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!
- Tarlov Cysts
- Tarlov Cyst Sacrum area
MP from Scotland
- Tarlov cysts Surgery
Pre-surgery from Dr. Feigenbaum, I was in such distress with pain and lifestyle inconvenience; I was distraught with how to deal with this until speaking with Dr Feigenbaum and Debbie which gave me hope.
I can say improvement has been gradual but always progressive to date.
As of right now, I can drive my car for up to 2 hours with not much more effect than general stiffness. Before surgery I refused to sit at all. Now my perineum pain is gone and waterworks I think is normal for a man of my age. Previously anything from 6 to 10 trips to the loo through the night. Now only once.
I am so grateful for the skill and knowledge of Dr. Feigenbaum to be able to give me a quality of life which has to be appreciated when it seemed the rest of the medical profession were in denial with this condition.
My sincere thanks to Dr. Feigenbaum and to Debbie.
Lynn from Michigan
- Tarlov cysts
Shelley from Kansas
- Anterior Sacral Tarlov cysts
Sabrina from Kentucky
- Tarlov Cyst Surgery
Michelle from Australia
- Tarlov Cyst Surgery
Anna from Alabama
- Meningeal Diverticulum and Detethering
Barb from Ohio
- Sacral Tarlov Cysts Treatment
Wendy from Maine
- Tarlov Cyst Surgery
Paul from Canada
- Tarlov Cyst
“...I don't regret my surgery for one moment. I have greatly improved since having it and would have done the same thing all over again. Dr. Feigenbaum and his team are miracle workers.
My wife and daughters and I would all like to thank Dr. Feigenbaum and the entire team for all your help and support in pursuing my appeal.”
Mrs. Dale K
- Tarlov Cyst Surgery
“I am 4 years post surgical today. I want to tell all patients that even though the monitoring ends at 2 years, you are not done healing.
Keep the faith and the future can keep improving.
At an active 59 years old (ballet classes and all), I developed the nightmare of a symptomatic Tarlov Cyst. By the time I had the surgery, I had experienced a misguided decision to have a procedure at Hopkins that was totally messed up (by a nurse who sat me upright after the spinal procedure, despite my pleas)....till a phone call came...too late!
I was in agony and bed ridden about 85% of each day and could no longer put one foot in front of the other. Then I had the surgery with Dr. Feigenbaum and his team. Miracle when they first got me up....the next day!....and I could put one foot in front of the other. I cried for joy and grinned like a Cheshire Cat as I wobbled down the hall.
Yet because of my Hopkins experience and slow diagnosis due to the rarity of knowledge about the condition, I sustained lots of nerve damage.
I continued on Tramadol (NSAIDS no longer an option because I developed an ulcer, hiatal hernia, etc. from trying to avoid prescription medications) and went off after about 2 years to Duloxetine (40 mg), which I have just stopped after about 2 years (warning-not easy to stop, so research before beginning!). But it did help me while I was on it and I only supplemented with Acetaminophen...fast relief was especially effective.
Never thought I would travel, as I had dreamed about doing after retiring, but I have! In Italy, 3 years after my surgery, I left my cane in the AirBNB and climbed every step in the Tower of Pisa and Brunelleschi's Dome. I still have difficulty sitting but have been able to walk more and more.....couldn't do a quarter mile at first. The crowning gift of healing from Dr Feigenbaum's skill was a bucket list trip to New Zealand and Australia. Yes the plane ride had me circling the seats, but I made it! To top it off, I hiked up my first mountain since before my Tarlov nightmare - Mt Wellington, NZ. I cried tears of joy and took the above photo to send to Dr Feigenbaum. Not a day goes by that my thoughts and heart does not thank him and his staff. Not only were they skilled and wonderful pre, during and post surgery, but you remain their patient forever, and they have helped and reassured me numerous times. I often beg to be charged! I will never be able to thank Dr. Feigenbaum enough. He gave me my life back with my family, and a life that that is full of wonder and possibility.
I now walk from one end of Manhattan to another and as often as I can, I avoid public transportation. I relish my gift and give thanks for each beautiful step and adventure made possible by the amazing skill and dedication of Dr. Feigenbaum and his staff.
Heartfelt and forever thanks!”
Rebecca from Ohio
- Tarlov Cyst Surgery at the S1 Nerve Root
“I had a 1.9cm Tarlov cyst on the left S1 nerve root, deep inside my sacral cavity. This caused bone erosion and nerve compression resulting in the tumultuous nerve pain you all know too well. I had been in dire pain for about two years prior to my surgery and had been out of work due to the pain for over a year.
12/17/09 is the day I was reborn. Although the first two months of healing after surgery were probably the hardest to deal with during my whole Tarlov life, I still consider this single action by my hero, Dr. Feigenbaum, as the point in time where I gained my life back.
Here are some of my proudest benchmark moments:
- 3 months post-op: Returned to work full-time (sitting!), skied down a black diamond
- 7 months post-op: Drove a Penske truck across the country from California to Ohio in 4 days, averaging 12-14 hours of driving a day, and even loaded and unloaded two huge trucks
- 8 months post-op: Played in my old softball league (and continued playing in a league yearly)
- 9 months post-op: Went white water rafting for 6 hours in class V/VI rapids (this has been an annual trip ever since)
- (Almost) 6 years post-op: Went skydiving
I cannot say that I am back to 100% compared to how I felt before the Tarlov pain, but I can say that I have 100% of my life back. I no longer am limited by the residual pain left behind. My affected leg still randomly hurts, throbs, cramps, spasms, etc., but it is VERY minuscule compared to the pain I was living with prior to surgery. Throughout the past 4 years, I have often worked 12-16 hour days sitting at a desk, and although sometimes bothersome, the pain never becomes impeding.
So to Dr. Feigenbaum, I would again like to express my most sincere gratitude for your research and interest in this rare disease. Thank you for taking the time to develop new and effective treatments to give your patients their quality of life back, instead of telling them to âlearn to cope with the painâ, like so many other providers have done. My children are grateful to you as well for giving them their mom back.
To those who are still suffering and feel there may never be a salvation for them, please don't ever give up. Be a fighter because your life is worth it and you can regain control of it.”
- Tarlov Cyst Surgery over 5 years ago and still very pleased
“I am a 57 year old female and I can remember having cyst symptoms as early as 10 years old. I've had tingling, burning and numbness in my buttocks and thighs along with neuropathy type symptoms in my feet for years. After an MRI when I was in my 30's, I was told these symptoms were due to a bulging disc. After my 5th child, I was no longer able to lie on my back due to the burning and I was unable to walk barefoot for the same reason. I was just putting up with all of this because I thought I had no choice. It wasn't horrible, just annoying. Then in June of 2005, I woke up one morning and was unable to walk without pain in my back. As the day progressed, so did the pain. My chiropractor scheduled another MRI and found nothing other than some tarlov cysts that were, he felt, not causing the problem. He referred me to an orthopedic. This doctor felt that the cysts were causing the pain and referred me to a neurosurgeon. What followed was months of testing and misdiagnosis. I had scans and biopsies. I was even told that the pain was due to tumors that were inside of the cysts, that they were inoperable and that I would have to live with the pain. This was the opinion of the entire neurosurgeon board of Ochsner Hospital in New Orleans. By this time, the flare up had calmed down some, but the daily pain was steadily climbing. After two years, I started with a pain mgmt doctor. They referred me to the top neurosurgeon at LSU Medical Center, also in New Orleans. Again, I was subjected to a series of tests, with the result being that I was told the same thing that Ochsner had told me. Inoperable and I would have to live with the pain. After another two years, the pain was getting steadily worse. By this time, I was on the highest dose of Lyrica and Ultram ER, along with Vicodin for breakthrough pain.
I was also on a double dose of Vesicare everyday because the bladder frequency was horrible. Somedays I felt chained to the toilet. I couldn't sleep anymore because of feeling like I always had to urinate. I also was having to do enemas frequently because sometimes my colon would just decide it didn't want to work. The pain was taking over my life, and the all the pain meds I was taking was making me a useless vegetable living on the couch. Again, I thought I had no choice but to live with it, the only problem was that I was no longer living. I have 5 children. My youngest, at this time, was 12, and I was at the point where I could no longer care for any of them. One day I stumbled across a forum on the National Organization of Rare Diseases and there were some posts on there that were talking about a Dr. Feigenbaum that was not only willing to do the surgery but that he was getting great results. I immediately found out who he was and called the office. Thank God for the internet! His staff was very helpful and for the first time in over 4 years I had hope. They told me to mail my info to him and that he would get back with me. They also told me about the TC Foundation website and some TC Forums. When Dr. F called me, he asked questions that showed he totally understood what I was experiencing and he told me he thought he could help me. At this time, I think he had done only about 80 of these surgeries. I was scared to death, but as I continued to pray about it and talk it over with my family, we all felt I should do it. I had to do something! So, in August of 2009, I had the surgery. Dr. F was and is amazing. The entire staff was so helpful and were there to encourage me and answer any and all questions. Dr. F told me that since I had been dealing with these cysts, most likely born with them, for so long, I would probably have some permanent damage, but that he could stop the progression of the disease and that I would see improvement as time went on. That is exactly what happened. After the surgery, there was a significant improvement in all of my symptoms. the first 2 years were tough, I had good days and bad days, but still saw steady improvement. Fast forward to now, 5 1/2 years post op. I still have some bladder frequency, but my gynecologist believes this is also due to the 5 pregnancies I had, even so, it is nothing like it was prior to surgery. I do still deal with daily burning, but it is controlled with Ultram at half the dose it was prior to surgery. I weaned myself off of the Lyrica and Vicoden after about 1 year post op. I still have to do an occasional enema because of the colon not wanting to work, but they are becoming less and less. Again, I am not totally symptom free, but I am no longer living on the couch stoned out of my mind. I am working in my house and yard, enjoying my husband, children, grandchildren and life! I know that this is a long testimony, but I wanted to give hope to someone that is dealing with this. I have had this all my life and no one didn't get the proper diagnosis until I was in my 50's. Recently, I was describing what I had gone through to someone I knew. As I was talking, I started to cry, I can't believe how far I've come and how long I lived with the pain. I am so grateful to Dr. F and his team. They have devoted their lives to helping others live as pain free as they can. TC's are a tough diagnosis but there is hope for TC patients if they can get in touch with the right doctors. Thank you Dr. Feigenbaum for being willing to tackle something that no other doctors wanted to touch. Thank you to your team. I know that because of what you do you spend alot of time away from your family, please thank them for me also! I can't even imagine where I would be if I hadn't heard about Dr. F.
Submitted March 2015”
Ged and Lesley Maloney from the UK
- Tarlov Cyst Surgery April 2014
“Lesley and I fought this battle together.
After much frustration dealing with close minded UK consultants we contacted AIMIS, spoke to Dr F and Debbie West, and for the first time had a team that took ownership of Lesley's condition.
We were fortunate that an opportunity for surgery in Cyprus arose quickly, and off we went. Everything about our trip to Cyprus was first class but at the end of the day a successful surgical outcome was our goal and, my word, did the AIMIS team exceed our expectations. I am aware that we have been very lucky, in that Lesley's recovery 6 months post op has enabled her to returne to 95% of the Lesley I knew pre op, and for that, both Lesley and I, and our family, will be eternally grateful.
We are now proud to act as ambassadors for AIMIS in the UK and hope some day to motivate a UK neurosurgeon to get on a plane to Cyprus and see for himself / herself what the AIMIS team have to offer.
Lesley's condition has opened our eyes to the suffering that many people have to cope with on a day to day basis and wish Dr F and his team all the very best in the continued fight against TC's.
To finish on a lighter note - when we contacted our Doctor to arrange for our 6 month MRI follow up, we received a response from the radiologist to tell us that they would not be carrying out the scan because the TC couldn't possible be the problem. Sometimes you just have to laugh!!
Our thoughts are with everyone out there fighting the pain associated with TC's on a daily basis - there is hope - it's name is AIMIS.
Thanks Dr F, Debbie and the whole Cyprus AIMIS team.
Submitted October 2014”