newly diagnosed
 

Hi. My name is Shelly and I was just diagnosed with Tarlov cysts. I'm feeling frustrated, mad, while at the same time ecstatic that I'M NOT CRAZY! I currently take Celebrex, Requip and Tramadol for the pain. Not sure any of it works. I started Lysine today. Was told that there really isn't anything that I can do except go to a psychologist and learn pain management mentally. Going to neurologist this Thursday and am going to present my findings on here. I have little kids, a part time job, and I'm only 37, which I was also told that I'm very young to have been diagnosed with these. Worried about how I'm going to feel when I'm 60 when I'm in this much excrutiating pain at 37. Thanks for listening.

I understand your fears just got the news myself....... It like what now??

There is a wealth of new information on the tarlov cyst foundation website.

who are you going to see in FL?
 

I have tarlov cyst as well. Was diagnosed in June 2012 - cyst is 1.5cm at S2. Pain sitting and lying on my back, mostly. I also have right arm pain on right side. NS said that is from stenosis at C6. There is also a small TC at L5 but he said to leave that. He also said I have tethered cord, which is a birth defect similar but not as bad as spina bifida as the cord is not outside the body at birth but inside, though not ending at the correct place. He suggests to clip it while he does the laminectomy for the TC. He is a NS in Maryland. There is another in Dallas. I have only found a few NS in the country who are willing to do this surgery and only major two hospitals in CA who are willing to let NS do their surgeries there. On the east coast, as far as I know, Johns Hopkins, Georgetown and others do not allow this surgery due to risk management.

I sent my films to a NS at Penn and he agreed that I have these problems but declined to do the surgery. I have not found anyone in FL. I am moving to FL in Nov due to my husband's health problems - will be near Mt Dora. Shands doesn't have a NS who would do this. Nor does Mayo in Jax. U of Miami is a possibility but I think the NS there doesn't do laminectomy - only fibrin "glue" procedure which I have read does not really work. I am really worried that I will be stuck with pain management the rest of my life if there are no new discoveries about how to treat this problem.

I don't know if I should name the docs here or if you should PM me.

Suz

I believe that I may have a similar problem and would like to get more info from you regarding steps that you have taken to get a diagnosis. I sent a "friend request" because I don't see where the private message option is.

This forum has been so helpful in finding information! Thank you everyone.

Newly Diagnosed
 

Hi Shelly. I'm newly diagnosed too. Also a 37 year old mom and share all your same worries and fears. I'm still navigating a lot of testing and doc/specialist visits trying to rule out MS and Lupus right now, so finding these cysts on my spine is...well I guess it is what it is. If these cysts could be causing all my other symptoms, I'm happy to know what it is and try to move on from there. But if this is in addition to MS or Lupus...well, I can't go there right now-it's just too much. Anyway, just wanted to reach out-this is my first time joining one of these forums and posting. I don't see a lot out there about Tarlov Cysts and alternative therapies or non-western approaches. I am currently seeing a therapist for pain management, getting massages as often as I can afford, and receiving acupuncture treatments weekly. I do yoga, and am learning to meditate. I wondered if anyone has found any info on dietary changes or supplements that might help?

Also living with epineural or "Tarlov" cysts.
 

Hi Shelly,

I've been in extreme pain for the past two years and recently found out in addition to the herniated disc and spinal canal narrowing that I also have one of the perineural cysts. Mine is located at the L5-S1 area which is the lower back right above the tailbone. I am actually newbto this forum and havnt posted anything yet but when I read your post I had to respond because my experience has been similar. Two years ago I went to see an orthopedic surgeon because of the intense pain I was in. He orderes an MRI and said I had a herniated disc that needed to be operated on so I had surgery to remove part of my herniated disc because of the intense pain I was in. Afterwards I was still in extreme pain and at my post op visit the surgwon became confrontational and told me there wasnt anything else he could do and discharged me as a patient. I spent the next six months in agonizing pain having no idea what to do until I finally went to see my family doctor and she prescribed me 30 mg oxycontin xr tablets twice a day. These held my pain back for about a year until recently the pain began to become intolerable to the point I was almost suicidal. My family doctor ordered me to see a pain management specialist who reviewed my past MRI and told me that the previous surgeon failed to tell me about the perineural cyst. So he prescribed me some Lidocain patches to be applied in the area I had the surgery at and that I need to have an expedited MRI and CT scan to see how the cyst has progressed and if any other issues have arouse from the prior surgery. This was three days ago when I saw the pain specialist and these lidocaine patches have helped. Im still in pain but its not to the point of being hopeless. I would highly reccomend asking your doctor to let you try these patches, they are non narcotic and are similar to novacaine like dentists use. I go to see the specialist again thursday and will give you and update of what he reccomends. Like a previous message states check out the foundations website to get more information abiut Tarlov cysts and possible treatments. Most doctors will not recommend surgery unless they are actually permanently damaging your nerves or other organs but if they do recommend it make sure its done by a neurospine surgeon.

tarlov
 

I am in the same boat as the rest of you, what I would like to know is how to they know what permanet damage is. Right now both my feet and half way up my legs is numb and tingling and both my thighs have extreme pain to the point that when I walking I just can't go any further and have to stop. All I want to know is if this is caused by the tarlov but doctors around here won't recognise it. I don't have the money to travel around the country to see doctors. Does anyone know if there are any doctors who actually belive in tarlov cyst that will be willing to look at someones MRI before seeing them in person? I would be willing to go to a doctor here and have one done if I knew someone would look at it for me and diagnos me or at least tell me that it could be caused by the cyst.:grouphug:

Katt17

We have a neurosurgeon who is going to operate on Timy's. T.C. She has been in pain for 5 years and no one could find anything wrong with her. Dr. after Dr. and test after test ..then they sent her to pain management, physical therapy and a shrink! Now it has been found. A T.C in her tailbone area. The op is not without risks but she can not stand the pain another day and is willing to take the chance. I am scared! She is 50 and I am 70. She is single and lives in my loft. She is scheduled for Dec. Some of these cysts can affect the nerves in the spinal cord. Her pain goes from her left butt cheek to her thigh and down her leg. Her inner thigh and some of the back of it is numb. Her leg has dropsy sometimes and she stumbles because it just doesn't feel right. She can not sit or lay down for long periods because of the pain. You can not spend your life standing up! Good Luck to you. I hope you get some answers and relief!
J for Timy

How is Timy?
 

By now Timy should have had her surgery and I am wondering how she is doing? I am a 59 year old female with bi-lateral Tarlov cysts at S1. I will be having an MR Neurograhy in a week and will find out if there are more than just the two the MRI found. Can you tell me who her doctor was and if things have improved for her.

New diagnosed / Need of Understanding
 

Hello, I have been chronic pain sacral and cervical -no prior L-Spine .Cervocal c6/7 Narrowed now.I have psoratic Arthritis , pain and fatigue for years . The TC was discover after I working out at gym -Just was walking ,I sudden pain in mid back like knife.The spasms started all muscle in back and Abdomen -Never have stopped.Seen Neurologist as Primary has never heard of TC and Neuro says suppose to be asymptotic .Sent report to University of MD , Neurosurgeon willing to see me and I am awaiting T Spine since mine are L-1 and T 10-11 .My issue is no one can tell me : 1. Am I tired due to TC ? -Became suddenly tired and no gym now. 2. Do they react like MS or neuro condition disease ? 3. Why would doctor dismiss these TC ? after all I work out everyday despite chronic C-Spine and Sacral issues .Now I went from walking to weakness left leg and pain left mid back to butt into bladder n **** spasms .Like someone has taken over my body .Getting abdominal spasms as well.. I understand nerve it travels fires the muscle.The doctors are playing this down.Very frustrated that this has impacted my life so suddenly.Does this mimic other Neuro diseases ? Thank you

Me too
 

Hi, I was diagnosed in 2011 while being treated for cancer. The chemo made the TC worse even though I had been having issues for years, I didn't know what it was until having a CT for the cancer.

I have seen a few NS the most recent today. He was very nice but said that TCs aren't usually symptomatic and began talking about a plan for physical therapy and steroids for a disc issue seemingly unrelated to TC.

It's so frustrating to know more than the doctors about TCs and try to tell them and they seem to not get it.

The first NS I went to yelled at me "What do you want me to do about it? It's full of spinal fluid and blood vessels!"

I had another MRI done last week and now am scheduled for another two next week. I insisted that it be done because I can tell there are more issues. I know I get fluid imbalances and fear leaks because of the headaches.

I found out that the pain in the middle of my back is another TC and the one in my sacral area is now over seven centimeters. That is a HUGE cyst and I think it scares the doctors and that's why they seem to want to avoid it.

To be told that I'm not having symptoms when I have had so many and some severe and terrifying is maddening.

Thanks for listening.

Dr. Frank Feigenbaum in Dallas. He is specialist for TC.

I second the recommendation to see Dr. Feigenbaum.

It is hard to find any doctors that have experience with them even at top care centers. I saw Dr. F before being seen at the Mayo Clinic for Tarlov cysts and other issues and am thankful I did.

It is also critical to find an open minded doctor to help with pain care. You aren't crazy, just in pain. And the pain is real, not something in your head.