Elective amputation?

[elishaj33]

Hello,

I'll looking at amputating my foot due to my medical condition, ehlers-danlos syndrome, hypermobility. I'm trying to get as much information as possible from others who have opted to electively amputate and whether they regretted the decision or not. I've had some people caution me that the phantom pain will be just as bad and that I'll regret it. I tend to think it can't get any worse and I just want my life back.  This has been going on for 11 years and there is nothing else the doctors can do for me.  I either have to live my life limiting everything I do or get a wheelchair, which I think is worse that living with a prostethic.  I have a disorder where my body doesn't make collagen correctly and 99% of my issues are with my feet.  I can't stand or walk for any length of time without being in severe pain, it's not nerve pain but more like ligament and tendon pain from the tissues in my feet being so loose.  I am ultra flexible and the way I discribe it is that the structures in my feet aren't strong enough to withstand the pressure of my body. Even though EDS is a genetic condition that effects the joints, I'm lucky in that my other joints seem to be holding up and at least not causing the severe pain my feet cause me.
So, there is a lot more to the story but that pretty much sums up most of it.  I have a doctor who is open to amputating BTK and I've got a second opinion from the Lahey Clinic in Mass and they are supporting the decision as well. 
I know I'm going through with it regardless, but I'd like to get more feedback from others who have chosen this decision.  I've talked to about 6 people and they all are glad they made the decision.  I haven't come across anyone who regrets it but I'm sure they are out there. 
Are there any statistics on elective amputation and what percent of people have the same level of pain or worse?

[allenuk]

Hello elishaj.

Well, you've come to the right place(!)

Amputation is seen by many doctors as failure; others are more enlightened, and see it as an option - not the best option, which is a Miracle Cure, but an option.

Many of us here have had elective amputations, and I would guess that most of us are reasonably satisfied - not 100 per cent, of course. We would all like better sockets, more comfortable fits, better feet, etc., etc. Point being that 'going amputee' is not the answer to all life's woes - you are just exchanging one set of problems (constant pain!) for another set. But OUR problems are at least solvable, most of the time, and don't involve most of us in that constant pain, which must drive you down to the very bottom.

Phantom pains. Yes, can be a problem, but there are ways of managing your amputation which will LESSEN your chances of getting phantoms. Not 100 per cent guaranteed to work, but in my experience over the past 9 or so years, they DO tend to be effective. One or two people come to mind who've ignored this advice, and have suffered. I am sorry for them. (Moral: DON'T ignore this advice!)

The method is centred around getting your brain to think you are Free from Pain. So you go into the operation with your leg thoroughly doped up to the point where it just doesn't hurt. You have to go into hospital the previous day and get connected to an epidural drip, which drip-feeds morphine into your lower back, and makes your leg very happy. Also take all the pain-killers on offer, as much as your doctors allow. Float into the operating theatre, float out again.

Second prop of the method - if you can stand it, some can't - is to go for a local anaesthetic and not a general. Reasoning here is more fuzzy. It seems that if you stay awake, you are 'in charge' of the operation, not the surgeons. It's YOUR decision, your brain doesn't feel deprived of its independence, and so on. As I say, the thinking here isn't clear-cut, but...

Using the above technique certainly worked for me. Leg off 2005, no phantoms yet. (Well, when my 'real' stump hurts, then I get occasional hints of phantom pains, but that is, thankfully, rare).

Life after amputation? Entirely up to you - your resiliance, and your body. I am old and fat, and still cycle. Others run (would you believe that?). Others (remember the guy with no legs) climb mountains. Or just get on with it, having babies, going to work, driving, walking, etc. No, life is not perfect, but it is possible to lead a happy and fulfilled life.

I hope your pain is taken away; a life without pain is a better life.

With metta,


Allen.

[elishaj33]

Thanks Allen, that all sounds very promising. If the surgeon offers it, I'm open to doing local versus general anesthetics. I'm actually most nervous about the anesthesia because I have two small children and I would hate to have something happen and not wake up. That is my biggest fear of this whole thing. I have had three surgeries before but this seems a little different.
Regarding the regret and whether people are happy with their decision, I will take reasonably satisfied! I can imagine how it must be hard to be patient and get the right foot. And I'm sure I will go crazy after the surgery being all cooped up in the house.  I am a very self-concious person and I've already decided I won't go back to work until I have my prosthetic.  I'm open to working from home after I heal up since I work at a computer.
Right now I'm wondering about insurance and whether I will have difficulty getting them to pay for the surgery and prosthetics. We will see, it should be scheduled next week.

[allenuk]

Can't answer for insurance (being in the UK) but most of our members here are in the US, so should be able to give you pointers.

As far as being cooped up, well, it doesn't last long. Most patients (and there are of course variables in terms of how sick or well you are other than your leg) are on their new leg in about 6 to 8 weeks. It is a VERY long 6 to 8 weeks, stuck in a wheelchair or on crutches, particularly in your case with young children, too, but it does go by.

I hope others answer the insurance questions, as it all matters - and you'll probably want two or three legs in your first year or so, as tissue mass subsides, and the shape of your residual limb changes.

The 'foot' isn't the biggest deal, but the socket, which can be comfortable, or not. In those early stages it is in fact easier, as you've got loads of residual tissue as a natural cushion. This might (or might not) disappear after a year or so.

Keep asking the questions!

Allen.

[cherylm]

I'll jump in here with some U.S. perspective. Since you're looking at an elective amputation, make absolutely certain that your doctor(s) will certify the procedure as "medically necessary," so that there is little or no chance of your insurance backing out on covering the surgery. Also, look at your policy's coverage for durable medical equipment (DME), as that is what would cover the cost of your prostheses. In my own case, I'm very lucky...my own elective amp and series of subsequent prostheses have been fully covered under my employer's group policy...but I know of others who have not been so lucky. Some policies also have a maximum lifetime limit of "X" dollars on DME claims, which can pose a problem if you need to replace prosthetic components periodically. It's sad to have to lay all of that out...but "better safe than sorry."

Weighing in on the issue of "regrets," I have to say that I'm more than "reasonably satisfied" with the result of my surgery. After several years of pain and multiple surgeries trying to repair the problems in my foot (a severe fracture that kept breaking down on me), I'm pain-free and able to be as active as any other middle-aged, chubby, clumsy gal. Life is good!

I do have one concern with your situation: I know of some folks who are amputees and have EDS, and it can cause some odd complications with fitting a prosthesis. Have your doctors gone over your specific situation and discussed the possibilities with you? If your primary problem is only with your feet, it may be just fine, but if you have troubles with your knees or lower leg muscles, you'll need to be very careful about how you proceed. As I recall, there is an amputee occupational therapist who has EDS...and who also has a series on uTube. If you're not already aware of her, just Google "Amputee OT" and check out what she has to say on the issue.

Good luck to you...do keep asking questions! Going into this well-prepared will certainly be a help to you!

[elishaj33]

Hi Cherylm, thanks for the feedback. I'd glad you are very happy with the outcome, it helps me feel more confident. There is no need to live in severe pain if there is a reasonable alternative. It seems like you have a great outlook on life and I hope I can do the same. Sometimes you just have to use the cards that you were dealt and do the best with your situation.
I'm definitely a bit hesitant about the EDS, and hope the amputation doesn't make anything else worse. I do have a loose left knee that has dislocated a handful of times, but nothing recently. I'm currently doing very specific exercises to help strengthen the muscles in my thigh, which is helping to firm up the lax patella. Luckily my knee doesnt cause me any real pain, but that doesn't mean once I put more pressure on it after the amputation, it won't decide to rear it's ugly head. I have watched the Amputee OTs videos and they are very helpful. She seems to be doing ok with EDS so that is reassuring. It seems like each person has a different situation but you have the experience so thanks for helping...I have to admit I am pretty nervous about it. I tend to think I won't be sad but I guess you never know, I think I will feel relieved. A new journey. And it is always nice to hope again.

[cherylm]

"Nervous" is entirely understandable...it's pretty uncommon to decide to cut off a body part, so it's always a bit of a mystery. No-one's likely to just sit around and discuss it in a social setting...although if you can make arrangements to find an amputee in a similar situation and do exactly that, it can be a very good thing!

You're likely to go through a wide range of emotions, and not necessarily in any sort of rational order. It's a little like a grieving process: your missing piece is "dead" as far as its place in your life, and you may well go through all the standard phases of grief. But, like grieving any other loss, you will find a new "balance" and go on with your life. In your case, since you are getting rid of a painful and disabling body part, you may find the sad/grieving emotions alternating with happy/relieved feelings. My own experience was much more "happy/relieved" than "sad/grieving," but there were some times in the early phases of my recovery where I'd ride the emotional roller-coaster. It helps to focus on what's improved in you life (less pain, hope for greater activity levels) and to realize that, even if your progress is slow in some areas, as long as you're progressing it's a good thing.

In my case, the pain I felt post surgery was sooooo much less than the pain my deteriorating foot had been causing me that it was pretty easy to "look on the bright side." And you're right: it's a grand thing to be able to hope for an improvement again!

[SteveInMd]

Feb 28, 2014 12:40:12 GMT -7 elishaj33 said:

<snip>
And I'm sure I will go crazy after the surgery being all cooped up in the house.  I am a very self-concious person and I've already decided I won't go back to work until I have my prosthetic.  I'm open to working from home after I heal up since I work at a computer.  

Hi, elisha,
I hope this late reply won't be too late to be helpful.  My own R-BKA was about 7 months ago.  It was about 2 months between the surgery and getting my prosthesis.  Those two months were very frustrating.  

You will certainly be glad you've been strengthening your "good leg" -- you'll be relying heavily on those muscles.  You may also want to work on upper body strengthening, especially triceps muscles.  I personally found three items of equipment to be invaluable, and none of them had been suggested to me before the surgery.  It's obviously best to have the needed equipment on hand before they're needed.  
In my 2-floor townhouse, I used kneepads for going up and down stairs, and while upstairs around bedroom and bath:

For downstairs, I used a rollator.  It would have been hard to cook and do useful things without it:

And for getting around outside the home, anyplace where a wheelchair would be awkward, I used Lofstrand crutches rather than the regular kind.  The forearm pieces are vinyl-coated steel rather than plastic, for better stability in use:


With these items inside the home, I was able to leave the wheelchair in the trunk of the car ("boot" for those on the other side of the pond).  I wish I'd been able to practice using these before the surgery.

I hope some of this helps.  Please keep us posted on your progress!

Steve

[jakobray01]

Good Afternoon!


Before I ask for advice I would like to offer clarity about me and my current situation and why I think elective amputation would be a positive life decision.


My Name is Jakob and I am 20 yrs old and a Lance Corporal In the Marine Corps. back in August of 2018 I had a severe case of cellulitis that broke out during the crucible. I was in-patient at the Navy Medical Center San Diego where I received IV antibiotics for what was close to two weeks. After a MRI it showed that a abscess developed due to the severity of the infection. after a op made by orthopedics to open and drain/clean the site of the abscess I received a packing to put in my foot till it healed. after that I regularly meet weekly for the past nine months with my podiatrist and a physical therapist to get me back into training so I can move on in my career. over this time I had been admitted twice to the hospital for the infection returning. It finally came to fruition that I would be medically separated from the Marine Corps. My mindset has shifted to make sure I pursue my due diligence in medical treatment plan and health coverage to try to get back to living my life. I have been struggling with this chronic pain from my ankles to my toes in my left foot. having to wear a compression stocking for vascular insufficiency and consistent foot edema with a dark swelling in foot.I have developed a 4th metatarsal stress fracture from just walking. To put in perspective, I have a 3-4 even a 4-5 on the pain scale in my left foot for the past nine months with every other step. At face value that is not catastrophic, but that chronic pain stretched over that extensive period of time has definitely worn me down. surgeries with a negative ratio of success. the military will not pursue a amputation just because it's not catastrophic injury. when I am a veteran I can pursue this with the VA.


The reason I believe an elective is my best course of action is mainly due to the information above on the pain I've had everyday for the past nine months. I have sat down and discerned what would be my best course of action without acting on impulse, and I would rather not just feel but know and believe that this permanent solution to an ongoing problem is a more manageable adversity than being the common "multiple years with multiple surgeries wishing I could've done this sooner" statistic. after research and support from family and friends I am ready to stop grieving over my foot and get on with living with what I would rightfully believe to be a BKA.


I am here to seek advice and wisdom on what surgeons I can get a hold of to advocate my case and seek a better pain-free lifestyle. I'm honestly lost on who to turn to or who would be willing to do it, since this is something that I want to set up for the moment I receive my DD-214 (honorable medical discharge). Currently stationed in San Diego if that helps on location. Any advice/wisdom and connections to passionate and willing surgeons would not only be very appreciated but a huge head start to getting my life back on track.


deepest thanks,
Jakob