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Tarlov disease

ferny
1 Recommendation

I would like to hear from anyone who has Tarlov disease. I have had this now for more than a year. I have been hospitalised 3 times and have been told there is nothing wrong with me and that I sleep too heavily. As this was not getting any better and I was getting very frustrated with the New Zealand health system I paid for an MRI scan which highlighted a Tarlov Cyst. Now I am waiting to see a neurologist to hopefully decide if they will operate. It seems to be a condition that very few doctors know about or believe in.

Explore topics in this discussion:

Surgery Meningitis Back pain Pregnancy Asthma Sciatica Miscarriage Tarlov cysts Lortab Physical therapy Ultram Constipation Pain Weakness Neurontin Lyrica Depression

58 replies

Sandy8

I understand your frustration... There are thousands of us that have been met with medical ignorance of this disease. I am a part of a small group here in the US that is forming a foundation to promote research and continuing medical education. We are in the early stages of forming (dealing with all the legalities, establishing the infrastructure etc...) In the mean time, have you found the site Tarlovcyst.net? This site was established by a man that has been suffering with this disease for many years and contains lots of vital info that you can pass on to your doctors. Surgery is not a great option at this point ... you can read about it on this site, however there is a doctor in Europe... sorry, I can't remember where he is off hand but will be happy to get contact info for you... Dr. Maitrot that is having great success treating TCs with FGI and I believe some successful surgeries.
Please feel free to email me privately, if you would like more info on this doctor or others that have TC's across the big pond. There are several support groups that you might connect with for encouragement... Tarlov Talk at Yahoo forums. Tarlov Europe at Yahoo forums... etc...
You can email me direct at sandy.roof@crossroadsconnect.com.

Tam

I have had back pain, leg pain, and headaches, etc for some time now, approx 1 year. The Dr's at first thought it was arthrisitis in my spin, as I do have this in my hands. Any way, I went for an MRI scan it showed a tarlov cyst in my S2. I did go to see my local GP, and he stated that this doesn't cause any pain. After researching the internet I believe it can. So my question is, would anyone say that the pain I get is from the Tarvol cyst?. I do have other medical conditions like Blood clots on the lungs. I am now on tablets for this. I also have abdonmal pain, and on tests it shows blood in my urine. For this I am waiting for surgery.
Right now I am at a loss. Can anyone help me?.

WendyFallenAngel

Hi Tam

I also have Tarlov Cysts at S1-S3 and from the sounds of it your Tarlov Cyst (TC) is the cause of your problems, however there are very few Drs who believe they are symptomatic, although over the years this number has increased. You should visit www.tarlovcyst.net and sign up for the sub groups, Tarlov Talk (a general discussion group), Tarlov Alt ( a group that looks at alternative ways of dealing with the pain and problems of Tc's) and Tarlov Support (which is there to vent and generally get support).

The Tarlov groups were set up by a wonderful man in America, Roger Fleischer, and have grown so much over the past few years. There are other Australian memebrs and they might be able to help you find a Dr who does believe in symptomatic TC's, the site also has a welath of information that you can take to your own Dr to educate him about them as so few Drs believe these cysts cause problems. Most of the time they are noted as incidental cysts on MRI's.

I have constant pain in the lower right of my back and over the past 11 years or so this has got worse it is now down my right leg and also in my abdomen, I also suffer, as do many people with Tc's at that level, from bladder dysfunction including blood in our urine.

My problems from the cysts changed a couple of years ago, at one time they were filling with Cerebral Spinal Fluid and causing my back to swell to the point of splitting the skin, now they still fill with CSF but my belly swells instead of my back if I am upright for longer than 2-4 hours sometimes to the point of causing an asthma attack. Not all people suffer with all of the symptoms of Tarlov Cysts.

It is a huge help and relief however to be able to talk to people who suffer with this awful disease. The French government last year, thanks to one of our memebrs Claudine, officially recognised Tarlov Cysts as a rare disease and they are in the process along with a nuerosurgeon in Strasbourg of setting up a Tarlov Cyst foundation to research Tarlov Cysts. So there is hope if not of a cure, as there isnt one, but of a greater understanding of our disease and better ways to treat them. There are surgery options but these have variable results and do not always work the same for all people.

Take Care,
Wendy

Tam

Hi Wendy,

Thank you for your reply. It is nice to find someone with the same problem. It can be hard to live with, especially when the Dr's here in Australia don't believe it causes pain.
I did try to get into the web sight you put up about the tarlov cysts, but it wouldn't go through. Kept saying it doesnt exsist.

Is there any thing you do to help with the pain?. I have 5 children and it does get very hard. I am very lucky that my hubby is great in helping, but I feel bad when he is doing most of the things I use to do easily.

Keep in touch.

WendyFallenAngel

Hi Tam

I know exactly what you mean ref your husband as mine is in the same position, he even had to give up work recently as I need more hep now than I used to. Before my illness progressed like this I used to ten pin bowl regularly and was in a number of leagues, I also held down a full time job. I have 4 chilren, although the eldest at 21 would probably complain at being called a child :), my daughters are 17 and 15 in January and my youngest son is 13.

The website might have been down for maintainance as they have just created an intranet, which is a part of the web that only members can access. If you go to http://health.groups.yahoo.com/group/TarlovTalk/ this is the main discussion group the support group part is http://health.groups.yahoo.com/group/TarlovSupport/ and the group for alternative methods of coping is at http://health.groups.yahoo.com/group/TarlovAlt/

I have recently been using Thermacare heat wraps (which should also be available in Australia they fit like a belt and are comfortable to wear all day, they are not big and bulky either so are ok to wear under clothes. If you want to email me at anytime my email address is wendyfallenangel@btinternet.com

Take Care
Wendy

distressed

Hi,
I also have tarlov cyst disease and am inthe United States. There is a support group in Europe and I'm not sure of the exact address but I can give you an email address to one of the moderators who is a friend of mine. She is in Ireland but can put you in touch with the right groups fro support and information on Dr.s in Europe that treat tarlov cyst disease. Just emal her and tell her Debbie Goetz from USA told you to write her.
Her email address is Sharongillece@yahoo.co.uk

She can give you the right drs or who can tell you about the right drs to see in your country.
This is a horrible, horrible disease but can be treated in fact the formost dr in the world who treats this is Dr. Matroit in Strausburg.

Also togo directly to the European Group go to tarlovcysts.net and you can go into groups and sign in to the European forum.

Best Wishes
Debbie

another Group here in USA you are welcome to join is http://health.groups.yahoo.com/group/straight_talk_tarlovcysts/

just go on and join and there is a wonderful group of people who give support and can help you with questions.

AndiG

I am looking for a doctor in Canada that treats Tarlov Cysts.
I am a 36-year-old female who suffers from chronic neck and back pain. My neck and lower back were fractured 18 years ago in a motor vehicle accident but no x-rays were done at the time and I was never treated.
I have three bulging discs in my cervical spine and am still recovering from a bulging disc in my lower back 11 months ago. My scatica is better although I still have pain in my buttocks, hip, thigh, lower leg and foot, as well as a heavy, uncomfortable numb feeling in my foot.
I just found out when changing doctors that I have a Tarlov cyst that I was never told about. The radiologist thought it was an incidental finding and I have an idea that the doctors around here don't know much about them.
I have researched it myself and it seems pretty clear to me that the symptoms that my last doctor dismissed as 'weird' could, in fact, be caused by this cyst. I am afraid if it goes untreated I will suffer long-term damage.
I am trying to gather as much info before I see my doctor again. I am on a two year wait list to see an orthopedic surgeon, I can't work and due to depression I find it very difficult to take pain medication as it alters my moods.
Doctors have made me feel like this is all in my head for so many years I almost believed that it was. I even had ECT treatments in my early 20's.
As much as my recent diagnosis of the fractured neck and tarlov cyst scares me, I also feel somewhat vindicated.
Now, after reading all of your posts I also feel connected and not so alone.
If anyone knows of a specialist in Canada that I can tell my new doctor about, it would be much appreciated.

Good luck to everyone,
Andi

soraya

You may have to leave the country. There are only two doctors in the world I have found who have enough experience to operate. One is in France. I may not be spelling his name correctly, Dr. Marroit? The other one, who just sucessfully removed my cyst is Dr. Frank Feigenbaum in Kanas city, mo, in the USA. You could send him your films and he will read them and call you back . His phone number is 1-816-276-4000. ask to leave a message with Debbie West. I wish you the best of luck.

soraya

Hello. I wanted to let you know about Dr, Frank Feigenbaum In the USA. He just removed my cyst which was thought to be a Tarlov But instead was a giant mengial sacral diverticulum,with a tethered spinal cord and a limpoma. He has a special interest in Tarlov cyst and does MANY operations on these type of cyst with sucessful out comes. He is in Kanas city,MO. Phone number is 816-276-4000. ask to leave a message with Debbie West, his medical assistant. I was almost sucidal and about to give up hope that anyone could help me,let alone believe that my symptoms where comming from the cyst until I heard of him. I wish you the best of luck.

Donnae

Dear Soraya,
I just read your post about your recent successful surgery by Dr. Frank Feigenbaum in Kansas City. I am sorry to read that you had to suffer with your terrrible medical problem for so long, but am happy that you found the right doctor to help you. You are to be applauded for your articulate description of your personal hospital/surgical experience from start to finish. It really has helped me to affirm that I (too) have found the right Neurosurgeon. I have recently been diagnosed with 5 tarlov cysts in my lower sacrum area, which have been causing me horrible pain down the backs of both legs. I will be traveling to Kansas City, soon, to have Dr. Feigenbaum do my surgery, too. I have had the same good feeling you described with my phone conversations with both Debbie and Dr. Feigenbaum. Thank you, so much for sharing your personal accounts, which surely has given hope many other people, besides me. I wish you a continued healthy recovery and an improved quality of life. Warmest regards, Donna

soraya

I wish you the best of luck, love Soraya.

cosmoly

Has anyone had any problems with their bowels, I have a Tarlov Cyst on my S2, 4.5x3.6x2 and I feel like I have no muscle control when having a bowel movement, it is different than constipation. I have seen 2 neurosurgeons and they both tell me that the Tarlov cyst is not the problem, that these cysts do not cause any problems. Also, for the people who are traveling to Kansas City, is your insurance covering this surgery or do you have to pay for this yourself or does Dr. Feigenbaum have special arrangements for this? Good luck to all!!!!

lewesbeach

Hi,
I'm new to the group but after reading your posts, I feel right at home.
I had surgery for my TC 3 years ago with Dr. Long at Johns Hopkins. Had great relief until 6 months ago. MRI revealed that cyst is back and 4 times larger than the first. Dr. Long is having medical problems himself, so I plan to see Dr. F. in Kansas City.
I also suffer from Chiari 1 malformation, Sjogrens syndrome, and intraventricular brain cyst. Have had one jaw cyst removed, a sphenoid sinus tumor and parotid gland tumor removed at Hopkins. I am not a doc but feel there must be some common thread to all of my cysts. Hopefully Dr. F. will make the connection as everyone else is baffled.
I wish you all a pain free evening.

abigailcaroline

I too have numerous cyts at every sacral level. One was misdiagnosed as an ovarian cyst by an obgyn and removed! Through this horrible event I discovered that I have Tarlov cysts. I have been left with nerve and muscle pain as well as loss of sensation in the right buttock and right posterior thigh. I am wondering if such has happened to any other women out there. I was only 28 at the time. This cyst that was removed was discovered with transvaginal ultrasound during my last pregnancy. The cyst was 6cm. The pregnancy ended with a heartbreaking miscarriage and the cyst was removed a few months later. I can tell you that the way mine was removed is not the way to go. I was on neurontin for 1 yr for nerve pain. It has been 4-5 months now since I stopped taking it. The nerve pain has tremendously improved but I have increasing sacral and posterior leg pain bilaterally. I am awaiting the results of a recent MRI scan to see if the cysts have enlarged. I have an appointment with a rheumatologist to assess for connective tissue disorders later this month.
I will note that I saw Dr. Long at Johns Hopkins in Sept 2008. Honestly, he was not very helpful. He said that it was rare to see a patient my age with the severity of issues. He recommended a neurostimulator for pain control and basically provided the same info that I have gathered from the internet. I do know that my cysts are tracking anteriorly into the pelvis which he said is rare (less than 5 percent of the patients he has seen.) I quizzed him on whether it would increase the size or increase my pain if I pursued another pregnancy as I desperately want a second child. My heart is still so broken with the loss almost 2 years ago now. He really provided no clear guidance. He said that theoretically pregnancy could increase cerebral fluid spinal pressure but has not been his experience. I know that he was vague bec he doesn't want to be held responsible if something went wrong.

I am wondering if anyone out there has gotten any advice on pregnancy with Tarlov cysts?? I am concerned about the size increasing and about pain control as there are few meds safe during pregancy. My pain now is mostly bone (sacral) and muscle that I take NSAIDS to decrease. I did work as a Physical Therapist prior to the birth of my first child and my background has helped me in achieving a diagnosis and with managing my present case. I post all of this to see if there is someone else out there like me. This has been a very difficult road and it just seems that there is not any hope. It has been so difficult to even access quality care! Physicians are not knowledgeable about the condition and make no effort to help you find someone who is!

AnnieRose

hello, i have bilateral nerve root sheath cysts at S3 which were subsequently found in an MRI that was investigating back pain and the sorce of rectal prolapse that i had the previous year. in sept 2007 i had a fall and not long after that i started getting a rectal prolapse. (don't know if it was related to the fall or a coinsedence?) Anyway, i ended up with pelvic organ prolapse and complete rectal prolapse for which i had surgery removing a bit of my colon and fixing the prolapses with many complications in April 2008. The surgeon was unsure whether the nerve damage was due to the prolapse or the cause of the prolapse. i continued to have pelvic floor weakness and lack of anal tone with reprolapsing of the rectal mucosa, so the prolapses happened because of the nerve damage. i also have sciatica and get tingling legs and feet and my toes are numb. They just did the MRI 3 weeks ago but told me it was normal for age. When i got the official report it reported the nerve root sheath cysts, so i guess the radiologist overlooked them as being unimportant. I am waiting to speak to the radiologist and hoping there will be some doctor who could help me here in Georgia. I feel incapacitated with my problems and think it would be difficult to hold down a job as some days are ok, but some are bad. I can not be on my feet for more than 15 minutes without experiencing pain and if i am doing more than an hour of activity, i end up in excrutiating pain. I don't know what to do as i have no health insurance and feel stuck. I can't even get disability as it is not a recognized disease. I have two children and a loving husband who are wonderful and understanding, so i am blessed by that.
I hope you get the help you need.

Maggie2300

Hi Annie

I know just how you feel as I have been thru all sorts or tests and MRI without finding a Dr who care or tries to really help. The one thing you might have a look at if the www.tarlovcyst.net. site, as this has now been diagnosed at tarlov disease, so maybe it could be claimed as a disability.
Cheers

Margaret

tenhundfeld

I too have Tarlov cysts that have been bothering me for years. Last year they became unbearable. I finally found a doctor at a pain management clinic and she has helped me by working with me until we found the best combination of drugs that work for me. I am currently on 300 mg. of Lyrica, 300 mg. of Ultram er and I have Lortab to help if I have a sever flare-up. Hope you can find some relief.

debi4661

Would you please so kind as to email me at my email addres debi4661@comast.net to tell me about your surgery with Dr. Feingenbaum. I am scheduled to have surgery on March 5th and would love to hear about your experience., ie. surgical time/hospital stay and experience and post op, etc.
thank you, Debra Berryhill

Jorja

Debra I sent you a direct e-mail but failed to answer a couple of your questions. I was in the hospital 3 days, I had 3 tarlov cyst and I was 64 @ the time of my surgery so I have managed to stay tarlov cyst free for over a year. I was walking the next day after my surgery with great relief from the nerve pain.

soraya

Please do your research regarding pregnancy and these cyst's. It is not recomended. The cyst can rupture and you could possibly die from spinal meningitis. It can also cause the cyst to get bigger and possibly cause more cysts.There are other ways to have another baby...Maybe a surrogate?Adoption? I was never able to have children, but I do understand that deep need to have a baby and carry life inside inside of you. My heart goes out to you. Sincerly,Soraya.

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