So far I have only been on the drug for a week. I have not had any nausea with the drug, which is great. I do have fatigue and headaches from it. I am not sure if it is working yet. I and my doctors are hopeful that it will.

I understand that you are trying to inform those people who have yet had an amputation and are lucky enough to make the disission of the type of procedure to have.
Since you have already decided on the ERTLE Procedure and found Jan Ertle to do it. I am wondering if you have ever contracted the people on this site who have had the procedure done and were not happy with it. I remember from one of your very early posts about this procedure there were some that were very unhappy with the outcome.
Living in America allows you to make decisions regarding your life and the consequences can be good or bad. Since I have recently read on this site that those of us who did not have the ERTLE Procedure must live in pain and sit on our butts. Not always the case.
I obviously do not know this for a fact, but I am thinking that Jan Ertle will not travel to you to do the procedure.
I understand that by vigirously supporting this amputation procedure you are informing people and making a statement which you really beleive in.

I have talked to 20+ Ertl amputees (Bioniclbka and Caligirl here both are) and there's not a single one that is unhappy with the outcome. Almost ALL of them say " I wish I had done it sooner" (people with revisions) or " I don't understand why this isn't the standard procedure for amputations".

The person that had ill things to say ( see ERTL PROCDURE discussion ) about the Ertl did NOT have one. Everything she had said was gossip she had gotten from who knows where. I actually took her words at face value at the time though. I was looking for the best possible thing for ME and I wanted to know if the things she had said were true. After doing A LOT of research and talking to many many people, I can say for sure that she was very very WRONG.

YES I am very lucky to live in the USA where we have many more choices and options (good and bad)to choose from. BUT -- ANYONE, ANYWHERE can decide to get an Ertl(Heather Mills flew to California to have her's done). This is exactly what I mean when I say Drive and Determination will get you what you want. If you say you CAN'T then you are right you CAN'T because you've already made up your mind that you can't.

The only thing I'm doing here is passing along the information (plus my research) that was handed to me when I first started looking into my amputation. If people are never told of their options then they truely have NO OPTIONS. Everyone will have to make their own decisions but with better information hopefully they can have a better life too.

I'm going to bump this up for the couple new people pondering amputation.

Now that I have gone though this procedure and am walking in my first prosthesis only 10 weeks post op, I have had ZERO phantom pain and ZERO post op pain and can confirm that this procedure WORKS and anyone with questions about it feel free to ask me.

It of course is a personal descision but the idea that all of us non ertls have the issues the proponents of the ertl procedure claim is crazy, in my professional opinion. I have seen ertls take longer to recover also.
I was going to take a trip to have Jan Ertl do the revision, I would only have to pay for travel and my In-laws live close by. But I am not having issues and I was on my feet within that 10 week time frame and an ertle is no assurance of no phantom pain, there are so many factors that contribute. Im a non ertl and 19 weeks out and running again. Of course everyone is unique but we have an ertl that had it done last year and still having problems getting good fit. For ME, I weighed the evidence and it wasnt for me, but am fortunate enough to have that as an option if that ever changes. Thanks for making the info available to others.

The Ertls don't make any claims that you "won't have" phantom pain and it's a stated fact that Ertls do generally take longer to heal because you have bone to grow.

The fact is standard amputation was designed to remove bad or dead tissue and limb with no thought or planning towards the use of a prosthesis. The Ertl was! and once your bone bridge is healed solid then you have a much easier time fitting into a prosthesis and with much LESS (didn't say none) problems in the years to follow.

With the thousands of Ertls that have been done over the years not a single one has EVER been revised back to a standard (or guillotine) type amputation.

But once again -- read the information for YOURSELF and make your own decisions, Than ask as many questions as you can till you come to a decision that is BEST FOR YOU.

The biggest thing I've learned though my Injury is that the DOCTOR is NOT always right. And the more proactive you are in your own health care -- the BETTER care you get.

Let's also keep in mind that Jan Ertl is not the only doctor who performs the Ertl procedure. I had mine done by Chris Ertl in Conn. There are also many others throughout the country-some don't even have the last name "Ertl" :)

As a standard guillotine amputee, I guess I made a decision that was based on research, time frame and the fact that my health was deteriorating fast. I walked with my first prosthetic, be it a flo-tech stiff knee system ( for contractures ), 5 weeks from surgery and put my cane down 7 weeks from surgery and haven't looked back.

I have just gotten my fulltime leg 5 months post op ( go to jyohe23 albums on photobucket to see all of the prosthetics ) and yes I have had an issue with the fact that the socket was VERY tight and felt binding. A visit to the prosthetist and I now wear my new leg 12 hours a day, and am starting to have issues with the old one because my residual limb is conforming to the new socket. I have no pain, and phantom pain is minimal, more like phantom sensations of tingling or itching.

Since I have come to the site I have watched this discussion seem to always end in debate or someone getting angry. Tiger is putting the info out there for knowledge. I would NEVER ever have gone into my surgery blind and my doctor just asked me to talk to a young lady having issues coming to grips and thinking that life ends with an amputation. I chose my type of surgery because my doctor never lied to me, and when I met with him and my prosthetist, everything they said would happen did, till this very day. I say there is never enough research....and I asked a list of over 45 questions before I was satisfied and he answered every one of them. Choose carefully, but choose what is best for you and what you are comfortable with. Especially your surgeon.

bumping this up for those who are considering amputation -- this is a MUST READ. The Ertl procedure is another option that your doctor won't tell you about.

I have done a great deal of research prior to my procedure, and I opted for the Ertl procedure after some serious discussions with a fellow triathlete. I will keep you posted how it goes after procedure on the 22nd. I expect the recovery to take a little longer, but it should get me back competing at a higher level in the long run.

Bumping this one up for all the new people

I do know some BK's who have had great success with the Ertl procedure, but I must say that I don't recommend their AK version. I speak not only from my own experience, but four other AK's that have had the procedure (performed by Dr. Ertl) with poor results. In all cases, the muscle which is wrapped around the bone and then secured has come "undone". So I recommend YES for BK's but a huge NO for AK's! (Thus my 3-star recommendation)

Kerri, what was the reason to be put on Sprycel?
I was told I need to get on it after 7 years on Gleevec.
I am worried sick since my questions have not been answered all. Time ran out at the onc's office and I am in the process of applying for medication assistance. What are your thoughts with having to go on the Sprycel?

I am curious your doctor said that you would be on Sprycel after 7 years on Gleevec. My husband has been on Gleevec for 7 years and his doctor has not suggested going on Sprycel. I know many patients on Sprycel and they had to go on the drug after developing resistance to Gleevec. Only if Gleevec stops working, CML expert doctors like Dr. Brian Druker say to go on other drugs like Sprycel and Tasigna.

Another reason for folks to try a new drug is if they are intolerant to Gleevec. My husband does have swollen eyes and cheeks on Gleevec and his Tasigna friends say they do not have that problem on Tasigna. The reason why my husband does not want to switch is that his side-effects on Gleevec are still manageable and among all the CML drugs, Gleevec has long-term safety and efficacy results. While the new drugs no doubt will do well, experience on the new drugs is short-term and we do not know if there are any long-term side-effects from these drugs. This is the reason most doctors keep patients on Gleevec as long as the drug is working and not too many side-effects.
If you look at the US NCCN guidelines for oncologists, Gleevec is the first-line treatment in CML and Sprycel and Tasigna are recommended second-line, only if Gleevec stops working for the patient or the patient is Gleevec-intolerant.

While trials are ongoing for newly diagnosed patients on Sprycel and Tasigna, preliminary results show that remission is achieved faster on the new drugs compared to Gleevec but whether faster remissions have any bearing on long-term prognosis remains to be seen.


Best Wishes,
Anjana
wife of Royston
d/x Jan 2002
400mg Gleevec
Remission

I have been on Sprycel for about 9 months now and am doing better,I don't have all of the side effects that I was going through with gleevec.It got to where I would have charlie horses two and 3 at the same time in the same leg.And it gor to where I would lose my sight in my right eye I would grab orange juice and it would slowly come back it was bad when I'd be drivingand it would hit.I'm Thankful for the Sprycel I just hope it works for along time.

picturelady61