The Rubin Institute for Advanced Orthopedics (RIAO) > Patient Testimonials and Stories

Patient Testimonials and Stories

For current patient stories for the International Center for Limb Lengthening (ICLL), please see the ICLL website's patient story page.

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A Testimonial from Marcie W. for Dr. Ronald Delanois

When asked how her life has improved as a result of getting a knee replacement by Dr. Delanois at the Rubin Institute, Marcie has one very short but important answer: “The ability to walk without pain!” Marcie describes her experience with the Center for Joint Preservation and Replacement office as “First class…from the time I called for my first appointment. I felt that everyone heard exactly what I was saying--and treated me as if I were the only patient in the office. I have spoken to many people with my same condition-and have referred Dr. Delanois and his team with the utmost confidence and certainty. …I couldn't be happier, more grateful, and/or more pleased with the entire process and the end result!”

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A Patient Story and Testimonial: Cliff Long for Dr. Robert Peroutka

Cliff Long having his knee checked by Dr. Robert Peroutka     Cliff Long as his Captain Thomas Flint pirate character for a Heavy Seas Beer brewery tour

Cliff Long leads Heavy Seas Beer’s pirate-themed brewery tour in costume as the fictitious Captain Thomas Flint. After one tour, a gentleman approached him, and asked if his “pirate walk” limp was real. When Cliff confessed it was due to severe pain, Dr. Robert Peroutka of the Center for Joint Preservation and Replacement at the Rubin Institute for Advanced Orthopedics introduced himself and explained how he might be able to help. Cliff got X-rays and went to see Dr. Peroutka, who confirmed that Cliff had a severely degenerated hip joint.

Ultimately Cliff decided to have hip replacement surgery. He shares, “It was absolutely top flight--start to finish. I could not have asked for better treatment.” He calls Dr. Peroutka the “best on the planet. I would recommend him to anyone…. Highest marks... Highest recommendation… The new hip… has made things light years better.”

When asked how the surgery had changed his life, he said, “One, getting my life back. Number two…beginning to remove myself from probably one of the most horrible mental states one could be in. You are living a nightmare, but it’s not just a nightmare. It’s happening. You are incapacitated. You are in pain. So, how did it change me? It brought ME back-- a great percentage of my life, and there is no way to put a monetary value on that.”

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A Patient Story and Testimonial: Sue L. for Dr. Janet Conway

Sue Infection and Fracture Patient of Doctor Conway
Sue Using Adaptive Hand Controls for her Car

“Because of Dr. Conway, she has her leg,” Lori said during one of her mother Sue’s check-up visits. Sue explained that in 2014, she started to notice her ankle was swelling. After testing for clots didn’t show any problems, Sue had a CAT scan that detected a tumor in her thigh muscle. The tumor was removed, and then Sue underwent six radiation treatments. Later, while out shopping, her leg gave out and she fell, fracturing her femur (thigh bone). A rod was put in her leg, but the wound would not heal. Her doctors began questioning if her leg could be saved.

Sue was referred to Dr. Conway for her expertise in fighting infection. Dr. Conway planned to clean out the infection, but during surgery she discovered that the radiation had caused the bone to deteriorate and a lot of the bone was dead. Very little of Sue’s femur remained. Dr. Conway took out the existing rod, and had to put a new rod in that extended from Sue’s hip to her shin. This left Sue unable to bend her knee due to the rod, but her leg was saved, and she still had use of her hip and her foot. Sue began intensive oral and IV antibiotic and hyperbaric oxygen treatments and eventually her wound healed.

Lori says that during that treatment period, “Any time we had concerns or questions, I was able to text Dr. Conway directly. It was very comforting and helped us get answers quickly to things that couldn’t wait. She was very timely in responding. It was great.”

Today, Sue is proud of her independence and her ability to keep up with her three great-grandchildren. While she can no longer work as a hairdresser, her career for fifty years, she reports that she gets around well with her walker. “I’m still independent—I cook, clean, do the laundry. I decorated for Christmas. I just can’t get on a ladder or drive.” At a visit in early 2018, she mentioned she was going to look into getting special adaptive hand controls for her car so she could eliminate one of those limitations. A year later, she succeeded, and she is now able to drive her van.

Sue concludes, “I’m always telling people to come to Dr. Conway for bone and infection issues. I praise her very much. She has been a godsend to me.”

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A Testimonial from Jacob Dryden for Dr. Noman Siddiqui

Jacob Dryden, a patient of Dr. Siddiqui

I would like to write this post as a thank you to Dr. Noman Siddiqui. I was born with a club foot, and at the time I was born there were not many doctors that specialized in dealing/treating it. I had a good doctor for much of my life who did what he could to make sure I would be a normal, functioning kid. As I grew up I got stronger and more mobile. I wrestled from a young age, played baseball and football, and I also wanted a black belt in tae kwon do. I also wrestled in college and participated in track and field. Even though my leg and foot have not been that of a normal kid, I never gave up.

About three years ago my foot, ankle and knee began to really hurt, but with my foolish pride and stubborn ways I put off going to the doctor. My previous doctor retired and I didn't want to find a new one. Last year it became harder and harder to get around. Hunting and fishing became more of a chore than the enjoyable experience that I once knew. And work became painful and discouraging as many people started to notice my work pace slow down drastically. A local doctor recommended me to the International Center for Limb Lengthening, RIAO, Sinai Hospital. I made an appointment with Dr. Siddiqui and after going in and getting x-rays, I waited for him. He suggested a major surgery to fix my ankle that was now severely deformed, in my opinion.

Well, it's been a long road with two base surgeries and a third because of a mistake on my part, followed by a last one to remove the frame that helped stabilize my leg. It’s been almost a full year since my first surgery and I am writing this with confidence and a great appreciation to Dr. Siddiqui. This post October I went hunting for the first time since opening day of 2012 and I got my first deer of the season. Also, all summer while healing, I fished and camped and enjoyed it.

So thank you, Dr. Noman Siddiqui.

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Bill Hunt, a patient of Dr. Herzenberg

Hi Dr. Herzenberg,

Just heard the wonderful story on NPR about the Ponseti Method. You continue to do great work impacting the lives of so many children and adults! My sons and I are very grateful for the twenty two productive years you gave Bill after his Ilizarov surgery.

Sadly, he died in 2011 from pancreatic cancer. But I have not forgotten our many trips to Baltimore and how blessed we were to meet you and your fantastic team of surgeons and nurses.

Thank you for the good memories and the good years!

- Shirley H. and sons, Alan and David

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My son had surgery on July 3, and I would like to thank all those who had a part in taking care of him from the OR to the PACU to the nurses - Bonny, Jennifer and Sarah - who cared for him. To Dr. Monica Agree: Thank you so much for your excellent care and constant communication! Also thank you to the fellows, residents and Dr. (John) Herzenberg. Please forgive me for not remembering all of the names. Sinai Hospital was a great hospital to care for my son. God bless you all!
- Lasandra R.

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I am writing this letter in reference to the exceptional care that we received from a member of your Triage nursing staff, Ms. Mary-Anne Murray, LPN. Every time I had general questions or concerns, relative to my husband’s recovery, Ms. Murray made sure that I was informed, and my concerns were addressed. Ms. Murray always personally returned my calls, answered all my questions, and was always pleasant and respectful. She made me feel as though my husband was the only patient that Ms. Murray was responsible for. In my own words, Ms. Mary-Anne Murray can be described as a “Special Angel.” In all our years of medical treatment, I have never experienced a more soothing, patient, & pleasant woman than Ms. Mary-Anne Murray.
-Marlo

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Carlyle and her family surprised the entire staff one day by bringing an amazing (and edible) cake that was made by Charm City Cakes.     Carlyle and her family surprised the entire staff one day by bringing an amazing (and edible) cake that was made by Charm City Cakes.

Carlyle and her family surprised the entire staff one day by bringing an amazing (and edible) cake that was made by Charm City Cakes. Carlyle asked the artists to make a cake that looked like her leg when she was undergoing treatment. They perfected every detail, from the external fixator to the pink toe nails. "Thank you Dr. Herzenberg and Team! Love, Carlyle" was written on the platform that supported the cake. Patients and staff enjoyed every bit of the cake (even the fudge toes).

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Letter  Drawing
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Thank you Dr. Herzenberg Dr. Herzenberg
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Thank you Dr. Herzenberg
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Nicholas, is 5 years old and was diagnosed with Fibular Hemimelia     Nicholas, is 5 years old and was diagnosed with Fibular Hemimelia

I am writing on behalf of my son Nicholas. He is 5 years old and was diagnosed with Fibular Hemimelia at about 1 month old. We decided to have his leg lengthened and his ankle reconstructed at the ICLL because of their experience in treating fibular hemimelia and the confidence in the doctors that my son would live a full and active life without limitations. We understood that to most doctors amputation is the standard treatment for a case like Nicholas and for some children that may be the right choice but that was not what we felt was best for our boy. Nicholas is currently in a fixator for the second time and he is doing great. His first surgery was at 18 months old. Before his first surgery, we were very scared of what it would be like for him: would it affect his sparkling personality, would he be in constant pain? Our fears never came to pass. With both surgeries, Nicholas was off pain medication within weeks and walking and running and dancing and the same sweet, strong and happy boy he was before surgery. When Nicholas is asked about his fixator, he usually says something like this: "Dr. Standard put my fixator on to make my leg grow. He is awesome." Nicholas loves Dr. Standard, and we feel so grateful to have him treating our son. We trust him 100% with our boy and we know that he cares so very much about the lives of all the children he treats. This is a challenging process, but there is a lot of support at the Rubin Institute. I do not think there is any place like it in the world, and we could not imagine taking our son anywhere else.

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My Living Treasure--Dr. Shawn C. Standard
By Rachael Foote (Perthes disease, age 13)

Rachael Foote

In Baltimore City,
Dr. Standard came to town.
Full of sympathy and pity,
For all the ailing children he found.

Lucky was I,
To LIMP into his shop.
For now I can RUN,
Without having to Hop.

At the 30 mile bike ride,
We began as a pair.
Then all he saw was my backside,
And I won fair and square.

Thanks to Dr. Standard,
My hip is perfection.
So a "shout out" to Shawn
To show my affection.

Thank you, Dr. Standard! You are the best!

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Tayo was diagnosed with Perthes disease in March 2009 and had the fixator surgery with Dr. Standard in August. He is now about 9 months post-fixator. Tayho shared the most amazing thing with me tonight: today in school (5th grade) they had to write about the worst thing that has happened to them. Tayo says to me, "Guess what I wrote about?" I just looked at him. He said, "Not Perthes. It isn't the worst thing that has ever happened to me. Actually, it is one of the best things. And the fixator is one of the best things too. Think about all the friends we've met. Think about all the things I can do now that I couldn't do before."

I just looked at him and said, "Wow. That is such an amazing outlook to have Tayo," and then tried not to cry!

We never know how things like Perthes will affect our children. As hard as it is (and I know how hard that fixator can be) our children somehow seem to come through it with a perspective that is positive and that enables them to be better and stronger and more compassionate people.

Were it not for Dr. Standard and the team at RIAO, I fear that Tayo would not be in the same place that he is now, not physically or emotionally. Dr. Standard (and the fixator) has allowed Tayo to re-gain all the running and jumping and physical activities that mean so much to him. Dr. Standard and his team have also helped Tayo endure and come through this treatment with courage, strength, perseverance, and a sense of accomplishment that comes from being supported and encouraged by people who truly have your best interests at heart. We will be forever grateful to Dr. Standard and his team for the positive impact they have had on our lives.

Mary Anne and Tayo (age 10)

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Buru Surgery Progress
Buru with Doctors Radler and Herzenberg

One of the thirty patients who benefitted from Dr. Herzenberg’s Team Sinai mission trips to Uganda is Buruhan, a now sixteen-year-old boy with a dwarfing condition that made his legs grow into an extreme knock-knee position. Jackie Grant, pictured with Buruhan, is a member of a California nonprofit organization called Buyamba (the Ugandan word for “Help”). The organization works to help educate children in Uganda, and Buruhan is a student in their God Cares school. She learned Dr. Herzenberg would be leading a mission trip to Uganda in 2016 and successfully advocated for the team to help Buruhan because Ugandan doctors could not perform the surgeries he required.

In 2016, the mission team operated on Buruhan’s left leg. His leg was gradually straightened over time with an external fixator. In January 2018, they did a minor surgery on the left leg and then performed a procedure to correct his right leg. The external fixator’s correction must be gradual to prevent damage to the peroneal nerve, a branch of the sciatic nerve, which supplies movement and sensation to the lower leg, foot and toes. The team looks forward to the day that Buruhan will hopefully be able to walk independently without crutches.

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Cynthia Smiling Patient of Doctor Conway

Eight years ago, Cynthia had ACL surgery and her left knee got infected. “I was in so much pain from the infection. I went to a number of doctors who couldn’t help before I was finally referred to Dr. Conway. She was able to help me. She opened it up, cleaned it out... and got rid of all of the infection in the bone,” Cynthia says. Over the years, Cynthia has continued seeing Dr. Conway who has helped her address pain in her shoulders and is now treating her for pain in her right knee. “My trust in her is so explicit. She goes the extra mile when it comes to care. I would refer anyone to her. It’s not convenient for us to come all the way here, but we do it so I can see her,” Cynthia explains. When asked what she would tell others about her experience at the International Center for Limb Lengthening, she says, “It seems like they can help people that nobody else can help. It’s the last hope.”