perineural cyst sacrum

Susan 1-6-13 AM

I too have Tarlov Disease. It took me 3 yrs. to finally figure out what the problem was. All my western doctors said we don't know what the cause is, you will have to live with chronic pain. I was so disappointed that I found out I had the cysts when I requested a copy of my MRI, my doctor didn't bother to mention to me the MRI diagnosed the cysts.

I have seeked out alternative medicine and they also know very little about the cysts. However I am seeing an acupunturist who can get my pain level to about a 1-2, but it does't last. For no reason the cyst flare up and I am back in pain again. My massage thereapist can calm the cysts down with his energy work but it doesn't last. I finally get to the point that I can't take the pain any longer and revert to taking percacet. I was able to be without much pain this last go around for a month. I also do rife machine treatments and do not know if the combination of the rife machine and the acupuncturist are what helps. I do know that I could only walk 3 ft. 3 yrs ago and am much more moble now. I also know that the chronic needle pain I experienced has disappeared. However the pain I now experience is more of a burning pain. Alternative medicine is very willing to help if you get the right provider.

I frequently ice the area of pain to help me get through pain relief without drugs.

I am still learning about this disease and if anyone has answers to these questions I would appreciate it. Will walking, hiking make them worse that I will be eventually disabled? Will the cyst in fact eventually eat away at the bone? Does scar tissue around the cysts play a part in the pain? I find that the cyst affect my periformace muscle along with the hip so I do daily stretches that help, is this detremental to the cysts?

I just got the MRI back today, but a lifetime of pain now makes some sense. In 2007 I was just about to the point of suicide from repeated flares. I found other routes to treat and recover from the pain, including Tai Chi. Last spring I developed an interrupted urine stream that was becoming significant. I finally reached Medicare age and was able to see a specialist, and this developed into the MRI. The interrupted urine stream backed off significantly during the summer, corresponding with the start of a GAPS diet to heal digestive & immune system imbalance - but it would have also greatly increased my intake of L-Lysine, which is the complementary medicine treatment of choice for Tarlovs. Per other internet feeds, it works for some, not for others - but worth checking into! 1-2 grams a day

I also have sacral Taylor cysts. They are 3 cm.  found them with an MRI for kidney stones.  They are now giving me trouble. Been out of work for 3 weeksJust hurts to sit down. Have constant pain 24/7.  Are there any new things that can be done that are noninvasive?  The MRI was done in 2011.

Yesterday I was diagnosed with "cervical perinueral cysts" 

Is that anything like your Tarlov's cysts? 

 

Each time I search it keeps on bringing up the Tarlov's..... So that's why I wondered. And I know the first place to seek out is a support forum, they usually have more information then anywhere else ;-) I know that's how it is for my support groups for my Interstitial Cystitis anyway 

hope you all are having a good day ;-)

i am 46 i have had 2 spinal fusions and a discectomy. the lastest MRI shows i have several perineural cysts at the intervertebral foramen of C6/7 and C7/T1. My Neurosurgeon says there nothing urgent at the moment. BUT that doesnt help with the pain. I have weakness in my left arm, (after my injury 16yrs ago its always been my left side that has been affected and weak) but now im finding the pain is spreading to my right side as well. I also have had to change life syle over the years but find the simplest things are sometimes becoming a chore. I am currently on Lyrica. I noticed this post was a while ago. So how is your pain now a year later. Are you still using the Decadron.

I have had a tarlov cyst found as well. Im 32 a mom amd unable to sit or stand for more than 20 minutes. I can barely wqlk my legs are numb and give out and the spihe center that I had visited never got back to me. I cannot lay on back to sleep. I don't sleep much and its going to cause my marraige to fail. I have had consipation issues sice this back pain started as well. This is madding and depressing. At times my back locks up and even blurry vision arms also go numb at times. Beento er several times once was told the back issue wouldn't cause arms numb. I had to beg for treatment. I basically lay on the floor. I cannot even do pt. Chiropractic care works sometimes bio free tger balm and lidoderm pathes which most insurances don't like to cover work well. Good luck.

Wow, thank you all for sharing your comments.  I have a Tarlov cyst at S1 and have been in pain for a little over a year.  So many doctors and so many shaking heads and shrugging shoulders.  Most of them said, "You have a clean MRI, there is nothing we can do."  My clean MRI showed a Tarlov cyst at S1, but everyone thinks they are not a problem.  I finally found a doctor who says he is sure it is the cyst causing my pain, but he does not know what to do about it.  Glue doesn't work well.  Surgery doesn't work well.  It's just too rare and too little is known about it.  I want someone to design a tight sleeve or girdle to fit around the spinal cord and squeeze the cyst.  Of course, getting just the right tightness will be critical.  I am managing my pain by living half of my former life.  I avoid driving and sitting as much as possible.  I have a standing computer desk.  When I drive, I get out every 20 minutes and go for a walk.  I have a bed in the back of my van that I use regularly including on meeting breaks.  I go out to the parking lot and lay down for 15 minutes to relieve the pain somewhat and then head back into the meeting.  When I don't lay down enough, the pain is debilitating.  I ice my back often.  I wear lose clothing in the area near the cyst.  I never sit when I can stand.  I never stand when I can lay down.  It's an odd way to live and the pain gets me depressed at times.  But for now, I'm just not sure there is a better option out there.  I am on Dr. Feigenbaum's wait list for a phone consultation.  I expect a call in December.  I've been waiting since June.  But, it's free.  Everyone please post any updates or news you get when you get it.  I will too.  Alisha

I too went 3 years with doctors telling me that tarlov cyst weren't symtomatic. After taking all kinds of medicines and doctors wanting to send me to a psychiatrist to help with the pain, then being fired from my job because I could no longer walk without walls or upright and if I sat in a chair I could not tolerate it long but if I got up from it or driving, I would literally have to physically move my legs to get them going. I am so grateful for Dr. Feingenbaum who did my surgery which I had to do all the contacting etc. I had a doctor who sent me everywhere even tried to get me into Mayo but they would not take me. But all specialists refused to believe it was the tarlov cysts causing it. I can only tell you don't wait, get something done immediately because 3 years has caused me to have permanent nerve damage but I am not a vegetable which I soon would have been if it would have gone on any longer.

I have a lot of your symptoms including the blurry vision which they say is not related but I think it is. I have found that icing the area where the cysts are helps a lot. Also, lying down on my side and making sure I am exactly horizontal using pillows as necessary helps after about a half hour. I can now lay on my back and that helps me. You might try different pillow combinations. Sometimes I have to lay on my back with no pillow for it to work. I have a sleep number bed which helps, I think. I sit on ice when I have to be in the car. I stop every 20 minutes and walk very slowly for five minutes. I also have a makeshift bed in the back of my van. I can lie on my side while we travel for up to an hour. Then I have to get out and walk slowly for 10 minutes or more. Then, I sit on the ice for the next half hour. I encourage you to keep working with pillow positions and icing. It has helped me immensely. Even an inch difference in my hips or neck or low back can make a significant difference in the pain. Of course, it takes a good half hour of trying a position before I know if it is really working. I feel for you! Hang in there! I'm on Dr. Feigenbaum's wait list but I don't hold out a lot of hope. The surgery sounds only marginally successful.

I'm happy to hear a good report on Dr. Feigenbaum. I'm on his wait list now. How is your pain level now? How far post surgery are you? Thanks so much for your advice. This condition is so confusing and there is so little information. My doctors have just stopped returning my calls and they push my appointments indefinitely. I sometimes think I'm going crazy.

I applaud your attitude towards the information doctors seem to have on sacral or any kind of back cysts. I know this is a new topic kinda like when aids came out it seems. BUT, we can find more information on line then any doctor will ever try, it is just they will not continue to study the best kind of ways to take care of these or just the fact that they are symptomatic. I went 3 years with total debilitating pain, I continued to work but only with pain meds, and many other medicines that they thought would help me. I was sent to all kinds of doctors from DO, to rheumatologist,, to many different back doctors and pain doctors. I actually got tired of listening to the same story. I would work doing the best I could do, unable to walk upward as the pain was in my lower back and illium bones (pelvis bones) so I had to use walls to walk, i could not sit or drive long distances or I would have to literally have to help my legs move and hold on to everything around me so I would not fall. I had to have 4 in. high steps build into my home because I could not lift my legs high enough to take steps, even after surgery, I have trouble with my hips working enough to take stairs regularly, I have to hold on and go slow or sideways. I tried to take the family medical leave act,( the presidents idea for helping us) But I was given the excuse that they didn't have 50 full time employees so they got out of letting me use this.

I agree no fibrin glue, as I read that it is stuck to the nerve itself so if Dr. F or any other certified doctor who drains and wraps the cyst in cow belly material so it will not come back or refill with spinal fluid and also in my case put in a disentegratable plate across the area that is still there as of 2 years. But if he had to remove the glue first, it is attached to the nerve and this will cause more nerve damage then not when he has to try to remove the glue as any pulling or touching nerves will cause severe pain and damage. Just an FYI from me to you on disability. I had surgery with Dr.F and then applied for disability which he writes a letter of recommendation for, I used ALLSUP (no meetings, all on the phone) that was a plus for me as they were out of IL. But they all have worked with the disibilty office at one point and know the ins and outs and I got mine first try, no two year wait. I was amazed. I have some permanent nerve damage from the 3 years I went through before help, and it was a temporary 3 year disability until I would be re-evaluated which makes me a little nervous as they can see my condition an abilities different then I do but that is up to the good Lord as I gave it to him and I trust he will take care of it. There is still so much I can't do BUT the ability to walk upright to me is at least 30-40% - sometimes more, less pain but any less pain is wonderful!

ASking gem, what do you know about tarlov cysts on other parts of your body like the the lumbar or cervical? I ask because my pain doctor tells me that it is not closed in like the sacral nerves so most likely a lumbar cyst will not be symptomatic, and he did a nerve induction test and of course it came out negative. But I had one back when I had the other and it hurt so bad they had to have a nurse come hold me still and then I could not walk when I was done and she had to help me walk out and left me in the hallway. On the one that I just had he was looking in my left leg as it is on the rt. side of my lumbar area. The doctor that did the test for some reason stuck that needle in my sacral area with no warning and I hurt so bad I started crying and this was after my surgery 2 years, he kept telling me to push towards him to help him get the needle out and I just wanted to pull away he could not get it out for a few probably seconds but it felt like hours and i had a stinging senation and pain in that area for 2 weeks. (Sorry I got off subject but nerve induction tests are a bunch of bull if you ask me.
If you have one in the cervical area, what are your symptoms? Same with lumbar?

I agree they are trauma caused, I was in a car accident and I fell flat on my back on ice, before these showed up.They also can be from heavy lifting which I also did as I seemed to be the packer of wood when my husband and I would cut wood for heat, (before age 50) there were some pieces that I barely got to the splitter.or truck.

Do you by any chance know who performed your neighbor's surgery? Thank you!

Hi, call me J. I have had Tarlov Cyst surgery 2 years ago on 5 cysts in my sacrum. It relieved the pressure after 27 years. I now have other pain that is just as dehilitating if not more. The pain is different. Too long to go into. I wish I would have had the surgery years ago but I was misdiagnosed for years. Most people if they have it early when symptoms first start have had good results from what I hear and if they get a specialist in this area. I am in excruciating pain all the time and am on high doses of pain killers round the clock. I am considering a pain pump but am not sure my ins. will let me get it without doing the stimulator first. Could you please email me and see if your friend would be willing to answer some questions I have. Very Desperate , J

Hi, call me J. I have had Tarlov Cyst surgery 2 years ago on 5 cysts in my sacrum. It relieved the pressure after 27 years. I now have other pain that is just as dehilitating if not more. The pain is different. Too long to go into. I wish I would have had the surgery years ago but I was misdiagnosed for years. Most people if they have it early when symptoms first start have had good results from what I hear and if they get a specialist in this area. I am in excruciating pain all the time and am on high doses of pain killers round the clock. I am considering a pain pump but am not sure my ins. will let me get it without doing the stimulator first. Could you please email me and see if your friend would be willing to answer some questions I have. Very Desperate , J

I just found out I have Tarlov cyst 6cm in size. The pain w sciatica is brutal. I was curious as to how well you are now after Rife treatments and other naturopathic remedies?

Best to you

Pam