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 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”
M. P. from New Mexico
- Tarlov Cyst Surgery
“I am a very athletic 48yr old woman who experienced over a year of what I and other doctors thought initially was a piriformis strain, then facet problems. I failed changing up my exercise routine, Physical Therapy, Myofascial Therapy, Acupuncture etc...I am a Nurse Practitioner of many years and demanded a MRI of the lumbar sacral area as my health was declining. The radiologist read the MRI as facet syndrome with multiple Tarlov Cysts as insignificant. I got a copy of the films and was amazed by the size of the cysts so I asked for a measurement of the cysts so I could start the consultation process. I was dismissed by the radiologist who stated "that is not where your pain is coming from" but agreed to measure them as I asked him if he had examined me and if he was my doctor.
Many doctors, even those in the medical field of 30 plus years had never even heard of these cysts. I found the Tarlov Foundation website, read the symptoms and that was my case. I had almost every symptom that is listed on the Tarlov website. I then went to the Spine Center and was barely examined and whisked into a room for a facet injection which made my symptoms worse. I could not work for 2 days. It was then I contacted Reta Heirs from the Tarlov Foundation and was sent info on Tarlov Cysts and the doctors who treated them. I consulted with Neurosurgeons in New Mexico who said they would never treat them. Once again, the longer I waited the more the pain intensified, I was working part-time, treated patients standing up, limping, and would immediately lay down on my side when I got home. I could no longer walk my dog, go to movies, go out to eat, and had to start meds with many side effects. I consulted with 2 other Neurosurgeons in the U.S. and finally found Dr. Feigenbaum who read my cd and did 2 phone consults. I had to go through another nerve block which lead to even more pain, get prior authorization for the surgery and was denied and told it was experimental by my insurance company. I am lucky to have a medical background so I persevered which was very stressful when in pain but got it approved.
I am 1yr. post-op and 75% better, I can walk and my sciatic pain only flares if I overdo it. The recovery process is slow and I am unable to work currently but plan on going back in the spring part-time. I am weaning down on meds, receiving massage and working on stretching gently. I have some post laminectomy pain that comes and goes which is the biggest reason I'm not working. Even though the recovery was extremely difficult and painful physically and emotionally I DO NOT REGRET HAVING THE SURGERY. I am glad I was diagnosed relatively quickly, as others have taken years and are much worse off from nerve damage and I feel for them. I am glad Debbie and Dr. Feigenbaum are on the cutting edge of this type of surgery or I believe I would be permanently disabled down the road if not for the surgery and knowlege of these people. I am grateful and take it one day at a time.”
Tarlov Cyst Surgical Patient
- Tarlov Cyst Surgery
“I am nine months out from surgery and feel I have improved at least 85% so far. Before surgery, my life was - medications, pain and inactivity. Now I am pain-free most days. I only take ibuprofin occasionally when I overdue certain activities.
I can't stress enough, how important it is to have a top-notch surgeon like Dr. Feigenbaum performing such a delicate surgery. I have nothing but positive things to say about him and his staff. I will always be greatful!!”
Eva from Germany
- Tarlov Cyst Surgery
“Through the years I had a lot of consultations with different doctors and different therapies. To name but a few: physiotherapies, psychologists, neurologists, neurosurgeons, pain management, steroid injections and even 2 spine surgeries (done in Germany). I had a lot of symptoms. Either the doctors didn`t know what was wrong with my back and could not explain why I was having such a pain and also dysfunctions or they told me that everything looked fine on the MRI. After the 2 surgeries that were made here in Germany my symptoms worsened. At that point I was told that there was nothing on the MRI that explains my medical condition. There were 3 cysts, but these cysts do not cause any symptoms. I was advised to do pain management, because that would be the only thing that could be done for that moment. I had a lot of self doubts, I was insecure, because I was told there wouldn`t be anything that causes my symptoms. It is probably not necessary to tell, how depressed I felt. I didn`t wanted to take pain killers for the rest of my life (I am 22 years old) and I never was out of pain. I always had pain in my legs, back and buttocks. And it persisted, the only relief was to lie down. Of course this affected my whole social life and daily activities extremely. Every day was tiring and I kept staying at home most of the time. My home became my gilded cage because the pain forced me to stay at home. At that point I lost all my hope, confidence and my enjoyment of life.
I decided to do some research on the internet because I wanted to know if these Tarlov cysts could make symptoms. I read a lot of articles with interest. And somehow I got to the www.tarlovcystfoundation.org homepage. On this homepage I got to know a lot more about this disease and also found doctors who are able to treat them with success. This is how I found Dr. Feigenbaum`s address at the Midwest Neurosurgery associates. I decided first to write an e-mail and wanted to make contact with somebody who was able to give me information. Soon I became an answer from Debbie West. And in this first e-mail from her she was able to encourage me and brought back some hope. With her help I sent in the MRI on CD and some medical reports. A few weeks later I had my first phone call with Dr. Feigenbaum. I still can remember that moment as it just had been yesterday. The first time during my disease I felt to be understood. He asked me exact the questions that matched to my symptoms. When he told me I was a surgery candidate I felt nothing but happiness.
To everyone I talked to, at the Midwest Neurosurgery Associates, was very friendly and helpful. Especially Debbie West and Laura Abshire, they are wonderful ladies. Without them I wouldn`t have had the courage to do a surgery in another country. They helped me with every form my insurance requested and even to find a neat hotel. When I had my first appointment at Dr. Fs office I was very excited. This is such a friendly, passionate and highly skilled team, you recognize that in the first minutes, of how they deal with you and it really encouraged me because I found someone who believed me.
Surgery went well and also in the following hours I already felt better than before. In comparison to the surgeries I had before, I felt best and also best taken care of. The nurses were so kind and also made me smile. The whole atmosphere was encouraging. I am now feeling better than before and in my opinion it was worth it! This is also due to the mere fact that Dr. Feigenbaum and his high qualified staff brought back hope to me and gave back my enjoyment of life.
When you`re a Tarlov cyst patient don`t be afraid making contact with Dr. Feigenbaum`s team. You`ll receive the best medical specialist care and also you will be treated manlike. All in all Dr. Feigenbaum gave a lot more to me than just improve my symptoms. He helped me to get a social life again and the ability to look in the future and be fulfilled with delight.
Wishing you a lot of health and courage to defeat your disease.
L. S. from Wyoming
- Tarlov Cyst Surgery
“I am a very active female, 48 years old, a registered nurse from Wyoming that works part time in a fast paced surgical center and does parttime ultrasounds for a pregnancy resource center. Riding horses is my passion and I was bucked off a mustang in 2008 and broke my left clavicle. I healed quickly from that, but continued to have some pain in my left shoulder and back area, very achy and chronic. Also have been having urinary issues that no one can find the root cause to~ had vag hysterectomy and cystocele, rectocele repair and gall bladder removed in between these years. In the fall of 2009 I was bucked off again on my back and continued to have neck and back pain. In January 2010 went in for cervical MRI and found that I had a couple of perineural cysts on my spine. After major research on my own, I went in for a nerve block on the biggest symptomatic cyst in T-1 T-2 per Dr Feigenbaum's advice. The block really helped! The radioloigist that did the block wanted to aspirate the cyst, but I knew from previous research that was not a good idea.The cyst would just refill with spinal fluid and grow bigger!
I went in for surgery on November 2, 2010 and Dr Feigenbaum actually found 2 cysts together in T-1 and T-2 and and that they were pressing on nerves, he banded one and fixed the other one and spent a week and a half in Kansas City, Mo. Spent one night in Research Medical Center which was very nice and all the people who cared for me were outstanding. Not knowing anyone in KC and being in the medical profession, I felt like I was in very good hands. I was really scared up until the moment they took me back to surgery knowing that my pain could possibly be worse or better. Knowing that I love my active lifestyle and want to maintain it and live a long healthy life, I opted to take the chance with the surgery.
I did have quite a bit of pain after surgery in my neck and back, but walked around the mall on my 3rd day post op and continued walking every day. My left lower arm on the backside is numb and hopefully that will come back as my nerves heal and growth is slow. A hard thing with my surgery was is that I cannot take narcotics for pain because of nausea and vomiting, so basically I was on Tylenol and Toradol in the hospital and Tylenol and Ibuprofen after discharge. My pain was bearable and livable. My recovery was a little rough, but thankful it was over and the healing was beginning. I experienced severe nerve pain in my neck and upper back the 3rd week post op and required being on some amitryptyline. I went back to work my 4th week post-op and continued walking up to 4 1/2 miles a day. Since then I have been increasing my activity to lifting weights, cycling class at the YMCA, cross country skiing and pickle ball strengthening the muscles around my surgical site. Having little or no pain in that back or neck area at this time to just an occassional twinge of nerve pain in my neck. I am very pleased with the results of this surgery! Thank you for all your good care!”
Rose from Ontario, Canada
- Tarlov Cyst Surgery
A like many others, I will always be forever grateful to Dr. Frank Feigenbaum for his commitment and outstanding medical expertise with the rare disorder of Symptomatic Tarlov Cysts. I like to take this time to recognize and honor Dr. Frank and his team at the Tarlov Cyst Institute, Debbie West, Teresa Lanker and Laura Abshire. You are all exceptional, highly efficient and most of all compassionate individuals that have touch my heart.
I am a 50 year old women from Toronto, Canada whom was subjected to both the physical and emotional pain and suffering throughout the relentless struggle of outsourcing an accurate diagnoses and treatment for my Tarlov Cysts.
In 2006, imaging of my spine reported I had incidental bilateral sacral Tarlov Cyst of no significance. Over the course of four years, I was referred to and/or saw several doctors. Orthopedic Surgeons, Rheumatologists, Hematologists, Pain Specialists, Neurologists, and Neurosurgeons. I had difficulty finding a recognized Specialist in Tarlov Cysts and their treatments with enough expertise to offer me surgery. I had undergone countless CT Scans, MRIâs, Nuclear Bone Scans, X Rays, Blood Work, CT Myelogram and two Blood Patches as a result of complications of my CT Myelogram. I endured massage therapy, physiotherapy and a numerous of different medications to potent narcotics all of which did not relieve my relentless, agonizing pain.
Over the course of these four years, house and bed bound most of the time, all doctors kept telling me my TCâs were not the source of my pain and dysfunctions. Internet options at that time were very limited, yet slightly growing over the years. I had the privilege of corresponding with Reta Honey Hiers, President of the Tarlov Cysts Foundation whom notified me of Dr. Frank and the Tarlov Cyst Institute. Dr. Frankâs unique qualities and expertise make him The Best and therefore I sent him all my background information and radiology images for his review. Dr. Frank personally called me to speak of my Tarlov Cysts and offered me surgery. We spoke for almost 40 minutes and I was convinced that I was in good hands. I trusted Dr. Frank.
Through my perseverance, I applied to the Ontario Health Insurance Plan known as OHIP for a prior approval for an Out of Country Health Services claim to see Dr. Frank and have the surgery he offered me. I was denied twice and had to fight a yearâs battle with the Ontario Government through the Appeal Process. I was very fortunate to have Dr. Feigenbaum and his team help me through this fight. He supported me in my struggle to receive the best possible treatment for my Tarlov Cysts. Dr. Frankâs guidance, kind words, contributed letters for evidence and his personal conference call as a Witness into my 4 day Appeal Hearing was tremendously supportive and strengthened my case.
While in the hospital, shortly after my surgery, I received notification that I had won my Appeal and was granted Health Care Coverage for my surgery with Dr. Frank. Thank you Dr. Frank, I couldnât have done it without you. Together we have set precedence, for I was the first patient from Ontario, Canada who has been granted health coverage for Tarlov Cysts. Together we have paved the way for future TC patients seeking treatment.
On November 4, 2010, I had my surgery with Dr. Frank and throughout my 10 day stay in the hospital I was visited by Dr. Frank, Debbie West and Teresa Lanker on several occasions; I do believe it was every day. My extended stay was not due to any surgery complications but more so to stabilize my personal pain medication reactions. Everyone was always caring to my needs and were forever respectful. I have never had such an extraordinary team take care of me. Thank you for truly making my experience at the Research Medical Centre better than I had ever anticipated and I highly recommend Dr. Feigenbaum and his team to all Tarlov Cyst Patients. Dr. Frank is truly exceptional and unique for the surgery he offers is a scarce commodity. He displays a commitment to excellence for all Tarlov Cyst Patients.
Presently, I am 2 and one half months post op, and with a positive attitude believe Iâm doing just fine. Iâve learned to be more cautious bending, lifting things and of course sitting to long. Iâm finding that the key is to find the BALANCE and know when to stop, not to over do it, or I will pay for it later kind of thing. I believe each day that passes I am getting better and do see and feel a difference. I have lowered my pain medications and will continue to do so as time proves they are no longer needed. Presently, Iâm still at a dose that is quite higher than pre op but thatâs okay, I just had major surgery on my NERVES. It is to be expected sometimes, this is not normal spine surgery.
In closing, I am so very fortunate and will be forever grateful to have had the opportunity to meet Dr. Frank and his team and will not hesitate to revisit him again for surgery on my other Tarlov Cysts throughout my spine if deemed necessary.”
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!”