job. He is a salesman who has to drive about 100 miles per day. He does not want to be disabled either. He is seriously considering an amputation. He is young enough to rehabilate himself with a prosthetic limb and lead a normal life. The prosthetic limbs that they make now a very high tech. Very functional. This would afford this gentleman to get back out and play with his son to a certain degree. Moreso than he is now. I try and look at it like it's my foot. What would I want done to myself? I think if I was in chronic intractable pain with no real hope of getting any better I'd opt for an amputation. They make limbs that you can cycle with, you can swim with. The technology is amazing. Anyway, I'm way too longwinded.

Re: Pain management!!

BrianG on 9/15/02 at 22:38 (095394)

Hi Dr. Joe,

I don't know how easy it is now a days to just go in and get your feet amputated. There is a web site devoted to a young man who would like his feet amputated, as they are useless, due to an accident. Apparently no insurance will pay, as he doesn't have pain. The feet are useless below the ankle, dead, which makes it very hard for him to get around. You can check it out at http://www.cutoffmyfeet.com

Now he plans to do it himself!!!! Anyways, there are many, many people who lead useful lives that take daily pain meds. They (meds) have given people their lives back, without all the possible problems related to surgery. I realize I don't know this person's pain, but it seems a lot of people exagerate their pain, when 1st posting here. Yes, I too 'might' consider amputation, IF the daily pain meds did not give me relief, or I was too severly deformed to ever walk again.

BrianG

PS I would definetly try the implanted Medtronics pain pump, before any ampuation!!

Re: Amputation

Dionne C on 9/16/02 at 12:31 (095442)

My pain is so strong it cannot be controlled by any medication I have been offered. I have a high pain threshold usually, but this pain is far too strong, and getting worse every week that pases.

I am waiting to see an amputation specialist to see if he thinks amputation is an option, I guess to see what frame of mind I am in!
When I am sitting without shoes, my foot is turning in i.e resting on the outside of my foot. I go to stand unaided, and the ankle just fails me. I have no movement in the joint. It is not only the ankle, even if physio pulls it into a good position while I am lying down (unable to get a good position when standing), the front section of the foot is still turning in & over.

I am only 23, have no children at the moment, but would like them someday. How could I look after a child like this?!

For those that asked, I am in England.

Re: Amputation, I hope not!

BrianG on 9/17/02 at 21:58 (095585)

Hi Dionne,

It does seem like you do have some symptoms that are not usually seen on this forum, and I can feel for you. Amputation may very well be in your future, but have you checked out the implantable pain pumps? They are something like 100 times more efficient than taking oral opiates. If you get a chance, check out this web site: http://www.medtronics.com
When the home page come up, scroll down on the left side and click on 'health information'. When the next page comes up, click on 'pain'. It's also on the left side. A variety of meds can be added to the pump, from opiates, to muscle relaxants and nausea meds.

If no one has looked into this for you yet, I think it would be good to check out. Of course not all doctors are trained to do this type of work. I believe if you contact Medtronics, they will refer you to a pain specialist in your area. I do know of a person with terminal esophageal cancer. He admits that without his pain pump, he would not be alive today. His pain is just about as bad as it can get. I hope you get the help you deserve. If you have any questions, I'll do my best to point you in the right direction. You can also write to me at (email removed) if you want.

Regards
BrianG

Re: ANY IDEAS?!

pala on 10/01/02 at 15:03 (096612)

i am not a doctor just a fellow sufferer. i have heard that rehabilitation institute of chigago is very highly rated. i have talked to the physical therapists there and they have directed me to places closer to home. they were very helpful to me. if i could afford it i'd go there. maybe they have some newfangled ideas for you before you take a drastic measure. they have orthotists there and also i think they are conncected in some way to a hospital as well. please keep us posted , i wish you the best.

Re: ANY IDEAS?!

pala on 10/01/02 at 15:08 (096614)

brian, where do you find medical attention like this? i've been to emory university hospital in atlanta, considered the best in town and it's the same old thing. one idiot of a nasty doctor giving one minute of his time for a lot of money and being absolutely wrong and useless as well. and almost yanking my foot off in his exam. it took me forever to recuperate from his healing touch. i have heard johns hopkins had a team approach once, i wonder if they still do.

Re: Pain management!!

pala on 10/01/02 at 15:22 (096617)

if they can do all that why can't they heal my pf? or make an orthotic for it. sometimes i want to chew off both my feet.

Re: ANY IDEAS?!

BrianJ on 8/30/02 at 19:01 (094017)

I am very sorry to hear you are in so much pain. I suggest that the best way to find an answer would be to find a hospital, medical school or clinic that will address your problem as a 'case study' for a team of doctors and/or med students to consider to consider. In this way, you can have the benefit of different doctors with different specialities all collaborating at once to help you. I think this will work much better than the typical 'one doctor at a time' method, where the first doctor rarely collaborates with the next one.

Good luck, and please let us know how things are going.

Re: ANY IDEAS?!

kay f on 8/30/02 at 20:04 (094025)

bryan, do you know how one would go about getting into seeing the docs at one of those places? are they more expensive than seeing a regular doc? are you talking about a teaching hospital?
kay

Re: Pain management!!

BrianG on 8/30/02 at 21:24 (094035)

Have you tried a pain management clinic? It makes more sense than amputation. Get a referrel from your doctor, or a local hospital. Sometimes there can be a long wait, tell them that you will be glad to come in if there is a cancelation.

Good lck
BrianG

Re: ANY IDEAS?!

Joe S on 9/14/02 at 00:23 (095302)

Where are you located? Have you seen a physiatrist. These are physicians who specialize in physical medicine. When I see complicated cases that involve various contractures and spasticities I will send these patients to a physiatrist. From there they typically perform an EMG which is an electromyograph. It's kind of a test that looks for an alteration in nerve conduction and such. You were 17 when you had the stroke? That's pretty young. One question, do you have any use of your ankle? Does your foot flex at the ankle? When at rest, how does your foot lay? Is it contracted in a certain position? Can you pull your toes up without assistance? Patients who have had a stroke will typically develop a foot drop. Sometimes this requires a special brace. If I understand you, your foot is turning in. You may be a very good candidate for a rearfoot arthrodesis (fusing your foot into a certain position). There are a ton of medical centers that specialize in difficult cases such as this. If you will tell me you general location, I maybe able to point you to a good university or teaching hospital.

Re: Pain management!!

Joe S on 9/14/02 at 00:32 (095303)

Brian, the only problem with pain management is that this young lady may want to try and lead a somewhat normal life. I have an individual right now that I'm seeing for severe foot deformity secondary to a car accident that has developed into a chronic nonhealing wound. He has had multiple surgeries to try and save his foot. The trauma surgeon did save his foot but the deformity is such that he can't walk without exrteme pain. This man is 30 years old and basically broke down into tears the other day because he can't play with his son due to pain in his foot. He is unable to take narcotics due to his job. He is a salesman who has to drive about 100 miles per day. He does not want to be disabled either. He is seriously considering an amputation. He is young enough to rehabilate himself with a prosthetic limb and lead a normal life. The prosthetic limbs that they make now a very high tech. Very functional. This would afford this gentleman to get back out and play with his son to a certain degree. Moreso than he is now. I try and look at it like it's my foot. What would I want done to myself? I think if I was in chronic intractable pain with no real hope of getting any better I'd opt for an amputation. They make limbs that you can cycle with, you can swim with. The technology is amazing. Anyway, I'm way too longwinded.

Re: Pain management!!

BrianG on 9/15/02 at 22:38 (095394)

Hi Dr. Joe,

I don't know how easy it is now a days to just go in and get your feet amputated. There is a web site devoted to a young man who would like his feet amputated, as they are useless, due to an accident. Apparently no insurance will pay, as he doesn't have pain. The feet are useless below the ankle, dead, which makes it very hard for him to get around. You can check it out at http://www.cutoffmyfeet.com

Now he plans to do it himself!!!! Anyways, there are many, many people who lead useful lives that take daily pain meds. They (meds) have given people their lives back, without all the possible problems related to surgery. I realize I don't know this person's pain, but it seems a lot of people exagerate their pain, when 1st posting here. Yes, I too 'might' consider amputation, IF the daily pain meds did not give me relief, or I was too severly deformed to ever walk again.

BrianG

PS I would definetly try the implanted Medtronics pain pump, before any ampuation!!

Re: Amputation

Dionne C on 9/16/02 at 12:31 (095442)

My pain is so strong it cannot be controlled by any medication I have been offered. I have a high pain threshold usually, but this pain is far too strong, and getting worse every week that pases.

I am waiting to see an amputation specialist to see if he thinks amputation is an option, I guess to see what frame of mind I am in!
When I am sitting without shoes, my foot is turning in i.e resting on the outside of my foot. I go to stand unaided, and the ankle just fails me. I have no movement in the joint. It is not only the ankle, even if physio pulls it into a good position while I am lying down (unable to get a good position when standing), the front section of the foot is still turning in & over.

I am only 23, have no children at the moment, but would like them someday. How could I look after a child like this?!

For those that asked, I am in England.

Re: Amputation, I hope not!

BrianG on 9/17/02 at 21:58 (095585)

Hi Dionne,

It does seem like you do have some symptoms that are not usually seen on this forum, and I can feel for you. Amputation may very well be in your future, but have you checked out the implantable pain pumps? They are something like 100 times more efficient than taking oral opiates. If you get a chance, check out this web site: http://www.medtronics.com
When the home page come up, scroll down on the left side and click on 'health information'. When the next page comes up, click on 'pain'. It's also on the left side. A variety of meds can be added to the pump, from opiates, to muscle relaxants and nausea meds.

If no one has looked into this for you yet, I think it would be good to check out. Of course not all doctors are trained to do this type of work. I believe if you contact Medtronics, they will refer you to a pain specialist in your area. I do know of a person with terminal esophageal cancer. He admits that without his pain pump, he would not be alive today. His pain is just about as bad as it can get. I hope you get the help you deserve. If you have any questions, I'll do my best to point you in the right direction. You can also write to me at (email removed) if you want.

Regards
BrianG

Re: ANY IDEAS?!

pala on 10/01/02 at 15:03 (096612)

i am not a doctor just a fellow sufferer. i have heard that rehabilitation institute of chigago is very highly rated. i have talked to the physical therapists there and they have directed me to places closer to home. they were very helpful to me. if i could afford it i'd go there. maybe they have some newfangled ideas for you before you take a drastic measure. they have orthotists there and also i think they are conncected in some way to a hospital as well. please keep us posted , i wish you the best.

Re: ANY IDEAS?!

pala on 10/01/02 at 15:08 (096614)

brian, where do you find medical attention like this? i've been to emory university hospital in atlanta, considered the best in town and it's the same old thing. one idiot of a nasty doctor giving one minute of his time for a lot of money and being absolutely wrong and useless as well. and almost yanking my foot off in his exam. it took me forever to recuperate from his healing touch. i have heard johns hopkins had a team approach once, i wonder if they still do.

Re: Pain management!!

pala on 10/01/02 at 15:22 (096617)

if they can do all that why can't they heal my pf? or make an orthotic for it. sometimes i want to chew off both my feet.