perineural cyst

I have a Perieural cyst as well at the t-1 level and DDD and a buldging disk at the c-7 at the cervical spine this pain at the neck just started about a year ago...My pain was so bad that I thought I was dying of cancer or somthing :( the back of my neck burned as well as the back of my head and bad headaches...I also have sharp pains from my shoulder to my elobw..and from my elbow to my shoulder...I had 4 cortisone shots to my elobw cuz i could not bend it 4yrs ago and now im in cronic pain...my specialist told me that my cyst is nothing and that its not the reason i have pain in my neck...confused :( could you please give me the number for that dr in the states

Did OHIP pay for the procedure to be done? I am in Ontario and looking at this right now.

Unfortunately you hit the nail right on the head. I say if you don't want to hear the answer to a question don't ask! I had them in my entire spine for nearly twenty years. Every disk is affected. I have two bulging discs and 5overlapping whatever that means. I can't take anything but codiene because I have severe allergies to any kind of man made or formulated drug. I have found it nearly Impossible to find help. They are so bad about dispensing narcotics especially to women. I have a full blown panic attack at the mere thought of the excruciating pain returning. I have often thought of suicide as a way out . Most doctors are ignorant when it comes to real health issues . They have become accustomed to their assembly line get them in and out method of practicing medicine that they actually will let you suffer rather than taking one second to look it up online. I want to be told the truth, and I have done much research on the subject and the fact is without anything for pain I made it one week before my heart gave out! These cysts can paralyze you. Cause you to loose control of your bladder and bowels and can even cause seizures. I am 100% disabled solely because of the mind f***ING pain. I even have a plan. There's no way I can tolerate the pain. If her mother has just one or two of them she is probably in a lot of pain. Most of them occur in women and in the Lumbar area of the spine. I'm one of the unlucky people who has been through a literal 20year nightmare . There is no way to describe the level of pain that I endure on a daily basis and that's with medication. You couldn't fathom - most people will go to the doctor and I hear them tell the nurse that their pain is a level ten. They come back and sit down and play with their children laugh and eat. There's no way. That I could manage anything more than rocking back and forth humming. And they will believe those people over me every time because they don't know what a perinueral cysr is and can't understand how it could hurt that bad. The doctors really need to wake up. Antidepressants don't cure everything. Yeah they might get a free cruise or a big bonus for pushing them on us. But get real@!!!! My existence has been a living HELL.. I for one appreciate your candor and pray that some doctor some where will understand and at least give me something to ease the pain until they can help me. I was lucky enough to find a good doctor. But Im a dissabled vet and the VA refuses ti help me. Mostly due to the fact those doctors are conditioned to believe that women exaggerate their pain levels.. let someone stick a crow bar in every disc in their back and pry them apart all at one time and see if they won't take a handful of pain pills. The pain rating chart is a joke! Take care of your mother and help her out and tell her you love her every day. You be surprised how much that helps.

I was directing this to bellomo. This has been a nightmare. No one has to sugar coat it for me after hundreds of panic attacks , two heart attacks, abuse from numerous medical professionals ( that's an oxymoron if I ever heart one ) I've given up fighting them. If I can't get help ill get a burial plot instead .

Did you ever get to see Dr. Feigenbaum? And if so was he able to help you?

You should check with a neuiologist and a GOOD Nutritionist have them check you for any vitamin deficiencies. Just by keeping potassium levels up can help with your ability to weather the pain. Also asparagus and bananas are a good source of potassium. Omega 3, CLA, VITAMIN E, and co- Q 10 are very helpful. And LOTS of water. I managed for 16 years without anything for the pain because if ignorant doctors. They used to tell me I low pain tolerance level. Until I fell and dislocated every joint in my thumb and first two fingers on my left hand. I git tired of sitting in the emergency room so I grabbed my fingers one at a time and set them myself without even blinking an eye. The receptionist got sick. I told them if there was a bill to stick it up their Ass. They don't have specialist for tarlov disease. You need a neuiologist. A GOOD one. Most of them are ignorant to. They do just the minimal amount of work needed to get their credentials and they don't have time to look up information because they have packed their schedules so full trying to make money. So they guess, until they get it right. I had ti diagnose myself and throw an infantile fit to get the tests I wanted done. They no longer tell me I have a low tolerance for pain, and when I'm in so much pain that I can't stop throwing up. Hide the guns or knock my butt out! The only reason I haven't lost the use of my legs and bladder (I've had heart problems because of it) is the exercise and maintaining good physical and mental health with meditation, weight lifting, and vitamin supplements. And now unfortunately daily doses of vicodin and oxazapam really helps with the pain.

I have them all over my spine from a severe injury in the service. I would really appreciate it if you could point me to some one who wouldn't just tell me it was in my head. These couldn't hurt...( they're on the nerve root in your central nervous system leading directly to your brain for God's sake! I had one Dr, tell me I was crazy and needed a psychiatrist, one said she didn't know what they were and didn't care to try and find out, the other suggested that everything you read on sites like this one is garbage and untrue. They don't have to deal with the Mind F**cking Pain every day! I have thought about suicide so many times. They ask you if you have any suicidal thoughts... are they crazy or what! If I did, I certainly wouldn't tell them. They refuse to help me. I'm not crazy. I've tried before to get help that way thinking that maybe I was loosing my mind... they didn't really hurt this bad. They are all a bunch of camels who are going to be trying to jump through the eye of that needle the Bible tells us about. I have two in some disks, 3 collapsed disked from service injury and 32 bulging disks now. And Moderate size - one to two cysts in all but 2 of my penises in my spine.. I'm loosing my feeling in my legs, bladder control, and unbelievable pain. I have always had a very high pain tolerance,. They just don't want to fool with you so they call you crazy. Plus I now have heart disease from all the meds I let them make a guinea pig out of me. And Fybro. It's a neurological disease also. Some id**t Dr's need to read up on recent medical findings. Stop punishing us just to get a paycheck. That's all we are to them. I'm pretty much just waiting to dye. They have my family convinced I'm a drug addict and most of the time I can't even get anything for the pain. Before I found a doctor to give me something to ease it.... a little.. I had planned on slitting my wrists the pain was so unbearable. The doctor at the hospital sent me into Rehab with a clean drug screen. I couldn't take it anymore, I disparately need help. If you get this send me a message please,,,, I'm desperate!!

Bellomo is prettu accurate. mines a large obe in my lumbar at l2*l3. Headaches are monstrous and have no insurance. every day i want to off myself. im only 26 and this occured after a spinal tap & blood patch done in march 2013. My head hurts my kidneys bladder back spine oh and did i say my head?! Soooo bad. i cry pls letvthe pain go away. im now on my menstrual for the third time this month and i can only imagine its from the cyst. i feel like i am dying slowly.

You all are wrong. Bellomo is actually very correct. A patient at my practice and former friend of mine has ONE in her brain stem. She currently cannot work due to the pain, has lost almost all vision, has lost functions of multiple limbs. What you all forget is every case is different. You all treat these like they are nothing, yet you can and people regularly do die from them. It can cause hydrosis of the brain and multiple other issues, where death is not uncommon!!!!!!!!!!!!

I was diagnosed with 4 Tarlov cysts, after many many years of miss diagnosis.  They were in my sacral area, or above my tailbone.  The pain is excruciating to say the least and this pain is 24/7.  Whether you are sitting, standing, or walking.  Sitting expecially is difficult.  I went to Dr. Feigenbaum in Dallas Texas, and as far as I am concerned he is the best.  He has done research to show his technique works, and has done over 700 surgeries.  I am so much better after surgery, and they say the recovery will continue for the next couple of years as the nerves heal. I am 10 months post surgery.  I literally have a 2nd life.  There is a Tarlov Cyst Foundation site that is very helpful.

I have two of these perineural cyst at s 1 & s 2  tail bone area in constant pain somedays can barely walk even with cain its like my hips lock up and pain aweful in both side of buttucks  pain mostly down left leg  I also have scar tissue from past surgery encasing L4&L5 nerve roots numerouse slipped disc surey four years ago failed these results from MRi a month ago after my surgery my surgeon told me surgery a sucssess my spine fused  then treated me like a leaper and referred me to a nerve Dr. who didnt understand why iwas referred to him he was not a surgeon.I was pretty much shunned from the dr who did my surgery like i was bad publisity to even be in his office he runs lots of tv comercials with patients with succssess stories patients riding horses 4 wheelers ect the one with the man riding the horse makes me so mad i wanna thow my boot at my tv i will never beable to ride my horse again something me and my family did most every weekend i started ridingthe only dr i can find takes medicaid card at age 6 yrs my children now grown were riding horses independently at age 4 &5 they love riding also so wanted to teach my three grandchildren to ride first grandson born this week june 24th i have two granddaughters i cant pick up or hold they sit beside me they try not to bump my legs I'll never get to be a real grandma i hurt so bad had to cancel attending daughters baby shower i'm pretty much a shut in and none of my three children now live in same county i see them maybe once a month i cant sit in position to drive longer than 10 to 15 min I feel useless how fast do these cyst grow will i endup in a wheel chair the only dr who will see me is my family md all he can do is give me pain meds but theylimit type of pain meds that only take the edge off often hurt so bad cry and scream into pillow so not to disturb the nieghbors I have no insurance besides medicaid not been able to work sence 2011 i had worked there 13 yrs non profit agency assisting battered women and chidren loved my job felt like i was doing good with my life contributing to society now feel like a parasite I live in public housing always in fear of eviction cause of housekeeping there is days i can go and barely walk to bathroom and back forget even nooking something in microwave often vomiting pain level so high i went from normal weight of 117lbs to 98 lbs not by choice also lost so much muscle tone which makes me hate looking at my own body  i used to excersize religeiously 3 times aweek plus riding horses on weekends now look like im 65 instead of 54yrs this dr.f from texas kansas and nevada he has offices in these states that i know of but unless you have good insurance he wont see from what ive readhe is the only dr, who will attemp to operate on tarlov cyst so you are left to suffer unless your rich or have good insurance  if we were a dog a cat or horse and let an animal suffer half the pain we suffer we would go to jail honestly i pray to lie down and die even thoughI love my children and grandchildren my children are all doing well in there lives very proud of them i feel like Ive done my job a good job raising them to survivers good morals good hearts they are productive members of society I do fear the day will come when pain will be too much and pray god will forgive me.does anyone know of any organizations that pay for rare condions I would even at this point volunteer for a body for traing for other dr, to operate on these cyst to hopefully get my life back

I am a patient of Dr. Feigenbaum's. I had 6 cysts from S1-4. I'm 16 months post-op and improving daily. I'm crying lying here reading your story. Dr. Feigenbaum only has offices is Kansas and Texas. He doesn't have an office in Nevada. He is a very compassionate, carrying man. I don't know what to tell you other than I am praying for you. Do you have Facebook? There are a few very good support groups on there. I manage one simply called "Tarlov Cyst Disease". We would be glad to have you join us. There are over 600 members in this group that are very knowledgeable and resourceful. Maybe someome can help you out. Best of luck and many prayers!

I was recently diagnosed with two perineural cysts (along with other issues) in the C-7 -T-1 and T-1-T-2 region. My symptoms were pins and needles sensation, sometimes all over my body, other times down both arms, back, rib cage area. Currently taking Lyrica and pain pills to manage the symptoms. I've not suffered any injuries that I know of although I have suffered the pins and needles down my left arm for years. As far as I know, (from a lot of internet research, and we know what we can find on the net) there is no surgery available. Thank You for the info Cig50..

Hi I know this was written a year ago but wondered if you had the surgery and how it went Nikki

Hi, I have been recently told that I have Tarlov cyst, I like you have been researching this when I stumbled on your reply..My MRI showed I have a 2.5 cm tarlov cyst on my left S1-S2 & multiple smaller ones at my S3-S4... Ive been in pain in my lower back for wks now & have been sleeping in a recliner bc I can not lie flat down.. I have headaches everyday & sometimes so severe it requires going to the hospital, they have been ongoing for 5 yrs now with no explanation as to why or the cause , no headaches before that time, the first time lasted for 2 months & I was in constant agonizing pain... I feel I finally have answers to why I have headaches everyday & why at times they are very painful... I wanted to ask if you had the surgery & if so how you are doing? Thanks!