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I'm Begging For This Leg To Be Amputated

I have lived for 12 years with CRPS (also known as RSD Reflex Sympathetic Dystrophy) in my Right Leg.  I have had evaluation after evaluation by Physical Therapist that there is nothing that can be done to make this leg "work" again.

Most of my Physicians have said NO to an amputation using the excuses of I have something else we need to try;  it will make the disease worse; You have to see 5 other Physicians, and if they all agree then we will amputate the leg, but if one says No, we won't do it.; and on and on.  Well, I am now working with  a Pain Management Physician at the University of Michigan, and he agrees there is nothing left of the leg to save, and being honest with me, it is at least an attempt to get back to not having to focus on this leg 24-7.  We don't know if the disease will "jump" to another limb, we don't know how bad the phantom pain will be (from the CRPS/RSD), nor do we know if I will be able to stand a prosthesis.  I am not expecting that I will be able to have it on 24-7, but to even have an hour of freedom from a wheelchair!

I have joined this group, to LEARN about what I am going to be facing if we go through with the amputation, I want to know before how to get thru this uphill battle, and beat it so I can walk again, so I can wear 2 shoes again, and I can go back to being a nurse and helping other people that have or are facing what I (we) have faced.
nrsme133 nrsme133 56-60 2 Responses Feb 14, 2012

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"Amputation helped me but not everyone and may make thing worse." Charles Wayne Briggs, MSW, BCD, Licensed Clinical Social Worker and in the past, a Charter Member of the Society for Behavioral Medicine.<br />
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AjeAmputation of my right arm at the shoulder by disarticulation under the supervision and by Dr. Mary Beth Ezacki MD (c/o Scottish Rite Hospital Dallas TX) with careful attention to the nerve bundle from the boneless upper arm by wrapping the small amount of deltoid minor remaining around the nerves to protect them with a ver small fleshy pouch (needs a "bra" immediate post-surgery and perhaps another within a week or two to avoid edema and act as a 'stump shrinker.'l<br />
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Hi, I too had RSD aka now CRPS. The severe pain was disabling despite use of things that reduced it for short periods such as a special RX'd 105/106 F Whirlpool;very, very,ver slow massage; distraction, creams, TENS, narcotics,PT, OT, ultra sound (wish it could have been 24/7), etc. Had turned down amputation back in 1967 when friend in Viet-Nam urged me to cancel. Prayed about it & God led to an Margaret OTR, dba Upper Extremity Specialists in Dallas TX. She put me in touch with various support groups for pain, amputees etc. She didn't encourage amputation. Although I'd never met her. she asked the leading surgeon in the Dallas area with stressful experience doing shoulder "disarticulations" or shoulder amputations. However, Dr. Mary Beth Ezacki only worked with children & adolescents; and her practice was limited to Scottish Rite Hospital in Dallas. Only because she trusted Margaret's competence & judgement did she agree to see my wife & I on a one time basis because we were desperate after exhausting search for info. She read the history, letter and rational we both had written that ran for many pages. She explained there is no ob<x>jective data to support faith in a successful outcome for amputation as the final resort treatment for RSD. We pointed out that we understood AMPUTATION MIGHT MIGHT THINGS WORSE & IT COULD NOT BE REVERSED. I quoted Dr. Donald Wheymeyer (spelling? ), MD, who said "THERE IS NO SUCH THING AS A 5% RISK- EITHER YOU HAVE THEE BAD RESULT 100% of the time or NOT." We both said any hope of being able to function as a person, father, husband, volunteer, or working part-time was worth the risk as my function level was close to 0 (not because of arm not working) BUT BECAUSE OF THE SEVERE PAIN AND LACK OF SLEEP, SUDDENLY YELLING WITHOUT WARNING. She arranged for the amputation at another hospital where she was on the faculty of a Medical School teaching physician how to become Orthopedic Surgeon and Upper Extremity Arm Reconstruction. Actually amputation - to me - is not throwing a limb away BUT Making the damage limb MORE USEFUL, and more importantly, INCREASING THE PERSON'S TOTAL LEVEL OF FUNCTIONING. This is not for everyone. Yet, I think of the psychology student at Abilene Christian University who had a rather simple arm injection that quickly resulted in RSD/CRPS. She went to her physician and other specialists at high quality pain centers. I believe she told me the original surgeon didn't diagnose RSD or CRPS. Later it was diagnosed and despite treatment increased in severity. THEN UNFORTUNATELY, it progressed from her arm to both legs.<br />
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Her appearance changed from a beautiful blond young mother majoring in psychology to help people to a non longer vibrant and vivacious woman with a swollen face, badly and limbs from the RSD who was in a wheel chair with reduced ability to care for her young daughter and pain so severe that she was unable to drive herself three hours to Medical School Faculty in Lubbock or Dallas. Because of the location in her arm, amputation may not have helped to avoid her deterioration & spread of RSD. <br />
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However, experienced surgeons tells sometimes it spreads and sometimes it doesn't. Charles Wayne Briggs 325 671-HELP or briggs I was one of the Charter Members of the Society for Behavioral Medicine and had some experience in consultng people & family with chronic pain, severe injuries or chronic medical conditions; before having this personal experience.<br />
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I recommend "Beyond Rage" written by a woman psychologist who was working with people with chronic medical problems before developing MS and being abandoned by the man she loved who had apparently promised everyone he would love & support her "in sickness & in health--till death do we part." She discussed her own decreasing function and how understanding Recurrent Major Depression" and the disease cycle was helpful to her. Also Logotherapy books ba<x>sed on the work of Victor Frankel MD who developed his theory that "Goals give life meaning" in Vienna in contract with the useful but dark & limited useful views of Dr Sigmund Freud. Frankel's famil t was killed in concentration camps and he lived in one in anticipation of death<br />
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I heard Dr. Victor Frankel shock the annual convention of the American Psychiatric Association meeting in Dallas Texas IN THE 1980'S to a standing room only crow where you could have "Heard a pin drop." Dr Pete C. Palasota MD, a Board Member of the APA with whom we collaborate on patients while both practicing in Abilene, TX was also there and we talked about this afterwords. <br />
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He said ba<x>sed d on what he himself living with other Jewish people about to go to the gas chambers & furnaces; that to the best of his knowledge, most of the Jewish people he knew finally faced their deaths "WITH THEIR FAITH IN GOD INTACT." . <br />
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As of about 2001, I was told by the Dr Donnie Barnes Ph.D President of the Frankel Society that 95 Ph.D. dissertations and numerous thesis have supported Dr. Frankel premise. Dr Barnes teaches both in a graduate program in counseling @ Hardin-Simmons University in Abilene Texas; and does Continuing Education Seminars for Mental Health Professionals both in the US & overseas.<br />
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BTW, while in severe pain & suffering, God did help me find mean, purpose, increased satisfaction, and and even joy at times between yelling. Feel free to call. .

Yes, it is gonna be tough, but I refuse to let this disease take anymore of my life. Between my faith, my knowledge of medicine, and my will )along with the man upstairs) I feel that I am making the right decision for me! Thanks for your comments helped lots!

hi i too have had a leg taken off and have rsd in it there are some treatments that might help for a bit not going to lie to you it is tough which you already know it is but you can walk and do some things most days but some will be too bad to walk good luck and if can help just drop me a line

Thank you for the "truth"! about having the amputation done. See the Surgeon next week and hopefully will do the amputation. Would be nice to wear 2 shoes again :-) But that is only the beginning. Keep your fingers crossed! Will keep everyone posted here. Thanks again!