Please reconsider this amputation. Give Dr. Maale a try. He can save your leg.
Knee Infection* Jvanp75's Thread
- Thread starter jvanp75
- Start date
Please don't get the idea that amputation is a once-and-for-all cure. Right now, you're probably thinking something like "Get the leg off and get rid of all the current problems."
As the mother of an above-knee amputee, I can tell you that living with an amputation is a daily grind - blisters and sores on the stump, repeated visits to the prosthetist, a new prosthetic if you lose or gain weight, sweating inside the prosthesis on hot days and finding a pool of perspiration inside when you take it off, needing crutches when you get up to the toilet at night, shoulders getting sore and eventually wearing out because of using crutches - etc, etc.
Hygiene of the stump is supremely important and if you get a boil it puts you on crutches for weeks.
Minor issues include not being able to twist or turn rapidly, not being able to bend your prosthetic fast enough to get it out of someone's way, often having to climb stairs with 2 feet to each step, being abused for using a handicap parking spot (because you don't look handicapped), possibly even having to have your car modified, so you can drive it.
I think that spending a year doing what's necessary in order to cure a joint infection is easy, when compared to living with an amputation for the rest of your life.
Please contact Dr Maale and see what he advises, before you make a final commitment to having an amputation.
As the mother of an above-knee amputee, I can tell you that living with an amputation is a daily grind - blisters and sores on the stump, repeated visits to the prosthetist, a new prosthetic if you lose or gain weight, sweating inside the prosthesis on hot days and finding a pool of perspiration inside when you take it off, needing crutches when you get up to the toilet at night, shoulders getting sore and eventually wearing out because of using crutches - etc, etc.
Hygiene of the stump is supremely important and if you get a boil it puts you on crutches for weeks.
Minor issues include not being able to twist or turn rapidly, not being able to bend your prosthetic fast enough to get it out of someone's way, often having to climb stairs with 2 feet to each step, being abused for using a handicap parking spot (because you don't look handicapped), possibly even having to have your car modified, so you can drive it.
I think that spending a year doing what's necessary in order to cure a joint infection is easy, when compared to living with an amputation for the rest of your life.
Please contact Dr Maale and see what he advises, before you make a final commitment to having an amputation.
I hope you do reconsider and carefully read what Celle has written about what life is like for her son as an amputee. You are young and you do have a life ahead of you! We don't make that recommendation about seeing Dr. Maale lightly. He has resolved some very, very complex infection cases and saved people from amputation that was being recommended as "the only alternative" by their surgeons. At least make an appointment with him (yes, I know that involves travel expenses, but hopefully you would be able to handle that for a short visit to Texas) to discuss your case. You need other opinions.
OP
OP
jvanp75
new member
I so greatly appreciate you advice and concern. Travel isn't an option at all. I lost my job last Sept, unemployment has run out and I have zero income at all. I have food only because of food stamps. Also flying is not an option due to the tremendous risk of the pressure changes etc pushing the MRSA into my blood stream.
I have done so much research on 2nd treatments with the return of MRSA after spacer placement and IV antibiotics. The odds of successful cure of MRSA at this point are extremely low. My surgeon conferred with the Dean and director of ID at MSU (who's been on my case since the beginning), along with conferring with the Cleveland Clinic where he did his residency. The MRI I had on Monday also shows significant bone loss and damage to the bones in my lower leg from the infection.
I am fully aware of the potential risks and issues following amputation and am fully prepared to deal with all of it. I am currently at the point that I cannot walk without crutches due to the pain and joint inflexibility. I have basically not had a life and been held hostage by this for the past 19 months. I have basically had no life for the past 20 yrs. My wife had Huntington's disease and for the last 12 years she was alive, I had no life while caring for her and our 2 young children. This is not a decision I've taken lightly, but with all of the information I have gathered I believe this is the best course for me.
I could care less about stares or what other people think when I park in handicap spaces now, even though I went from a limp, to using a cane, to now full time crutch use. I will still not care after the amputation. Many folks with heart conditions that need to use handicap parking get those stares and head shakes too. That's an issue of an ignorant public and again I don't care what anyone thinks.
I'm at peace with my decision and am more than ready to face the challenges ahead of me. I have an amazing support system and have complete faith that I've made the best decision for me...
I have done so much research on 2nd treatments with the return of MRSA after spacer placement and IV antibiotics. The odds of successful cure of MRSA at this point are extremely low. My surgeon conferred with the Dean and director of ID at MSU (who's been on my case since the beginning), along with conferring with the Cleveland Clinic where he did his residency. The MRI I had on Monday also shows significant bone loss and damage to the bones in my lower leg from the infection.
I am fully aware of the potential risks and issues following amputation and am fully prepared to deal with all of it. I am currently at the point that I cannot walk without crutches due to the pain and joint inflexibility. I have basically not had a life and been held hostage by this for the past 19 months. I have basically had no life for the past 20 yrs. My wife had Huntington's disease and for the last 12 years she was alive, I had no life while caring for her and our 2 young children. This is not a decision I've taken lightly, but with all of the information I have gathered I believe this is the best course for me.
I could care less about stares or what other people think when I park in handicap spaces now, even though I went from a limp, to using a cane, to now full time crutch use. I will still not care after the amputation. Many folks with heart conditions that need to use handicap parking get those stares and head shakes too. That's an issue of an ignorant public and again I don't care what anyone thinks.
I'm at peace with my decision and am more than ready to face the challenges ahead of me. I have an amazing support system and have complete faith that I've made the best decision for me...
- Joined
- Oct 27, 2011
- Messages
- 29,195
- Location
- United States, West
- Country
United States
- Gender
- Female
jvamp75,
There should be an amputee support group in your area, they will send members to meet with you and give you much needed support on your journey. Your Doctors should be able to refer you, if not search them out. You can call local prosthetists, they will know who to contact. Google "amputee support groups", you will be able to locate a group in your area. You may want to work with prosthetists who are also amputees, they know what they are doing.
Keep us posted on how you are doing,
There should be an amputee support group in your area, they will send members to meet with you and give you much needed support on your journey. Your Doctors should be able to refer you, if not search them out. You can call local prosthetists, they will know who to contact. Google "amputee support groups", you will be able to locate a group in your area. You may want to work with prosthetists who are also amputees, they know what they are doing.
Keep us posted on how you are doing,
@jvanp75 .... I appreciate that you shared so many details about your situation. You are right that you must do what is best for yourself and what you are comfortable with. My heart goes out to you at such a challenging time in your life and for all the difficult times you've had for more than a decade.
I can see that you have put a lot of thought and consideration into your decision and you've had excellent support from your medical team. You've done research as well. Sometimes we have to do difficult things in this life, and this decision hopefully will get you on the path to reclaiming your life.
I agree with Pumpkln's suggestion to find a support group to join. Much as people get help and strength from BoneSmart by talking with others going through similar circumstances, I believe you'd benefit from talking with others who have had a limb amputated and have gone on to make a life for themselves.
If you haven't done so, see if you can connect with a hospital social worker or one through your county to help you take advantage of all the resources that may be there for you. Since you are on food stamps, whatever office you dealt with may be a good place to start. Have you considered applying for Social Security Disability? That may be an option as well.
Please let us know how you're doing. We care about you and will be here if you need to talk. ((((HUGS))) to you and may God bless you in this journey.
I can see that you have put a lot of thought and consideration into your decision and you've had excellent support from your medical team. You've done research as well. Sometimes we have to do difficult things in this life, and this decision hopefully will get you on the path to reclaiming your life.
I agree with Pumpkln's suggestion to find a support group to join. Much as people get help and strength from BoneSmart by talking with others going through similar circumstances, I believe you'd benefit from talking with others who have had a limb amputated and have gone on to make a life for themselves.
If you haven't done so, see if you can connect with a hospital social worker or one through your county to help you take advantage of all the resources that may be there for you. Since you are on food stamps, whatever office you dealt with may be a good place to start. Have you considered applying for Social Security Disability? That may be an option as well.
Please let us know how you're doing. We care about you and will be here if you need to talk. ((((HUGS))) to you and may God bless you in this journey.
Let me explain something you probably haven't read in all those sites you looked at.
In a situation like this, the nerve that is most affected by this condition is the femoral nerve. The inflammation travels from the area of the hip joint and all the way down to the knee and probably below it. When you have a mid-thigh amputation, it doesn't just remove the painful joint. It leaves behind the angered femoral nerve and the other three nerves that accompany it (red dots). So not only are you only doing a part of the job, you are going to try and wear a prosthetic on it to boot!
There ARE alternatives to this. I beg you to reconsider.
Thank you for sharing your situation so fully. I'm sorry you're in such a bind and I understand how hard this must be. 
Please explore some of the suggestions for help that Pumpkln and Jamie have made.
Please explore some of the suggestions for help that Pumpkln and Jamie have made.
I agree that you should definitely contact Social Security Disability. You have an excellent case for it. It takes months to go through the process, but it will be retroactive if approved. Please try. You might be able to then see Dr. Maale. It would be so worth it, I'm sure.
OP
OP
jvanp75
new member
Thank you all for your support and suggestions. After many discussions with my surgeon and ID Dr. I decided that the best course of action for me was to have the surgery to amputate my leg just above the knee. To help you understand why I made this decision I'll fill you in a little bit more. With the exception of about 3 weeks total in the last 19 months the only way I was able to function was by being on pain meds. Specifically I had to take between 6 and 8 Percocet and 4 or 5 Tramadol each day just to dull the excruciating pain. Because of this I had no life at all. On the few rare occasions I went out, I would not be able to stay more than an hour before the pain and stiffness would become unbearable. There is no way I could go on for another year or more like this trying anything else.
I was originally scheduled to have my surgery on June 20th, however I contacted the office Memorial Day weekend leaving a message letting them know I could not wait another 4 weeks. Long story short, the scheduler looked at the paperwork wrong and thought I was just having the replacement removal and spacer insert again. Once she realized that was not the surgery I was having she talked to the PA and my PA let her know this needed to be done ASAP. So on Monday June 6th I had my surgery to amputate my left leg just above the knee. I was discharged after 3 days and sent to a rehab facility to help me regain my strength and stamina and to learn how to do the things I need to do in my new situation. Things are going well, I'm making progress everyday and will hopefully be here only another week or so, but may be 3 or 4 more weeks.
A buddy of mine works at the hospital I had my surgery at and one of the nurses he works with lost her leg just below the knee. She came and saw me after my surgery and gave me some good information and advice. We chat almost everyday, especially when I have a question. I've also found a couple of support groups on FB that I have joined and they are a tremendous source of information and support. I feel very good about my decision, and even better after reading the lab report on the severed leg. There were several cysts, and other things I have to ask about when I see my surgeon Tuesday, that reinforced that I have made the best and right decision for me.
I greatly appreciate all the support and advice/suggestions from all of you.
Jeff
I was originally scheduled to have my surgery on June 20th, however I contacted the office Memorial Day weekend leaving a message letting them know I could not wait another 4 weeks. Long story short, the scheduler looked at the paperwork wrong and thought I was just having the replacement removal and spacer insert again. Once she realized that was not the surgery I was having she talked to the PA and my PA let her know this needed to be done ASAP. So on Monday June 6th I had my surgery to amputate my left leg just above the knee. I was discharged after 3 days and sent to a rehab facility to help me regain my strength and stamina and to learn how to do the things I need to do in my new situation. Things are going well, I'm making progress everyday and will hopefully be here only another week or so, but may be 3 or 4 more weeks.
A buddy of mine works at the hospital I had my surgery at and one of the nurses he works with lost her leg just below the knee. She came and saw me after my surgery and gave me some good information and advice. We chat almost everyday, especially when I have a question. I've also found a couple of support groups on FB that I have joined and they are a tremendous source of information and support. I feel very good about my decision, and even better after reading the lab report on the severed leg. There were several cysts, and other things I have to ask about when I see my surgeon Tuesday, that reinforced that I have made the best and right decision for me.
I greatly appreciate all the support and advice/suggestions from all of you.
Jeff
Hello again, Jeff.
Thank you for updating us on what happened to you.
I'm glad that your surgery went well and even more glad that you have found some support.
Do keep us up to date on your progress.
We're here and we care.
Thank you for updating us on what happened to you.
I'm glad that your surgery went well and even more glad that you have found some support.
Do keep us up to date on your progress.
We're here and we care.
What a wonderful attitude you have! You have a lot of years to live your life and you have a really good start at the rest of your life! You will do just fine. Thank you for sharing your journey. You will have a lot of people here who care!
OP
OP
jvanp75
new member
So I'm 4 weeks post surgery today and doing great. At my follow up my surgeon wanted to keep the sutures in for an additional 2 weeks because of all of the problems I've had leading up to this. He just wasn't willing to risk anything, even though the incision is fully healed and looks awesome.
The PT/OT staff here at the rehab facility are awesome. They keep telling me how blown away they are by my progress so soon. I'm using the time in the PT/OT gym to build my arms/shoulders and remaining leg strength up. They are also putting many different scenarios in front of me so that I will be able to deal with just about anything I will come up against. After the first 4 days I got rid of the walker and went to crutches. I detest the walker and do not feel comfortable using them. I told the head PT therapist that as soon as I got home the walker was going in the closet or trash and I was grabbing my crutches. He went and pulled out crutches and said ok, show me. As I proceeded to do a few laps around the gym, including up and down the stairs, he finally said ok, ok I believe you.
Since then I have been on my crutches, along with training with my wheelchair, ever since. They keep making obstacle courses, take me outside to deal with curbs, steps, uneven surfaces etc so I have as much information as possible when I leave, which will be on Saturday finally!! I know it will probably sound strange to all of you, but this has been almost like 2nd nature and normal to me. I haven't struggled with anything as yet. I have had friends pick me up and take me out in the town and I've done great.
I get my sutures removed on Thursday and will then start with the shrinker and hopefully within 5-7 weeks I will start being fitted for my new leg. I also belong to an amputee support group on FB that I have found to be a great resource, along with a lot of laughs.
Again I thank you all for your support on this journey of mine....
Jeff
The PT/OT staff here at the rehab facility are awesome. They keep telling me how blown away they are by my progress so soon. I'm using the time in the PT/OT gym to build my arms/shoulders and remaining leg strength up. They are also putting many different scenarios in front of me so that I will be able to deal with just about anything I will come up against. After the first 4 days I got rid of the walker and went to crutches. I detest the walker and do not feel comfortable using them. I told the head PT therapist that as soon as I got home the walker was going in the closet or trash and I was grabbing my crutches. He went and pulled out crutches and said ok, show me. As I proceeded to do a few laps around the gym, including up and down the stairs, he finally said ok, ok I believe you.
Since then I have been on my crutches, along with training with my wheelchair, ever since. They keep making obstacle courses, take me outside to deal with curbs, steps, uneven surfaces etc so I have as much information as possible when I leave, which will be on Saturday finally!! I know it will probably sound strange to all of you, but this has been almost like 2nd nature and normal to me. I haven't struggled with anything as yet. I have had friends pick me up and take me out in the town and I've done great.
I get my sutures removed on Thursday and will then start with the shrinker and hopefully within 5-7 weeks I will start being fitted for my new leg. I also belong to an amputee support group on FB that I have found to be a great resource, along with a lot of laughs.
Again I thank you all for your support on this journey of mine....
Jeff
- Joined
- Nov 21, 2015
- Messages
- 1,233
- Age
- 63
- Location
- Phoenix, Arizona
- Country
- United States
- Gender
- Female
Hi Jeff! It is so good to hear that things are progressing so well for you. You even sound happier 
Your comment "I know it will probably sound strange to all of you, but this has been almost like 2nd nature and normal to me"..this doesn't sound strange to me at all. With our similar history and length of down time that involved not being able to use that leg...you are finally getting mobile. It sounds like you are getting your life back!! Best wishes for your continued successful journey...
Your comment "I know it will probably sound strange to all of you, but this has been almost like 2nd nature and normal to me"..this doesn't sound strange to me at all. With our similar history and length of down time that involved not being able to use that leg...you are finally getting mobile. It sounds like you are getting your life back!! Best wishes for your continued successful journey...
HoneyB
senior
Best wishes for a great recovery, Jeff! You deserve it. I admire the way you seem to be looking only forward, not backward.
What a fantastic attitude you have! You will be a success, I have no doubt!
Best wishes for fitting and progress with the prosthesis, Jeff.
My son walks well on his prosthesis (he also had an above-knee amputation) and he doesn't need even a cane to help him. He does find, though, that his stump gets blistered at times and then he has to spend a few days using crutches. So, it's good idea to be competent on crutches. A walker would be completely unnecessary for my son.
My son walks well on his prosthesis (he also had an above-knee amputation) and he doesn't need even a cane to help him. He does find, though, that his stump gets blistered at times and then he has to spend a few days using crutches. So, it's good idea to be competent on crutches. A walker would be completely unnecessary for my son.
