Where I'm At

Well then....Lets see. I had both legs done. The right one is perfect. The left has had MANY issues due to the preexisting scar tissue, skin quality, and protruding bone under the knee. Speaking of, prior to going through all of this, my doctor and I were planning on having my left knee replaced a year or two down the line. At this time, the protruding bone was to be shaved down. Since the bone has been causing so many problems, I decided to get to ball rolling on the joint replacement. After seeing one of the top joint replacement specialists in the country, I was told that this wasn't an option for me. He said that I'd be looking at amputation either at the knee, or above. I was then sent to an amputation specialist, who shared an office with a surgeon who had previously worked on me. (Lets call him Dr. X) Upon my arrival, Dr. X decided that my appointment would be with him instead. He told me my knee looked great, and that I didn't need a joint replacement, or an amputation. The pain I was experiencing was due to a meniscus tear. I was then sent to the surgeon that was performing Dr. X's own surgery for his meniscus tear. This surgeon had no idea what to do with me as I wasn't his standard case, BUT he said that even if I did have a tear, the pain didn't resemble that of JUST a tear. He said we could do a scope to see what was what, and go from there if I wanted. Seeing as I had been all over the place getting opinions that were polar opposites, I decided to ask for another referral; this time going through the doctor that had done my amputations in the first place. I saw this new guy 2 days ago. He spent a LOT of time with me (way more than most doctors would), discussing all of my options. In the end, if we tried doing a replacement, I'd have such a high risk of failure, that it isn't worth putting myself through it. This is how I decided on an above knee amputation. 

Of course I'm feeling what any person would...but at the same time, I just want to be done with all of this. I would do it today if I could, just to start moving on. However this isn't the best time. Not only are there money issues, but there are personal reasons why I've decided to wait. Unless my legs condition changes for the worse, it will probably be another year and a half until this takes place. I need to pay off my debt, get to a place where I can handle it emotionally, and wait for the snow to melt after all that happens lol. Dragging yourself/a person in a wheelchair, through snow is waaaaayyyy too stressful...So...Yeah, thats where I'm at.

Differences Between the Legs

My right leg had minimal scaring from past surgeries, and the skins quality was fairly normal. The amputation went smoothly. I got my stitches out after a month, and started walking after 2. Right after my first day of walking the tingling sensation from my nerves (which is normal after amputation and usually controlled with meds) vanished. I haven't had any issues with that leg.

My left leg was severely scarred, and the skin was very thin and of poor quality with a bone jutting out under my knee (I call it my pop-out bone.) before surgery. This was due to multiple operations, and limb lengthenings. Immediately after surgery I experienced very mild pain. This was actually just from the cast keeping my knee straight. A few days later, after the cast had been removed, I started having shooting, pin pricking like pains throughout my leg. The nerve meds weren't controlling it so I resorted to pain killers which gave me mild relief for a couple hours at a time. After my meds being repeatedly upped, without much change, my doctor decided I'd benefit from seeing a pain specialist, however, I found a solution before my appointment (which was scheduled a month out from the time I booked it :/ ). Behold, the back massager. Because the pains were sporadic, I thought maybe constant over stimulation would help.  The back massager (Thanks Brookstone!) caused my leg to maintain a constant tingle for about 10 minutes after a 2 minute session. You'd think the constant tingle would be annoying, but compared to sharp pains that hit you by surprise, its heaven. I was at least able to relax and fall asleep at night which I hadn't been able to do in almost 2 months. It was finally time to start the process of getting my prosthetic. We knew the pop-out bone would be an obstacle but I was assured it could be worked around. After receiving my "leg" and wearing it for a few hours, the skin over the pop-out bone was clearly damaged. On the plus side the tingles were reduced almost immediately. I had a modification made to the brace, let the skin heal a bit, and then tested it out again. This time the skin over the bone formed a blister which then proceeded to spew yellow ooze, and a new spot, right above the bone had been irritated. Another modification. Some more down time. I start walking again. This time, success! No further irritation to the pop-out bone. However, upon walking more, I start having a problem with the right side of the socket being too tight, and hurting my skin. A small part of the scar from the amputation is slightly irritated too, but I chalk that up to just walking too much. It doesn't really look like anything to be worried about. Another modification made, and the right side feels great. No more skin hurting. Start walking again. This new spot on my scar has now blistered. It too oozes yellow grossness. Another modification. I stay off of it for a day or 2, and then try walking again. This time the blister turns bloody. I go back to see if we need another modification but I'm not making ANY contact on the point. It seems just the walking is enough to stretch the already irritated skin, and further the injury. So heres where we're at now. I'm supposed to stay out of the brace for 4-5 days to let it scab up a bit, and then try walking again. I'll be updating.

Things All Amputees Should Know

1. Every amputation is different. You can have totally different reactions with different ones. 

2. Go into the procedure expecting the worst pain of your life. If it is, then you were counting on it, and if it isn't that, you'll be surprised and happy. I was surprised and happy. :)

3. When they take off the cast, you'll probably be shocked. I was. Both times. Expect to cry. I didn't but I'm used to seeing nasty medical stuff.

4. It takes about 2 months for the incision on a BK to heal completely. 

5. It takes about 2-3 months after amputation to start walking with your new prosthesis.

6. If you think you can't afford a prosthesis, you might be right, but that doesn't mean you can't get one. Most states have vocational rehabilitation offices that will aid you in your quest for one as long as you are, or are planning to become a working member of society. 

7. Your residual limb is very sensitive. This is a good and bad thing. 

8. You should be aware of 2 communities out there. Devotees and Pretenders/Wannabees. Devotees are people sexually interested in people with amputations and sometimes other "handicaps". People often come of the opinion that the devotees are perverts, but in reality they can't help their attraction. Most are actually very nice normal people, but the community itself has a bad reputation because of the few idiots among them that treat others disrespectfully. Pretenders/Wannabees are people that pretend to be have a medical handicap, and sometimes they go through with trying to attain it. For instance, I spoke with one who managed to fuse his own knee by wearing a brace for 5 years. Serious pretenders/wannabees can have BIID which stands for Body Integrity Identity Disorder. 

9. As an amputee you can do just about anything that an able bodied person can do, you just need to find out what kind of compensation is needed. They make every type of arm and leg device you can think of now a days. You just need to ask your prosthetisis what will work for you.

10. Don't let amputation get you down. Look at whats happened and tell lady luck to fuck off cause you can take whatever shit she throws at you. Just to prove it, you're going to take your new prosthetic and do everything she said you wouldn't be able to. 

Post-Op Amputation Pain You May Endure

Of course with every surgery there is pain involved, but I must say that compared to some of the others I've been through, this wasn't that bad. The majority of the pain that I felt in the begining was really due to the cast locking my knee up, or the swelling from inside the cast. There are however a few other types of pain that can occur.

When getting amputated, the majority of what gets cut is skin, muscle, nerves and bone.

The skin will most likely not cause you much pain at all after cast removal, and prior to, it may just be from swelling and constriction.

When dealing with damaged skin this changes but is still easily controlled. I had one spot with a lot of scar tissue that was quite sore. The soreness became apparent whenever it was touched. After the wound closed, I began to massage it and that pain went away. After the second amputation, I've experienced this pain too but much worse as that leg was BADLY damaged prior to surgery. It was almost entirely comprised of grafted skin, and scar tissue. I massage the parts that I can and they feel better for awhile, but need to be massaged many times a day. Since I haven't gotten my prosthetic yet, I don't know how this will change over time, but I have hope that after I'm walking again, the blood stimulation will help this issue.

The bone feels like any other bone break. Some light medication will ease it.

I cant say I've had much muscle pain at all.

The majority of the pain or sensation involved though is related to nerves. 

The first leg was mostly just tingly. As long as I was distracted though, it wasn't that big of a deal. At night before bed I'd pop a pain pill just to chill it out so I could sleep. After getting my prosthetic the tingles practically vanished. With this leg I also experienced phantom sensation. I kept feeling my ankle. Totally normal to feel this for a few months. If it lasts longer, you should consult your doctor.

The second leg is not going as easy.  Instead of tingles, I have sharp random pains, and intense tingles. During the first couple weeks I also experienced a sensation as if all of my foot muscles were contracting but that stopped. Some times theres a very strange sensation that I get (it's only happened maybe 4 times) and its quite un-describable. The best way that I can put it is, prior to surgeries and medical procedures they sometimes give you drugs through an IV that make your mouth taste like metal. You can't actually taste it on your tongue but you can taste it none the less. This strange sensation feels as though the insides of your leg can taste that metal. It's very weird...

My nerve meds have been bumped up twice to help control this. At this point, a month after surgery, I take nerve meds 3 x a day, and pain meds 1 x day. The second bump came today after I called my Dr.s office because I was getting tired of thids hassle with my leg. I will now take the nerve meds 4 x day and hopefully that will omit the pain meds from my regiment completely. I'll keep you posted.

General Overview of What's Involved: From Pre-Op to Post-Op

Pre-op: 

My doctor send out prescriptions for post-op use prior to surgery, but some surgeons may order these while you're in the hospital. Either way, you should receive a prescription for 4 types of meds: an anti-biotic, an anti-inflammatory, one for nerve pain, and a pain killer.    

The hospitals will generally call you a few days prior to surgery for registration, and medical history. They'll usually have you come in 2-3 hours before your surgery for some basic tests (blood, urine), and they'll have multiple people ask you the same questions over and over and over again. In some cases, they'll do a physical. (My doctor likes one done on each of his patients before surgery.) They should also put your IV in, and start you on a saline drip.

Your doctor should come in sometime before surgery and discuss the surgery with you too.

During the wait they'll have an anesthesiologist come in and discuss the plan of action with you too. There are a few different types of blocks they can do for this procedure. I had a spinal block the first time, and a localized block the second. Discuss with them any issues you may have with anesthesia. For instance, many times they use a mask to administer anesthesia, which I can't take. The mask traumatized me as a child, so I have to make sure they knock me out prior to putting the mask on me. I also tend to hallucinate from the anesthesia so they give me "Versed" which helps with that and also gives you a smooth awakening. Sometime slightly prior to knocking you out, they will usually administer something for your anxiety such as Valium through the IV. Valium in short, is a very nice drug lol. It calms you, and makes you happy... Anyhow!

The spinal block was given to me in the actual operating room. They had me sit on the operating table, and turn around. They said they'd numb the skin a little, and then give me 5 shots. While they were telling me, they also took my blood pressure. At the same time they started administering whatever they used to knock me out through the IV, but the tube got stuck under the blood pressure wrap, and didn't get to me until after the wrap was taken off.  By this point they'd already given me 1 or 2 of the shots, unbeknownst to me. I felt the drugs kick in and in less than 30 seconds I was out. I can't remember for sure, but I think this block lasts for 12 hours.

With the centralized, they numb the spot for the injection, and shoot it in to the back of your leg, while you're in the hospital bed preparing to go into th OR. They administer the same IV drugs and get you rolling. 

This is it for the pre-op conscious part. 

The Surgical Process:

The skin:

They will cut a mostly straight line across the front of the leg where they have decided to amputate, while in the back, they will cut a "U" shaped flap, lower than the frontal cut. This will become the "bottom of the stump" skin and be sutured to the front piece to close it. 

Different types of amputation methods:

ChopStick:

This type is commonly know as the chopstick method. (I tried to find the actual term for it but couldn't, so if anyone wants to help me out...) This is where the tibia and fibula are cut, and unbound to each other. This method leaves an amputee without a substantial platform to bare weight on later on. These bones can also move individually, and can cause a narrowing of the leg. 

The E.R.T.L: 

This method takes a piece of bone (usually from the discarded fibula), and uses it as a bridge between the remaining tibia and fibula. The doctor will anchor (anchor isn't the right term either, but it'll work) it in, and the bones will eventually calcify together. This provides the amputee with a strong platform to bare weight on, and a fixed positioning of the bones. Shrinkage of the residual limb is normal after surgery in any case, however this method shouldn't result in a the cone like narrowing thats seen with "chopsticks".  Amputees with E.R.T.L.s can in many cases walk short distances on their stumps after they are fully healed.

Muscles:

In each method of amputation, muscles provide a cushion on the bottom of your stump, and are carefully positioned by the surgeon to do so, as well as create nice shape.

 Time Line:

The surgery takes about 1-1.5 hours. 

For a detailed look, check out this link for a CG amputation experience!

http://www.youtube.com/watch?v=XFb2fXPZi8A

Post-Op: 

Upon waking, I didn't have any pain, both times, thankfully to the blocks. I did have a morphine pump available to me in case I needed instant relief, and was given a multitude of meds during my hospital stay. The pain wasn't nearly as bad as I had expected, and it mostly had to do with the swelling of the leg in the cast, or the cast keeping my knee straight. Percocet was also prescribed to me in the hospital which I found more useful than morphine as it took the edge off and didn't knock me out.

Hospital Stay:

Generally 3 days, 2 nights.

Post-Op Care:

On day 2, sometimes 3, they take the cast off and  show you how to do dressing changes. Depending on who's caring for you, they may include an "end of stump" cast, as well as a knee brace. I'll be posting a separate blog entry about this topic, along with pictures and video. 

Note:

Again, I'm not the standard patient. I was released on my second day at the hospital, both times.

Post-Op Appointments:

Post-op appointment with your doctor is usually 11-14 days after surgery.

If you're released before the cast removal, you'll need to have your cast removed. Mine was done by my orthopedic practitioner in his office shortly after hospital discharge.

When Do I Get My Stitches Out?:

All doctors have different opinions of when this should happen. Mine for instance likes to wait about a month. After this appointment, your doctor should tell you when he approves of you going to get started on your first prosthetic. Mine was a 1.5 weeks later.

Approx. Time From Surgery to First Prosthetic Fitting

APPROXIMATELY 1.5 months. It ranges for everyone so be patient.

How Long Until You Get Your Prosthetic?:

Mine took 3 appointments, in 2 weeks. Again, different for everyone. 1st appointment, scan of leg and/or mold taken. 2nd appointment, test socket (I think made of acrylic?) along with foot piece are put together, and you work out the kinks. 3rd appointment, you receive your new leg if all is well with it :)

  

Time Line for Both Surgeries:

I asked my doctor originally how long I'd have from first to second amputation. The original estimate was a year. However, my right leg was done August 19th 2009, and I just recently went through the second on December 30th 2009. The soonest he had wanted to do the second was February but based on my financial constraints, he agreed to do it before the end of the year. Also note that most people don't recover as fast as I do, as I'm used to doing it after so many surgeries. Plus, I'm awesome :)

My Medical History and How I Made the Decision

When I was 2, I contracted a virus called Meningococcemia. It is "an infection of the bloodstream that commonly leads to inflammation of the blood vessels". In my case it left me with 80% of my body scarred, my right hand amputated, and a partial amputation of the right foot, specifically known as a Lisfranc. Along with these medical issues my bone density was significantly impaired, and my growth plate in my left leg was damaged. Over the years, I've had over 60 surgeries to repair the damage that was done originally, and post infection as a result of wear and tear on my body. 

The significant past ones that you need to know about for this journey include multiple skin grafts, an ankle fusion done on my right, multiple limb lengthening procedures to my left due to the growth plates damage, and an external fixator implanted to straighten the tibia and fibula. These limb lengthenings were strictly to help my left leg keep pace with my rights growth. As a result, the grafted skin on the left became stretched/thin, and I was forced to walk unevenly for years at a time. This uneven walking did some immense damage to my left ankle over the years, and after the last limb lengthening, when going through physical therapy it became apparent that a major problem existed. I could barely get my ankle to flex 90 degrees, and when walking forced it to do so, it hurt greatly. This was in 2004. 

Before the problem concerning the left ankle had been diagnosed, we moved to a different state. I spent a year traveling 4 hours each time to see a doctor that was the only one in my state on the list of approved doctors based on my insurance. He was horrible. He couldn't even comprehend my case. At the time, I was spending 8 hours a day on my feet, and afterwards I would collapse on the couch with my legs up and the inability to walk at all. I'd have to walk on my knees, or scoot on my butt around the house.

In May 2006 I decided to change insurance, find myself a competent doctor, close to home, and work towards a solution. I struck gold. Somehow I managed to find my current doctor, who gave me a prognosis that day, and offered options. 

After walking unevenly for most of my life, the cartilage and bones in my ankle had worn down beyond repair. What made matters worse was that the last lengthening in 2003 had been for about 3.5 inches, and this newly formed bone had grown in curved, causing me to walk unevenly, regardless of the fact that my legs were equal in length. The curvature wasn't caught while forming because of the angles the x-rays had been taken at. What I had been feeling all this time was the bone on bone grinding, the inflammation of the surrounding tissues, and MAJOR arthritis. 

One option was an ankle fusion in the left, which I was totally against due to the pain in my  fused ankle on the right. At this time ankle replacements were still in the process of being approved in the US, but my doctor had high hopes that we could hold off until it was an option (approx. 2 years), with some sort of drug therapy. Over the years I've had to take so many pills due to my medical history, that I try to avoid them as much as possible, so I ruled out pain killers. Another idea he presented was cortisone injections. Over time their effectiveness lessens, but they offer real relief, and could do the trick. I started them, at I think about every 4-5 months...but don't quote me on that.  Even though part of my pain following the injections was due to their effectiveness lasting for shorter intervals, it became quite clear that my physical condition was deteriorating. Even with the cortisone, I could barely stand on my feet for an hour. During this time period my doctor advised me to have a surgery implanting an external fixator that would straighten the curved 3.5 inches. The reason for this is simple. The stress of the walking on a replacement joint is made that much worse with a curved bone. Not only would the false joints life span be shorter but my pain would still exist. It took about 6 months to complete, and since the bones had needed to be shifted, my tibial tuberosity now jutted out of my leg. I refer to it as my "Pop Out bone" which you will be able to see in the photos of my limbs prior to becoming a DBK. 

By the time the ankle replacement procedure became approved, I was getting shots every month or 2. I would've probably gotten them more frequently if I had the money to do so, but that was a limiting factor. My new Pop Out bone restricted me from walking on my knees as I had previously done, and so scooting on my butt around my home became my regular mode of transportation. Also, I found my right ankle that had been fused many years ago was starting to hurt more often. The pain had become intense and limited my standing/walking ability even more-so which, left me wondering what to do on that side.

Excited to find that the procedure had been approved in the US and that my Doctor was 1 of 10 orthopedic surgeons in the country allowed to perform it, I came to him with hope of scheduling the surgery. Surprise surprise! The procedure is too new to the US to be covered by insurance. It's considered experimental even though its been done in other countries for years. With no coverage it comes to 40k. He becomes an advocate of the procedure, trying to get insurance companies to approve it. Writing appeals, speaking to news stations, and doing everything he can to bring attention to it.   He finds limited success. A few start to cover it, the biggest known: Medicare. What insurance do I have? Not one that covers it. So I look into qualifying for Medicare since I've been on disability for some time now. Epic Fail. The reasoning is my age, or so told tell me. 

I continue on the cortisone injections, still suffering, but now without hope. After a very long day I crawled into bed with my husband. My left ankle was swollen, red, and hurting beyond belief, while my right foots skin became broken down, oozed, and the right ankle was swollen. I was in so much pain that I started crying. Then the thought having to live this way, in pain, forever, or in a wheelchair made me cry much harder. My husband tried to comfort me and after me telling him how there were no other options, he asked me about amputation. I became hysterical, and adamant that it wasn't an option, so he left it alone, knowing all too well that he had at least planted the seed.  

The idea scared me. Part of the fear though, came from something in my past. The Lisfranc amputation of the right foot had been extremely difficult when trying to fit a prosthetic and keep functionality as a kid. An amputation further up had been suggested to my mother multiple times throughout the years, and each time she would freak out, object, and find a new orthopedist. Her so called reason for this was because she was concerned that it would cause me self image problems. Later on in life, I had many of those, but at this time, they didn't exist. Her idea that this would harm my self image resulted in many years of needless pain and suffering. This also resulted in me having an unfounded objection to the amputation. 

Not to say that the concept of chopping off ones limbs should be easy to accept. Obviously, it has to be approached with logic, but emotion plays a huge role in it as well. My experience with my mother just made it that much harder. HOWEVER, as you can see my mothers reasoning wasn't very logical at the time. Given the shape my body was in as a kid, I would surely have self image problems, regardless of a further amputation or not. She tends to be completely irrational, illogical, and well, I'll say it, bat-shit crazy in general. After taking this into account, I had to re-evaluate my objection. It took about 2 months, but I finally came to terms with it and brought it up with my doctor. He was totally on board. Why he didn't suggest it to me as an option I don't know, but I would bet based on what I know about him, that he read me, and knew I'd probably come to this on my own, and would've rather it be something I wanted instead of something he was traumatizing me with. 

Since my right leg was used to prosthetics, and didn't have many options either except to deteriorate further, we decided to amputate that one first. It'd be an easier recovery and rehabilitation for me. Surgery date was set 2 months later, and here, we begin our journey.