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 Surgery - Very Happy at a Year After Surgery
“I would like to thank Dr. Feigenbaum and his entire staff for giving me back my life! In March of 2011 I began having pain in my right hip and leg. My primary care physician ordered a MRI of my entire spine which showed my double major scoliosis and some disc issues related to that condition. I was told that my pain was not related to my scoliosis and referred to pain management. This began a long journey for me, one that led me to multiple doctors in varying fields, but one after another were puzzled by my condition. After months of frustration on one of my many sleepless nights, I decided to put my MRI study into my laptop and read the radiologist report. It was then I discovered the cyst in my spine located at the S1/S2 level. I viewed the images which clearly showed a large cyst and was puzzled as to why this was never mentioned by any of the physicians I had visited.
I traveled to meet the radiologist who had initially read my report, who told me that I indeed had a cyst in my sacrum but that it would NEVER cause me pain. I described my symptoms to him and told him that there had to be an explanation for my condition. When I asked him what his recommendation was, he told me I should go back to my PCP and ask for a psychiatric evaluation! I was angered, but refused to stop looking for the cause of my pain.
By the beginning of 2012 I was suffering from unbearable pain. It was impossible for me to sit for longer than a few minutes and I was steadily losing my quality of life. I had already left my job (8 hours a day at a desk which was impossible to perform) and was no longer able to participate in my children's school and recreational activities. My marriage began to suffer as well. I had been told over and over again that I had a chronic pain condition and my best option was to accept that diagnosis and make the most of my life.
One night I discovered Dr. Feigenbaum's website, and the link to the Tarlov Cyst Foundation. After reading the list of symptoms I realized that it was not only possible, but likely my symptoms were cyst related. I called the Dr. F's office the very next business day and scheduled an appointment.
I met with Dr. F in April of 2012, and began the process of healing. After reviewing my tests and symptoms, he presented me with my options. I knew that my health would continue to decline if I did nothing, so I decided to start the necessary paperwork for surgery. The risks were clearly defined for me, but I pressed on as my health seemed to deteriorate with every day that passed. Finally, the last day of July of 2012, I had surgery.
Dr. Feigenbaum and the entire staff at St. Luke's Hospital in Kansas city were nothing but supportive and instrumental in my recovery. I noticed several improvements within days of my surgery, the most noticeable being the return of feeling in my groin area as well as the return of strength to my right foot. Before the operation I had continuous tingling and numbness in my groin and my right foot would drag when I walked due to loss of strength.
My post surgical pain was easily managed by pain medications, and within three weeks I required less pain medication than I did before surgery. I have experienced continuous improvements since then. It has now been nearly a year since the operation, and I have recovered all of the quality of life I had lost. I can now sit as long as I wish, walk as far as I want, and live free of pain medication! Had I not followed my instincts and sought the care of Dr. Feigenbaum, I would be living on pain pills and relegated to live the rest of my life as a shadow of myself. Now I am 34 years old, remarried, and getting ready to embark on the next half of my life as a happy and healthy woman! Were it not for the dedication and skill of Dr. F, who knows where I would be?
Don't give up if you find yourself where I was...there is hope and you have a future!
Submitted July 2013”
- Tarlov Cyst Surgery
“I had Tarlov Cyst surgery last Nov 6th, 2012. As I pass this one year "anniversary", I would like to share my experiences in hopes of helping others. By the time I had the surgery I had been through many doctors and tests, procedures and wrong diagnoses for my increasing and debilitating pain. When a radiology report revealed a Tarlov Cyst and suggested follow up, my husband googled it and though the symptoms fit like a glove, the pain management Dr( a spine specialist) refused to believe it. I have since found this ignorance common and frightening. I sent my info. to Hopkins and the diagnosis was confirmed. I had the fibrin glue treatment there in July 2012 and it actually increased my symptoms. I went downhill till my surgery with Dr Feigenbaum.
Immediately after the surgery, when first allowed up, I could finally put one foot in front of the other to walk. (I had been only hobbling side ways before.) I actually had tears of joy. However a long road still was ahead. Improvement for the severe nerve damage the cyst incurred is a painstakingly slow and uneven journey. However Dr Feigenbaum prepared me and gave me not only his amazing skill and compassion, but the gift of hope. He warned me about the upcoming months(3-6, although mine continued an extra month!), when I would be able to do more but it would hurt more...as advertised! By January 2013, I realized I could walk close to a half mile. Around month 8, the pain began to ebb more and I started to realize how much more I could do. The "sharp rocks" feeling when I sat, the constant stinging and pain in the thighs, hips and private areas faded. Pain began to centralize at the sacral site. Progress was still uneven, but very noticeable. At 12 months, while still hoping for further progress, I can walk about a mile at one time and sit for longer periods. I am down to 1-2 50 mg Tramadol a day for pain, with a very occasional Tylenol thrown in. I also have been using acupuncture with a trained medical doctor which has provided temporary respites from the pain.
I wish I could spread the word to every Tarlov sufferer about Dr Feigenbaum and his wonderful, compassionate and always helpful staff. Help is there. I thank him in my heart and mind every single day and with each step I take.”
Beathrice from Italy
- Two Tarlov Cysts
“I just wanted to say a HUGE THANK YOU to Dr. Feigenbaum for giving my life back. I had surgery 13 days ago in Cyprus and all my pains that i had have gone. I couldn't walk anymore before my operation and i now can. Dr.Feigenbaum changed my life and i can't really thank him enough!
Submitted December 2013
Update at one year - still doing great!”
- Sacral Tarlov Cyst Surgery
“Shortly after childbirth in 2004, I began to experience neuropathy in my toes. It was numbness and neuropathic itch which made diagnosis very difficult: my earliest treatment was with a podiatrist who was medicating me for toe fungus.
Fast forward to 2009, I had sensory and motor neurologic symptoms in my lower extremities, pudendal neuropathy, bladder dysfunction, and vertigo. I could barely walk or function in my obligations. I did improve with physical therapy and was able to function in a state of intractable discomfort and highly medicated.
An MRN in 2010 showed tarlov cysts in my sacrum, but a chorus of physicians told me to ignore them. The first "Tarlov cyst doctor" I sent my films to, seemed to discount the cysts because he did not believe they were large enough; but he did suggest that he could do a spinal tap to relieve CSF pressure, and if this helped he could treat me by implanting a shunt. This sounded barbaric to me. My insurance company wanted me to have the cysts fibrin glued, a practice that has been almost universally abandoned due to poor long term outcome.
Dr. Feigenbaum was the only physician in the field whose approach made total sense. He went over my images with me, and I was apalled at what I had been told by other physicians because a monkey could see that I had severe nerve root compression. Due wasted time with other physicians and an epic battle with my insurance company, two years elapsed between the time the tarlov cysts were identified and the time when I actually had surgery with Dr. Feigenbaum. In the interim, my legs had become so weak that I frequently injured myself walking; and I had become obese due to inability to excercise. I was on 4 medications with side effects that made me miserable. I was progressively developing more sensory neuropathies: numbness in the feet and legs, burning pain on the bottoms of my feet, intermittant sciatica, and difficulty with more branches of the pudendal nerve. I was surviving until surgery, not living.
I would like to emphasize that my results are probably not typical, but I felt dramatically better after surgery and was walking laps around the hospital the minute my 24 hours of lying flat were over. Pain at the surgical site was minimal. It was just sore, so I never refilled my narcotic and just used naproxen for pain. I had more sensation and strength in my legs immediately post-op. I have not had pain in my feet or legs since surgery; only continued mild neuropathic itch in my toes. My pelvic area was numb immediately post-op which was wonderful for me with my history of pudendal neuropathy, but did make bladder and bowel function more of a challenge for a couple of months until sensation returned to the area.
Immediately post-op I thought I was in heaven. I left the hospital after 3 days, stopped at Walgreens to fill my prescriptions, and was out grocery shopping the next day with my friend. After my post-op visit a week later, I flew home, and immediately resumed household duties. I am almost 9 months out and steadily improving. I had some struggles early on, with my bladder especially and also I "overdid it" to a crazy extent in my 4th month and had a flare of pudendal neuropathy for most of the 5th month as a result. On the up side: I am down from 4 meds to 2 meds, in lower doses. I walk 2 miles daily and am taking off weight. My legs feel perfect and my feet improved. My pudendal symptoms are fading into the background as they gradually improve (not the heaven of the initial numbness, but definitely doing well!) Only my bladder remains at pre-op level but I am very confident to have improved so much by 9 months since I am aware many patients take 2 or even 3 years to experience optimal results.
I just got a job, and feel like I am getting my life back. After experiencing slow but steady deterioration, I am experiencing improvement at a relatively rapid rate, although day-to-day I certainly do need to have patience.
Dr. Feigenbaum is the only doctor working in this field I would have allowed to touch me. I hope he is able to teach his techniques to other talented Neurosurgeons in the future, because I think he has devised the best treatment presently available for Tarlov cyst disease. After a lot of research and self advocacy I was able to find the ONE practitioner able to save me and my family from this nightmare. I urge anyone who suspects tarlov cysts might be playing a role in their pathology, to bring or send their MRI to Dr. Feigenbaum, and find out if you are a candidate for tarlov cyst surgery. His MRI evaluations and patient exams make sense: They are not based on the almost universal bias physicians seem to have against appropriate diagnosis and treatment of Tarlov cyst disease.
I know many patients struggle more post-op than I did; each individual reacts differently to having the nerve roots directly handled and manipulated. But in the long term, if tarlov cysts are compressing your nerve roots then in my opinion Dr. Feigenbaum's treatment is your best chance at a normal life.”
- Tarlov Cyst Surgical Treatment
“All I can say is "thank you, thank you, thank you Dr F and staff!" After nearly 7 months of severe Tarlov Cyst pain, and an ineffective Fibrin Glue Injection at Johns Hopkins, I am up and walking 30-45 minutes a day with no tailbone pain/pressure, no numb legs, and no sciatic nerve pain. On May 11, 2012 I felt like I met the miracle worker! Dr F was on time, very cordial and immediately looked at my MRIs and noticed not just the 1 Tarlov Cyst I was told I had by other doctors and surgeons, but 3 Tarlov cysts. After performing some in-office tests and asking a series of questions he concluded the cysts were definitely the symptoms of pain and recommended and explained the Tarlov cyst treatment procedures and recovery restrictions. Liking Dr F immediately, and feeing 100% confident he is THE BEST in this field, I went home and consulted with my husband and family, and called to schedule surgery the next day. Everyone on his staff was extremely professional and very kind. His surgery coordinator Laura could not have been any more helpful and nicer. Dr. Feigenbaum and his staff actually started my surgery almost an hour early. They explained everything crystal-clear to everyone with me, and made sure that not only I, but also my mother, had no questions and eased any anxiery or fears we may have had pre-surgery. My recovery was much easier than I was expecting. The staff at Pine Creek were fabulous and attended to all of my needs - most of which were pain med requests. I was expecting to want/need heavy pain relievers every four hours to be comfortable. However, the pain was much more manageable and was different than my pain before surgery. I had no pain/pressure in the tailbone, no numbness in my legs/feet and no lower back pain or sciatic nerve pain. The main pain I felt was near the incision site, which was to be expected. I was up and walking the 2nd day after surgery, and was released on Friday. I am obeying post-op surgery recommendations to a T and so far this has been much easier than I expected. I would tell anyone I know who is going through any TC pain to not even question Dr. Feigenbaum's recommendations. He is definitely the best in this field, and a life-saver who has given me my life back. So very very worth it! I am walking 30-45 minutes a day, able to sit 45-60 minutes with no tailbone pain (more muscle back pain due to inactivity for 7 months), and I can feel my calves and feet again! I have not taken any pain medication since August 25, 2012 (ten days after surgery). Occasionally at night I take 2 Advil, but more for sore muscle pain from slowly getting back into more movement that my body was deprived of for so long prior to surgery.”
- Drainage and Wrapping of Multiple Sacral Tarlov Cysts
“I will be forever grateful to Dr. Feigenbaum for giving me my life back. I am one year out from having surgery to drain and wrap three large Tarlov Cysts at the Sacral level and am doing wonderful!!!! After struggling for several years with debilitating and radiating pain which caused me to go from extremely athletic to hardly being able to walk, having no luck with conventional treatments, and having no one able to truly tell me what was going on, I did my own research and found Dr. Feigenbaum through the Tarlov Cyst Foundation web site. I called his office and for the first time felt like someone understood what I was dealing with. His staff was truly remarkable, and went above and beyond my expectations. I made the long trip to Kansas where I had surgery. I went from being in excruciating pain to walking around the hospital 24 hours after surgery with only surgical pain. I would recommend Dr. Feigenbaum to anyone dealing with Tarlov Cysts, and I truly believe that he is phenominally gifted. Thank you Dr. Feigenbaum, I will be forever grateful!”
D from Florida
- Meningeal Cyst Patient
“I do not know where to start to tell you about my experience with Dr. Feigenbaum and his angel of a nurse assistant Debbie West but if there where a book written about how to treat a patient these two would be the prototype used. From the moment I contacted them I have received nothing but the most professional and caring response. Finding a surgeon who understands the pain these cysts cause led me to Dr. Feigenbaum. I had surgery in October 2007 and truly have my life back. I am not yet 100% percent but the difference in my pain level pre and post op is remarkable and I feel there is healing still to come. When I read my operative report and saw what had been done on my spine I knew I had been blessed to find such an incredibly skilled surgeon. Post operatively most of my contact has been with Debbie West and I cannot tell you the support I have received. It has been 16 months since surgery and still I know they are there for me if I need anything. If I ever again needed surgery on my spine back to Dr. Feigenbaum I would go in a heartbeat. Kansas City was a wonderful city to visit and the people there are true Midwesterners greeted always with a smile and happy to be of service to you everywhere you go.”
- Tarlov Cyst
“I have had back pain most of my life, I had 5 children and thought that they were the cause of it, one day I was shopping and I bent over and had the most excruciating pain in my low back you could imagine, I could hardly make it to my truck to drive home, I felt as if I would pass out from the pain. It took my PC doctor several MRI's, other doctors, including physical therapy, chiropractic treatment, nothing was giving me relief... I asked my Dr. for a copy of my MRI to take to the Chiropractor, when I read it and saw multiple Tarlov Cysts at S1 and S2, I almost had a heart attack, I had no clue and neither did my doctor what they were. I did research on the internet and found a support forum that educated me on this disease. I had to educate my primary care doctor...I ended up going to Portland, Or. from Calif. to have Fibrin Glue Injection done, which did nothing for my pain. Then I found Dr. Henderson in Wash. DC I contacted him and he did my first surgery. I was still in a lot of pain. 2 years later I found Dr. Feigenbaum, I contacted him and when he called me and said yes he could help me...I made arrangements right away to have a second surgery. I had my surgery at HSSH the staff at that hosp. was awesome..Dr. F. and Debbie West are the best...I have never in all my surgeries (and I've had quite a few) had such personal and compassionate treatment as I did from them. Am I cured? no I still have cysts growing on my spine and I am hoping one day they will find a cure for us. I pray that Dr.F. will continue helping people like us with this disease..because it is so very painful, unless you have it, you can't imagine the pain. Bless this Dr. and his staff...I Love them all.. If I have to have Tarlov or Meningeal cyst surgery again, I would hope that I can get to Dr.F. to perform it.”
Margo Z. , Lancaster, OH
- Sacral Laminectomy and Repair of 4 Tarlov Cysts
“My whole world, my entire existence changed in an instant. That instant occurred on June 20, 2009. I often state when I share my harrowing ordeal that I only wish that I could take those 30 seconds of pulling my daughterâs dresser back! Then I would not have had to endure the unrelenting discomfort of the Tarlov cysts or the arduous journey of getting the correct diagnosis and treatment. But there is silver lining... I would have never met such a wonderful group of individuals at Midwest Neurosurgery! Dr. Feigenbaum truly has given me my life back! I am by no means done with my healing and pain is still my constant companion, but it is diminishing with time and I will be healthy again!
I am 48 years old, a mother of three children, a wife of a teacher and high school track coach, and work 20 hours/week as a sports medicine physical therapist. I did not have time to be ill, let alone knocked out of daily life!
I was fortunate enough to be diagnosed correctly by my family doctor; he read my MRI, which besides the Tarlov Cysts, was clear. He was not familiar with the cysts, pulled up the information on WebMD and it was my life in print! My journey from the initial diagnosis to Kansas City was almost a year. I'm certain that many of your stories are the same... mis- diagnosis, humiliation that nothing is wrong and you will have to live with the pain, fighting with the medical insurance and long term disability companies that are not aware of the rare Tarlov cysts! Well, if you have made it to this site then you are on your way to recovery!
I believe that everything in life has a lesson, a reason, and I have tried to look for those lessons in this chapter of my life. First, I believe that as much medical information that you can obtain to assist you in diagnosing your condition is essential. I believe that you need to be your own patient advocate, especially in such a rare diagnosis as Tarlov cysts. Even with my medical background and the patient reassurance of Dr. Feigenbaum and the medical staff, I am amazed how very SLOW the recovery is. But for me, there was no alternative... I could not have lived in that debilitated state that I existed pre-op and I didnât want to live the rest of my life on pain pills and injections!
I can state unequivocally that Dr. Feigenbaum (and medical staff) has given me my life back! You are in expert, loving hands under his care. Dr. Feigenbaum was one of many physicians that I saw for consultation. He was the only one who had heard of and understood my plight. My best decision of my life was going to Kansas City for my care and treatment. And I received just that... magnificent care and life changing, healing treatment!”
Tarlov Cyst Patient from Virginia
- Tarlov Cyst Surgery
Dr. Feigenbaum operated on two symptomatic sacral Tarlov Cysts in January 2008.
From the first phone call to his practice through all stages of my recovery I was treated with compassion, professionalism and care. Dr. Feigenbaum is an extremely gifted surgeon who shows passion in everything he does. His surgical assistant Debbie West and his entire staff have something in common â human compassion and complete commitment to their patients. Thank you Dr. Feigenbaum and Debbie West for giving me my life back!
I was 41 with 3 school aged children. I had been regularly going to the gym for the past seven years and really felt like I was in the prime of my life. In 11/07 I experienced a lightening like shock go down my left leg. This set in motion a long series of MRIâs,
X-rays and other studies with at least a dozen doctors include several neurologists, my OBGYN, urologists, a neurosurgeon and orthopedic surgeon. On the very first MRI it was noted that I had an incidental bilateral sacral Tarlov Cysts. I was told by almost all of the Dr.âs that it could not be the problem because 99.5% of the time they are not symptomatic. My physical state of being continued to deteriorate rapidly and within one month I was having leg pain, a spastic bladder, extreme pressure in my abdomen and could not sit or stand for more than 10 minutes. We had ruled everything out yet still no one could give me an answer for what was causing the symptoms. By this time I was house and bed bound for most of the day.
I found the Tarlov Cyst Foundation. As I continued to read about Tarlov Cysts the excitement turned to fear because what I was reading was that there was no proven treatment for Tarlov Cysts. I went to list of Surgeons and upon doing other research decided to call Dr. Feigenbaum. I called and left a message for his Assistant, Debbie West. She promptly returned my call that day and spent close to an hour on the phone with me, I had finally found a medical professional who understood what I was saying and âspoke my languageâ. An immediate feeling of peace set in and I knew I was headed in the right direction.
I sent my films and some additional X-Rays as requested by Dr. Feigenbaum. I received a phone call late in the evening and he confirmed that I was a candidate for surgery and he explained in detail what the surgery entailed. He answered all of my questions in detail. I hung up the phone and thought to myself âthis IS the man who will perfect the surgery for Tarlov Cystsâ.
After many days of discussion with my family and talking on the phone with several of his other patients who had the surgery for Tarlov Cysts the decision was made and my surgery was scheduled.
I am now post-op over sixteen months. Although my recovery was long, it was not too long before I was back to being a full time mom to three very active girls. My life has been restored and I owe it to Dr. Feigenbaum and his wonderful staff. I will always be grateful for the care and compassion I was given at a time when I was in extreme physical pain and desperation. Thank you Debbie and Dr. Feigenbaum for your commitment to Tarlov Cyst Disease, you are exceptional medical professionals and very special human beings!”
Meningeal Cyst Patient from Chicago
- Meningeal Cyst Surgery
“I never had back problems or pain my entire life. Then, at age 51, I suddenly found myself with lower back pain. I went to my doctor to have a physical, and a CT scan found a large cyst in my sacrum.
With the help of the internet, I found Dr. Feigenbaum and his nurse Debbie West. They both discussed my condition with me on the phone after Dr. Feigenbaum received the results of my MRI. I had a giant sacral meningeal cyst which was over 5cm in size and had eroded my sacrum until it was eggshell thin. Although my pain was not severe and not disrupting my life, I decided to have Dr. Feigenbaum operate on me because I didnât want the cyst to grow anymore. I didnât want to find myself in severe pain in the future.
I had surgery on January 13, 2009. I was up walking the next afternoon and doing well. I only needed pain medication for about 3 weeks after surgery, and since then I have not had to take any pain medication. Now, 3 months after surgery, I feel great! I know my back is still healing, but I lead a very normal life and I am much more comfortable than before surgery. I am even back to riding my bike!
I am very confident that Dr. Feigenbaum is one of the best doctors in the US for this type of surgery. I am very grateful that he and his nurse Debbie have concentrated their work on these types of cysts in the sacrum, because without them I would have been fearful to have another, inexperienced doctor operate on me. They are great and I am looking forward to going back to an active future.”
L. C. from Blue Springs, Missouri
- Tarlov Cyst Surgery
“I am a 50 year old female and have worked out most of my life. A few years ago, I started to have pains in my left hip that would some times go down my leg. I kept thinking that I was pulling my sciatic nerve so I would lay off my work out a little and it seemed to subside some. Over time, laying off my workouts were NOT making it any better. I finally had an MRI a couple of years ago and that is when my primary Doctor said that I needed to see a specialist as I had what was called a Tarlov Cyst between S1 and S2. I was fortunate as there was a Tarlov Cyst specialist in our area so I made an appointment with Dr. Feigenbaum.
I met with his staff and they were very helpful and explained what this type of cyst was and what kind of damage it could do long-term. There were a couple of things I could try but surgery was the most likely option to take care of this on a permanent basis. I decided to NOT have surgery at this time and just see how things progressed. I had a kidney transplant many years before so was not anxious to have any other type of surgery if I felt it was âelectiveâ and I had NOT decided that it was necessary at this point. Over the next year or so I experienced, more pain, I could hardly bend to the ground without major discomfort, the pain and/or numb feeling in my hip and leg and now foot was getting worse, among some other issues. I had to stop doing any of my weight lifting on the lower body which was very sad for someone who again, had always worked out. I was able to continue to walk on the treadmill almost daily but that was about it. I had to have the incline on ZERO now, as I could not do any kind of hills, which also meant I could not do this outside anymore, unless I was at a track,...BORING!
I decided that I should probably go back to see Dr. Feigenbaum again and have another MRI to see if things had worsened. The results were that they had. I also already had some tailbone decay from where the cyst sat. It was about an inch in diameter but I was fortunate there was only one of them! Because of all the things that were worse now AND all the things that would likely happen down the road, I decided to go ahead with the surgery. I had surgery September 18, 2010.
RECOVERY,...I had my surgery in the afternoon and was ready for the next 24 hours to go by, so that I could get up and walk!!! The Doctor and nurses followed the protocol for sitting me up gradually and then allowing me to try to walk. Again,...I had prepared mentally for this moment and KNEW that even if it were painful, which I was told that it would likely be,...I could do it! My husband helped me with my IIPOD, the particular song I was to walk to was ready to go and away I went. I am not saying it wasnât somewhat painful that day and the next few weeks to come, but it was NOTHING like I thought it could be. I believe that my determination and the fact that I did follow âDoctors ordersâ regarding lifting nothing and no bending for the first month, helped to get me ready for the months ahead.
TODAY,...About a month ago (at 3 months post surgery), I began to run again. I even sent Debbie West a picture of my on the treadmill for proof!!! J I now am running for about 30 minutes, every other day. I have very little numbness in my hip, leg and/or foot. The other issues that I had, have subsided. My energy came back around 2 months post-op. I plan to run in a 5K and a 10K by the end of 2011. I plan to begin lifting weight again in a few more weeks as I was told not to do that yet. Life is looking SO much better! Without having this surgery, I would still be in pain and my life would be limited. I was to a point, where that was not an option.
The only real thing I continue to have a problem with is sitting. It hurts to put pressure on my backside, where the surgery was performed. It is about a â5â on a scale from 1-10. I am anticipating that over time that will gradually get better but even if it did not, I am in WAY better shape than I was before so I do not regret for one second, my decision to have the surgery.
Dr. Feigenbaum and his staff have been wonderful. I would highly recommend their services to any patient that is suffering from Tarlov Cyst disease to at least go and talk with them. They will let you know your options and then you decide how you want to feel for the rest of your life. I am thankful and blessed!”
- 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 met with Dr. Feigenbaum and Debbie the day before surgery. I was really nervous but I want 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 a previous surgery. Debbie and Dr. Feigenbaum arrive at my waiting point 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. That first night was very difficult but fortunately by the 3rd day I was walking around the hallways.
I met 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 - which are critical to healing properly. As it turns my stay in Kansas was cut short due to a massive blizzard that was approaching Maryland. The state received 50 inches in a week due to several storms.
Over time (the last 9 months), 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 MRIs over these months 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.”
J Krueger from Michigan
- Tarlov Cyst Surgery
“The difference between pre-op and post-op Tarlov symptoms is the difference between night and day. Through the years , after many consultations with different Dr's , phys. therapy, drugs, chiropractors, no one could tell me what was wrong with my back. Out of desperation and the help of my daughter, I turned to the Internet, plugged in my symptoms on webmd.com and came up with Tarlov cyst disease and the foundation. Through researching the disease, I found Dr. Feigenbaum's address at Midwest Neurosurgery Associates.
I sent in my Lumbar MRI as well as a number of tests my primary Dr. had performed in June, 2009. When I received Dr F's call , he requested a MRI of the sacrum and flex/ extension x-ray of L4 and L5. I received another call from him in October and was told I definitely had 2 problems areas in my back. To either rule out one or the other, I had to have a nerve root block on L4 and L5. When that was done , since I still had pain and numbness, Dr. F told my husband and I that I did indeed have 3 cysts in the sacrum and spondylolesthesis of L4 and L5. Both surgeries were scheduled for Jan 28, 2010.
I am now 1 year post-op. I no longer need a pillow to sit on and yes I can comfortably set on a wood chair!!
Before surgery, standing wasn't possible, now I can stand a good hour before I need to change positions. Walking now is a simple procedure, no more holding my breath when I take a step.
No one realizes the pressure and pain that these cysts cause until they are fixed. They grow slowly and you are ecstatic when they have eroded enough bone to comfortably fit in an area. At that time, you have a reprieve of pain.
The thought of surgery was scary but the knowledge that the cysts would continue to grow and damage the nerves overrode that thought.
Dr. Feigenbaum, Debbie and his staff are the best. You won't find a more passionate, highly skilled doctor as Dr F. They are dedicated to helping Tarlov patients. My hope and prayer is that soon this disease will be recognized for what it is- a debilitating disease if left unchecked.
If you are contemplating surgery, don't hesitate. These cysts will not go away on their own. It is up to you to ask questions and to have the strength, courage and determination to get the answers you need to have a full, productive life.
Wishing you better and brighter days ahead.”
Eric Iverson, VP Technology - Sony Pictures
- Tarlov Cyst Surgery
“I wanted to write about the tremendous care I received from Midwest Neurosurgery in treatment for my Tarlov cyst.
Before October 2009, I lived with a large Tarlov Cyst for over 20 years. The cyst had grown in size to 3.5cm and I had been experiencing very severe symptoms including severe pain and frequent violent headaches that had on multiple occasions resulted in inpatient stays. It took over 30 doctors to finally diagnosis my cyst correctly, which finally happened in September 2009. Once diagnosed, I was left with very little encouraging next steps and no one seemed to have any real experience treating symptomatic Tarlov cysts (and I live in Los Angeles).
The beginning of "getting my life back" started in November 2009 when Dr. Feigenbaum called after reviewing my films. Finally, I was able to speak with an expert that could describe my cyst exactly and could plainly identify with me the symptoms I was experiencing. I immediately moved forward with scheduling surgery.
I had surgery with Dr. Feigenbaum in February of 2010.
That surgery changed my life.
Almost 1 year later, I have not had a single headache of any kind since surgery. My overall condition continues to improve even today. Prior to surgery I was missing weeks of work because of the cyst. Last year, I had no missed sick days since my initial recovery from surgery.
I can also tell you that the entire Midwest Neurosurgery staff is excellent. Dr. Feigenbaum is of course "the MAN" when it comes to this surgery and he is friendly and kind to boot. Debbie West is a very caring nurse that makes the perfect teammate for Dr. Feigenbaum. She continues to go out of her way to provide outstanding patient care long after the surgery is over. The office staff is helpful as well. The surgery experience overall also exceeded my expectations at Heartland Surgical Specialty where I had my surgery. From speaking with other patients I understand that the care at Research Medical is also excellent.
I am eternally grateful for Dr. Feigenbaum and Debbie and what they did for me. The world could use more medical professional like them.
- Eric Iverson, VP Technology - Sony Pictures”