Hand Surgery Update

Suzanne had her pre-surgery consultation with Dr. Higgins at the Curtis National Hand Center in Baltimore today. Due to the holidays, she has opted to have the surgery on January 5th, rather than have the hospitalization and recovery interfere with the festivities. The aim of this surgery is to increase the function and flexibility in her right hand. Even though she’s right hand dominant, currently it is impossible for Suzanne to make a fist or pick up a cup of coffee, because of the loss of muscle and tightly wrapped scar tissue. Renowned surgeon, Dr. Higgins, has indicated that the surgery will take about 6 hours, and will result in a 4-5 night hospital stay, to monitor the grafted skin and migrated tendon. Image shows the tendon migration. Four weeks later, Sue will need to return to have some pins removed from the bones. And another follow-up surgery, three months later, will need to be done to finish what this surgery will start. Sometime after 4 weeks, but before the third month follow-up, she’s expected to have her final leg operation on the right stump, to [hopefully finally] close the weeping wound, and remove the traumatic neuroma which is causing much of the pain in that leg. And so it goes...

Surgery Update

Last week’s operation to clean up Suzanne’s right leg scar tissue went well. The procedure took approximately two hours and resulted in a single night stay at the hospital. She was happy to be home for Gabby’s birthday on the 30th. Today the stitches were removed and she has been ordered to remain off her legs for another 2-3 weeks pending another follow-up. They were not able to remove all of the area causing the irritation, so they’re going to want her back in early January to finish cleaning up the scar tissue on that side. In the meantime, tomorrow is her birthday.

Driving & Operating

Suzanne will be going to the NRH next week for driver training. She was there a few weeks ago for an evaluation, to determine whether her motor skills were sufficient enough to proceed to the next level. They are. So she will be getting behind the wheel again to drive for the first time in two years. The photo here was on August 24th, when the evaluator was demonstrating the various equipment needed to drive without legs. Based upon his initial assessment, he is confident that she will be able to drive as well as she ever did, after a few lessons. Sue will need to have one of the cars outfitted and complete a test at the DMV before she’s “Street Legal.”

On September 29th, Suzanne has another surgery scheduled on her right leg. This is the first surgery in over a year, and it has been a long time coming. The goal will be to remove skin graft scar tissue and smooth out the wound on the end of that leg. This should increase the comfort and fit of her prosthesis, and reduce the leakage from the wound and sharp pains she experiences when standing. She is expected to be in the hospital for 2-3 nights following the surgery – just in time for Gabby’s second birthday.

August 17, 2009

Suzanne just returned from her last scheduled physical therapy at the NRH. They are confident that she has the tools and determination to take what she has learned at the NRH to use with a local therapist; the commute will not be missed. There has still been no news on the pending right leg revision, which would address the pain and discomfort on that side. However we have heard rumors that it may be late October.

On a different note, an article just appeared in the Daily Mail (UK) about an elephant, in Thailand, who has received an artificial leg after having stepped on a landmine. The story is here.

August Update

To update you on the “Walk With Suz” scheduling, the intended date was going to be slated for some time in October of this year. However, this has been pushed to the spring, at the earliest. We had hoped that Suzanne’s healing would have progressed a little more steadily. But due to continual changes in the shape of her right leg, in particular, the fit and function of the prostheses is greatly diminished. As a result she has had a lot of discomfort when standing and walking. The scar tissue on the lower right leg is still not completely healed, from her last operation, August 26th of last year. She has met several times with her prosthetist for adjustments. But they are temporary measures that only last a short time. Her surgeons have tentatively scheduled her for a September revision surgery, but no date has been selected. And it is subject to change based upon the number of urgent care surgeries which take priority. As a result, Suzanne, has been discouraged lately by the lack of progress. But she has begun to put in a few hours per week on the phone for work. The increased responsibility is helping sharpen her mind and distract her from the pain and discomfort of the legs.

In other news, there have been several recent articles highlighting some of the great strides other amputees have made lately.

Double amputee loses legs, finds a cause; CNN

Amputees complete 500-mile transcontinental bicycle journey; Daily Journal, Vineland, NJ

Nearly 50 physically-challenged athletes compete in para-triathlon; Daily Herald, Chicago

Also, Suzanne credits much of her recovery to a sepsis drug called Xigris. There is another drug in the works right now. Here are some details:

AstraZeneca pushes ahead sepsis drug; Reuters

Best Foot Forward

We recently came across an article in the Boston Magazine, about an inventor who built himself robotic legs after having his own amputated due to frostbite from a Mount Washington hike gone awry. With his original prosthetics, he returned to mountain climbing and made an important discovery.

“He was later fitted with a pair of acrylic legs, and one day, several months after the surgery, he took his legs and some tools and headed for the mountains near Lancaster… He noticed his body got colder and achier as he climbed but his legs did not. He was able to move faster and higher than before, in part because the amputations had left him 14 pounds lighter. And up there on the mountain that day, Herr made a leap that changed his life and may someday change yours: Why can't fake limbs outperform real ones?"

The story is incredible and a the article highlights his leaps from a small college in Pennsylvania to MIT and Harvard, to a grant for 7M from the US Government to develop his designs further. Well worth the read.

Regarding Suzanne's progress, she has been continuing with her therapy at the NRH and is meeting tomorrow with her prosthetist to adjust the fit and comfort of her right socket. It has now been 11 months since she had her last leg operation and it has not been an easy journey. Due to an ever-adjusting shape and fit, her right leg has never been comfortable enough to sustain prolonged wearing and walking. And without the confidence to walk unassisted for extended periods, the hand revisions have also been delayed. Suzanne is in good spirits, though and looking forward to Gabby's second birthday.

Dateline MSNBC Article from Last Night.

Visit msnbc.com for Breaking News, World News, and News about the Economy

Links from the program: Challenged Athletes; Team Cody

Continued Therapy

Suzanne has now been to a few physical and occupational therapy sessions. One exercise she had to complete was balancing on one leg, while the other rested upon and manipulated a grapefruit sized ball. While it may seem easy at first, the exercise demonstrated how the balance normally derived from the calves and ankles needs to be compensated in the hips, thighs and back muscles. Another therapy on her hands, was placing pegs in a pegboard using the thumb and various digits. Due to Suzanne’s inability to touch her thumb to pinky, the task proved exceedingly challenging. The therapy sessions are meant to bring Suzanne back to a baseline level of competency. Many more sessions are planned for the coming weeks.

In other news headlines, here are a few articles which stand out and somewhat related to Suzanne’s situation.

1) Iraq Amputee First Person Fitted With Revolutionary 'Bionic' Legs.

2) First double hand transplant in the US completed.

3) Disabled Vet completes marathon in 13 days.

4) Double amputee faces eviction over medicinal pot.

Back at Home

Suzanne's stay at the NRH lasted a few days longer than we all expected. She was released on Wednesday afternoon, with a promise to her doctors to continue her therapy on her own and as an outpatient. The NRH therapists had her using parallel bars and stair climbers to advance her balance and leg strength. And on Tuesday, Gabrielle, joined her for mother-child independence therapy. Friday she again visited with her prosthetist for further adjustments to her limb sockets. The sturdy fiberglass does not mould to her legs and needs constant tweaking while she is adjusting to the fit.

Next on the agenda will be further revisions to Suzanne's right leg, to remove granular scar tissue and to improve the fit and comfort on that side. Her hands and arms will be addressed as well, in the near future, to remove scar tissue and release some scar-muscle tissue adhesions. However, with that said, things are moving forward and Suzanne has found a new confidence in her ability to walk unassisted with and without a walker. She just needs to build up her tolerance to be able to wear the legs for more than an hour or two at a time, due to the pain and discomfort she is currently dealing with.

Side note: Last night, 60 Minutes aired a segment about DARPA spending $100M+ on technological advancements to artificial extremities. It is posted below.

60 Minuntes Article About Bionic Arms

Watch CBS Videos Online

Sue Returns to the NRH

This morning, Suzanne, checked back into the NRH for a one-week inpatient therapy session. Since receiving her second leg, back in January, she has been without any formal training or rehab, to maximize her ability to walk comfortably. Because of the delay in the approval process, she was permitted to take a two week trip to Wisconsin, with her parents and Gabrielle, where she had more floor space to walk around, aided by the walker, than the townhouse. Approval was granted last week for Sue to return today. There, she is anticipating three, hour-long sessions daily. Interestingly, Suzanne has been assigned the same room where she stayed over one year ago. And having kept in touch with some of her therapists, everyone is arranging schedules so they are able to work with her. Once she has had a chance to learn the best exercises and a therapy regimen, she will make it part of her regular routine at the gym after returning home.

Standing Tall

Today Suzanne received her second prosthetic leg. This is the first time in over 15 months that she has stood upright, on her own. There is a great deal of discomfort in the pair, as she is now putting all of her weight onto her patellar tendons. Over the course of the coming weeks, and after much physical therapy, she should be able to walk unassisted. However for the time being, she has a walker and her wheelchair to get around. We are all very excited about this milestone and look forward to her increased mobility and comfort. (Click Image to Enlarge)

More details about Suzanne's prosthetic feet here and here.

Brazilian Model Dies from Sepsis

A 20-year-old Brazilian model, Mariana Bridi da Costa, whose feet and hands were amputated due to a septic infection has died. Da Costa fell ill on December 30, but was initially misdiagnosed with kidney stones. By the time the cause was detected, she had developed septicaemia from Pseudomonas aeruginosa. This story highlights the rapid deterioration resulting from sepsis and the unfortunate inability of the medical community to recognize the signs and symptoms of this deadly illness. More 1 2 3

Amputee Fights for Coverage of Prosthetics

Good Morning America reported this morning about a Virginia woman, Susan Bailey, who fell ill after eating an E. coli infected meal. Because of the course of the infection, doctors were forced to perform a double above-knee amputation on Susan. The GMA article does not focus on the infection or treatment, but rather the decision by her insurance company not to pay for the high-end prosthetic legs. "Anthem Blue Cross Blue Shield refused to pay for the more expensive C-Legs because they were experimental and not medically necessary. More than 25,000 C-Legs have been used by amputees." There was a "happy" ending to the story as a result of GMA contacting the Virginia Bureau of Insurance, which regulates insurers. They reviewed her case and within a few weeks, the state overruled Anthem and ordered them to pay for her new legs. There is a six minute long video at the GMA website, if you are interested.
This story highlights some of the unfortunate circumstances that occur between insurance providers and amputees. Because Suzanne has below-knee prosthetics, she has not encountered the same sort of resistance, as of yet. We hope this remains true going forward.