Hi everyone:
I haven't posted in a while, although I have checked in some, to see how everyone is doing. Some concern, which I so appreciate, was expressed regarding my last post about my leg injury. Here's the story about my leg:
Jan 19, 2005 I fell and broke my leg. It was a tib-fib fracture which I think means both bones. Bad break, bone coming thru skin. Rush to the E.R. for a legit purpose (for a change). They "reduced" my leg, which is a benign expression for putting my bones back in place - WHILE I WAS STILL AWAKE. The orthopod said I'd need surgery, screws to hold the bones in place, eventually. A few days later I went and got my first fiberglass cast - the first of 8 as it turned out. In Feb. I had the surgery and went home. I developed pneumonia from being on my back - went in hosp. for 2 days. On my next visit to the orthopod (whom I despised, by the way) they took blood. Turns out I have an infection. Turns out I have that super-staph (MRSA) that you get from the hospital. Turns out the infection is in the bone. I re-enter the hospital to have the hardware removed from my leg and debridement (clean out) done. Where the bone had come thru the skin was bad so they hooked me up to a "wound vac" a device that encourages growth of healthy skin while sucking out the bad stuff. I had an external fixater which is a kind of metal like circular thing around the outside of my leg with spike like things which went thru the skin on the outside to the bone inside to hold the bone in place.
I ended up staying in the hospital for 5 straight months & had 8 more operations. Oh, did I mention I had no insurance? I had infectious disease Dr.'s following me, the hospital shrink (they thought I might be depressed from all the operations, the pain, being in the hospital for 5 months, duh). Pain management Dr.'s following my case. Every time the orthopodic a****** came in he'd remind me how much money I owed him. We actually had to have the psychiatric P.A. come in and mediate when Dr. A talked to me. No kidding. When I was released from the hospital I had a pic line for the I.V. antibiotics to try to kill the infection. I stayed on the antibiotics about 8 months the first time and 3 months the 2nd time. The bone never healed. Dr. A. released me telling me "don't walk too much" and I would need a bone graft. And maybe a few more operations. Apparently, he wasn't going to do those op's unless he got paid. I owed him approx $45,000. Yes, I talked to a lawyer, and yes he can do that. It may not be moral, but it's legal. I applied for medicaid and disability but it was denied. Twice. While in the hosp. I asked the social worker about emergency medicaid disability- to get me back on my feet (literally). Something short-term. As it turns out the government does have a program like that. BUT NOT FOR AMERICAN CITIZENS. Flash forward about 8 months, I was actually doing o.k. for someone walking on a broken bone. I went from a walker to crutches to just a walking boot. They pain had pretty much gone away. Then suddenly - it was back. I ended up in the E.R. & when the Dr. went to touch it I screamed. It was suddenly that bad. They thought the infection was back (it does come back in about 70% of cases). Dr. A sticks me back in the hospital. I had broken a screw in my leg. Dr. A - because I owed him so much $ wasn't going to operate again. He refers me to Dr. L (who I did like). Dr. L was with Emory. Emory has an excellent rep. for the school as well as the hospital. Emory has a program where all expenses are covered if it's an unusual case, and it's like a teaching situation. Back on IV antibiotics, surgery where a medicated rod is put into the bone and a few months later they removed the medicted rod and put in a titanium rod, more screws and finally a bone graft. Eventually I got a walking boot and was doing ok, was working part time for real estate brokers. In December tho, right after Christmas, I fell in the grocery store. The tread had worn off th bottom of the walking boot. Now 2 screws are broken and the bone graft never really took, so the leg's still broken and the program that paid for everything is over. Dr. A was talking about amputation - probably because it's cheaper. Now Dr. L is talking it, they can replace the screws, but the bone never really healed, and it hurts all the time. I feel like I'm dragging this painful appendage around with me & I don't know what to do. I 'm functioning at about 60% and there's really nothing left to do that has'nt been done already. I feel like my life's in limbo, my leg hurts all the time and I can't take the pain meds as prescribed so I run out each month and then I'm screwed because the pain mgmt Dr.'s don't play. At all. Sorry this was so long. It takes a while cuz the story's so complicted. I don't know what to do at all. Any advice, comments, anything would be so appreciated.
Lola,
I'm sorry you've had to go through so much.
Do both doctors now think that amputation is the only option? Is it because the bone is permanently infected and will not heal no matter what they do? I would get another opinion or two before considering amputation. But if it's the only thing they can do, I'm really sorry. I don't know what to say.
I suppose you wouldn't be in pain anymore, and you'd be able to get around better on a prosthesis than on your leg as it presently is, but that doesn't sound like much comfort to me. I wish I had more to offer.
Please talk to another doctor before you make a decision.
Love,
Gina
I'm sorry you've had to go through so much.
Do both doctors now think that amputation is the only option? Is it because the bone is permanently infected and will not heal no matter what they do? I would get another opinion or two before considering amputation. But if it's the only thing they can do, I'm really sorry. I don't know what to say.
I suppose you wouldn't be in pain anymore, and you'd be able to get around better on a prosthesis than on your leg as it presently is, but that doesn't sound like much comfort to me. I wish I had more to offer.
Please talk to another doctor before you make a decision.
Love,
Gina
Dear Lola ~
Thank you for sharing. I read your message yesterday morning and have had you on my mind since doing so. Unfortunately, I have not had much time to spend online over the past 24 hours, but I wanted you to know that my heart heard you and I care.
What an ordeal you have been and are going through. When faced with life's adversities, sometimes I have to remind myself over and over that this too shall pass. I understand somewhat of what you are experiencing, as I worked on a legal team in a med-mal case for a young woman due to the delayed diagnosis of breast cancer. When she finally received the surgery she needed (mastectomy then reconstruction surgery of the breast), she too contracted MRSA infections post operatively. Actually, the MRSA came back 4 times after being treated and this delayed her receiving chemo and radiation treatments she so immediately required for the cancer.
MRSA is a beast to deal with, as you are learning. I want to know if you have applied for social security disability benefits and Medicare. If not, I would suggest you do so immediately and check with the social services department at Emory if you haven't already and see if they can steer you in the right direction as to what needs to be done to complete this.
It is not uncommon for Social Security to deny the first claims for benefits that are submitted to them. However, if you are functioning at 60% less that what you were prior to this fracture and subsequent MRSA infections, I have seen good doctors and patient advocates obtain SS benefits for people in need - even if it is for a temporary time. I go with the train of thought if I have everything to gain and nothing to lose, why not try? All they can say is no and if that is the case, you may need to ellicit the help of an attorney who is well versed in Social Security disability.
Below are two links I found from the National Institue of Health that you may want to look into - if nothing more than a phone call to get another doctor's slant on your situation:
http://www.niams.nih.gov/ne/highlig...6/leg_study.htm
http://www.clevelandclinic.org/heal....asp?index=9495
If this were me, I think I would call Dr. MacKenzie and see what she has to say (first link) and the other to see if there are any clinical trials ongoing that you may qualify for.
I realize these are not in the state where you live, but who knows, there may something going on closer to home than you realize. Emory has an excellent reputation as being one of the best medical facilities in the United States, so maybe with the help of your new doctor, the social services department there, and someone at the links above you can come up with a solution that is beneficial and provide you with a little better quality of care for your life.
In addition to the breast cancer case, I have also worked on a case where a lap pad was left in the abdomen of man who had part of his colon resected due to colon cancer. This was not detected until the day the doctors at the hospital were going to discharge him, despite the fact that they knew at the time of surgery that their sponge count was off. He was running a fever of 101, complaining of abodominal pain, and his abdomen was so distended he looked like he was 9 months pregnant. Unbelievable that they were going to discharge him like this but thank you God for nudging a resident to get a CT of his abodment before releasing him. The sponge was then detected. I guess this is why they say that they are "practicing medicne"?
This man ended up spending 3 additional months as an inpatient because of three abscesses he contracted from this foreign body. He had to have more of his colon resected and a colostomy was put in, which was later reversed. He lived on IV's for 45 days and clear liquids for the remaining 45 days. During this time, he lost a total of 56 pounds and did not draw a conscious breath without experiencing excruciating pain. I know what he went through with the wound vacs and it was no picnic. I also worked on a case where a young child ended up having to have his foot amputated due to botched aftercare of a surgical procedure to correct his club foot. I was with him and his family in the pre-op holding room the day of the amputation and will never foget as long as I live the emotional upheaval this child was in when they wheeled him off to the OR.
If you find you would like to vent off list, please feel free to write to me. My email address is: dsam2u@comcast.net. I will even send you my phone number, if you would rather talk on the phone. BTW - it took a few years but I am happy to say that the woman with breast cancer is a survivor and doing well today. She has 4 young children and is now very active in their lives and has regained her health and integrity. Her situation was similar to yours in that she had no medical insurance, but we found programs where funds were made available for her treatment and living expenses. The man who had the lap pad left in his abdomen still has one open fistual that has been difficult to heal; nevertheless, each day he continues to heal and a smile is always on his face and gratitude in his heart for those of us who cared him. We actually laugh today and I told him I was going to put him under contract with Ringling Brothers as the amazing man who can "poot" out of his stomach! :)) The boy who lost his foot to amputation, now wears a prosthetic device and made the wrestling and soccer teams at school. He refuses to think that he is handicapped and likes to use the term handicapable when referring to his amputation. What an amazing young man he is and his spirit is now flourishing. He went to his first prom last year, with his first date and had a blast!
I was diagnosed with renal cell carcinoma in 2005 and underwent a radical right nephrectomy. Although I have to follow-up for 5 years after having that surgery with CT scans to make sure the cancer has not returned, I don't let it rent a lot of space in my head. The following year (2006) I had to have a ventral hernia repair where my bowel had become looped in the hernia. This was a result of the muscle weakness in my abdomen from the past surgeries I have had.
I will tell you that I contacted many physicians and did a lot of research prior to the removal of my kidney. It's ok to do that and you don't have to walk blindly through this on your own. So far there have been no signs of recurrent cancer, yet I do have a rather large cyst on my remaining kidney and an adenoma on my left adrenal gland. It is what it is and you know what? This awesome program of recovery - the 12 steps - has taught me that when I turn/align my will and life over to the CARE of the God of my understanding, no matter what, I am ok. Imagine that - we are being cared for by the most magnificient force of LOVE in the universe - if only we allow it!
Thanks so much for letting me share Lola, and feel free to write anytime you care. Although I am not online as much as I used to be, I will answer you as soon as possible. You matter, my new friend and I just wanted you to know that I walk with you.
Safely in God's care ~
Sammy
Thank you for sharing. I read your message yesterday morning and have had you on my mind since doing so. Unfortunately, I have not had much time to spend online over the past 24 hours, but I wanted you to know that my heart heard you and I care.
What an ordeal you have been and are going through. When faced with life's adversities, sometimes I have to remind myself over and over that this too shall pass. I understand somewhat of what you are experiencing, as I worked on a legal team in a med-mal case for a young woman due to the delayed diagnosis of breast cancer. When she finally received the surgery she needed (mastectomy then reconstruction surgery of the breast), she too contracted MRSA infections post operatively. Actually, the MRSA came back 4 times after being treated and this delayed her receiving chemo and radiation treatments she so immediately required for the cancer.
MRSA is a beast to deal with, as you are learning. I want to know if you have applied for social security disability benefits and Medicare. If not, I would suggest you do so immediately and check with the social services department at Emory if you haven't already and see if they can steer you in the right direction as to what needs to be done to complete this.
It is not uncommon for Social Security to deny the first claims for benefits that are submitted to them. However, if you are functioning at 60% less that what you were prior to this fracture and subsequent MRSA infections, I have seen good doctors and patient advocates obtain SS benefits for people in need - even if it is for a temporary time. I go with the train of thought if I have everything to gain and nothing to lose, why not try? All they can say is no and if that is the case, you may need to ellicit the help of an attorney who is well versed in Social Security disability.
Below are two links I found from the National Institue of Health that you may want to look into - if nothing more than a phone call to get another doctor's slant on your situation:
http://www.niams.nih.gov/ne/highlig...6/leg_study.htm
http://www.clevelandclinic.org/heal....asp?index=9495
If this were me, I think I would call Dr. MacKenzie and see what she has to say (first link) and the other to see if there are any clinical trials ongoing that you may qualify for.
I realize these are not in the state where you live, but who knows, there may something going on closer to home than you realize. Emory has an excellent reputation as being one of the best medical facilities in the United States, so maybe with the help of your new doctor, the social services department there, and someone at the links above you can come up with a solution that is beneficial and provide you with a little better quality of care for your life.
In addition to the breast cancer case, I have also worked on a case where a lap pad was left in the abdomen of man who had part of his colon resected due to colon cancer. This was not detected until the day the doctors at the hospital were going to discharge him, despite the fact that they knew at the time of surgery that their sponge count was off. He was running a fever of 101, complaining of abodominal pain, and his abdomen was so distended he looked like he was 9 months pregnant. Unbelievable that they were going to discharge him like this but thank you God for nudging a resident to get a CT of his abodment before releasing him. The sponge was then detected. I guess this is why they say that they are "practicing medicne"?
This man ended up spending 3 additional months as an inpatient because of three abscesses he contracted from this foreign body. He had to have more of his colon resected and a colostomy was put in, which was later reversed. He lived on IV's for 45 days and clear liquids for the remaining 45 days. During this time, he lost a total of 56 pounds and did not draw a conscious breath without experiencing excruciating pain. I know what he went through with the wound vacs and it was no picnic. I also worked on a case where a young child ended up having to have his foot amputated due to botched aftercare of a surgical procedure to correct his club foot. I was with him and his family in the pre-op holding room the day of the amputation and will never foget as long as I live the emotional upheaval this child was in when they wheeled him off to the OR.
If you find you would like to vent off list, please feel free to write to me. My email address is: dsam2u@comcast.net. I will even send you my phone number, if you would rather talk on the phone. BTW - it took a few years but I am happy to say that the woman with breast cancer is a survivor and doing well today. She has 4 young children and is now very active in their lives and has regained her health and integrity. Her situation was similar to yours in that she had no medical insurance, but we found programs where funds were made available for her treatment and living expenses. The man who had the lap pad left in his abdomen still has one open fistual that has been difficult to heal; nevertheless, each day he continues to heal and a smile is always on his face and gratitude in his heart for those of us who cared him. We actually laugh today and I told him I was going to put him under contract with Ringling Brothers as the amazing man who can "poot" out of his stomach! :)) The boy who lost his foot to amputation, now wears a prosthetic device and made the wrestling and soccer teams at school. He refuses to think that he is handicapped and likes to use the term handicapable when referring to his amputation. What an amazing young man he is and his spirit is now flourishing. He went to his first prom last year, with his first date and had a blast!
I was diagnosed with renal cell carcinoma in 2005 and underwent a radical right nephrectomy. Although I have to follow-up for 5 years after having that surgery with CT scans to make sure the cancer has not returned, I don't let it rent a lot of space in my head. The following year (2006) I had to have a ventral hernia repair where my bowel had become looped in the hernia. This was a result of the muscle weakness in my abdomen from the past surgeries I have had.
I will tell you that I contacted many physicians and did a lot of research prior to the removal of my kidney. It's ok to do that and you don't have to walk blindly through this on your own. So far there have been no signs of recurrent cancer, yet I do have a rather large cyst on my remaining kidney and an adenoma on my left adrenal gland. It is what it is and you know what? This awesome program of recovery - the 12 steps - has taught me that when I turn/align my will and life over to the CARE of the God of my understanding, no matter what, I am ok. Imagine that - we are being cared for by the most magnificient force of LOVE in the universe - if only we allow it!
Thanks so much for letting me share Lola, and feel free to write anytime you care. Although I am not online as much as I used to be, I will answer you as soon as possible. You matter, my new friend and I just wanted you to know that I walk with you.
Safely in God's care ~
Sammy
Lola,
I'm so sorry to hear about what you are going through. I am not sure what state you are in but there are government programs in each state which should be able to assist you in getting another opinion.
I also suffered a tib fib fracture in '97. I shattered the whole tibial plateau. I have had 6 surgeries to rebuild the leg. One thing they were worried about was infection in the bone as I too had a terrible time with the bones beginning to knit. MRSA is difficult to treat. Back in the day I found a guy online who made me a bone growth stimulator machine. I don't know if it helped but was willing to try anything before I let them take my leg. You must be careful with infection though so you do not get too sick.
What a difficult situation you are up against. I understand the pain this causes as well as the compensatory changes which occur in your back and hips, etc. I'm so sorry you have to do this. My thoughts and prayers are with you. Try to check into getting another opinion. Also, there are companies that will assist you with getting disability if you need representation. They do not ask for money up front but wait until you are accepted.
If you need some extra support for pain or just want to check out the resources for disability and all kinds of things r/t pain I found a site www.painaid.org that helped me alot. I have not been there in a long time but when I was there they had alot of different boards where you could ask professionals questions like about the disability.
Please take care of yourself and don't make any decisions quickly if you have time look into it further. I did not lose my leg. Sometimes I do wonder if I would have been better with a prosthesis because my injuries have affected my life so much.
Don't give up. If you want to ever email me as well feel free to. My email is amymhere@comcast.net.
hugs,
pm
I'm so sorry to hear about what you are going through. I am not sure what state you are in but there are government programs in each state which should be able to assist you in getting another opinion.
I also suffered a tib fib fracture in '97. I shattered the whole tibial plateau. I have had 6 surgeries to rebuild the leg. One thing they were worried about was infection in the bone as I too had a terrible time with the bones beginning to knit. MRSA is difficult to treat. Back in the day I found a guy online who made me a bone growth stimulator machine. I don't know if it helped but was willing to try anything before I let them take my leg. You must be careful with infection though so you do not get too sick.
What a difficult situation you are up against. I understand the pain this causes as well as the compensatory changes which occur in your back and hips, etc. I'm so sorry you have to do this. My thoughts and prayers are with you. Try to check into getting another opinion. Also, there are companies that will assist you with getting disability if you need representation. They do not ask for money up front but wait until you are accepted.
If you need some extra support for pain or just want to check out the resources for disability and all kinds of things r/t pain I found a site www.painaid.org that helped me alot. I have not been there in a long time but when I was there they had alot of different boards where you could ask professionals questions like about the disability.
Please take care of yourself and don't make any decisions quickly if you have time look into it further. I did not lose my leg. Sometimes I do wonder if I would have been better with a prosthesis because my injuries have affected my life so much.
Don't give up. If you want to ever email me as well feel free to. My email is amymhere@comcast.net.
hugs,
pm
See Lola ~ the miracles are already beginning! My dear, dear, friend "pm" jumped in here and shared her experience with what you are going through. You have just heard from one of the wisest, most beautiful spirits that has graced this community.
I love you to pieces "pm". It is so refreshing to my spirit to see a message from you.
Namaste' dear one ~
Sammy
I love you to pieces "pm". It is so refreshing to my spirit to see a message from you.
Namaste' dear one ~
Sammy
Lola,
Isn't this a woonderful place? You never know who can help you. Glad you're back and posting. You're in my prayers. ((((Hugs))))
Isn't this a woonderful place? You never know who can help you. Glad you're back and posting. You're in my prayers. ((((Hugs))))
My goodness Lola, what a powerhouse you are. You have endured so much pain and agony and the thought of one losing a leg! Almost inconceivable to me.
I have had a cast for 26 days and am going completely insane. What it has made me realize is that for what I have always known. How very fortunate I am because there s always someone that has it worse.
I am so happy that some very smart, caring and loving people have reached out to you. Please reach back...miracles come in all shapes and forms you will get what you need.
I pray for you and thank you so much for your story. I have reevaluated my own situation and you have put things back in perspective for me and for that I thank you.
I have had a cast for 26 days and am going completely insane. What it has made me realize is that for what I have always known. How very fortunate I am because there s always someone that has it worse.
I am so happy that some very smart, caring and loving people have reached out to you. Please reach back...miracles come in all shapes and forms you will get what you need.
I pray for you and thank you so much for your story. I have reevaluated my own situation and you have put things back in perspective for me and for that I thank you.
To everyone who replied or cared enough to read:
I'm amazed at the concern, advice, and 'hang in there's' i've received! Thank you so much, I didn't realize that everyone's comments would affect me so much. This is the first I've checked in since posting that - I think I was scared that nobody would say anything (my own insecurities raising their 'you don't matter' head).
I've applied for medicaid & disability and have been denied twice. I do have an attorney on it. The last denial letter I received Friday, April 6th. I filed for this originally approx March 2005. The denial letter said something like: "You don't get benifits for no damn broken leg, and no damn cellulitus" that is not exactly verbatim, but that was the gist of it. My broken leg has been broken for 2 years and 3 month!!!!! Oh, and that little cellulitus? The MRSA infection which got thru the skin to the bone. I've had bone grafts, they just didn't take - probably due to the infection. I didn't have the bone stimulator due to no insurance. I saw my pain management Dr.'s partner yesterday who informed me that if the bone was actually still broken I wouldn't be able to walk on it at all. "Oh, really?" I replied as I pulled a copy of the last Xray from my purse. She looked at it for quite a while, then increased my lortab dose. I'm making (trying) to make it last by giving half of it to a friend whose like a 2nd mother to me. She lives about 1 1/2 hours away so I can't just jump in the car & zip over there cuz she knows how many I'm supposed to take a day.
I did learn a lot when I was in the hospital for 5 months. One of the things I learned from the social worker was that there is no program for a trumatic injury that could probably be resovled and I'd only be on it short term. We do have that program, with a small glitch. You cannot be an American citizen by birth to qualify. Yes, that is correct. I was born in Ohio, you can't really get any more middle american than that.
My attorney says that there is an asthma clause which states if you've been hospitalized for at least 2 days, 4 times in one year - you qualify. Now we aren't trying to say I'm asmatic, we're saying that I've been hospitalized far, far, for more than that.
Plus, there was a cute little statement in the denial letter which stated I could still think. So I guess paralized from the waist down wouldn't be elegible since they could still think. Or, my ex-boyfriends cousin had ALS which is an extremely devastating disease which steals everything from you BUT your mind. Anyway, I'll still continue to fight and I want to thank everyone who took the time to respond or to read about my situation - thank you, it means so much to me (more than I ever realized) and goes far in lifting my spirits.
I'm amazed at the concern, advice, and 'hang in there's' i've received! Thank you so much, I didn't realize that everyone's comments would affect me so much. This is the first I've checked in since posting that - I think I was scared that nobody would say anything (my own insecurities raising their 'you don't matter' head).
I've applied for medicaid & disability and have been denied twice. I do have an attorney on it. The last denial letter I received Friday, April 6th. I filed for this originally approx March 2005. The denial letter said something like: "You don't get benifits for no damn broken leg, and no damn cellulitus" that is not exactly verbatim, but that was the gist of it. My broken leg has been broken for 2 years and 3 month!!!!! Oh, and that little cellulitus? The MRSA infection which got thru the skin to the bone. I've had bone grafts, they just didn't take - probably due to the infection. I didn't have the bone stimulator due to no insurance. I saw my pain management Dr.'s partner yesterday who informed me that if the bone was actually still broken I wouldn't be able to walk on it at all. "Oh, really?" I replied as I pulled a copy of the last Xray from my purse. She looked at it for quite a while, then increased my lortab dose. I'm making (trying) to make it last by giving half of it to a friend whose like a 2nd mother to me. She lives about 1 1/2 hours away so I can't just jump in the car & zip over there cuz she knows how many I'm supposed to take a day.
I did learn a lot when I was in the hospital for 5 months. One of the things I learned from the social worker was that there is no program for a trumatic injury that could probably be resovled and I'd only be on it short term. We do have that program, with a small glitch. You cannot be an American citizen by birth to qualify. Yes, that is correct. I was born in Ohio, you can't really get any more middle american than that.
My attorney says that there is an asthma clause which states if you've been hospitalized for at least 2 days, 4 times in one year - you qualify. Now we aren't trying to say I'm asmatic, we're saying that I've been hospitalized far, far, for more than that.
Plus, there was a cute little statement in the denial letter which stated I could still think. So I guess paralized from the waist down wouldn't be elegible since they could still think. Or, my ex-boyfriends cousin had ALS which is an extremely devastating disease which steals everything from you BUT your mind. Anyway, I'll still continue to fight and I want to thank everyone who took the time to respond or to read about my situation - thank you, it means so much to me (more than I ever realized) and goes far in lifting my spirits.
Lola,
Sorry you are having all these problems with SSDI. Isn't it nuts? We will give to illegal immigrants but not our own citizens who put their hard earned money into it. A patient I had used this group and got it right away: http://www.allsup.com. Not sure if I can do that but I just did. Ooops if it's not suppose to happen. Anyway, they reviewed her case to see if it would win then took it. Took some time but she got it. Think they'd get sick of going through all that paperwork! Don't give up. Most people have to apply more than once.
It sounds like you are being responsible for the pain control. That is good. You can go off the other side easy but if you remain honest and realize that if you go off the edge you won't get help for the pain maybe it will keep you on the tight rope. You cannot afford to abuse the meds because you will need them. There is a natural tolerance that builds but you can work with that.
I don't know alot of your history. Just that I read this about your leg and I'm so sorry. I do know the frustration. I wonder if you could get a bone growth stimulator device? They use electrical impulses through patches worn on the outside of your leg. I also went to a network chiropractor. I wanted to build a team of medical people and also nonmedical people. The nonmedical people helped me look at what was happening from a different perspective. The thing is everything costs money. The chiro. I went to charged 150/month for unlimited visits and I lived there because I decided they were important to my healing.
So it's been 10 years in Sept. and I have the leg. I won't say it doesn't hurt. I've had 6 surgeries and one on the other and noone really wants to discuss replacing it BUT I get around and do the best I can. The very best doctor I know for those kind of fractures is at the Indiana University Hospital. If you need his name email me. He doesn't fool around. Pulls no punches. He's blunt but he's skilled and I'd recommend him if you could somehow go to him. You have my email. Use it if you need it okay? I'm thinking of ya. I have alot of resources about this type injury if you need it in different geographical areas as i did alot of homework with my own injury. just drop me a line.
pm
sorry group this is a topic better taken off board i think but i wanted to see if she was checking in and get back to her. thanks for your indulgence.
Sorry you are having all these problems with SSDI. Isn't it nuts? We will give to illegal immigrants but not our own citizens who put their hard earned money into it. A patient I had used this group and got it right away: http://www.allsup.com. Not sure if I can do that but I just did. Ooops if it's not suppose to happen. Anyway, they reviewed her case to see if it would win then took it. Took some time but she got it. Think they'd get sick of going through all that paperwork! Don't give up. Most people have to apply more than once.
It sounds like you are being responsible for the pain control. That is good. You can go off the other side easy but if you remain honest and realize that if you go off the edge you won't get help for the pain maybe it will keep you on the tight rope. You cannot afford to abuse the meds because you will need them. There is a natural tolerance that builds but you can work with that.
I don't know alot of your history. Just that I read this about your leg and I'm so sorry. I do know the frustration. I wonder if you could get a bone growth stimulator device? They use electrical impulses through patches worn on the outside of your leg. I also went to a network chiropractor. I wanted to build a team of medical people and also nonmedical people. The nonmedical people helped me look at what was happening from a different perspective. The thing is everything costs money. The chiro. I went to charged 150/month for unlimited visits and I lived there because I decided they were important to my healing.
So it's been 10 years in Sept. and I have the leg. I won't say it doesn't hurt. I've had 6 surgeries and one on the other and noone really wants to discuss replacing it BUT I get around and do the best I can. The very best doctor I know for those kind of fractures is at the Indiana University Hospital. If you need his name email me. He doesn't fool around. Pulls no punches. He's blunt but he's skilled and I'd recommend him if you could somehow go to him. You have my email. Use it if you need it okay? I'm thinking of ya. I have alot of resources about this type injury if you need it in different geographical areas as i did alot of homework with my own injury. just drop me a line.
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sorry group this is a topic better taken off board i think but i wanted to see if she was checking in and get back to her. thanks for your indulgence.
Lola,
Im from the family board, and only lurk here sporadically. I Im sorry to hear about what you are going thru, and the only thing I can offer is my experience with SSDI. My sister is a lower leg amputee since she was 24 (took on a dump truck with a motorcycle, truck won). She later had a stroke at age 35 and was not really capable of representing herself when SSDI cut her off 2 years ago. She signed a letter allowing me to represent her. I made numerous phone calls and wrote many letters to try to get things resolved. It wasnt until I went and sat in their office for a week, I kept going up the authority ladder until I got somebody with half a brain. They reinstated her SSDI, and actually gave her a $200 month increase. Im not really familiar with your story, and dont know if you are mobile, but doing things face to face seemed to really help. My sister still has to go once a year to the doctor to see if her situation has changed (to see if the leg grew back on), but that is a small price to pay for receiving the benefits.
The only other thing I can think of is asking if any of the doctors have talked about a hyperbaric chamber for controlling the infection?
Sending thoughts and prayers your way.
Im from the family board, and only lurk here sporadically. I Im sorry to hear about what you are going thru, and the only thing I can offer is my experience with SSDI. My sister is a lower leg amputee since she was 24 (took on a dump truck with a motorcycle, truck won). She later had a stroke at age 35 and was not really capable of representing herself when SSDI cut her off 2 years ago. She signed a letter allowing me to represent her. I made numerous phone calls and wrote many letters to try to get things resolved. It wasnt until I went and sat in their office for a week, I kept going up the authority ladder until I got somebody with half a brain. They reinstated her SSDI, and actually gave her a $200 month increase. Im not really familiar with your story, and dont know if you are mobile, but doing things face to face seemed to really help. My sister still has to go once a year to the doctor to see if her situation has changed (to see if the leg grew back on), but that is a small price to pay for receiving the benefits.
The only other thing I can think of is asking if any of the doctors have talked about a hyperbaric chamber for controlling the infection?
Sending thoughts and prayers your way.
Thanks to all:
It means so much to me that so many cared to respond. I'm truly touched. I've gotten all the email addresses and links etc. I do realize that it's standard m.o. to be denied for SSI/disability, even twice. I do have an attorney on it, so we'll see. I'm fairly new to this board and I must say I'm so impressed with the love and the 'we're all in this together' feeling I get. I bet that's what people get in 12 step meetings, so maybe that's something I should check out. I just hate being in groups - no excuse, I'm just saying - anyway, I do appreciate the support here.
I will not let them amputate without another opinion and every other option is exhausted. I already have enough insecurites with both legs intact. I saw a lady in Kroger yesterday who had an artificial leg (I could tell by the stiff way she moved. I almost went up to her to say, "so, what happened to YOUR leg." Would that have been rude? I guess so, but I still wanted to talk to her.
Another thing that freaks me out is the phantom limb syndrom. While in the hospital I spoke with a lady who'd just lost her leg and she said that was the worst. She said her big toe itched right before the surgery and although her leg was gonr, HER BIG TOE STILL ITCHED!!!! That freaks me out. Weird, right?
Thanks again got the response. I'm going to try to Email you guys today.
It means so much to me that so many cared to respond. I'm truly touched. I've gotten all the email addresses and links etc. I do realize that it's standard m.o. to be denied for SSI/disability, even twice. I do have an attorney on it, so we'll see. I'm fairly new to this board and I must say I'm so impressed with the love and the 'we're all in this together' feeling I get. I bet that's what people get in 12 step meetings, so maybe that's something I should check out. I just hate being in groups - no excuse, I'm just saying - anyway, I do appreciate the support here.
I will not let them amputate without another opinion and every other option is exhausted. I already have enough insecurites with both legs intact. I saw a lady in Kroger yesterday who had an artificial leg (I could tell by the stiff way she moved. I almost went up to her to say, "so, what happened to YOUR leg." Would that have been rude? I guess so, but I still wanted to talk to her.
Another thing that freaks me out is the phantom limb syndrom. While in the hospital I spoke with a lady who'd just lost her leg and she said that was the worst. She said her big toe itched right before the surgery and although her leg was gonr, HER BIG TOE STILL ITCHED!!!! That freaks me out. Weird, right?
Thanks again got the response. I'm going to try to Email you guys today.
| QUOTE |
| I bet that's what people get in 12 step meetings, so maybe that's something I should check out. I just hate being in groups - no excuse, I'm just saying - anyway, I do appreciate the support here. |
Lola,
I'm not much of a groups person myself -- preferring individual therapy to group therapy, for example. But do try several different meetings. You don't have to speak. Just listen. I have never felt anything but entirely accepted.
There are non-chemical ways of treating phantom limb syndrome. Please do get several more opinions before you decide how to proceed. I wonder if there are online boards for people who are amputees or facing the same issues you are? Have you done a search for "phantom limb syndrome"?
Love,
Gina
