Discover what our patients have to say regarding their office visit, surgical experience or recovery process. We also encourage our existing patients to share their own experience!
2010 Surgery Patient from New York
- Tarlov Cyst Surgery
“They Believe...Trust Them...Live Again.”
Tarlov Cyst Patient from Georgia
- Tarlov Cyst Surgery
“I KNEW I was in the best hands possible.
I can not begin to express the devastation of my life when I had an untreated Tarlov cyst. From nowhere, I began to suffer excruciating low back pain, with pain and numbness traveling down the back of my right leg and into my right foot. The cyst was noted on an MRI and I was clueless. Being and RN, I did extensive research on this disease I had never heard of. My primary care physician had never heard of the disease either and she had no idea in which direction to send me. After visiting a local neurosurgeon and having a full battery of tests done, I was told there was nothing there to cause my pain!
I gathered all my reports and made a visit to a pain management physician I had previously worked for. He took one look at my MRI, clarified my symptoms, and then immediately confirmed that my symptoms were indicative of a symptomatic Tarlov cyst. On one hand, that was good news as I finally had a solid reason for my pain and it was not all in my head! On the other hand, the pain management physician had no idea where I should go for treatment, but he was quite sure that he was not qualified to treat me.
My internet research kicked into high gear, as I was determined that I could not continue to live my life in my current condition and I had not advocate except myself. I spent most of my days on the sofa, crying. I could not sit for more than 10 minutes, walk more than a few yards, or stand for more than 10 minutes...basically, I had no life! Early in my search, I discovered Dr. Frank Feigenbaum. I called his office and spoke with Debbie West, RNFA. Honestly, I fully expected to get the same "brush off" that I had been getting all along. What a wonderful surprise to have someone on the other end of the phone who was caring, compassionate, and empathetic. She assured me that my pain was very real and that there was hope. Debbie is a shining example of what a good nurse should be!
During my phone consultation with Dr. Feigenbaum he told me he thought he could help me! I wanted to jump through the phone line and hug the man!! He was upfront with me and discussed all the things that could go wrong, and told me could not make any guarantees regarding the outcome. At that point, my quality of life had been in such a downward spiral, I felt that I had no other option than to move ahead with surgery. I had numerous phone conversations with Debbie and learned what a true gem she is. My surgery was set for August 2007. We met with Debbie and Dr. Feigenbaum the day before my surgery. They invited any and all questions from us and gave us the answers that we sought. After meeting both of them, I KNEW I was in the best hands possible.
I am rapidly approaching my two year post op anniversary. I had hoped for a 100% healing, but so far, that has not happened. However, I absolutely consider my surgery a success!! Dr. Feigenbaum and Debbie gave me back my life. I still need to take pain medicine, but the difference between the pre-op pain and the post-op pain was phenomenal!! Pre-op, I was taking large doses of very potent narcotics which brought me no relief whatsoever. Post-op, I am taking a much lower dose of a much less potent drug and I can achieve complete pain control! I have my life back, with a couple minor adjustments, but it is life again!
Should I ever need to have spinal surgery again, I would fly back to Kansas City, no question! I have never met a more caring and compassionate neurosurgeon. I will be forever grateful for the "dynamic duo" of Feigenbaum and West!! God bless you!”
Tarlov Cyst Patient from Maryland
- Tarlov Cyst Surgery
“I contacted Midwest Neurosurgery in October 2009 (spoke with Debbie West, RNFA) as I had two tarlov cysts that were ruining my life. I explained to Debbie how six months prior, I had the fibrin glue injection at Johns Hopkins in Baltimore, which had failed. I mailed off a packet of my info to her.
Several weeks later I spoke with Dr. Frank Feigenbaum and after answering a number of questions; I expressed my fear but asked if he could help me. He said yes and I said ok.
I got a call from Laura with my surgery date. Over the course of a few weeks, I called Laura numerous times and she was very good with answering questions and never got impatient.
I met with Dr. Feigenbaum and Debbie the day before surgery. I was really nervous but I wanted the truth and they explained what the procedure entailed. They both showed compassion and I believe they really understood the physical pain that I was going through.
My nervousness the day of surgery was compounded by a 3 hour delay due to complications from the previous surgery. Debbie and Dr. Feigenbaum arrive to say they are now ready for me. I know it had been an already long day and I asked them both if they needed to sleep. They laughed and said no and that we need to get started. Fortunately, I had no fibrin glue residue left in the cyst which cut down on excessive tedious work. I later thanked them both for staying late to help me even though they did not have to.
I stayed in the hospital 4 days...both the night and day nurses DD and Tina were very good and understood how to take care of me. The first night was difficult but fortunately by the third day I was walking around the hallways.
I med Debbie and Dr. Feigenbaum later the following week and they were pleased with my progress. Debbie had given some parting advice on how to live for the next 6 weeks to heal heal properly.
Over time I have emailed Debbie many times with questions and concerns. She always responds with advice or recommendations. I do my best to listen and I appreciate her time as I do know how busy she is. I have had several MRI scans and Dr. Feigenbaum has called to discuss the results and I appreciate that also.
Finally, the best news out of all this is that I have my life back. I am not 100% and may never be. Time will tell. What I can say is that I am 100% better and can do most things but I miss skipping rope.”
- Tarlov Cyst Surgery
“After reading the testimonials, I don't know what I can add, but "Thank you, God!" for saving my life. Dr. F and Debbie West have a calling that is bringing fantastic results. My surgery for two large bilateral cysts at my S2 and S3 is 2 1/2 years in history, done in January 2009. The nerve path regrowth pain was the only discomfort post-op and that was for only a few months. For years before that, I'd been to orthopaedists and neurologists, all who said they could find only mildly degenerative issues. Finally, I was practically bedridden, unemployed and trying to qualify under Disability.
It was my second MRI of the lumbar spine that brought the issue to light--at least to me and the radiologist who wrote the report. Recently moved to Texas from Johns Hopkins, he was familiar with the pathology of Tarlov cysts and perineural cysts. The lower part of the lumbar MRI picked up these two cysts--and HE PUT IT IN THE REPORT. I'm told most times radiologists don't even mention it. I called him and asked what these cysts were. That led me to search on the internet and I had almost 100% of the symptoms listed under the Tarlov Cyst Disease Foundation's website. Thank you, Reta Honey-Hiers, for your compassion and consultation.
I'd had the cysts so long that Dr F said the bone had almost been completed eroded. Dealing with the pain and the ancillary effects is hard enough but to get diagnosed with a rare disease is another added challenge. To educate physicians on the facts and available treatment gives us post-op successes a mission!”
Tarlov Cyst Patient from Louisiana
- Tarlov Cyst Surgery
“I found Dr. Feigenbaum through the Tarlov Cyst Association website after I was diagnosed with Tarlov Cyst in September of 2009. I sent him my MRI films and report and was pleasantly surprised when he himself called me back. I have never had a doctor call me himself, let alone take so much time listening to my symptoms and asking questions and generally caring. I was very pleased after talking to him and together we decided that surgery would be the best option for me.
After a long fight with insurance to get the surgery approved since it was out of state and many phone calls with Dr. Feigenbaum's nurse Debbie and his office assistant, Laura my surgery was scheduled for September 21, 2010.
I was frightened terribly at the thought of having surgery in another state by a doctor that I had only spoken to once on the phone! They helped ease my fears by sending packets with information about the hospital and the area. Laura set up housing for me and my family on the hospital campus.
After arriving in Kansas City two days before my surgery I saw Dr. Feigenbaum for my pre-op appointment and was very impressed with his concern over my condition and the time he took to answer my and my family's questions, and by his overall professionalism and in-depth detail of explaining everything that was going to be done to me before, during, and after surgery. Debbie was by his side the whole time and stayed after Dr. Feigenbaum left the room to answer any more questions. I learned very quickly that where you see Dr. Feigenbaum you see Debbie. They are a great team!
The day of my surgery went beautifully! I couldn't have asked for better care from the hospital staff! They were wonderful! My surgery was successful and took just a little over two hours. Debbie came out and explained everything to my family. The rooms were neat, clean, and had very modern equipment in them. The nurses on the Neurosurgery ward were wonderful! They worked with me non-stop that first night. All of the nurses on that floor know Dr. Feigenbaum's protocol for all of his Tarlov Patients and have no problem following it.
After two days in the hospital Dr. Feigenbaum released me to go back to the condo until my post-op appointment with him the following week. He answered all of my post-op questions and was very pleased with my progress. I saw him a week later and was released to fly back home to Louisiana. He and Debbie made sure that all my questions were answered.
I am now four months post-op and doing much better. I have some days that are better than others, but I am able to sit and stand longer than I was before the surgery. My pain has been reduced from a ten to around a four or five. I have flare ups often, but that is to be expected. If I have any questions or concerns all I have to do is pick up the phone and I will have an answer before the end of the day. That is not something that you get where I live with doctor's offices.
If you have been diagnosed with Tarlov Cysts, I highly recommend that you contact Dr. Feigenbaum's office for a consult. He is wonderful! I have no idea where I would be today without his skillfully guided hands that God gave him to help heal people! He is the best of the best!!”
- Sacral Cyst Surgery
“My name is Sherri and I live in Brampton, ON Canada.
In early 2010 I was diagnosed with 3 cervical tarlov cysts and 1 large sacral meningeal cyst that had already caused major sacral bone erosion and nerve compression with associated S2-S5 nerve damage.
When I was diagnosed no one in my Province was able to give me any answers, medical advice or options. Thankfully my research brought me to Dr. Feigenbaum and his amazing, informed and customer service oriented staff.
Within 3 months I'd supplied Dr. Feigenbaum with my MRI images and medical history along with a list of current and quickly developing symptoms. Dr. Feigenbaum called me and took his time explaining to me what he found in my MRI Images, and provided me with detailed information of what could or should be done.
Dr. Feigenbaum advised me that the largest of my cervical cysts measuring 1cm was located in a dangerously close proximity to my left vertebral artery. I was already aware of this, but even though I'd been told by other Surgeons that this specific cyst could not be treated due to the high risk of injury to the artery, a major blood vessel to the brain, Dr. Feigenbaum assured me that he has treated other cysts like mine and felt confident that he could treat this one as well if the need should arise. This answer brought with it an immeasurable sense of relief and he helped to diminish most of my fears associated with this specific cyst. Until Dr. Feigenbaum I'd feared this cyst could even put my life at risk if it did, or was growing. Now I felt confident in knowing I had choices.
Then Dr. Feigenbaum continued on to discuss my sacral meningeal cyst, which according to him was impressively large.
The cyst measured 6 x 1.5 x 7cm upon diagnosis and according to Dr. Feigenbaum had already caused major sacral bone erosion and extensive sacral nerve root compression.
He explained that the symptoms I'd listed matched perfectly with the effects that such a cyst would cause. Then he continued on to inform me that he believed the sacral cyst was more of a present danger if left to grow and he suggested I consider treating the sacral cyst first. He also suggested that we continue to monitor the cervical cyst for growth.
Dr. Feigenbaum explained to me, in detail, all of the risks associated with surgery if I should choose that route. At times I even felt as if he was trying to talk me out of it! Once he'd finished scaring me with the dangerous, surgical possibilities he took the time to ask if I had any questions.
My first question of course, was ok, now we know what could happen if I decided on having surgery, now I wanted to know what could happen if I didn't have surgery? After a brief hesitation he advised me that over time, all of the same things that could happen during surgery could possibly happen if I didn't have surgery and the cyst was left to grow.
I greatly appreciated his honesty and his straight forward, informed approach to all of my questions and decided then and there, yes, I wanted surgery.
In my mind surgery gave me hope. Without surgery I felt I had no hope and all I could look forward too was the inevitable, devastating development of the sacral cyst which would eventually make the pain unbearable and my mobility non-existent. So yes, I immediately chose hope.
The following months included health insurance applications to pay for the surgery, a long drawn out process in Ontario, in which Dr. Feigenbaum and his staff supported me every step of the way with answers, letters, phone calls and repeated MRI monitoring as we waited for payment options to show themselves and make this surgery, and my renewed hope of a better future, a reality.
In July of 2011 Dr. Feigenbaum went to Nicosia, Cyprus for his first round of surgeries with AIMIS Spine. Through a lot of juggling and negotiating, I was able to meet Dr. Feigenbaum and his staff in Cyprus and I will always be thankful to say I was the first of Dr. Feigenbaum's patients to undergo Meningeal Cyst surgery in Cyprus.
During my time in Cyprus, under Dr. Feigenbaum's care, with the assistance of his surgical Nurse Debbie West and the AIMIS Spine patient support team I was treated like royalty and my surgery was much less traumatizing than I could have ever dreamed possible.
I am now almost 4 months post op and I am doing better than anyone, even I could have ever predicted.
Immediately following surgery the sacral pain that had become part of my every day, for much longer that I could remember, was gone! The day following surgery I was surprised at my ability to feel sensations of touch in my right leg, a feeling I'd lost a long time before.
I still Iive with the normal, to be expected limitations of any 3 month post op patient, but I am slowly increasing my walking time and able to move through my days in a world no longer controlled solely by the fear of my limited and painful future. I am no longer restrained by the same, constant pain that had prior to surgery accompanied my every waking moment.
Today I am excited about my dreams for my future and now I not only have hope, I am living everyday within the gifts of hope that Dr. Feigenbaum had given me.
I am more grateful to Dr. Feigenbaum for the gifts he's given me with his commitment, kindness and expertise, than any amount of money or words could ever repay.
Thanks to my own personal and amazing experience I will always confidently recommend Dr. Feigenbaum, to anyone faced with this scary, confusing, and unfortunately for us patients, misunderstood disease.
I honestly believe that Dr. Feigenbaums surgical experience in the face of this rare and devastating disease is a gift and blessing to many who feel blessings are no longer possible in our futures.
There are choices, and thanks to Dr. Feigenbaum and his staff I had an opportunity to choose a future with a lot more hope and a lot less pain.
Hopefully I won't ever have to return for treatment of the other cysts, but if that need should arise I will again come to you with confidence and gratitude.
From my Grandson Khellen, My son Ken and the many others who have loved and supported me through this journey I would like to say once again.....
Thank you Dr. Feigenbaum, Debbie West, Laura, the staff of AIMIS Spine in Cyprus and the many other caring and dedicated staff who have made this dream a reality for me.
You've given me the best gift I could have ever received. An exciting, new chance at a satisfying and pain free future......
I will never forget, and I will forever be grateful.
- Thoracic Cyst Surgery
“It has been nearly a year since my surgery. I can say with confidence that the procedure has restored my life. Following my accident, I lived with pain and spasms everyday, for nearly five years. I was declared to have a permanent total disability , with no hope of recovery.
I continued to seek treatment for my disabling injury for many years. Every MRI performed revealed the presence of a perineural cyst at T5-6. Each report of findings stated that the cyst was incidental or asymptomatic. I experienced severe pain and spasms, thousands per day, every day, as a result of this cyst. I was prescribed a wide range of medications to address the symptoms, and continued to push myself through physical therapy. Despite all efforts to eliminate, or control the pain and spasms, they continued. My last spasm occurred at the Research Medical Center in Kansas City on November 30, 2010 while I was awaiting my surgery.
I am now completely free of all pain, spasms, and medications. I, my family and friends are grateful for the efforts of the medical team of Dr. Frank Feigenbaum and the Tarlov Cyst Disease Foundation.”