Tarlov cysts

I have ben diagnossised with a Tarlov Cyst on the end of my spine. I am in terrible pain and can not find a Dr. to help me. Is there anyone else that knows anything about this kind of cysts that could help me???? I live in Lancaster, Pa. I am desperate for help.

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I fully understand what you're going through. I started seeing doctors in Nov. 2006 for extreme back pain. They didn't do an MRI until May and that's when I was diagnosed with a 6mm cyst on the S1 nerve root and a 1.3cm cyst on my S2-3. So far I've been getting nothing but a run around from the doctors. I've been told to loose weight and stay on the pain pills, that it's all in my head, and that it's a disk problem that the cyst can't be causing my pain. I've been having to wait at least a month between all of my doctor appointments with no help in between. They've only put me on 1 pain med and I've been on it long enough that it's not helping anymore. I'm tired of them treating me as if I don't know what I'm talking about so I started printing anything that I thought would help me with getting something done and now I carry a packet with me to EVERY doctor appointment along with a copy of my MRI report.

I don't think the doctors actually know how depressing this condition is. I can hardly drive anymore, I can't do my grocery shopping alone, I'm falling because my legs won't work right, I can't sit, stand, walk, or sleep for very long because of the pain. I feel like a total burden on my husband and kids because they're having to do a lot of what I was able to do before and can't anymore!

I've finally got to the point that these doctors are going to listen to me and realize that I do know what I'm talking about. After I got my MRI results I started researching tarlov cysts. When I go to see any doctors now I carry a packet with me that has a copy of my MRI report and documentation that I've printed off of certain websites that back up what I'm saying. Since I stated doing this the last doctor that I say was in shock about the info. that I had.

I hope that you can find help soon and if I find out anything that may help I'll get back to you. It's nice to finally be able to talk and hear from people that are going through the same thing and actually understand what's going on! Here are a couple of web sites that may help you.

www.tarlovcyst.net
www.ninds.nih.gov/disorders/tarlov_cysts/tarlov_cysts.htm

Hang in there
Cheri

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I feel your pain, literally. I have had back pain since I was 14, I am now 52. It started with compression fractures in my thoracic spine. I now have 3 or more. Then I was in a rollover accident and injured my cervical spine and caused a subluxation, or dislocation, of two vertebrae. Then about 2 years ago I had a bout of shingles which is caused by the chicken pox virus and things changed. I kept telling my wife something was different and I had increasing pain and weakness from my waist down. If you read the literature available on the net you will find there are several believed causes or precursers to T. C.s including trauma injury to the spine and a recent herpes zoster or chicken pox/shingles infection. An MRI showed a T.C. on my sacrum although they did not give the size or actual position. I had never been on narcotics for pain before, but a year and a half ago the pain got so bad I had to accept the drugs. That act opened a can of worms worse than I ever thought possible. I have been accused of being a drug seeker/ addict and liar. I was told that treating my pain went against everything the Dr. (and I use that term loosely here) believed in. I am now being cared for by a P. A. (Physician's Assistant) who is very open minded and actually read the info on T. C.s I took in to him. He too had never heard of them, but he believes me when I say I am in pain. I am waiting to see a Neurosurgeon and we will see what he says. I was a Respiratory Therapist for over a dozen years so I am not intimidated by the Dr.s and I speak my mind and research the subject before my appointments. This does not always go over well, but it lets them know I am a knowlegable patient and I'm not going to be blown off and go away. Most Dr.s do not have any knowledge of T. C.s or their treatment, so if I could give anyone any advice about healthcare in general and orphan diseases in particular, it is to be informed and be persistant. If you do not get the treatment you need at your current provider make it known to them that you are unhappy and you will look elsewhere for treatment if needed. Change Dr.s, if you need to, as many times as you need to until you find the ONE. It's kind of like dating, I guess...since it's been a while since I've done that and if I did it now I wouldn't need a Dr. once my wife got a hold of me! Anyway, you usually don't find the right person the first time you date, it takes time to find the right ONE. So take heart! There are a lot of us in the same boat and we need to take back our lives and make the Dr.s do their job. Their first job is do no harm. T. C. s untreated can lead to permanent nerve damage,bone erosion and in the worst case paralysis. T. C. s flair up and cause extreme pain and then can clear up when the fluid drains out, probably after you've been forced to lay on your side in bed for a couple days. I will post whatever info I get from the Neuro Dr. on this site as soon as I can. Please don't give up hope yet! I haven't and even if I get the T. C. "fixed" I have the other conditions that will continue to get worse. And don't let them make you think it's all in your head and you're just a hypochondriac. Remember they are Dr.s...Not God's! Good luck!
Marvin
Here is a link to the Tarlov Cyst Assoc.- http://www.tarlovcyst.net
(Copy and paste into your address bar)

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Like you I also was in an accident when I was 13. I broke 3 vertibrae in my lower back and had a real bad bruise and sprain to my left hip. I've been in pain ever since because they didn't catch the breaks until 6 years later. When this flare up started I too told my husband that this time it was different. Not only was I having the severe pain but I could feel the weakness in my legs, mainly the left side, and also that my legs and feet were numb. Every so often through out the day I also get what I call lightening bolts going down my legs into my feet. I don't drive anymore unless I have to for a doctor appointment. I can't do my grocery shopping alone anymore and I have to have my kids do or help me with the housework because most of the time I can't do it either. Like you said, you just have to keep trying to find the right doctor that will finally listen to you and get something done!! Instead of the sending me to a neurosurgeon they sent me to a P.A. He told me that I was probably born with the TCs and that they were on the spine. When I argued with him he tried to tell me that I was wrong until I pulled out documentation to prove what I was seeing!! I've seen a physiatrist (back doctor) that implied that I was just sitting around thinking about my problem and if I didn't get up and start doing more things that I wasn't going to get any better. I'm going next week to see a different physiatrist. I've also had to change my PCP. The last one wasn't listening to me at all. I sure hope that I find the doctor that's THE ONE soon!!! I'll let you know what I find out next week if there's anything else that we don't already know about this disease. Keep your chin up and good luck to everyone!
Cheri

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I have never heard of that disease,but I'm sure it's very painful.I would find a good neuro and if the first one doesn't have somethin to tell you find another one.That's just wrong for them to tell u it's all in your head.

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I, too, have tarlov cysts. The latest MRI done in December 2006 showed multiple tarlov cysts ranging in size from 1 to 3 cm. Most neurosurgeons have told me that they are not responsible for the pain. Like others who have responded, I've been researching this on the web. There is a ton of information there. And much of it supports the fact that the cysts compress the nerves in the spine and THAT DOES cause pain. Moreover, it's been determined, depending on the amount of compression (and perhaps the amount of time??) that it can do nerve damage.

I'm seeing a new neurosurgeon next Monday, 7/16/07 and will also go with copies of all the information I've gotten on the web. To be honest, what they can do about them doesn't seem all that heartening. But I think, having a doctor at least believe me will be a beginning.

Don't give up. You know you hurt. We all seem to have the same symptons...back pain, legs that don't want to function, some have bladder problems, others have sexual problems. From what I understand, it is due to which nerves are being compressed. If anyone is interested, I'll share my upcoming experience. We all need someone to understand.

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hi im in so much pain from this cysts but as everyone else i cant get any help. they wont give me anything for pain and i cant sleep . does any dr. give anyone anything that actually works. im going to a spine speclist in august this should be good. any suggustions as to what i can expect?

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In Arizona it is against the rules of the Arizona Board of Medicine for Dr.s NOT to treat pain. Find your local state Medical Board and see what their rules are. Dr.s are afraid of prescribing pain meds because of the Drug War. Dr.s are more afraid of a complaint against them with the Medical Board and having to go before that board and explain themselves. If you have to - go to the emergency room when you are in the worst pain and force your Dr. into treating you. I went through four Dr.s and wrote several letters to each before I found one that would treat my pain with enough medicine to be effective. I realize I will probably be on pain meds for the rest of my life, but at least I will have a life! Before I got treatment I could not do any of the things I had just two years before. I believe my cysts were made worse when I got a case of Shingles (The Chicken Pox virus - Herpes Zoster) about two years ago. The thinking is the virus makes the body alkaline and that allows the cysts to grow. I also have a history of back injury due to trauma and heavy lifting;both of which are also thought to be a cause. Check out the website - http://www.tarlovcyst.net/ - there is a lot of info there and you can print up copies to take to your Dr. Good luck and stay with it and be insistent. You ARE in pain and you have to get them to believe it, no matter what it takes. Good luck and keep in touch.

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Good Morning,

I was wondering how you mad out at your Dr. appt.? I sire do hope you received at least some new knowlege(sp) about your health. Is there any HOPE for us? I a am anxious to c how u made out?

Still in pain.
Ann

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I too wonder how everyone is doing and if anyone has any new info. I hope everyone will keep in touch through this site to keep us all informed and just to give support. I wish all well and I look forward to any new info. or just to see how y'all are doing. I see the Dr. again today and will see if I have a referral to a neurologist or neurosurgeon yet, it's only been 2 months that I've been waiting for it!
Marvin

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A neurosurgeon or Spinal Surgeon should be able to help. I have the same problem + a facet joint cyst causing presure on the L4 nerve on the right side and also on the L5 downgoing nerve root. as well as about 14 Tarlov cyst along my Spine with a few at the end of my spine. Causing excruciating pain.

Unfortunately I only know Neurosurgeons in South Africa and will have to seek one who specialise in Tarlov. once I go back there. The one I went to and who diagnosed me is not keen on surgical intervention. He however performed a lumbar epidural for the lower backpain which helped considerably, but I still have to take all these painkillers to be able to cope from day to day and walking and excersizing to the minimum.

At present I am visiting in Canada and a GP prescribed Serebrex 200 mg 1 Capsule in the morning as well as acetaminophen/cod 30mg 2 at night. This releived the pain whilst I did not do a lot of walking but additional Quinine 300mg prescribed 1 at night helps troumendously. I prefer taking the quinine also in the morning if I feel the Celebrex is not lasting the day, say a couple of hours later. (Unfortunately Quinine leaves a bit of a bitter taste and the acetaminophen/cod causes constipation for which I take Phillips Milk of Magnesia tablets up to 3 when necessary - which is fairly regularly)

Hope this was hekpful, please let me know.

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After reading the other commends about waiting for 2 months to be able to see a Neurosurgeon etc. And my own previous esperience in Canada where I had to wait 3 months to see a Urologist with something we were not sure if it was malignant or not. I flew back to S.A, and saw a Urologist the same day I arrived and with the proper equipment in his consultingroom in a Urology Hospital I had peace of mind the same day. I was on a waiting list in Vancouver and had my healthproblem sorted out operated and was healthy again when the Vancouver people phoned to let me know that I could see the Dr. in 6 weeks from then.

I cannot understand that a 3rd world Country such as South Africa can have such a better Medical System where people can decide for themselves who can take care of them, where and when.

Here in Canada you can take your dog or animal for private care but not yourself ??????

I think the Medical Profession in S.A. is outstanding, although we have Excelent .Government Hospitals . We also have excellent Private Medical Care and if you need help you can basicilly have the best within a week or even a day. Most S.Africans contribute to Medical Aid Scemes who in turn pay for the treatment. But there are no waiting lists, maybe a day or two or a week depending on the Phisycian and if one is too busy they refer you to another. The Hospitals are equipped with the best equipment available.

In S.A. the Drs have to compete to make a living and the patients have to pay for themselves which makes waiting a waste of time both for the Medical Practitioners as well as the patients.
Private care for those who wish and can afford it also take such a load off the Goverment hospitals and therefore the poorer or those who prefer to go to Government hopsitals/Drs have a better chance of getting help a lot sooner.

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Hi All,

I had an appointment with a neurosurgeon. However, talking with their office the day before the appointment, I found they do not participate in my insurance coverage. I had asked previously, if they take it and they said yes. You'd think they'd know I'm asking if they participate, but, evidently, they didn't, or didn't care - they TAKE it (as an out-of-network), but don't participate. Please make sure you use the word "participate" when asking your physicians!!

Next appointment is 50 miles away...closest neurosurgeon who takes Aetna. Very sad, but I do have a date for August 13th.

So, no news yet. What I do know about this particular group is they ARE sympathetic to people with tarlov cysts so, hopefully, I'll have some news in a few weeks. Keep your fingers crossed!

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Hi Everyone,

Well I went last week and saw my new doctor. She at least listened to me but it was just an inital visit to get to know one another. The next day I went and saw the new physiatrist. He said that the tear in my disk may be causing me some pain but not all that I'm describing to him. He believes that it's all in my SI joints. I now go in next Monday to have injections into both SI joints. I guess we have to jump through all of their hoops to prove to them that we know what we're talking about. I swear that these doctors think that we're stupid or something and don't know the difference between JOINT pain and NERVE pain. Oh well I at least got them to put me into a new pain med so that I can somewhat walk and function. I hope that everyone has a good day.

Cheri

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I found this support group:
http://www.tarlovcyst.net/
Muriel

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Hi,
My name is Debbie and I also live in PA. There are no drs at Hershey that treat them or believe in them I belong to another group with tons of info on cysts, drs, etc, and support
Tarlovcyst.net

I am going to Dr. Frank Feigenbaum
He is in Kansas City,

Dr. Donlin Long
John Hopkins Hospital in Baltimore but he has a6 mo to a year waiting list.

If you would like more info or to email me directly my email
distressed100@yahoo.com

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I just found this site and wanted to share some good news for all who are suffering with Tarlov Cysts. I was diagnosed with a 3cm TC in March 2007. In my research, I came across the Tarlov Cyst website that is referred to in some of the postings I've read here. There is also a community forum linked to that website, but in my experience, it has been extremely biased and closely censored.

The good news is that there is a neurosurgeon in Kansas City, MO by the name of Frank Feigenbaum who readily acknowledges and treats TCs! I wasted precious time in attempting to get treatment from the neurosurgeon at Johns Hopkins Hospital. Dr. Feigenbaum operated on my cyst last month and I am thrilled to be able to report that I am well on my way to regaining my former life!! I am able to do things that I have not been able to do in a very long time! The follow up care that is provided by Dr. Feigenbaum and his nurse is incredible! His contact info is 816-363-2500.

There is also a new website that was launched a few weeks ago and it is much more up-to-date than anything else that's out there. It is www.tarlovcystfoundation.org . One of the links on this site lists all the physicians, internationally, who treat TCs.

Best wishes to all who are seeking treatment!

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IMNRN:
Thank you so so so much for giving me the hope, how is your post surgery recovery?
Do you mind to update for us?
An anxious patient
Jessica

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Jessica,

I am happy to give you an update! My surgery was Aug. 21, 2007 so that puts me at about 10 1/2 week out. I am able to do activites that I couldn't even consider doing before my surgery. I've been on vacation twice and have been so able to enjoy it!

The pain is lingering from the nerve damage, but it's decreasing slowly, which is hard for me. Patience is not one of my better virtues, but when I look back & see where I was and where I am now--it's incredible! It's a long recovery road when nerves are damaged and traumatized, but I expect nothing less than a full recovery, in time.

Dr. Feigenbaum will monitor me by having MRIs done at 3 months (I have that one scheduled for this coming Monday), 6 months, and a year. I feel sure that the MRI on Monday will show that everything is as it should be.

If there is anything else I can answer for you, please don't hesitate to ask!

Linda

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Dear Linda:
Thank you so much for your immediate reply, and congradulations for your recovery. You are giving me lots of hopes!! I am starting have the pain from my hip,and been a RN myself,I did so much research that make myself sick, anxious, worries, starting to get depressed. The emotion like rollercoaster, one moment I feel I can fight for it and other time just getting low. I am 49 yrs old,I thought I have whole lot of life in front of me, am I going to be like this the rest of my life?? the pain is 5 but to find the good Neurologist is the major problem. I am in Los Angeles area, planning to do some research in UCLA or UCSF... Pls pray for me..
Jessica

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To all out there with back pain,
1st get a copy of your mri and see if there is anything incidental, such as tarlov cysts, meningeal cysts
2 nd research these on the net.
3rd after research join on of the groups to talk to others with these problems
4th Keep searching for help and it may mean travel as it does for me but finding others with tarlov cysts and those that have had surgery with Dr. Feigenbaum in Kansas City, MO and how they are recovering helped me to contact him and will be having surgery soon.

The reason I am writing this for all people with back complaints is I have other problems with my back and the neurosurgeons kept telling me I had layer upon layer of problems and yet no real help. But then I remembered that the 1st NS I had seen said my lower back was covered with cysts but they meant nothing. After a year with different NS and no relief I remembered this and got on the net and realized I had what fit the description of tarlov cysts. I got the reports from the hospital on my mri's and found that I in fact had tarlov cysts but most NS's and reports only mark them as incidental and meaningless. I would have spent the rest of my life in agony with no help except to think I was crazy because the NS's said surgery wouldn't help but might hurt and had extensive shots of various kinds through pain management which helped a little but they told me surgery wouldn't help but might make me worse. I was petrified from the diagnosis as well as the thought of living in this nightmare of pain. After much prayer and that little comment "you have cyst covering your lower back but they mean nothing" I hit the net and I have as Dr. Feigenbaum put it "one of the worst cases he's seen but will give me 100% of all his abilities to operate on me" gave me hope. I don't know since I have had these for so long and the damage to my nerves as yet is unknown as to how permanent it is but at least I have a professional that instead of putting me down as one did. Told me to get off my butt and stop moaning and become a productive member of society again instead of looking for disability.
I am not the only on on the tarlov sites that has self diagnosed and gotten to a dr that works on tarlov cysts. I have hope for a future. I am 49 yrs old and just found out I have a grand baby on the way and want to be a real part of his or her life and now I have the chance. I have hope now not total despair and depression. I felt I had to reach out to others out there who are suffering and give some hope.

Dr. Feigenbaums Phone number is (816)-363-2501 extension 130 to talk to Debbie West who is his nurse/surgical assistant. They will need your mri's, history, a letter explaining your symptoms.... You can get all this information off his site http://frankfeigenbaum.com/practice/

Another site for support is .... http://health.groups.yahoo.com/group/straight/talk/tarlovcysts/join
It is a forum which has tons of support and information

There is now a site specifically for tarlov cysts .... http://tarlovcystfoundation.or/Home.asp

I pray this helps some one out there if you have more questions or help feel free to email me at

distress100@yahoo.com

Prayers for all,

distressed (Deb)

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