Thursday, June 08, 2006

Tarlov cyst

Yes, I know -- I had never heard of that either, but I have a 2 cm one of these in my lumbosacral region. According to what I've read at http://www.tarlovcyst.net , the definition is this: spinal nerve root lesions filled with spinal fluid, found most often at the sacral level through MRI scanning. Tarlov cysts can be asymptomatic or cause a serious neurological disorder called Tarlov disease. The symptoms are: pain in the low back, buttocks and hips. The thighs, legs and feet may or may not be involved. Symptoms can be opposite-sided. Tarlov cysts can also cause pain and disorders in the organs of elimination and reproduction, hypoesthesia, paresthesia, and pain in the thigh from lack of blood supply (neurogenic claudication). The postures of sitting, standing, walking, and bending are typically painful, and reclining flat on the side is usually the only posture that offers relief.

I have also learned that this is a fairly uncommon condition, and one that not a lot of successful treatment options exist for. I do not know at this point if I have symptoms as a result of this condition, or if this is simply coincidental to some of the pain I've been having. There have been times in my life, 20 years or so ago, when I had a great deal of difficulty with what I thought was sciatica, but I suppose it could well have been symptoms of this cyst. I'm not sure if there's any way to find out definitively.

My doctor is ordering more physical therapy for me, though she did also mention that now might be a good time to have a baseline visit with a neurosurgeon. That prospect is pretty scary to me. I have long had an almost-phobia of having surgical procedures performed on my back, particularly the needle part of surgical procedures, and any way you go with this, if surgery is involved, there will be a needle.

I'm not sure what to think about all this, or even how I feel about it. On the one hand, it's a very scary prospect, to think of having a spinal growth that could do lasting nerve damage. On the other hand, I'm not sure what the chances really are of that. I could be having back pain for a variety of reasons, none of which would have to do with a cyst. I've had lower back pain for many years, so does that mean I've had this cyst for that long? I just don't know.

Anyway, I guess I'll look forward to more PT. I know I benefited from it last time, and I have no reason to think I won't this time. Maybe they'll even be able to work on my neck & shoulders a little again, too. That would rock.

WIP

47 comments:

Purr said...

*hugs* I hope it doesnt give you any trouble.

Genevieve said...

Hopefully the PT will be beneficial and the cyst will be non-problematic. I will hope for the best.

Spinal Cyst said...

I created a blog to relate my case. I am not sure yet if it is a Tarlov Cyst. Here is the URL: http://spinalcyst.blogspot.com

PS: The blog is not yet complete.

Anonymous said...

Good luck. I have has this condition and had the surgery to remove the cyst. Like you I had a long standing discomfort especially in the legs and but during long period os sitting (mostly airplanes). I though my was going to turn out to be a blood clot. I had always done some forms of exercise. I stated pilaties 4 days a week and things took a turn for the worse. I woke up in severe pain one night while out of town. I thought I slipped a disc. It took awhile to be diagonised via MRI. At this point I could not sit and was loosing use of my right leg. It took months to find a surgen. Finally in Oct 2003 I had the operation. They found at this point it had grown into the pelvis....not fun. It is a long recovery road but now I have quite a bit of my life back although not 100%. But I am hopeful and excerising daily for recovery. I guess my point is to be careful with the PT, it might flair.

Anonymous said...

Who and where is your surgeon? I have just been diagnosed. Over the last 3 years I have had episodes of low back, hip, and leg pain that I compared to sciatica. I was treated with steroid shots, chiropractic adjustments, physical therapy and muscle stimulation. This time it took a week for the pain to become acute - excruciating is more like it. I ended up at the ER where X-rays of spine and hip were negative. My PCP ordered an MRI which revealed a large Tarlov cyst. I see a neurosurgeon tomorrow. There is no way that I can live with this pain. I am on 3 types of medication (I cannot tolerate narcotics). I have read just about every post on the internet.

Claudine said...

Hope you found some relief....

I am moderator for europe about this condition...

Really worse after a surgery..I would say: wait a little for procedures and/or surgeries are safer.

I am in touch with Neurosurgeons that tought me about.

You think you can't be worse..I tell you you can..

Take care my tarlovian friend

deejoanne said...

dj says, After 4 months of pain in the lumbar area and gradually getting worse, I tried massage, physio' chiropractor and accupunture before finally going to a GP who ordered lumbar cortisone injections and strong pain meds, no relief then I had a MRI which has found a Large tarlov cyst, this has all just happened (Jan 2008)
I see the Neuro-Surgeon next week, I can't sit at all as the pain is on a scale of 8-9 when doing so , I have taken lots of time off work as my job role involves alot of computer and desk work, I am hoping that their will be some relief in sight soon...

deejoanne said...

dj says, After 4 months of pain in the lumbar area and gradually getting worse, I tried massage, physio' chiropractor and accupunture before finally going to a GP who ordered lumbar cortisone injections and strong pain meds, no relief then I had a MRI which has found a Large tarlov cyst, this has all just happened (Jan 2008)
I see the Neuro-Surgeon next week, I can't sit at all as the pain is on a scale of 8-9 when doing so , I have taken lots of time off work as my job role involves alot of computer and desk work, I am hoping that their will be some relief in sight soon...

Anonymous said...

I too have Tarlov cysts and have found that altering ice and heat seems to help. I highly recommend staying away from physical therapy as the stretching supposedly can make them worse. This I have found to be true.

Best of luck.

kelldemel@aol.com said...

i am a 4o yr old woman who was diagnoises with a tarlov cyst 2 yrs ago and no one ever heard of it because it is known as a graves disease and is sometimes asystematic my pain goes unnoticed and untreated...i gave up i was in a tarlov group but got sick of hearing of how nothing was being done and how people are still in pain..please help us

Anonymous said...

I was just diagnosed with a 1.8cm tarlov cyst on the S2. My pain started 2 months ago after lifting a mattress. I can't believe some of you have suffered years. I see a neurosurgeon on Wednesday. I am anxious to see if this is the cause of my pain. It has no rhyme or reason to it. I know that long rides are out. The most I can lift without pain is a 1/2 gallon of milk.
I've been prescribed narcotics which don't work and upset my stomach. I did get the first sleep I have had in 2 months last night by taking 2 allergy tablets for a cold I have now. The coughing made my symptoms worse. I have resorted to a cane because of the constant numbness in my foot and unpredictable nature of the pain. I fell yesterday because I got overconfident and wound up on the sofa. Has anyone found an answer? Does the surgery work?
I even have a TENS unit that only works as long as I'm plugged into it. Thanks for letting me vent.

deborah curtis said...

I have just had spinal fusion surgery and Bone Graft on my L4-5 Region, I also have a Tarlov cyst but after many months of tests the cyst is not the cause of my pain. I have heard that sometimes this can be mis diagonosed so be careful, the surgery to remove a Tarlov cyst is tricky, the majority of tarlov's don't cause any problems, You are born with them!

Anonymous said...

I just got back my MRI results and I have a 2cm Tarlov's cyst at the S3 level; but this came along with a laundry list of other conditions such as degenerative disc disease, dried out discs, narrowed disc spaces, "disc bulging" (???), disc protrusion indenting the thecal sac, spinal stenosis, and i think that's all? I have been in pain for about 2 months this time but have always had back probems but this time it is so bad that i did something about it. I fell about 2 months ago which I read can aggrivate the cyst causing the symptoms. I am just scared that with so many other diagnosises that I am not going to receive the right treatments. The chiropractor put me on a rolling bed and when standing up off there i couldn't stand up straight it hurt so bad i wanted to fall over. I saw a neurosurgeon who was a joke (didn't even read my mri report, i had to read it to him and ask him what it meant). I am now going to be seen at Lifebridge SPine Health which is a fairly new hospital set up for just brain and spine health. I am hoping that going to a specialists will be able to fix me!

Anonymous said...

I just posted that comment above...


did i happen to mention.... I AM ONLY 21 YEARS OLD!!!!!

kimberly said...

I have aching pain that comes and goes daily. I have two TC's 1.5cm each on my central and right side of my s2. Soemtimes the pain is so severe I cry. I can feel it all the way up to the back of my head...sometimes it makes my jaw ache. What I want to know- is where is it documented/ proven that you are born with these. All the studies I have seen and read about- all of the people had things that were of common. Such as an accident, epidural or lifting something too heavy. I am on 3 different medications right know. These are different of those from a couple of weeks ago. The pain medication eventually stops working and you need a different strategy.
My pain that forced me to my family physician two months ago- treated me for a urinary tract infection. When that didn't work cause I had a sciatic nerve pain all the way down my left side for several days, he sent me to an orthopedic that had me do an MRI- MRI found these little suckers- the ortho sent me to a neurosurgeon he stated the only thing was to take off my sacrum to get to them and it couldn't possible be these causing my pain and - sent me to my gynolcologists he ran everything from an ultrasound/ pap smear and so on.. everything was normal- since the Neuro surgeon didn't invite me back- I went back to my family physician who was very sympathatic( Don't need that... what I need is relief) He prescribed the three current meds and said he would help find me someone familiar with them- his nurse stated this could take a month. Everyone says sit down and relax.. yeah- when my back says sit I sit, stand I stand- Doesn't matter what I am doing or where I am at. When my back begins to hurt- It decides what I do next. is anyone awaken before your alarm clock in the morning because of the pain?

Anonymous said...

What's the expression???? Misery loves company? I was diagnosed a couple of months ago with multiple Tarlove Cysts, the most aggravating one being at L5, S1.Just a couple of week's ago I received an epidural steroid injection. It has given me tremendous relief. I seldom take any medication since the procedure. I'm hoping it lasts. There are no guarantees. At this point I just appreciate any time I have with minimal pain. I appreciate being able to roll over in bed at night without being awakened by the pain. It's not completely better, but I'm okay with that. Who can think straight when the pain is constant and at an 8-10 on the pain scale all the time. Everyone who suffers from this is in my prayers.

Leann said...

Hello –

I am an American ex-pat, living in Costa Rica. I am 46 years old.

Do you have ANY RESOURCES, INFORMATION OR TREATMENT in Spanish? I live in Costa Rica (2.5 years), with excruciating pain for 4 years now, and my most recent MRI shows a Tarlov cyst in my S2.

My neurosurgeon and neuroradiologist do not believe this cyst is the cause of my pain, but believe that I need open spine surgery to place bars and screws.

If you have any resources of medical staff in Costa Rica, I need to know about them.

I took Tramadal for 2 years until the pain became unbearable; I now take morphine sulphate injected subcutaneously, in 15 ml ampules. I take 3.5 a day (about 55 mg or ml) a day, but after 3 months at the same dosage I am almost unable to function.

My symptoms match most of those of Tarlov cyst disease – feeling like I’m sitting on a 2” x 4” piece of board when I sit for more than 10 minutes; bone aches when I stand for more than 5 minutes, huge muscle knots that cut off blood circulation in my legs, horrendous sciatica. I do have herpes simplex. I get minor relief from heavy massage around the muscles of my hip joints; tens units only help while in use, and the accupunture specialists I went to in the states only poked needles in the most painful of areas that took me days to recover from the intense pain.

In Costa Rica, we have limited pain management drugs – Tylenol w/codeine (by the time you take enough to help, you have a raging headache), Tramadol (pills give me spontaneous vomiting, injections were great until the pain intensified beyond response), and then morphine – which only a few doctors will give me, but do so willingly based upon my condition.

Panama has Fentenyl, but I am told it is more expensive and more addictive.

I do not “enjoy” being on morphine, but it is the only thing now that makes the pain bearable.

We don’t have a lot of money, and no one will give me insurance back in the States because I left with “an unexplained condition” when I cancelled my insurance to move to Costa Rica 2.5 years ago. I would be great if I could have a “virtual” appointment with a doctor who could prescribe pain relief/pain management with me via web cam interviews, instant messaging, emails, etc. My doctors here would corroborate my condition, but they speak/write Spanish, so I need a doctor contact who is bi-lingual.

Please, anyone out there, help me if you can.

Leann Saunders -- leann@arenalfishing.com

Anonymous said...

I am a medical doctor diagnosed of a 1,5 x 2,5 Tarlov Cyst (S2-S4) 10 years ago. I don't have a very severe pain but it is a daily companion, I had to give up all kind of sports and minimal alterations in my life (traveling, driving) worsen my pain for several days or weeks. I have also many problems performing my job, as quite often I have to be standing up for several hours. As the majority of persons with this condition my main problem is being seated, or lying, or standing for a period of time. This causes also quite frequent difficulties to sleep, and I do not use the alarm clock, as it is the pain which awakes me everyday after 5-6 hours in bed. Now I am about to ask for a second opinion, but I have found a significant relief taking amytriptiline 25 mg at night for the last 6 years. It is a very cheap medication. At the beginning I had several side effects (mouth dryness and important sleepiness), but they go away shortly and the pain is less frequent and I can deal with the pain much easily. Hope this can be helpful for somebody else.

From My Broken Heart~~ To Yours said...

I am the mother of a 17-year-old son who has TC Disease. This has been a tough battle to fight for almost two years. It all started when he tried to lift heavy trees at his Papa's Tree farm and slipped while doing it. He had surgery at Children's in Columbus, Ohio. The cyst was removed and all spinal fluid re-routed. However, he is in more pain now than ever....just different. He goes back to Children's 6-15-09 to try spinal blocks.
I know this is hell for those of you who have TCD and trust me when I tell you that as a mother, I wish I could take your pain from you.
I have been on about every website there is gaining knowledge and information. I have even translated the other languages. Here a two decent sites. One has a support group forum to join as well.

http://www.tarlovcyst.org

http://www.tarlovcystfoundation.org

Mary said...

2 Drs. that saw my MRI report failed to mention the Tarlov cysts found on it, nor other diagnoses. I received the reports and discs from my neuro-otologist in Mil.,WI. I had an MRI of my brain done the same day checking on my meningioma(dx: 18yrs ago)
The local hospital sent everything to this Dr., who then sent it to me, as is their protocol at Froedtert Hospital. I had been already trying to get an appt. at Mayo Clinic, since the 12th.with an orthopedic surgeon. I have called them and e-mailed them that I need to see a neurosurgeon instead, but it has fallen on deaf ears. I have been to Mayos several times in the past and I suspect if I had listened to local Drs., I would either be severely handicapped or dead. I advise everyone to be their own health advocate, become knowledgeable and find the best. I hope I do. My life is on hold and has been for the last 3 months. Last fall I complained to my Dr. that when I bend over, like in picking berries, within 10 min. I would get severe pain on my left side, and it would get to where I could hardly stand up and wondered how I was going to drive home. Without anykind of exam, he said,"When you get older the rib cage goes lower and rubs on the top of the pelvic bone when you bend over." He smiled. I did not believe him for 1 second. I will keep on trying to find a Dr. and keep everyone posted.

Anonymous said...

well that Dr is a shame. Sorry to hear that.

Anonymous said...

I have been to 9 different doctors in 3 years trying to get answers to my problems. I have bladder weakness, loss of genital sensation, chronic pain in back,legs,hips etc, constant numbness throughout my body. I had another fall onto my tailbone and was seeing a physio when he noticed I had no knee or ankle reflexes. After describing my symptoms he suggested I had saddle parastesia. An MRI detected 3 tarlov cysts at S2 and another 7cm cyst inside the sacral region. To top this all off I was diagnosed with Fybromyalgia 3yrs ago,double whammy in the pain stakes.More tests to come, not upset about the findings relieved to finally have a diagnosis. Doctor #8 called me a whinger and said there was nothing wrong with my back. Best wishes to you all.

Anonymous said...

I'm a medical doctor and just got diagnosed with a tarlov 3x2 cm sacral s2 on the right and one 2x2 cm o the left. a konservative management like pain killers and pt doesnt give you a defintive therapy, i read all the literature that is available and i would recommend first a epidural cyst infiltration or a ct guided aspiration with or without fibrin glue, so if your symtoms go away, its the cyst that is the cause, next step would be, if the aspiration does not give a dourable success, a operative approach (fenestration, imbrication of the cyst).

Anonymous said...

i'm the same like above...its very important to be sure that the cyst ist the cause of your pain and not another pathology, because cysts are often seen in MRIs but in most cases are asymtpmatic...

Kathryn said...

Dear WIP,

Do you know of a doctor who treats or sees patients with Tarlov Disease in the Nashville, TN area? My 68 year old mother was recently diagnosed with this condition after 20 years of chronic back pain. It is a bittersweet thing to be diagnosed. Nice to know she is not alone, but very disappointing to not be able to find a physician who seems to know anything about this condition. Any suggestions on who to see in the Nashville area would be greatly appreciated. She is only 30 miles from there. Thank you, kathryn

pat said...

I have bilateral Tarlov cysts at the S3 level. The right is small and posterior and the left is Anterior large - 4.7 cm located in my lower abdomen. I have a herniated disc at S1 and bulged discs all the way up through most of the L region. And of course scoliosis throughout this area to top it off. At T10 I have a anterior ossification resulting from a past growth of some sort. I'm a nurse and have been on disability for 2 years. I've been suffering extreme pain in my lower back and lower abdomen with symptom in my lower extremities. And upper abdominal symptoms resulting from the ossification putting pressure on adjacent nerves at T10. I've been to 2 neurosurgeons and neither knew nothing about the Tarlov. And with the surgical treatments now available, none seem even an option. Is pain management the only real alternative for us who suffer with this disease? Have any of you heard of any other new surgical procedures?
I'm not really interested in laminectomy or fenestration etc.
From all that I've read, the risks outweigh the benefits by a long mile. Also, as far as pain management goes, have any of you heard of etanercept delivered by perispinal administration for chronic back pain? Dr Tobinick is at the Institute of Neurological Research in Los Angeles. Or any other longer term pain management. (I've on 40 mg hydromorph capsules BID and dilaudid prn and topirimate. I've tried fentanyl patches as well). Any input would be helpful. Pat

1/05/2010 10:14 PM

Mary said...

I went to Kansas City, MO. and had Tarlov cyst surgery and also had my spinal stenosis taken care of by Dr. Frank Figenbaum. I had to lie flat for 24 hours after surgery, then I got up and walked to the bathroom without any difficulty and recovered very well. I was in the hospital for 4 days. Discharged on a Sat. and was out walking around the Kansas City Zoo on Tues., I week post surgery. It will be 3 months on the 13th and I will have my first post op MRI to check on things. Then a 6 month MRI and then a 1 year MRI. I had to make all my own arrangements for this surgery. Thank goodness for the internet. I have a new local M.D. and she is in my corner. Now I have to address my migraines.

Mary said...

I just read the posted comments, which I should have read first. There are only 5 Tarlov specialists in the U.S. according to information I could find on the internet. 1 in Kansas City MO., 2 in Maryland, 1 in California and 1 in the State of Washington. For me Kansas City MO> was the closest at 800+ miles. Good luck to Kathryns mother in finding and being able to get to a Tarlov specialist.

pat said...

Mary - what surgery did you have? And what size and location were your cysts? What were your pre-surgery symptoms - and for how long? Have they all been alleviated and if not what is your status? What medication are you on now?
Pat

pat said...

Oh Mary, I was just glancing up the line. Are you the same Mary from a few comments up? If so, you have explained about your left sided symptoms. I do understand about those!
Pat

Anonymous said...

hi my name is Erin. Yes tarlov cysts is the cause of my pain. I thought my pelvic pain was cause of endometriosis and scar tissue. I once had. I had hyster 07. I had lapros wed jan 6. I dont have it. I talked to dr f in kansis city, mo about 3 mos ago. he said he pretty sure the tarlov cyst is the cause of my pelvic pain. He said it is very large and a small one next to it. I talked to another orthep spine surgeon and he seen the mri of pelvic and he agrees causing my pelvic pain. This dr didnt believe in them but once he seen it he knew it was the cause. I am going for colonscopy monday. I will decide what I am going to do after this. orthepedic dr says dr f was is better than dr longs way. dr f takes it out and puts fat in it. like any surgery it is risky. I know if I leave it alone I can be in more pain than ever. I am 32 so what will I be like at 50 or 60. I hear claudine stories and they scare me. I know I have to do what is right for me. I will pray and hope for the best decision. I know I rather not have this.

On facebook erin roque brennan

flipper25701 said...

I have Tarlov too,.. I asked how many i had, They said to many to count. I cannot find a doctor who will adress my pain, or take me seriously when i tell them Im at the point of suicide due to the pain and depression cuz my life now sucks !!! I have DDD, scoliosis, 1 broke disk, 2 hernated and disk debree on my L4 nerve and protrusion of a disc in my thecal sac. I lose control of my bowels and bladder, have severe muscal spasms in my vagina, legs and feet. I lose my balance alot and I have problems with my memory, spelling and just cant focus. I have waited for almost 1 year now for my disability ruling,..hopefully i will get it soon because the day i get my check im headed to tenn where the tarlov Foundation is,.. i will try one more time to get a doctor to help me,..if I cant find a doctor or get refused disability, well Im calling it a life,.. Im out of here. Wish you all the best and thanks for letting me vent.

Anonymous said...

Dear Flipp25701,
Your Talov is probably not the cause of your pain you need to see a Neuro-Surgeon and or a Orthopedic Surgeon, I too had severe lower back pain and a Tarlov was shown to be present but these remain dorment. Nine times out of ten they are not the problem,my surgeon wouldn't touch it, I have had Spinal Fusion and I now have NO pain at all, I have a quality of life which I didn't have for 18mths But hey I'm alive and active, Hang in there and fight till you get what you deserve!

deejoanne said...

Dear Flipp25701,
Your Talov is probably not the cause of your pain you need to see a Neuro-Surgeon and or a Orthopedic Surgeon, I too had severe lower back pain and a Tarlov was shown to be present but these remain dorment. Nine times out of ten they are not the problem,my surgeon wouldn't touch it, I have had Spinal Fusion and I now have NO pain at all, I have a quality of life which I didn't have for 18mths But hey I'm alive and active, Hang in there and fight till you get what you deserve!

sefour51 said...

I would really like to find out more about doctors working with Tarlov Disease. I am a 58 year old female and have been experiencing pain in lower back, butt and down my right leg for over a year now. Had an MRI and showed I had two or three cysts on my lower spine. My Rheumatologist said I did not have arthritis or spinal stenosis. He said I have a slight herniated disc, but didn't think that was causing all my pain. Went to see a Neurologist today and asked him about Tarlov cysts. He said that they don't ever cause problems and that I have arthritis in the spine and wants me to have steroid injections. Now I am really confused since the arthritis doctor said I didn't have arthritis but neurologist says I do. I seem to have a lot of the symptons of Tarlov, but don't know where to turn. Any suggestions??

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Anonymous said...

Only a medical practitioner looking for business could call this a "nice topic". It is a very unfortunate topic, but one that is very crucial for discussion. This is not a condition that chiropractic is helpful for. My unilateral radiculopaty became bilateral after visits to a chiropractor. Others have also had trouble with chiropractic. These cysts do not like to be pushed or messed with.

Anonymous said...

Drs. at Mayo Clinic still think that Tarlov cysts do NOT have any symptoms. I had my surgery in Kansas City,MO. last Oct. and I woudn't hesitate to have it done again if I were to have other cysts become enlarged. I am able to change my bed linens without excruciating pain and do gardening and pick wild berries. I was just diagnosed with lupus and do have occasional aches and pains here and there but at 76 it's a given to some extent. When my MRI showed the Tarlov cysts I researched them on the internet and found the Tarlov Institute in Kansas City, MO. and contacted them. I sent my MRI disc and the next thing the specialist called me. He explained the findings as he had the disc in front of him on the computer. He has done a follow up MRI in depth discomfort analysis at 3 mos, 6 mos and then at a year in Oct.

Anonymous said...

I live in Australia and I was diagnosed with a symptomatic Tarlov Cyst last year after over 12 months with an extremely sensitive tailbone ..Im still waiting to see a neuro surgeon and symptoms are getting worse , at the moment my left hip feels really tight and I have pain in my right thigh that runs down into my foot I also get numb butt and cramps in my legs , constipation and headaches , all starting to get me down lately while I play the public hospital waiting game .

Anonymous said...

Hello Fellow Tarlovians! Hopeful News to follow:
Very sorry to hear of your life-changing (read: life-ruining) pain. I am 26 and searched forever to find our what the hey was wrong with me...dr after dr with some incorrect diagnosis and a bunch of prescriptions to match. I had been bed ridden, only getting up to pee and eat, for about 7 months when I finally got a correct diagnosis from my homeopathic chiropractor with a saccrum MRI. It was soooo horrible to read everything on the Internet and scary...I too became very suicidal. However, Partly b/c I don't have insurance and mostly b/c I generally debunk western medicine, I had to figure out another route (no one can be expected to live with this kind of mind blowing, depressing, consuming pain!). I decided that perhaps I had caused this cyst to appear through enviromental factors (sorta like a tumor) and so perhaps I could get my body to take care of it. Which leads me to where I am now. I have been following the Crazy, Sexy Diet by Kris Carr (watch her documentary Crazy, Sexy Cancer....so good) for about a month now and my pain is almost completely gone...it is such a miracle that I hate to even write about it now for fear of jinxing myself! It is not an easy regimen to follow but neither is being bed ridden and dead behind the eyes. The pain started going away slowly and then one day it didn;t come at all.. Now it isn't gone b/c if I walk for too far it starts to flare up but I can do everyday activities again without pain. I am hoping that if I continue I can get my body to absorb or at least stabilize the cyst (ie make asymptomatic). I encourage everyone to give thsi a try before surgery....just in case it could get rid of these gosh darn things! Write if you need me: damonscheryl@yahoo.com

Anonymous said...

hello i have a tarloc cyst too..cab u help me whats the treatment u been thru for pain freee..thanks

Gwen said...

Hi, I am quite shocked, I firstly was told that I have two fibroids (golf ball size), today i had a MRI scan done and they found tarlov cysts on S1 and S2, I have had terrible headaches, especially when I sit, I read through the comments, and came across someone who is taking Amitriptyline 25mg, and it is so stange, because I went to the doc a million times about my headaches and stiff neck and she prescribed it to me, as well, I took it for a while but stopped using it, but i am definitely taking it again, it helped a lot with the headaches. I have had 4 times in my life when I have had an exploding head syndrome (feels like someone hits you with a baseball when you turn your head) and i actually fall down from it it is an electric charge going through your head. I was terrified of the fibroids, I havent had children, and in SA they just want to do a hysterectomy on you, now I have a lot more to worry about. Anyway, best i find a neurosurgeon. Gwendie

Anonymous said...

I was first told i had "tarlovs after almost 5 yrs of back pain. Had a new MRI a few weeks ago the largest is now 3.7cm x 2.5 some others over 2cm. I can empathasie with many of you. some orthopaedics think they do not cause pain... I also have disc degeneration. saw a spinal specialist today he said my cysts are on the large side but will not touch them he said there is much controversy and risk with them. He will not entertain touching mine so I am now back interent searchign in the hope that some one is there somewhere to help. My legs have given me awful problems. calf ruptured 3 times in 2 years currently back in plaster again. my friend said i looked like my leg had been tasar gunned after seeing the spasm shoot down it. two days later the calf ruptured going to the front door. 50 but want to enjoy time my grandchildren not spend most my time in wheelchair or bedridden

Amanda said...

I was diagnosed with Tarlov Cysts in my lumbar sacrum area. I have a lot of low back pain,abdominal pain, and my right leg cramps all the way down to my feet making my toes draw as if they are having some sort of stroke. I can't sit or stand for long periods of time. I have been to 3 different neurosurgeons and none have been any help to me. I am now just seeing my regular physician and he has me on 3 different medications that I am finding a little relief but the discomfort is still there. I am taking Gabepentin 300 mg 4 times a day. Meloxicam an antiaflammatory, and sevella that works simular like Gabepentin. I am still fighting for my disability. I hope this is some help to others out there because I know the feeling.

Anonymous said...

I have a 3cm Tarlov Cyst at my S2 level. This was over a year and 1/2 ago. The pain is now 24/7 with no relief of medication. It is now affecting my right abdominal area, hip, thieg and shin. I am also dealing with (since 2007) Fibromyalgia, Lupus and Sjogrens ss/b. I am at a loss. In May 2012 I had Cervical Spine Surgery for C4-C6 levels and now have a plate with 6 screws. This was because of herniated disc with cord impingement. My neurosurgeon stated to me that my L4-L5 are also causing my pain in the lower back. So with the Tarlov Cyst and my Lumbar impingements are a major issue. However he wants me to heal from my cervical spine surgery. It will be 1 month come this May 2013. I am scheduled May 1st to further my medical conditions at Cleveland Clinic, however I am getting very depressed. It is not a pleasant lifestyle to live being in pain 24/7 and all you want is relief!

Anonymous said...

I am a 46 year old woman who has just been diagnosed with TC, multiple. I have had back pain since the age of 13, currently I am on medication that is not working for arthritis. The backpain is unbearable and I am sleeping for 1/2 hour stints in the night. I feel everyones pain and frustration as I was told that I was; over weight, or it was all in my head. Does anyone know of any Doctors in Ontario, Canada?

Lauren K. said...

7cm cyst here. Causing erosion of the bone. Still looking for a competent neurosurgeon in the area. :/