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Heather Mills - Amputee Forum
Mary Farquhar

Very Disappointing!

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I went back to see my Orthopaedic Dr. I finally thought this appointment was going to let me know where I am heading with my life but it ends up I am no further ahead. I told the Dr that I still have the same pain as before the exploratory surgery. He told me he doesn`t know what else that could be causing me the pain. We went over if it could be my prosthetic etc....then he told me he doesn`t want to amputate if he doesn`t have to. I was shocked....he can`t do anything more for me medically, so I think my only choice is amputating to bk. He asked my thoughts about it, and I told him. I cannot go on with the pain. I am limited in walking, I have no life. If going to a bk will give me my life back then I will do it. I told him I would only do the Ertl. Then he`s trying to tell me that it`s the same as a traditional amp. He told me about this study that was done. Anyways, he is now sending me to a rehab Dr for an assesment. I have already been seen by a rehab Dr 3 years ago, and since then he has told me I needed an amputation. My rehab Dr and prosthetist has only said the best things about this Dr and yet he can`t make the call for me to have a bka. Huh, just so disappointing! I only wish I could see Dr. Ertl....I went that route and it`s way too costly for me. My plan is to get in to see my rehab Dr and tell him all this, hopefully he will call my Ortho Dr? Also call my prosthetist to see if there is anything else that can be done. I am trying hard and seems like I am getting no where!! Tired of having no life, and being in pain!

Mary

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Hi Mary - I have followed your emails from time to time and am sorry you are still having so much pain.

I am confused (which isn't unusual today, been working too hard :blush: ).... You said you will only do the Ertl procedure, but yet you can't travel to see one of the Drs. who do the procedure due to the expense, yet you are in pain and need an amputation?

Do I wish I had known about the Ertl procedure before my surgery?...yes... I was just at my prosthetist where a new amp was there who had traveled to Indiana to have the procedure done by his son and it was amazing what he could do just 5 weeks after surgery. But, I have also met many amputees who did not have the Ertle procedure who are no longer in pain and leading a good life especially if they are single b/k amputees. My prosthetists are big on surgeons understanding what they are doing when it comes to the nerves during surgery, so they like vascular surgeons and even cosmetic surgeons being in the operating room so that the drs. understand how important it is how the leg is shaped and knowing what they are doing when the nerves are cut. My prosthetists also are big on the Ertl procedure, but not enough people can get to drs who perform them.

So, even if your doctors do agree to amputate, you will only agree to it if they do they offer the Ertl procedure and you are unhappy because they don't offer the Ertl procedure? Not many do, only a few are trained in that procedure.

Again, just trying to understand your most recent situation. Hoping you get this resolved and get out of pain..

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I feel your pain.....literally and figuratively. I am actually in pain waiting to see my ortho ( on tues.) so I can get referred to an amp surgeon. On the figurative side going to a Dr and anticipating a specific outcome, only to have the Dr shatter that hope is enough to boil the blood. I hate the feeling and I hate that Docs will say if one thing happens then they will do something but refuse to uphold their end of the bargain. So you go through the pain of doing what they wanted and then "oh, well I'd hate to go to that extreme. Why don't we try this first."

I am a big proponent of the Ertl. When it's available and/or you are able to get it then that is the choice I would make. In both of our cases the Ertl is out of reach. I have to stay within workers comp network. Since the Ertl doctors themselves are not available I came up with the next best thing. There are 2 reasons why we want the Ertl. The quality of the surgeon and the techniques used in the ertl amputation. I found a prosthetist in my area that is linked to the Ertl website and knows Jan Ertl. I really like this prosthetist so I asked him who he would recommend for my surgery in my area. Since you spend more time with your pros than the Dr. and you get to know you pros really well the pros tends to hear from the patients all the pros and cons about each doc. Let the pros know you wanted the Ertl but can't afford/travel/out of network to go to an Ertl Dr. but you would still like the same treatment to the veins, arteries, nerves, bones, and muscles. This will give you the best chance of the pros pointing you to a surgeon that would fit your wants. When you go for a consult with the surgeon you can ask if he does a bone bridge (the fusion part of the tib/fib at the end). Also ask how he treats the nerves, muscles, and blood vessels. Let him tell you his preferred way first then ask "what about doing this....?" Explain your concerns and why you want these things done. There are doctors out there that do the same procedure or just a slight variance but haven't "registered" with the Ertls. At worst the first Dr. is not what you want and you go to number two but at least your moving forward. When this works out for you you will have a Dr. that does the amp the way you want it done, it is done locally, and you don't have to wait in pain with no end in sight.

Good luck

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Flip....the Orthopaedic Dr. I am seeing has done a few Ertl`s, but then at my appointment told me there is no difference between the two amps. but I know there is a difference. He also told me the bottom of the stump wouldn`t be flat but I know it is flat. I have been talking to Ertl amputees. So, I am not even sure if I trust this Dr, but there are no other Dr`s around here that know of the Ertl. IF I go ahead with the bka here, I am going to go over all my info on Ertl procedure with him. I want it done right!! I know there are many amputees that have done the traditional amp. and they do great but I am scared to go ahead and do it just to have problems after. Very scary decision!

Kender....what you said is so true, my Dr did shatter my hopes, I felt so disappointed, and for him to send me to a rehab Dr..what for, so the rehab Dr can make the call on me having an amputation instead of the Ortho Dr. I just don`t understand. This Ortho Dr came highly recommended from my Prosthetist and rehab Dr.

You are exactly right why we want the Ertl,Dr. Ertl did call me, and was willing to do it but once the financial department got back to me, it was too expensive. Would cost over 50,000 for me. Like I mentioned to Flip, my Ortho Dr has done a few Ertl`s, when the time comes and I am going to have the surgery then I will bring all my info on the Ertl procedure and discuss it with my surgeon, see if he can do it.

Do you know how the bottom of the stump on an Ertl becomes flat instead of round?

Thanks, and good luck to you too.

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I don't know about the end of the leg being flat....at least not flat in the traditional sense. I am good with structural/building so I can take an educated stab at it. If you can imagine an aluminum crutch, now turn it upside down so the arm pit pad is on the ground. The tip end of the crutch is your knee, the long vertical supports are your tib and fib. The bone bridge that is created is the arm pit pad. I'm not trying to oversimplify but on the keyboard it is hard to draw what I see in my head so, I just want to make sure the picture gets translated through my words properly so that I can help you. anyways, back on the farm.... If you put several layers of towels over the arm pit pad ( which I am sure we have all had to do with our leg issues). Now look at the crutches with the vertical poles side by side like the number 11. With this side view look at what would be the "distal" end of the crutch, the towelsare your muscles and tissue wrapped around the "bone bridge" looking at it from the side the towels may appear flat across from tib to fib. Turn the crutch so that the vertical poles are inline, so you have one hidden behind the other. Looking at the "distal" end from this view the towels are rounded over the "bone bridge". So is the distal end really flat? By the strictest definition, NO, because the towels/muscles round over the end it is not flat. I will take a big leap and assume that your ortho is not an amputee himself? If he were then he would adjust his use of the word "flat" into the context of amps. The distal end would be flat as amps go, if the bones are measured and cut right I would imagine you could draw a straight line from your tib to fib and the bone bridge will be nice and level.

You may want to see if this terminology and context of "flat" is a communication error. If this Dr is recommended and you do want to use him then you may have to play his game for this last step. It sucks but go ahead and go to the rehab Dr......with a plan. Call the rehab place and let them know that all you want is a consult for a few minutes, not a full rehab session, and that you would really appreciate their help in getting an appointment immediately. You might even be able to talk to the rehabs assistant and explain your issue, then ask if it possible for them to just refer you back without requiring an appt. If you need an appt. tell the rehab Dr the short story and that all you want is for him to refer you back to the ortho. Then go back to the ortho and put your foot down, don't be rude or anything, let him know that you respect his input however you have to live with this he doesn't.

Finally an argument that I love to use when someone says that one way is the same or just as good as the other way.....In your case the ortho saying a regular amp is the same/just as good as the Ertl amp. Your answer to him is this "Ok, If they are the same then it really doesn't matter which way it is done but since it is my leg I would feel more confident if we do it my way". It sucks that you can't straight up throw the facts in his face and prove the all mighty holy Dr. wrong. Wording the answer this way gives in to his ego and acknowledges that you accept his explanation that they are the same.....then it reminds him that you are the patient and have to suffer with the choices. He also can't back out of it since he has already said that they are the same. Chances are he may be to lazy to charge all the L-codes for the bone reconstruction, myoplasty, extra anesthesia for the nerves, etc. He or rather his office staff may only be charging L-codes for a standard amp and now he doesn't want to do the Ertl work for chop and stich pricing. Maybe bring in a printout from the Ertl website about the procedure so you can point out some things to ask him questions about.....this part is a bit of a ruse so that you have a reason for bringing in a printout of info about the L-codes also. You can bring up that you found this info as well and wanted to makes sure that with the extra work he is doing he is billing all and not shorting himself. This does 2 things. If he wasn't aware of the extra billing codes (since office staff normally takes care of this) then you just did him a favor. Secondly, If the Dr is trying to get away with doing as little work as possible it lets him know that you are now aware that he is making a lot of cash for less than a days worth of work. He will either be grateful that you helped him or more willing to do his job now that you know he is making $10,000-$40,000 for less than 8 hours work.

Good luck

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I agree, the Ertl I just saw is not really flat in the traditional sense, but is structured in such a way that can hold body weight after only 5 weeks after the amputation and make it easier for prosthetics to be fitted. Pretty darn impressive... I would be careful of a doctor who said that the Ertl procedure and regular amputations were the same? Maybe he was referring to something else?

So glad you both are able to do your homework before the surgery, which is a very good and smart thing. It's not always possible, but when it is...it gives you some control over what is going on. Hang in there..

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I agree, the Ertl I just saw is not really flat in the traditional sense, but is structured in such a way that can hold body weight after only 5 weeks after the amputation and make it easier for prosthetics to be fitted. Pretty darn impressive... I would be careful of a doctor who said that the Ertl procedure and regular amputations were the same? Maybe he was referring to something else?

So glad you both are able to do your homework before the surgery, which is a very good and smart thing. It's not always possible, but when it is...it gives you some control over what is going on. Hang in there..

While I wish there were no need for amputations (in any ones case), I am glad that our circumstances has allowed for the research and education that will make for a faster/easier recovery. I'm on the couch all day, either sleeping or on the laptop, so I have researched almost all I can at this point.

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Thanks Kender for the visual description. I have talked to someone who is biliateral and had the Ertl done, she told me it is flat. I also saw a picture of a woman on the Ertl site and it was flat. Guess I`ll do more research?

I do plan to go to the rehab Dr. and I am also calling my rehab Dr today.I will play along but only for a little while. IF and WHEN I go back to see this ortho Dr I will be bringing the info from the Ertl site to my appointment. I was told that you can buy the cd of the Ertl surgery, looking into that too.

I live in Canada so I don`t have to worry about billing etc...we have medicare here. The Ortho Dr did say he would do the Ertl, that`s why it is important for me to really understand the Ertl procedure, and bring in all info on it, so I can ask questions and see if he does it the same way.

What about you, will you be having surgery any time soon?

Thanks a lot for all the info!!!

Hi Flip.....My Ortho said it is the same. He told me about some study that was done. Anyways, I am sticking to what I want. I kinda feel lost because I have only 1 Dr that knows about the Ertl around where I live but may not do it properly. Where does that leave me? I just need to get all the info on the Ertl and show it to my Ortho and see if he can do the same. This is getting to be stressful!!

I will continue to get informed about the Ertl, so I will be prepared!

Thanks!

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I don't have a date or even an approval for my surgery yet. It's a workers compensation claim so it's not just up to me to call the next specialist and go see them, each one needs to be approved. At my last appt the ortho said that the knee replacement is just fine mechanically. It is not out of place, my knee doesn't buckle, it flexes, and extends. There is no infection so he said that from his end everything is fine and there is nothing that can be done for the increasing pain except to go to pain management. The pain management Dr. said that the pain is chronic and nothing that he can "cure", so I'll be on pain meds the rest of my life. The meds just barely take the pain away, so if I do more than sit on the couch the pain increases beyond the meds. I can't return to work while on some of these meds. I am a hands on guy and do all the projects around the house that other people hire out for. I always have 3 or more projects waiting to be started and a few that are currently being worked on. I am not built to be a couch jockey. I have 2 daughters (4 and 2) that I have been minimally involved with when it comes to activities, trip to the beach, going to amusement parks, etc. I have an appointment with the ortho tomorrow morning for a regular checkup so he can determine if I can return to work or not. I know I won't be going back to work but I am going to have the Dr. refer me to the Dr. that I want to use for the amputation and another referral to the prosthetist. Then I can bug workers comp to push through the approval so hopefully I can see the surgeon by the middle of sept. I know I still have a little while to deal with the pain before the surgery but if I can make progress then at least I feel I am getting somewhere. Until now I have just been going from day to day with no idea when I can start to recover.

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I understand where your coming from. For myself I am also very limited in walking so can`t do much activities. Plus I have neck and back, hip problems. Gotta get to an osteopath. It`s ahrd when your not working and on medical assistance, not much money. I am very grateful to get something. But not enough for extra things.

My b`friend has 2 children 5 and 2 and a half. Lots of moving with that age. I am sure you know with your two children.

Your amputation will be bk or ak, and the Dr you`re going with does he do the Ertl procedure?

Mary

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I understand where your coming from. For myself I am also very limited in walking so can`t do much activities. Plus I have neck and back, hip problems. Gotta get to an osteopath. It`s ahrd when your not working and on medical assistance, not much money. I am very grateful to get something. But not enough for extra things.

My b`friend has 2 children 5 and 2 and a half. Lots of moving with that age. I am sure you know with your two children.

Your amputation will be bk or ak, and the Dr you`re going with does he do the Ertl procedure?

Mary

My amp will actually be a knee disarticulation which is one reason why I am not demanding an Ertl. With the KD the end of the femur can handle weight really well and gives me the longest limb possible to control the prosthesis. The Dr. I am going to is not an Ertl Dr. When I see him I will ask if he knows about the Ertl and how he normally does an amp. Then if he does it different than I want I will voice my concerns and see what we can work out. My concerns will be individual stitching of arteries to veins, reattachment of muscle/ligaments to it's complimentary muscle, and treatment of the nerves. My prosthetist (also a KD amp) recommended this surgeon and said that he is pretty much the only surgeon he would still be comfortable with in my area. The prosthetist said that there are other surgeons that he used to recommend but now when you go to them you don't get the Dr. you actually get the physicians assistant. He has seen several of those patients after surgery and the patients have problems from rookie mistakes. He has even sat in during a surgery and was invited to give tips that would help the patient and him with the prosthetic fitting later on. The rookie kept making mistakes and the prosthetist was pointing out the issues that would pop up later from the mistakes.....after a couple of time they told the prosthetist to stand back and be quiet or leave, they wouldn't listen to him anymore and didn't correct the last thing he brought up. That patient had to have a revision.

10 hours till I see the ortho. Hope it goes well.

D.J.

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Hi kender,

The rehab called, I am seeing the Dr. there next week. I was also told by a woman who had the Ertl procedure done to both legs that you can order the cd off that site. So, I might just do that and then I can give it to my Ortho Dr. to look at. I think it shows 4 surgeries. Then I will know if my Dr. can do it. Hopefully he would take the time to look at it?

I wish you all the best at your appointment, let me know what happens?!

Mary

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Hi Mary,

The fact that your doctor had done Ertl's and thinks that they are the same as any other amputation is quite scary to me.... I have had a few friends who have also had the Ertl proceedure and they know that it isn't the same.

I hope that you find some resolution to your problems.. I really feel for you right now.. it's the proverbial rock and a hard spot..

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Like Mary.. I have to been told there is no difference in a regular amp or Ertl amp by my surgeon. My doctor said he was willing to have the surgery and be more in happy in researching the procedure. It made me a bit uneasy. I trust my doctors judgement but this is my leg were are talking about. I am considering having an elective amp as well. I am only with my current job because of my health coverage. I worry that if I switch jobs I will be denied the procedure because it is an accident injury that would be pre existing.

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Higgy....I have chatted to other people who have had the Ertl, and I have read up on it and I know it`s not the same. I want to buy the cd of the Ertl surgery to give to my Dr. hopefully he would look at it, and be able to do exactly what is suppose to be done.

Firstborn....I know it`s my leg, so that`s why I am not jumping into anything yet, and why I want to buy the cd on the Ertl site to give to my Dr. to look at. Hopefully he is willing. I think I need to go back to work just so I can maybe get a loan in going to the US for surgery?!! LOL....

Mary

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I'm with Higgy, Mary...a doctor who says that an ERTL and a conventional trans-tibial amp are "the same thing" strikes me as not-really-informed.

Now, I am a traditional trans-tibial amp. When I was given the choice of "try to fix my foot again" or "opt for a below-knee amputation," I was in the hospital (yet again) for my broken foot. I was in excruciating pain, fighting off yet another serious infection, didn't have internet access, and really didn't know much at all about amputation. In other words, no-one told me about the ERTL procedure, so it didn't figure in my decision.

Had I known about the procedure, I probably would have asked for it. But I went ahead with the "traditional" amputation procedure, and so far I've been very pleased with it. And, had I asked about the ERTL, I probably would have been told that it wasn't appropriate for my situation. It's my understanding that the ERTL is not recommended for diabetics...especially diabetics who have had a history of something called Charcot Foot, a condition where your bone grows very rapidly and is very porous and "crumbly." After the final attempt to repair my foot, I had developed Charcot Foot...the upshot was that there would be a possibility of Charcosis occurring on the bone bridge of an ERTL amputation...and a "crumbly" and porous bone bridge would have been, at best, useless, and, at the worst, dangerous.

I think you should continue to look into the possibility of having an ERTL, but maybe you should also ask if there is some reason why it might not be a recommended procedure in your case. I don't know that there IS a reason...I just know that some doctors don't always let the patient in on their reasoning for why they would recommend one type of procedure over another, even if their reasoning is sound. And as a patient, you have a right to know "what your doc is thinking."

Good luck in your search for a solution!

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Cheryl.....I know my Dr. is not well informed on the Ertl. I don`t understand why as he told me he was in the US in the past, I`m sure he said learning about the Ertl etc...I see the rehab Dr. next week, so IF and WHEN I go back to my ortho Dr. I will have to be very prepared and have all my info on the Ertl. There is no reason he cannot do the Ertl on me. He just doesn`t want to make the call, this is how I see it. I as well know that there is a dofference between the 2 amputations.

I am hoping he will look at the cd of the Ertl?

Thanks Cheryl!

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Mary - as I said a few posts back...I agree with CherylM and Higgy...any surgeon who says that an Ertl and a traditional amputation is the same needs to be called on the carpet about it. It's like saying angioplasty and open heart surgery is the same...they aren't :) I also would be very careful about a doctor who looks at a cd in order to learn how to do a surgery. No way....I would only have the procedure done by someone trained by Dr. Ertl, who has done MANY Ertl procedures and there are very few of them.

My prosthetist goes along to many of the surgeries along with a vascular surgeon and a plastic surgeon and his group is trying to educate surgeons in how they do amputations and the lasting effects it can have on us when done wrong. Am so sorry. Have you checked with Dr. Ertl or his son in Indiana if there are any trained physicians in Canada that have actually been trained by them? You probably have, I'm just trying to reach for answers for you...

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Thanks Flip!! I have talked to Dr. Ertl, and there is no one in Canada that does this. Very frustrating! Its my leg were talking about, how far does one have to go to, to get what they want?!!!!

Mary

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Thanks Flip!! I have talked to Dr. Ertl, and there is no one in Canada that does this. Very frustrating! Its my leg were talking about, how far does one have to go to, to get what they want?!!!!

Mary

Hi Mary,

I would suggest that you check on whether your Dr has been trained to do the Ertl procedure. It sure sounds like he has not been trained. Best of luck with your leg.

Freddy

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Thanks Flip!! I have talked to Dr. Ertl, and there is no one in Canada that does this. Very frustrating! Its my leg were talking about, how far does one have to go to, to get what they want?!!!!

Mary

Mary, if you want it done that way, you will have to go where it is performed....I agree with Flip, I wouldn't want a surgeon operating that has just looked at a CD. You have to go as far as one does to get what you want.

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My next appointment with my Orthopaedic Dr I will ask him where he was trained to do the Ertl procedure. HE did say he was in the US...for training I am not sure. I will get all the info I need to know. You are right....if I want the Ertl then I will have to do whatever it takes to get it. Might be difficult as it is expensive.

I am hoping that I will have more answers come this Thursday when I see the rehab Dr. for the assessment.

Thanks!

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