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Kender

Logic Vs. medicine

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I hope this is the right area for this as it deals with pain and nerves. If you don't know my story that's fine the cliff notes are, I am looking at elective knee disarticulation due to chronic pain in my knee that has a partial replacement (june 2009) and a revision (may 2010) that has not stopped hurting since the last surgery. The ortho Dr. says there is nothing wrong from an ortho perspective and I need pain management. The pain management Dr. says it's a chronic issue and I will need meds the rest of my life.

I wanted the ortho to refer me to another surgeon to consult about the amputation. My ortho says that no Dr. will amp a healthy leg. I argued that a knee that hurts so much that while on hydrocodone, lyrica, and cymbalta I still have to use a wheelchair at times.. is not a healthy leg. The ortho said that if I cut the leg off the pain is just going to move up from where the knee was and into the residual limb. This is where my logic said "Wait a F=ing minute". If the pain were all along the nerve going down my leg then I might agree however the pain is in one localized area. My logic says that a damaged nerve or even a nerve that is switched "on" for no reason sends the signal to my brain that it hurts. If you sever the nerve (properly) between the brain and the damage then there is no pain signal to transmit to the brain. The new undamaged end of the nerve doesn't automatically start to generate a pain signal that the damaged nerve was sending. By his logic if your foot is crushed then amputating it is just going to make the pain travel up and your BKA will now have the pain of the crushed foot. I have talked/typed to too many amps to know that the pain doesn't follow the end of the limb the way my ortho is saying.

My ortho said that there is nothing wrong with the knee and that the pain is there because it has been there for so long and that I need a nerve block to stop the pain cycle. I asked the ortho why the nerve block he used when I had my last surgery didn't work then....or the times that the pain pills have left me pain free. He didn't have an answer. The pain I have now started coming on slowly back in Dec of 2009 and would happen with increased activity, then by the time I had my revision surgery in May 2010 the pain was constant. Immediately after surgery that pain was gone and I had the post op pain as expected. As the post op pain went away I got an infection along the surgical incision which had it's own pain. As that pain went away the pain from before the surgery came back. At this point the most activity I did was mowing my lawn on a riding mower. All of you know that it is hard to describe a particular pain and even harder to explain how one dull ache with sharp stabs is different from another dull ache with sharp stabs however all of us know that we can tell that one pain is different from another. Basically The pain I had before surgery was gone for a month of so while I had the other stuff going on but then it came back....the exact same pain. This tells me that the surgery did not fix the issue, maybe at most with all the washing out they did it gave me some time while the real problem worked it's way back up to a point of pain. To me this isn't an issue of chronic pain from a nerve that is switched on but an undiagnosed issue.

The ortho pissed me off because on one hand he says he knows what is wrong and what treatment is needed but on the other he can't answer question about how pain treatments work and effect nerves. He assumes he knows that all other surgeons agree with him and he won't even consider a consult to see if there is another opinion.

I posted this in the hope that those with more experience with amputation would have more knowledge on nerves and pain. Tell me if I am wrong or not in the way I understand how the nerves work. Does the pain travel up the leg with the amp? I know that phantom pains are real and that they could be a form of this traveling pain..... but given a non-traumatic amputation with the pre-treatment available to properly take care of the nerves I don't see having a long relationship with phantom pain.

Help.

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I'm not really the best person to talk about phantom pain, as I rarely experience it. However, I can vouch for your theory about removing nerves above the "point of pain." My own amp was caused by a broken foot which went through several unsuccessful attempts to repair it surgically. By the time I decided to amputate, the foot was quite messed up and I had a raging MRSA infection...along with severe, excruciating, constant pain.

According to your doctor's reasoning, when they removed my foot and ankle, my pain should have "traveled up" to mid-calf level, at the end of my stump. That did not happen...instead, I've been almost-entirely pain-free.

However, here's an interesting thing: on those rare occasions when I DO have phantom pains, the pain I feel is interpreted by my brain as happening in my long-absent foot. When it starts, my first response is "Oh! My foot hurts!" My second response is "but I don't have a foot...it must be coming from higher." Sometimes I can deliberately isolate the source of the pain to the end of my stump...but most often, I continue to think of the pain as being in my missing foot.

There's always a chance of phantom pain developing with an amputation...some of our members deal with it on a regular basis (sometimes a near-constant basis). However, there's a theory that says going into surgery in as close to a pain-free state as possible can help prevent phantoms from developing.

I hope that some of our members who have more experience with ongoing pain following amputation weigh in here.....................

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I'm not really the best person to talk about phantom pain, as I rarely experience it. However, I can vouch for your theory about removing nerves above the "point of pain." My own amp was caused by a broken foot which went through several unsuccessful attempts to repair it surgically. By the time I decided to amputate, the foot was quite messed up and I had a raging MRSA infection...along with severe, excruciating, constant pain.

According to your doctor's reasoning, when they removed my foot and ankle, my pain should have "traveled up" to mid-calf level, at the end of my stump. That did not happen...instead, I've been almost-entirely pain-free.

However, here's an interesting thing: on those rare occasions when I DO have phantom pains, the pain I feel is interpreted by my brain as happening in my long-absent foot. When it starts, my first response is "Oh! My foot hurts!" My second response is "but I don't have a foot...it must be coming from higher." Sometimes I can deliberately isolate the source of the pain to the end of my stump...but most often, I continue to think of the pain as being in my missing foot.

There's always a chance of phantom pain developing with an amputation...some of our members deal with it on a regular basis (sometimes a near-constant basis). However, there's a theory that says going into surgery in as close to a pain-free state as possible can help prevent phantoms from developing.

I hope that some of our members who have more experience with ongoing pain following amputation weigh in here.....................

This was my exact line of thought. your story and stories like yours. Given that my situation is similar to yours, in that it's elective and can be planned for, so I should be able to expect a relatively phantom pain free limb. Right now I'm on pain meds and still in almost constant pain, I would gladly accept an occasional phantom pain...even if the pain took a percocet to get rid of at least it wouldn't be constant. I can handle occasional pain, I work with power tools so pain is not uncommon. It is the constant everyday keeps you awake several nights in a row 4 months later still no end in sight can't do anything with the family pain that I can't stand. I can imagine a pain in a foot that isn't there is like an itch you can't scratch.....on steroids, but given my situation I think my chances are good that I would have far less pain after amp than I do now.

I hate doctors that claim they know things instead of just admitting they are human and they would have to research the right answer.

Thanks Cheryl

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I had an elective above knee amp 5 years ago and have suffered terrible pain, both phantom and stump pain.

I did lots of research, had pre amp epidural and epidural during and post op, which is said to help prevent phantom pain.

Like you, I thought that it was logical that if you get rid of the problem limb then you get rid of the pain.......not true.

I still take lots of pain drugs, which do not take the pain away. It is still on a daily 24/7 basis. If I delay taking my drugs boy do I know about it, so god knows what it would be like without them! I think they take the edge off it.

You really need to talk to the pain specialists, certainly there are lots of theories about pain and it's control, but sometimes they can't get it right either pre or post amp. There is certainly a theory that the more pain you have experience pre amp ten the more likely you are to suffer long term pain following amputation. This has somethingvto tobwithbthe brain rememberingbthe pain and not a lot to do withbthe nerves. That is whybthey prescribe gabapentin and it her anti epilepsy drugs for phantom, because they work on the pain receptors in the brain.

Just giving my experience, although you seem pretty set on amputation.

Lynne

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Lynne, I'm sorry your having such a bad time with the pain. If I may ask. What issue were you having that led to the chronic pain pre-amp? I am still checking out my last few options before having an amp. It's coming down to an allergy to metal, and if so how many metals am I allergic to Vs. what metals are knee components made of. Lastly the possibility of nerve runaway, where it just keeps firing in pain even though the cause of pain is gone. Either a nerve block will stop the nerve pulses and let it reset or the cause of pain is still there. If it works, great....if not then I'm stuck with the pain and have to consider amputation. I know I am in pain now and I know I will be in pain next week/month/year if nothing is done. If it comes down to it the amp is a chance of less pain Vs. the certainty of pain if I do nothing.

Hope you find some solution to your pain.

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Kender,

I had 30 operations following a road traffic accident,including three knee replacements which failed, had knee fused, which I put up with for 7 years. Had chronic pain for many years, especially from knee replacements. I do know where you are coming from.

Lynne

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Kender,

I had 30 operations following a road traffic accident,including three knee replacements which failed, had knee fused, which I put up with for 7 years. Had chronic pain for many years, especially from knee replacements. I do know where you are coming from.

Lynne

9/6/2010

Hi Kender:

This is my first time offering my thoughts but here it goes anyway:

Run, do not stop except to grab your medical files, to another surgeon.

Get more opinions. You may not still like the answers but you need to at least have confidence in your doc and his or her abilities.

Your situation is rough. Chronic pain is so horrible and only those who have experienced it can relate. Unless an infection is a current issue per sue your options. Only you can decide what it right for you.

None of us in our right mind would elect to chop off a limb if we had other options available. But there comes a point when an amputation may give us a chance for a better quality of life. A chance is better then no chance.

I had a elective above knee amputation on Aug 13, 10. This surgery was my 7th on my right knee. My surgeon strongly suggested amputation just before the #6 surgery in Oct 2008. I begged him to let me hold onto my leg and he manged to salvage what he could.

In these two years I was so fortunate to have the time to realize even though I had my knee and a foot attached I wasn't living. I lived in dreaded fear of another infection or another patella rupture. A locked out drop hinge brace couldn't stop the inevitable. I elected an amputation on my terms - no trauma, no infection, otherwise healthy and a healing process with crutches not on snow or ice.

Just 3+ weeks out I have no end of limb, stump - or whatever it should be called - pain. I am experiencing phantom sensation that my now gone foot has fallen asleep. I am also experiencing bouts of sharp pain and have been trying to treat them with a higher dosage of neurontin per docs approval.

Time will tell what is to come for me. I friends recommendation is to look ahead to a year. from now. To envision what might be possible with a lot of hard work. A chance for a better quality of life.

Good luck. Go with what your gut tells you.

Jane

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Jane, Thanks for the input. I will be getting 2nd and 3rd opinions prior to the actual amputation. I saw another ortho as a 2nd opinion for the knee pain. My ortho referred me to this new ortho as a second set of eyes to make sure that nothing was missed. The 2nd ortho said that further joint revisions would do no good since the bone and implant are good. He said to give pain management a chance and if it didn't work then a knee fusion would be the next option. I let him know that I would not even consider the idea of possibly thinking about maybe contemplating the option of a fusion.....basically no way in hell would I do the fusion, but I will accept an amputation. He said that if that was the case then he would recommend a disarticulation since my femur has good bone stock. If I need further surgery I will look at getting transferred to the 2nd ortho as my primary. I am losing confidence in my ortho's ability to work outside of the box. It seems that if you are a square peg he will still hammer you into a round hole until you fit or snap. I have an increase in swelling, it's a slow increase but it is still there. A misfiring nerve wouldn't cause swelling like this however some other issue can cause swelling which causes pain. Hopefully the next few weeks will tell me what if anything I am allergic to....if the metal allergy is negative I am going to check for allergy to bone cement and the plastic "cartilage" of the joint.

You said it right that no one in their right mind would want to cut off a limb and had this been last year just after the first replacement then I wouldn't even be thinking about amputation. It's been the fact of a failed replacement and revision within a short time that pointed me to this option. At this point I can't imagine being pain free with just the random bad days. I could work through the pain of a bad day knowing that I could take a pain pill and ice/heat later that night then sleep it off. This everyday never ending sleep disturbing pain is wearing on me. If I knew it was a productive pain, like going to PT, then I would have higher hopes but this pain is pain just for the sake of hurting, it's not getting me anywhere. I am crossing my fingers that the next few weeks will give me some answers.

Keep me updated on how your doing. Do you know what knee and foot you might be getting?

DJ

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Jane, Thanks for the input. I will be getting 2nd and 3rd opinions prior to the actual amputation. I saw another ortho as a 2nd opinion for the knee pain. My ortho referred me to this new ortho as a second set of eyes to make sure that nothing was missed. The 2nd ortho said that further joint revisions would do no good since the bone and implant are good. He said to give pain management a chance and if it didn't work then a knee fusion would be the next option. I let him know that I would not even consider the idea of possibly thinking about maybe contemplating the option of a fusion.....basically no way in hell would I do the fusion, but I will accept an amputation. He said that if that was the case then he would recommend a disarticulation since my femur has good bone stock. If I need further surgery I will look at getting transferred to the 2nd ortho as my primary. I am losing confidence in my ortho's ability to work outside of the box. It seems that if you are a square peg he will still hammer you into a round hole until you fit or snap. I have an increase in swelling, it's a slow increase but it is still there. A misfiring nerve wouldn't cause swelling like this however some other issue can cause swelling which causes pain. Hopefully the next few weeks will tell me what if anything I am allergic to....if the metal allergy is negative I am going to check for allergy to bone cement and the plastic "cartilage" of the joint.

You said it right that no one in their right mind would want to cut off a limb and had this been last year just after the first replacement then I wouldn't even be thinking about amputation. It's been the fact of a failed replacement and revision within a short time that pointed me to this option. At this point I can't imagine being pain free with just the random bad days. I could work through the pain of a bad day knowing that I could take a pain pill and ice/heat later that night then sleep it off. This everyday never ending sleep disturbing pain is wearing on me. If I knew it was a productive pain, like going to PT, then I would have higher hopes but this pain is pain just for the sake of hurting, it's not getting me anywhere. I am crossing my fingers that the next few weeks will give me some answers.

Keep me updated on how your doing. Do you know what knee and foot you might be getting?

DJ

9/8/2010

Hi Kender:

You may have received a partial response I was typing but on my end I some how managed to delete the entry. I'm new to having a lap top computer and clearly not used to keying on my lap with my leg elevated.

It sounds like that if you go ahead with an amputation you may be able to salvage your femur intact. I'm new to this world but I get it that the more you can retain the better going forward. My surgeon was able to do this for me as he hoped

A leg attached to a complete femur will protrude beyond the remaining leg (when sitting) but this the least of my concerns. I want function. I want the chance to live again.

I'm attaching a piece written by a wonderful women named Judy who I was lucky enough to get to know earlier this summer. Her advise and experiences as an elective amputee has been priceless to me. Despite different histories that brought her to her decision to amputate, her outlook has been fantastic and, I hope can help others too.

Let me know what you think too.

JaneYouve already lost it2.doc

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Judy is one of our members (although we don't see her here much...she's spending most of her time living her life and doing her "Just One Foot" blog). You're right, Jane, she does have a fantastic attitude!

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9/18/10

Hi DJ:

How goes your research for docs and equipment? Any luck?

Jane

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9/18/10

Hi DJ:

How goes your research for docs and equipment? Any luck?

Jane

Hey Jane,

I have found the docs that I would need to see but my current ortho is an idiot so for now I am stuck but that will be resolved soon. I tried to get up and do some basic house work a couple weeks ago and after a few hours of being on my feet the swelling in my knee doubled and the pain increased. Now each step I take sends a stab of pain into my knee so I am using my wheelchair to get around about 95% of the time. I have not seen my ortho since this latest symptom popped up but I doubt he will care. He hasn't tried to figure out what is wrong with my knee since June, he just says to go to pain management. The last appt I had with the ortho I asked for a referral to a surgeon so I could ask about amputation and the ortho refused to allow me to go down that path. He told me things about amputation that showed me he is either a liar or has no clue about amputation. My infectious disease Dr. wants another fluid draw from my knee to test for infection since the last one was months ago and those numbers were high. I have already made an appt with another ortho that I have seen for a second opinion and this ortho was open to amputation but wanted me to give pain management a chance (about 6 months). Since seeing PM that Dr believes the pain will be a chronic life long condition and it is not something that can be cured. I am hoping the test results will indicate that I have an infection because I will than have a diagnosis and can begin a plan for recovery. If it is infected I will see if my current ortho will then send me to another surgeon for amputation. If he won't then I am seeing the 2nd ortho about a week after that appt (the appts are already set up) and I am confident the 2nd ortho will see things my way. If there is no infection and the 1st ortho still refuses the amputation and refuses to try and figure out what is wrong with my knee then I will see the 2nd ortho and see if he will decrease the 6 month time frame for pain management. Since the PM Dr. says it's chronic I am hoping the 2nd ortho will consider that along with my condition getting worse and approve of the amp. I saw an allergist and I am not allergic to the metal in my knee.

I have been to a couple amputee support group meetings in my area and I was able to talk face to face with some more amps. A lot of them had occasional phantom pain that would last for a minute or so but other than that they were pain free. One of the women I talked to even said that she would rather deal with the phantom pains and issues that go along with being an amp than to deal with constant pain every day. It was great seeing all the amputees having fun and going on with life as if they had not lost anything. In fact several of them felt bad for me being stuck with pain, no clear diagnosis, and an ortho that doesn't care. I know for sure that I will recover from amp surgery and will be able to use a prosthetic leg to do everything that I want to do. Now I just need to see an ortho with brains and I can get my life back.

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