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!
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”
- Meningeal Diverticulum with tethered spinal cord - So happy from surgery two years ago
“I had surgery with Dr. Feigenbaum 7/12/2012 in Dallas, TX. I would like to start by saying how wonderful Dr. F was before, during and after! I was diagnosed with a TC when I was only 17 years old after a car accident, for 9 years I saw Doctor after Doctor and tried treatment after treatment until I finally saw Dr. Feigenbaum and let me tell you, this surgery changed the my life so much. Before surgery I could not walk 1/2 mile without crying, I could barely sit for 15 minutes and had a hard time driving 30 minutes to the next town even with all the meds I was taking. After surgery recovery was very slow and challenging at times but I just knew I had made the right decision.... Well, I was right, fast forward 2 years and in July of 2014 (last month) I had taken a 2 week vacation to Maui, HI! Yes, flying from Florida's east coast was very doable as long as I stretched. During my trip I did a good bit of mild hiking and realized I only needed the occasional Tylenol or Motrin.... Then I decided to hike Haleakala Crater from 10k elevation, hiked appx 2,00ft down, about 7 miles across and appx 1,600ft back up. 11.2 mile trail in only 6 1/2 hours! I couldn't believe it! This was the ultimate pay off from surgery 2 years ago! I still have some pain when I lift something heavy and still have some numbness and sciatica. I have learned my limits and what to avoid, but never in a million years did I dream I would be able to hike!! THANK YOU DR FEIGENBAUM I feel like I can move mountains for the first time in my adult life!!!
Submitted August 2014”
- Tarlov Cyst Treatment
“I can't express my gratitude with words for giving me my quality of life back. For once in 3 years, I can say I am living without excruciating constant pain. It has been about 3 months and I have noticed that 5 of the 7 days of the week are 100% pain free. The other 2 days are a reminder that there is a vulnerable âNewâ Roxanna, and I have to take it easy. For this past year to date, I no longer take strong pain meds, only muscle relaxants for the muscle spasms. Although I still have some neurological symptoms, some pre and others post-surgical, I would not have changed my decision to have the surgery, and I consider it to have been a success, not only for the fact that my pain is basically zero, but because my quality of life has improved greatly, and I am not feeling miserable any longer, this surgery has helped me regain self-confidence and a positive outlook on life. I can continue making other people happy by living my passion of cake design, and growing my business.
I cannot bless you enough for your talent, dedication and passion for your career, and making life more manageable to those of us affected by this disease, where others have failed us. Thank you for believing we have a chance to live with dignity (tears running). Thanks to your team, who have dealt with us through thick and thin and for their infinite patience!
Thank you for changing the history in the field of Neurosurgery, were not many have had the courage to.
Submitted July 2014”
- Sacral Tarlov Cysts - This surgery has truly saved my way of life
“At the age of 14 I took a hard fall after tripping and my back pain began. My freshman year of high school I began having caudal epidurals. I saw countless doctors, specialists, and basically anyone in MO who thought they could help. I tried everything from physical therapy to radio frequency ablation in those 4 years of not knowing what was causing my severe pain. I never let this pain slow me down or stop me from anything and finished in the top of my class. By my senior year I was getting worse had given up on ever finding a true problem with my back. I lost all motion and feeling in my left leg, my bladder quit emptying and my right kidney function was low, which caused many other problems. Finally my chiropractor (who I had been seeing since this all started) recommended someone he had gone to medical school with, Dr. Feigenbaum. After one MRI he knew exactly what was causing my problem and we were soon scheduling surgery. At 18 this was nerve racking for me but I had so much hope this was going to be a pain free beginning for me, and for once I was right! I awoke from surgery pain free for the first time in 4 very long years. This surgery truly saved my way of life. I could not have finished my first year of college without the freedom I received from being free of pain. Dr. Feigenbaum and his entire staff, along with the staff at St. Luke's hospital truly gave me a wonderful new life!
Submitted July 2014”
- Meningeal cyst removal with fusion five years ago and glad I had the surgery
“I too was told for many years that my meningeal cyst was not causing the pain, numbness and inablity to function normally even though I had 60% bi-lateral stenosis, degeneration of 2 discs and intense pain. I am a Medical professional and did not like what the Orthopedic Surgeons kept saying and suggesting "more and more epidural injections", so I called Dr. Feigenbaum. After meeting Dr Feigenbaum I was sure that what he said after reviewing my MRI's and talking to me about my symptoms was right. I scheduled my surgery as soon as possible and have never regreted my decision. I had my surgery in Feb of 2009 and almost immediately was feeling better. I was up and walking after the 24 hour period and out of the hospital 3 days after my surgery. I recovered quickly and went back to work 3 weeks later. It is now 5 years later and other than some residual nerve damage and a few issues with arthritis you would never be able to tell I had the surgery or was to a point where walking was impossible. I highly recommend Dr Feigenbaum to people who have been told that Tarlov/meningeal cysts can't be causing their pain and problems before errosion of the vertebrae and nerve damage gets worse.
Submitted June 2014”
- Sacral Cysts
“I had been in pain management for almost ten years when I discovered that I had Tarlov Cysts. I had gone to many spine specialists who recommended injections, physical therapy, hydrotherapy, strength training, a TENS unit and even a back brace. Some questioned whether I was really in pain. Because the pain I was describing didn't fit with where they said my pain SHOULD be, I was made to feel as if I was dreaming up symptoms. After finding out about the cysts, I asked my pain management/spine doctor if he had known about the cysts before. He told me that he did know about them, but since they were believed to be totally benign that he had chosen not to tell me about them.
I had quit going to family gatherings and spent much of my time in bed because that was the only place I could get at least a measure of relief.
A totally unrelated emergency situation caused me to be referred to a neurologist. After addressing the other problem, which was temporary, he did a total neurological workup in which he found that I had no reflexes in my legs. After viewing my latest MRI, he said that he had found the source of my sacral pain and likely the absence of reflexes. Then he showed me three large cysts. He recommended that I see a spine surgeon. I made an appointment with the spine surgeon who had been treating patients from my pain management clinic. He told me that Tarlov Cysts were benign anomalies of the spine and that they didn't cause pain, but that if I wanted to pursue the matter further, there was a neurosurgeon in Dallas who had founded an institute dealing with Tarlov cysts. I called and made an appointment, and from that first appointment it was only about three months until my surgery.
I had bowel and bladder problems that I had endured for years without knowing they were directly connected to the location of the cysts on my spine. At one year out from my surgery, these have almost completely abated and the reflexes in my legs are now completely normal.
After the surgery, I had to find a new pain management clinic since my other pain doctor had moved out of the area. The new one stated that he was sure I had wasted my money on the surgery since Tarlov cysts don't cause pain and implied that I was just seeking drugs. Although I now have to travel for over an hour to get to his office, I found a doctor who was familiar with Tarlov cysts, and who will work with me until I no longer need narcotic pain medication.
Although I am still in pain management, I am taking less than half the pain killers than I was before the surgery, and I am having more and more pain-free days. I am getting out more and have begun new projects that would have been impossible to complete before I had the surgery.
Dr. Feigenbaum and his staff have been extremely kind, considerate and professional, and the hospital experience was one of the best I have ever had.
I would recommend that if you are diagnosed with Tarlov cysts you should seek the services of Dr. Feigenbaum and his staff.
Submitted May 2014”
- Tarlov cyst with bone erosion - I made it to the two year mark, so grateful!
“Today marks 2 years for me! 2 years ago May 12 2012 I finally made it to Kansas. It was worth the wait. I lived 90% of my time in bed. Pain so unpredictable that it was exhausting. I finally today can say my life is back 90% normal. Wearing high heels again. Dancing and walking and not being in bed all day long. I couldn't believe my eyes when I received my operative report. I had read about bone erosion and to see that I had this setting in. But it didn't win. Dr F and his staff of amazing professionals were top knotch. I never was afraid to have this surgery. All those many many doctors I had been too telling me DO NOT DO THIS and I had faith. I mean what was the better option? There was no better option. I took my report to those doctors and showed them the reality of my tenacity. And they were pleased. Yet still not on board. I know this. My life would not be what it is TODAY if I had not trusted my gut and well hey once you talk to Dr F and watch his videos how can you not get this done. No longer having right leg pain so bad that I would cry. Or not sitting or standing for very long. One thing I will say in closing is about a point he made in his YouTube video. It's a family disease. It causes depression. It's hard on everyone and that is the truth. But I had lots of support and now life is great. I get to be involved in my sons high school milestones. And Dr Frank words can't express the gratitude and how much I can't thank you enough to devote your life to so many people in this world and now they can live productive lives and enjoy just living. Laughing and Love!!!
Submitted May 2014”
Meningeal Patient from CA
- Meningeal Diverticulum
“My son was 12 years old (2012) when we discovered he had a large meningeal diverticulum at his sacral spine. The MRI showed that it extended from L1 to almost the bottom of his sacrum. The cyst was compressing his sacral nerve roots and had already eroded some of his bone.
Reta Hiers from the Tarlov Cyst Foundation led us to Dr. Feigenbaum. My son had surgery 16 months after diagnosis. Being out of state, it took some planning and we had to ask for authorization from our insurance. We were apprehensive to have this major surgery done with a doctor we never met in person, however we trusted Reta. We had a phone consultation with the doctor in which he asked to speak to our son as well. Afterwards we felt that it was in our son's best interest to have the surgery done before any other damage would occur.
Our experience with Dr. Feigenbaum and his staff was excellent. This was a very delicate surgery and Dr. Feigenbaum performed it with expertise and precision. Our stay at Medical City Hospital and the care we received there was very good.
It is now 6 months post-op. My son is experiencing some nerve sensations such as numbness, tingling, burning, etc. We were told these are normal feelings that will subside over time. We trust that he will continue to improve as time goes on.
Overall our experience with this surgeon has been very positive and we would highly recommend him to anyone who has a Tarlov cyst or meningeal diverticulum. We are truly grateful to Reta from the Tarlov Cyst Foundation for leading us in the right direction and to Dr. Feigenbaum and his staff for helping our son.
Submitted January 2014”
- 5 Tarlov Cysts, Still Doing Great 2 Years Later
“I had intermittent lower back pain with sciatica symptoms for about 10 months. I had xrays and was put on a pain management programme with no real plan on how to correct my issue. I was told my L5/S1 disc had a slight bulge and under weight bearing activities, was pinching the nerve and thus giving me sciatica. On my 44th brthday in 2012, I drove on a 9 hour return trip to visit my son. The next day, I was in immense pain and couldnt walk. This was the start of 8 months of intense pain where I couldnt drive any distance in a car, couldnt walk far,sit or stand long. Sometimes, I couldnt feel my legs, couldnt extend my legs to drive the car and even laying in bed hurt. I got an MRI overseas that stated "insignificantly there is a tarlov cyst". This saw me trawl the internet intensely and I found Aimis and Dr Feigenbaum. I was certain this cyst was the cause of my pain and after a phone call discussion with Dr Feigenbaum - he confirmed my suspicions and told me he could see 4 cysts on the MRI. The pain drove me mental. I took minimal pain meds as they made me sick. I cried all the time even though I am a happy person- but my body had had enough. I live in New Zealand and flew to the AIMIS facility in Cyprus for my surgery with Dr F on Feb 11, 2013. I had treatment for 4 large cysts and one small one at S1, S2 and S3. After the surgery, I have no pain. I have soreness in the sacrum area but nothing that requires pain meds. I am quite active again but mindful it is early days and need to limit my activity to ensure I heal properly from such an intense operation. I am so happy to have my life back.
Submitted March 2013 Update: 2 years post surgery I am still doing great.”