Monday, October 26, 2015

Phantom Pain - How do I deal with it?

In the spirit of Halloween, I have decided to write a little about the "Ghost" in my life. Phantom pains are one of the most annoying aspects of being an Amputee, 95% of amputees report at least some form of pain or discomfort coming from the non-existent extremity. For some, the pain is incredible, so bad that it keeps them awake at nights. For most pain medication does not work that well, and at best is only a temporary solution that is fraught with side-effects. I happen to be one of the lucky ones that only gets the sensations occasionally. It is always a surprise and confusing for me when it happens.

I have told you before that I keep a journal, in which I keep a record of size, weight, general notes on my activity levels and how many socks I wore each day. It has become a bit of a routine, but I have added a note about phantom sensations and pain that I feel in my "non foot'. While it is not a definitive study, I am building a database for a case study in phantom sensations. I am finding that if I wear extra socks during the day, I have an increased chance of having phantom pain, I have also noted what I did to relieve the pain. I do not want to take any medication and I have been looking for solutions. Journals are helpful when you start to feel overwhelmed. With some amputees, the pain is so severe it is debilitating, as well as so frequent as it seems to never go away. Keeping good records of the pains and times you feel them is helpful to your doctor in planning a course of action to relieve it.

Which brings us to the next item, effective treatment of the problem. Where do you go? What methods do you use yourself? Does medication help you? Or does it simply mask the problem. What do you do if your doctor feels that this is a physiological issue and not a medical (Yes, there are still some witch-doctors out there that do not believe in phantom pain, despite all the research that has been done) I can only speak of my personal experiences, they may be helpful to some, comical to others and totally useless to most. I will speak of last night, and how I overcame the sensations. Let's go to my Journal Entry:

Size AM 40 cm
Size PM 42 cm
Exercise: 13.1 miles bike ride,8,210 stepsSock Level: 0730 2 / 1000 5 / 1430 7 /1530 5 
Pain increased with too much sock level - May need to reduce level tomorrow.NIGHT: After removing leg, began to feel pain in L Big toe and exterior ankle area, pain increased to burning stabbing pain Level 4/5. Massage of residual limb did not reduce pain. Rolled to pronate position, hyperextended knee, pain began to abate almost immediately.

I do not know why hyperextending my knee while in the prone position helped reduce the pain, but I know that it worked. It has worked in the past and some of my journal entries get rather detailed on things that I have tried that did not work. I do know that from previous journal entries, whenever I use too many socks during the day, I tend to suffer more severe pain that evening. That appears to be my trigger. It is probably different for different people. I do know a few things for certain. First, Phantom pain is real, not psychological, if your physician disagrees, suggest to him that he should research it a little more, it might change his mind. (My doctor is one of this crowd by the way) and Second, simple solutions do not work for everyone. I have talked with many amputees, some of whom are in constant pain, who are seeking a rather expensive treatment where the nerve endings are sealed with a cryogenic probe. I am awaiting their reports on the success of these procedures.

 I suggest that everyone that suffers from phantom pain keeps a journal, It will help keep the perspective on a day to day basis, and keep you from feeling overwhelmed by a consistent, nagging problem. The pain is no joke, it is there, whether or not there is an obvious cause. Remember your brain usually is spot on when it comes to pain, there is a cause and effect to most pain problems, keeping a record of what you did during the day may show you a pattern that you can adjust to see if it helps in relieving the issue.

Who knows, it might just work for you, too.

Wednesday, October 21, 2015

My first full week on the Rush™ 87 foot

Generally, I do not trust reviews of any products until the tester has had enough time that the "newness" of their subject has had a chance to wear off. With the Rush™ 87 foot, that is a hard thing to do. I am a recent amputee. I have never had to walk on wood or foam feet, I have only had 2 other feet put on the bottom of my pylon, both of which were versions of the Kinterra™ foot by Freedom Innovations. I really liked that foot, too, but not as much as I like Ability Dynamic's Rush™ foot. I may have only had it a week, but I think it is great!

It is had to know where to start when discussing the foot. I can do so much more since I have acquired it. Standing still and being able to look up into the sky, especially at night was a very difficult task before I had the Rush™ foot. That sounds like such a simple thing, but I had trouble balancing. I would usually touch something to give me a reference point besides my "meat leg'. Even lightly touching another person's shoulder would let me keep my balance. With the Rush™ foot, I have the confidence to let go when I look up. The power return in the foot (toe) allows me to actually feel the amount of deviation from center, in a comfortable way that is much like what I get from my other leg. I know it is hard to explain, but if you are an amputee, you probably know what I mean.

Stairs still scare me, but I try
 to use them as much as I can
This is by far more comfortable than the feet I have had before, the roll-over and stability are more realistic as is the inversion and eversion of the foot. I am more stable on uneven ground than I have been in several years. In fact, I can only think of one area where I had any issue at all. Stairs.  I hate stairs. It is an obsession of mine to be able to use them like I used to. I have had several close encounters with injury and destruction on stairs, all of them thankfully only close calls. So when I got my Rush™ foot, this is one of the things I wanted to try.  I was in for a bit of a shock. The power return from the foot was a little more powerful than I was expecting, and I had to catch myself from launching into oblivion. As scary as my first attempt was, I have persisted until I acclimated to the way the foot reacts. Leg over leg going downstairs is not difficult, once you learn how the foot works and adapt your body to overcome the return. Do as Mama used to tell you: Stand up straight! Apparently, leaning forward moves you into the 'return' zone, but by standing straight, it offsets that feedback and allows the foot to support you. As always, make sure you have a good grasp on something stable and use 3 points of contact whenever you are on the stairs. I would even go so far as to tell you to have a partner when you start testing yourself on any uneven surface. Believe me, falling on stairs can ruin your day!

Ability Dynamics Twitter Crew Rocks!
One thing I must say: Ability Dynamics on twitter (@rushfoot) has been wonderful in both encouraging me to push hard to get the foot, and all their support when I have had any little question. When I posed the question about stairs to them, I had a response in less than an hour. Not information from some engineer, but rather from a fellow amputee who happens to be a clinical manager, who gave me advice to help me overcome some of the foot's abilities. I find their customer service is as good as their product and highly recommend them to anyone who asks.

I guess that the bottom line is: I feel that the Rush™ 87 is a fantastic product, and I promise, I will get some photos of some of the great places I plan on going with it soon. If you are a prosthesitist, I suggest that you use this foot as your 'go-to' foot for new amputees. It is easier to walk on, will take the new user into a place that they can trust their leg faster and with fewer problems. Just like their tag line says [It's] "Not Just Another Carbon Copy®"

Monday, October 19, 2015

On Prosthetic Care: White House Response Unacceptable

For many of us in the movement to halt proposed changes to the Local Cost Determination (LCD) for Durable Medical Equipment (DME) in Medicare benefits, the recent response by the Obama White House staff to our petition to review them was tepid, at best. At worst, one could say it was negligently apathetic. I am going to post both the petition request wording then the response from the "We the People" staff.

Rescind the Medicare proposal restricting access to prosthetic limbs and returning amputees to 1970’s standards of care.
Medicare, through its contractors, has proposed new coverage, coding, and clinical care guidelines that would have a profoundly negative impact on amputees across the United States.
If implemented, the policy installs new barriers that would limit and potentially deny access to appropriate prosthetic care. It eliminates coverage for certain prosthetic devices that amputees depend on for every step they take every day. It even would preclude amputees from using a prosthesis if they failed to meet the entirely nebulous and subjective standard of "the appearance of natural gait" while using the prosthesis.
Equally troublesome, the proposed policy contains no references to clinical or medical evidence supporting the changes.
For all of these reasons, the draft policy should be rescinded.
The petition has 110,136 signatures to date so far, well above the 100k threshold that the White House has set as a goal before they will take notice of any petition. However, I believe that the staff has not read, or understood for that matter, any of the proposed changes. One of the major issues is that the CMS (The agency that is responsible for implementing Medicare payouts) is the entity that is proposing the changes. Which makes the White House's response all the more ludicrous. This is a copy of what I received by E-Mail  Friday afternoon:

A response to your petition on a Medicare local coverage determination:
Thanks for using We the People, and for sharing your concerns about the local coverage determination for lower limb prostheses proposed by Medicare contractors. In order to get the most up-to-date information concerning your petition, we've gone to the Department of Health and Human Services (HHS) -- specifically, the Centers for Medicare and Medicaid Services (CMS), and the Administration for Community Living (ACL).
You can learn more about LCDs and how they're determined here.
The coverage determination process is still ongoing, but CMS wants to make clear that they’re committed to providing high quality care to all Medicare beneficiaries. They also wanted to make sure you know that HHS has met with stakeholders on this important issue, and both CMS and its contractors understand the questions that have been raised about access to the right prosthetic care -- including related technologies -- for Medicare beneficiaries.
We will be in touch with another update.--The We the People Team
Why am I all wound tight about this issue, anyway? I am not on Medicare and I will not qualify for it for almost 15 years. I am taking up this fight because EVERY insurance company in America uses Medicare guidelines as a baseline for the services that they provide. Any changes to that baseline means a probable loss in benefits per dollar of expenditure. The bottom line is that our bottom line (Each and every single person in America) will have to spend more out of pocket money for the basic care that we need to have to live a normalized life. If you give an agency free reign as the tepid response from the White House seems to have done, you open the doors for abuse. Tell me, Obama Administration, how can you go to CMS and bring our petition to their door, yet allow them to continue on their path to our ruination? Their purpose and proposal  is clear and we asked for your intervention. You simply turned to them and asked and they said "Oh, yeah, we know about what they want, we will give them what we think is high quality care" and you accepted that as an answer! NOTHING has changed!
I may be wrong, perhaps CMS will have listened to the 130 individuals that testified in the one open hearing in Washington DC, and perhaps they will make changes. I would like an assurance from the White House that if they do not make changes to their proposed wording, that the White House is committed to standing up and doing what is right. Can we get that from you?

Because Prosthetics are NOT A LUXURY!

Thursday, October 15, 2015

Early impressions of the RUSH™ Foot

Most of my followers on Twitter know that I have been fighting to get a running leg. I have done a ton of research on them and had reached a decision: I wanted to try the Rush™ foot by ability dynamics. My prosthestist has a lot of experience in fitting people for what they need and he really wasn't sold on the idea of trying it out. The only people that he had fitted for a Rush™ foot were new amputees, most of whom were either military veterans or younger, more active adults. He downplayed the flexibility, especially the inversion and eversion of the ankle. He was not sold that the special composite fiber material that Ability Dynamics named Flexeon® was as strong as the carbon fiber feet that he normally supplied. One of the major problems he pointed out was the lack of a split toe in the design, which he felt was a flaw. He had talked me out of the foot when I was getting my initial foot. Quite honestly, I am glad he did.

"But, Wait!" you must be saying, what about this review?

The reason I am saying that I am happy he talked me out of it the first time is that it gave me perspective. I have been walking on the standard foot that he gives people like me. (obese, yet still fairly active, motivated and needing a fair amount of function) That is the Kinterra™ foot by Freedom Innovations. And if you read my review on it, you will see that I believe it is a really good foot.
Tuesday, I got a new socket. it is much smaller, it fits well with a minimal amount of socking. Which in itself makes walking easier. I also received my RUSH™ 87 foot. The first step I took caught me by surprise! Not only was it more accurate in the way it felt, but it pushed me forward. It really felt like I could push off. I rolled over the ball of my foot and the flexion was exactly as I "meat foot" feeling like.It was simply amazing! The best description I have is that it felt like having a cast removed and beginning to walk without it for the first time. I know that a lot of this is in the overall flexibility of  the design. Without hydraulics in the ankle there is nothing to delay the foot from returning to its resting location. This was always an issue with my Kinterra™ foot because if I didn't roll through the step, the foot wasn't neutral for the next step, which could cause me to catch my toe. Stepping on an uneven surface really felt like I was jamming my leg, sometimes painfully. I have experienced none of that with the Rush™ foot.

One of the first things I did was head out to the local mall, with the excuse of wanting to fix my glasses. it is a parking lot that has a gentle slope to it. On my old foot, I had to short step with my left leg to ensure that I didn't have to power over the stiff toe. It used to feel like I was vaulting. The Rush™ foot allowed me to step normally and was extremely comfortable. I was very impressed with the stability and flexion it provided,  it really felt like my "meat foot".  I figured that a lot of my impression was circumstantial,  based partially on my excitement with a new toy.

That thought was quickly quelled when I got home and was out in my back yard.  We have a heavily landscaped yard that looks like a small park.  There is nothing even about the ground.  It slopes this way and that,  and before the rush foot, I had to use extreme caution walking around. The RUSH™ foot came through.  The stability was fantastic.  Walking around caused no problems at all. The amount of inversion and eversion in the foot is mind blowing. I have a area near my woodpile where the roots of a big maple tree are all exposed above the dirt. With my Kinterra™ foot, I avoided the area, but with the Rush™ foot, I was able to traverse it with ease and confidence. 

I haven't had a chance to jog at all, because as I have been writing this, I am finding some minor flaws in the fit of the socket, pressure points and all and I don't want to injure myself in the pursuit of sheer curiosity. I did however get out and ride a bike for the first time in probably 3 years. I was suprised again at how real my foot felt. Say what you will about phantom sensations (not the pain, but just the memory map feelings most of us get), for a little while it really seemed to me that I had not lost my leg at all. 

Which brings me to the conclusion of what I think of the Rush™ foot: From my initial couple of days on the foot, I find that the Rush™ 87 is far superior (for me) than the Freedom Innovations Kinterra foot and ankle system. The feel of the foot coupled with the flexability in the ankle including flexion, extension, inversion and eversion, make this hands down the best foot I have tried. It is nice to enter the #RushRebel family, and it makes me wonder why this is not the standard issue foot for everyone.

Monday, October 12, 2015

Annoyance of a loose socket.

Honestly, I haven't posted for a while for a reason. I got approved to get a high impact foot. I was expecting to be able to wait and post about it, but the process of getting the new socket and waiting on the delivery of the new foot has been long and rather annoying. One thing I have learned is that the first socket I was given only lasted about 3 months. My residual limb had shrunk so much that I was having to wear upwards of 20 to 25 ply of socking just to keep it on my leg.

To put that into perspective for our two-legged friends, that is kind of like someone who normally wears a size 7 running shoe trying to wear a size 13. It can be done, if you wear enough socks. I believe that if you tried it, you wouldn't be very comfortable walking, let alone trying to run. You might even wind up injuring yourself. Right now, if I were to remove the socking I can put my leg on and spin it freely 360 degrees. It feels sloppy and I am bottoming out almost every step I take.This gets painful, not a sharp stabbing pain, but a long deep muscle soreness. For some amputees, fitting a new socket is a difficult process, I am really hoping that this will not be the case for me. I may have been really lucky in the original fitting, but I only had a little problem with the actual scar tissue right where the bottom of my tibia pushed against the front of the socket. with a little adjusting, the irritation went away and I healed up within a week. But I have heard some real horror stories from some of my friends. One especially had some real trouble with finding someone that could fit him properly. He pushed his leg so far that it was always misshapen when he was attempting to get it scanned, then when the test socket came, he couldn't fit it.

We finally got to the point that my doctor approved the new socket. I went to get scanned, the process took almost two weeks since the local clinic is very busy. Two weeks more to get the test socket ready, and it fit like a glove. I was super excited, but now had to wait again for them to actually build the new socket. During this period of time, I was also approved to get the high impact foot, so we have been waiting to get everything properly approved and in place. I have decided to go with the Rush™ Foot, for a few good reasons: 1 they were very active and answered many of my question quickly and personally. 2 they offered a 60 day free trial of the foot. All that being said, Ottobock offered a similar deal on their Titan foot and ankle, but I am really looking for something that is closer to an actual running blade. I should be getting the new socket and foot tomorrow. There is a possibility that the foot won't be here yet, and I may need to wait a few days to get it, but I am going to get it. I promise to write a review on it after I get some real experience with it.