Re: PLEASE can anyone HELP ME !!

[ Follow Ups ] [ Post Followup ] [ My Message Board ] [ FAQ ]

Posted by kim on February 20, 19101 at 21:18:43:

In Reply to: PLEASE can anyone HELP ME !! posted by Caz on February 16, 19101 at 16:37:30:

: Hi everyone, I'm knew to this board...please can anyone help me..I am searching for a specialist who might be able to sort out my problems that I have with my AKA, I have been an amputee since 1993 to which I had a below knee amputation, for 3 years I still suffered pain which was not phantom pain..I was unable to wear a limb due to the amount of pain and swelling that I was having. In those 3 years my GP had refered me to be seen by other Orthopedic Specialist in the UK which turned out very unsucessful. All they kept telling me that it was only phantom pain, which I knew it wasn't but they just wouldn't listen to what I was saying to them. I was sent to numerous of pain clinics to see if they could help me in anyway. I was put through lots of test ie Accupuncture, Electric treatment, Tenns machine, Tablets to try and fool the Brain the list is anourmous. I even was sent to the top pain clinic in the UK which is in Liverpool, there I saw the proffessor who founded the pain clincs. After our consultation he then did some certain tests on me which the result proved to him that what he wanted to do showed that it wouldn't of work anyway. He then told me that it wasn't anything to do with the nerves and that there was something very wrong and resent me back to the Orthopedic Specialists. In Dec 95 I was taken in to our General Hospital with a very swollen below knee stump which was black in colour and very painful...it turned out after having an emergency scan I was told that the stump was just so full of blood that what they thought it could of been (blood clot)that they was unable to tell what was wrong. After seeing many Doctors while in hospital they came to the conclusion that the stump had heamoredge badly but why, they just did not know, and that was the end of that. In Jan 1996 I then saw a new Orthopedic Specialist who had only been at our hospital for 6 months and explaining to him about everything that was wrong and the amount of pain I was in and about all the different Dr I had been to see and what there thoughts were, he then sent me for a deep xray. On my return and back in his consulting room he then told me that 'this was not phantom pain but real pain and he needed to revise it to an above knee because the disease (osteoarthiritus) was still there in my knee joints and that it was so bad he had no option but to take it off.

: A few months later I had the second amputation done, now I thought at last I could try and get on with getting well and hopefully getting a limb so I could stand on 2 legs even if it was only for a short while at first...but sadly I was wrong, while in hospital I became very ill, I was in tremendous pain in my muscles in the stump everytime I tired to move did the stump go into horrendous spasms I knew what medication I needed to have but the understudy Dr just wouldn't give me any at all not even pain injections to help with it, until one night the nurses was trying to redress the stump as the bandages had come off when the stump just seemed to go berserk all I could do was scream and cry because it was so bad..the sister of the ward came running in to see what had happened..after seeing what mess I was in she then said enough was enough and she was going to give me high pain injections to help me which I was so very thankful for...it took 6 nurses that night to help to get the stump redressed, I will never forget that moment in all my life. 5 months after being out of hospital I started with pain again and I noticed that I had a sore on the side of my stump, I showed my physio it and she thought that it was maybe just superficial and that it would go away in time, I was just learning to try and walk with my Limb but I knew that it couldn't of been the limb that had caused the sore as I wasn't in any discomfort in anyway, a week after that I was on my way to bed when there I took of my limb which I was in great relief of doing that because the pain in my stump had got alot worse...on taking of the stump soaks I noticed that the soak was wet when I looked down I saw blood pouring out and there was an hole in the corner of my stump. At once I was taken to our A&E department to be seen by a Orthopedic Dr he thought that there might of been an infection so I was advised to come back the next day to be seen by the specialist who had done my amputation. For 5 days I had to visit the clinic at the hospital to have it looked at when on the 6th day I was seen by a Dr who was standing in for the Dr I had been seeing...he was not happy in what he saw and at once he tested it to see how deep the hole had got to his amazement it was very deep, the next day i was re-admitted to the ward where I was taken back to theatre so they could have a better look to see what it was....the result was that I had a very big absess and a bad infection which they dealt with straight away. Unfortunately that wasn't the end of it..I kept on getting bad infections in my stump I only seemed to be out of the hospital for a few days when back the infection came and back into hospital I went this lasted for 2 yrs. I had 5 months where I was really great no more infections and was trying to get on with my limb, when back started the pain again and I have been suffering ever since, I am unable to wear my limb at all now as it is to unberable I know that there is something very badly wrong and I know that it is very deep everytime I am taking in to hospital with my stump I keep saying if only I could open it up I would be able to show you where it is, but they just don't want to know anymore....all they keep saying is that it is phantom pain. I have even been on to the private sector and paid to see someone, and the person who I saw actually admitted to me that he had NO idea what it could be, so he decided to send me for an MRI Scan his words where' They won't find anything it will be totally normal but at least we can tick that of the list before we move on to trying something else'. After having that Scan I went back to see him and he told me that the top Radiologist had put in his report that he had found Osteomylitus in the bone and muscles..at last what a relief someone had found what was wrong I was also told that the rest of the femur was not good as well, that is when the Dr knew what had be done and that was to amputate to the hip..All the Dr could say to me in his office was 'I just don't know what to do'. Ever since then I started to wonder why he started to go all jittery on me and that made me nervous of him, he then decided to send me for 2 more scans of my stump, I was told that he would see me again in sept as he was going back to his country for a months holiday. I was beside myself as 6 weeks was along time to be not knowing when he was going to do this operation that would get rid of the problem once and for all. I found out that this specialist wasn't going away until the second week in August so I booked in to see him so i could get to know what was going to happen, I think by doing this made him unhappy but at the end of the day I was paying for his time....I had prepared myself to accept that I had no alternative but to have this operation done, until I was called into his office and he turned round to me and said 'there was nothing there' I am sending you back to your gp..I was gobsmacked, I couldn't believe what I was hearing...he just couldn't get me out of his office quick enough, I said to him how can a top radiologist say in his report it was one thing and now you are saying it is nothing...he wouldn't answer me...and off I went home very upset. I am still in great pain and it is making me very ill now, I am having to use my wheel chair 24-7 as my other leg is going the same way as my right leg did....I am know on Morphine to try and help as the other painkillers was not helping at all. The top and bottom of it all is I feel as though the NHS in the UK has deserted me and because I am on Warfarin which I forgot to mention I am treat as though I have the plague and they just don't want to know. Is there anyone out there who could help me. Does anyone know if there is a Specialist who only deals with Bone & Muscle pain with amputation in the USA! I am desperate to get help I want to be well again.

: I am so sorry that this is such a long letter I do hope that I haven't bored you to much, if I have, then I do appologise....Many thanx for your time.

: Caz in England

Follow Ups:

Post a Followup

Name:
E-Mail:

Subject:

Comments:
: : Hi everyone, I'm knew to this board...please can anyone help me..I am searching for a specialist who might be able to sort out my problems that I have with my AKA, I have been an amputee since 1993 to which I had a below knee amputation, for 3 years I still suffered pain which was not phantom pain..I was unable to wear a limb due to the amount of pain and swelling that I was having. In those 3 years my GP had refered me to be seen by other Orthopedic Specialist in the UK which turned out very unsucessful. All they kept telling me that it was only phantom pain, which I knew it wasn't but they just wouldn't listen to what I was saying to them. I was sent to numerous of pain clinics to see if they could help me in anyway. I was put through lots of test ie Accupuncture, Electric treatment, Tenns machine, Tablets to try and fool the Brain the list is anourmous. I even was sent to the top pain clinic in the UK which is in Liverpool, there I saw the proffessor who founded the pain clincs. After our consultation he then did some certain tests on me which the result proved to him that what he wanted to do showed that it wouldn't of work anyway. He then told me that it wasn't anything to do with the nerves and that there was something very wrong and resent me back to the Orthopedic Specialists. In Dec 95 I was taken in to our General Hospital with a very swollen below knee stump which was black in colour and very painful...it turned out after having an emergency scan I was told that the stump was just so full of blood that what they thought it could of been (blood clot)that they was unable to tell what was wrong. After seeing many Doctors while in hospital they came to the conclusion that the stump had heamoredge badly but why, they just did not know, and that was the end of that. In Jan 1996 I then saw a new Orthopedic Specialist who had only been at our hospital for 6 months and explaining to him about everything that was wrong and the amount of pain I was in and about all the different Dr I had been to see and what there thoughts were, he then sent me for a deep xray. On my return and back in his consulting room he then told me that 'this was not phantom pain but real pain and he needed to revise it to an above knee because the disease (osteoarthiritus) was still there in my knee joints and that it was so bad he had no option but to take it off. : : A few months later I had the second amputation done, now I thought at last I could try and get on with getting well and hopefully getting a limb so I could stand on 2 legs even if it was only for a short while at first...but sadly I was wrong, while in hospital I became very ill, I was in tremendous pain in my muscles in the stump everytime I tired to move did the stump go into horrendous spasms I knew what medication I needed to have but the understudy Dr just wouldn't give me any at all not even pain injections to help with it, until one night the nurses was trying to redress the stump as the bandages had come off when the stump just seemed to go berserk all I could do was scream and cry because it was so bad..the sister of the ward came running in to see what had happened..after seeing what mess I was in she then said enough was enough and she was going to give me high pain injections to help me which I was so very thankful for...it took 6 nurses that night to help to get the stump redressed, I will never forget that moment in all my life. 5 months after being out of hospital I started with pain again and I noticed that I had a sore on the side of my stump, I showed my physio it and she thought that it was maybe just superficial and that it would go away in time, I was just learning to try and walk with my Limb but I knew that it couldn't of been the limb that had caused the sore as I wasn't in any discomfort in anyway, a week after that I was on my way to bed when there I took of my limb which I was in great relief of doing that because the pain in my stump had got alot worse...on taking of the stump soaks I noticed that the soak was wet when I looked down I saw blood pouring out and there was an hole in the corner of my stump. At once I was taken to our A&E department to be seen by a Orthopedic Dr he thought that there might of been an infection so I was advised to come back the next day to be seen by the specialist who had done my amputation. For 5 days I had to visit the clinic at the hospital to have it looked at when on the 6th day I was seen by a Dr who was standing in for the Dr I had been seeing...he was not happy in what he saw and at once he tested it to see how deep the hole had got to his amazement it was very deep, the next day i was re-admitted to the ward where I was taken back to theatre so they could have a better look to see what it was....the result was that I had a very big absess and a bad infection which they dealt with straight away. Unfortunately that wasn't the end of it..I kept on getting bad infections in my stump I only seemed to be out of the hospital for a few days when back the infection came and back into hospital I went this lasted for 2 yrs. I had 5 months where I was really great no more infections and was trying to get on with my limb, when back started the pain again and I have been suffering ever since, I am unable to wear my limb at all now as it is to unberable I know that there is something very badly wrong and I know that it is very deep everytime I am taking in to hospital with my stump I keep saying if only I could open it up I would be able to show you where it is, but they just don't want to know anymore....all they keep saying is that it is phantom pain. I have even been on to the private sector and paid to see someone, and the person who I saw actually admitted to me that he had NO idea what it could be, so he decided to send me for an MRI Scan his words where' They won't find anything it will be totally normal but at least we can tick that of the list before we move on to trying something else'. After having that Scan I went back to see him and he told me that the top Radiologist had put in his report that he had found Osteomylitus in the bone and muscles..at last what a relief someone had found what was wrong I was also told that the rest of the femur was not good as well, that is when the Dr knew what had be done and that was to amputate to the hip..All the Dr could say to me in his office was 'I just don't know what to do'. Ever since then I started to wonder why he started to go all jittery on me and that made me nervous of him, he then decided to send me for 2 more scans of my stump, I was told that he would see me again in sept as he was going back to his country for a months holiday. I was beside myself as 6 weeks was along time to be not knowing when he was going to do this operation that would get rid of the problem once and for all. I found out that this specialist wasn't going away until the second week in August so I booked in to see him so i could get to know what was going to happen, I think by doing this made him unhappy but at the end of the day I was paying for his time....I had prepared myself to accept that I had no alternative but to have this operation done, until I was called into his office and he turned round to me and said 'there was nothing there' I am sending you back to your gp..I was gobsmacked, I couldn't believe what I was hearing...he just couldn't get me out of his office quick enough, I said to him how can a top radiologist say in his report it was one thing and now you are saying it is nothing...he wouldn't answer me...and off I went home very upset. I am still in great pain and it is making me very ill now, I am having to use my wheel chair 24-7 as my other leg is going the same way as my right leg did....I am know on Morphine to try and help as the other painkillers was not helping at all. The top and bottom of it all is I feel as though the NHS in the UK has deserted me and because I am on Warfarin which I forgot to mention I am treat as though I have the plague and they just don't want to know. Is there anyone out there who could help me. Does anyone know if there is a Specialist who only deals with Bone & Muscle pain with amputation in the USA! I am desperate to get help I want to be well again. : : I am so sorry that this is such a long letter I do hope that I haven't bored you to much, if I have, then I do appologise....Many thanx for your time. : : Caz in England

Optional Link URL:
Link Title:
Optional Image URL:

[ Follow Ups ] [ Post Followup ] [ My Message Board ] [ FAQ ]