Tarlov Cysts Disease Patient, Stacey, Gives an Update

Read Stacey’s Original Story Here.

Hello to those who suffer from this horrible, debilitating and painful disease. My update since I posted last (which, forgive me, has been a while): I just barely received PCN Medicaid, which is the lowest Utah state medical insurance. It won’t cover the surgery I need. It will, however, help with the cost of medication.

I didn’t get approved for SSDI. The Judge stated that he denied me because my symptoms are not the same. Well, of course I am worse. I wrote letters to all three Utah Senators, and one of them is helping me since they are all upset at the judge for not taking my case seriously even with two doctors backing me with proof of my condition and its limitations. The Senator is trying to expedite my case at the appeals office.

I’m losing feeling in both thighs; I have worsening spinal leaks, and fluid is running out of my nose. My muscle twitches are getting worse, where they jolt me out of bed. Dr. Frank Feigenbaum’s office called about a month ago out of the blue; they wanted me to know that they are still thinking about me and they wanted me to update them on my condition and situation.

I’m trying so hard I try to look at the positives; however, they are getting slim. I feel like they put me in the do not keep her alive pile; so as I continue to pray, I ask for everyone to pray for me also. Thanks for thinking about me. This is hard for me to write, as I am dizzy with muscle weakness. I mostly lay down on a heating pad on low heat since it can be 80 degrees outside and I still feel cold due to nerve damage.

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Global Genes Comments

  1. I too have several Tarlov cysts that were stated as being of no significance…yeah right!!! I not only have them in my sacral spine but my lumbar, thoracic and cervical spine as well. I fell down a flight of stairs in Dec 2016 and within 3 months my symptoms started and proceed to get worse and worse. I went to the ER after a couple of weeks of severe pain, vomiting & a lose of 25 lbs and since I’m 5’3″ 110 that it’s self is a problem. They didn’t even exam or touch me in any way but luckily my sister was with me and got some test and MRI’s ordered. After reviewing my results a neurosurgeon came in and said I was going to surgery but I got discharged with a 3 month follow up. Tried physical therapy 3 time’s and actually made it worse and I’ve been to neurosurgeon 6 times now and I just now a year later got referred to pain management. I’ve never been given any thing for pain only nausea medicine which doesn’t help. I can’t sleep, sit, walk, shower or really any thing. I no longer have a life and literally suffer 24/7. I asked the neurosurgeon about the TC and she basically told me that I was stupid and it had nothing to do with any of my symptoms but yet doesn’t have a logical explanation for any of it. She also told me that they DO NOT CAUSE ANY PROBLEMS!!! Really why doesn’t she take them for a week or two and see exactly how I feel. It’s ridiculously that we have to suffer from this ungodly pain that nobody truly seems to believe is real! I hate to hear that you all are suffering the way that I am but it’s nice to know that it’s not all in my head. Hopefully they will come up with something to help us before we have lost the total ability to function independently because unfortunately I’m knocking on that door and it’s terrifying!!!

    • Hi , I completely understand, I have two Tarlov cysts. Please find a neurosurgeon , go online Cl him out first find the best one, then write to him at explain everything, be sure to send ur tests and diagnosis. You want to ask the neurosurgeon to already see u pro bono (for free) all doctors must do a certain amount of free treatments and exams every year. Just ask him to see if or his diagnosis and recommendations. Hopefully he will do whatever necessary to help you. Nothing but the best you. I just summit red a probono to University of Penn, I have suffered to long, I got fix me sleazy try. These SOB Doctors only care about money, but the real ones will help u. Esp. Universities, the are the best place mail ur request to Neurosurgery Department. Anyone else suffering take my suggestions, we have nothing to lose, and can only gain . Good luck, Iam praying they agree to c me.

  2. santosh khatri says:

    Hi,i am suffering from Perineural Tarilov’s cyst from last 2 months..Its so painful that i can not stand for 30 sec..can’t even sit properly..I am 51 of age.I have been a Mountaineer who has climbed 6 peaks in Himalayas of 21000ft ant a Para trooper n regular trekker,Now you can imagine about me what all am going through now…So can any one advice me that should i go for surgery or any other treatment will work out?..Regards!

  3. My prayers are with those suffering from tarlov cysts. I was recently diagnosed with bilateral tarlov cysts. The neurosurgeon said oh I wouldn’t worry about those. I don’t no the size of my cysts. The pain is real, and keeps me from doin daily tasks. The medications including pain meds help, but I’m still having a lot of pain. I don’t no what’s in my future, it took many drs and about 3yrs to finally get diagnosed. Good luck to you fellow sufferers.

  4. There might be hope for you guys to recover. Here’s my mom’s story. My mom had the same excruciating pain that you guys are experiencing. It started couple of years ago where she had pain on her legs, lower back and later her abdomen. She had difficulty to walk and do simple job at home. She had undergone MRI test, and the MRI imaging showed that she had a big lump on her S2. But of course, like some of you guys have experience, the doctor did not mention about it at all and told her to come back for other tests as the MRI gave lack of information.
    We went home and I finally got my chance to thoroughly read the MRI report. It was mentioned in the report that she had Tarlov cyst. I googled about Tarlov cyst and found that my mom had exact symptoms that a Tarlov cyst patients have. We went to see several other doctors to get second opinion. The doctors told us that the size of the cysts is quite significant (which definitely taking quite a long time to be developed) and it was most probably in my mom’s body since she was young. Since my mom’s had never had any of the painful symptoms before so they had to rule out Tarlov cyst as the cause of my mom’s agonizing pain.
    But I was very determined that Tarlov cyst was the cause coz if it’s other ‘normal’ illness, the doctors would have easily identified it and provide the treatment. All they said is they don’t know the cause and just prescribed painkillers which my mom would have to take probably for the rest of her life. As we felt that modern medicine might not be able treat my mom, we had gone to traditional practitioners to seek treatment. This helps a bit and my mom’s can finally walk but she still needs me to walk by her side most of the time.
    Her condition gets better (now she can do normal housework and looks so energetic) when she started to take a supplement weeks back, introduced by a former patient who was suffering the same symptoms as my mom (but I’m not sure if he had Tarlov cyst, but he had the same exact symptom like my mom’s). The name of the supplement is Cellmaxx. What it does is it activates the body cells to help the body to heal naturally. You can google the name to read more about it. I’m not sure if it’s sold in other countries besides Malaysia. If you’re from outside Malaysia, I can definitely help to buy and send it to you. I’m letting you guys know about this as I know how you guys are suffering so much just as my mom was suffering and I can see that the pain is unbearable. If you more info about anything, you can e-mail me at ainul.r.ariffin@gmail.com. I hope this post helps.

    • Rhonda Crosswhite says:

      I’m wondering what y’all are doing out there since the majority of doctors are now afraid to prescribe pain meds and pharmacists don’t want to fill them?

      • I take Gabapentin and Venlafaxine. I have 9 walnut sized cysts. I currently function as relatively normal with some days being quite tough but most manageable. I am dopey from the meds sometimes but just schedule when I take them. I used to feel like I had a flaming sea urchin up my rectum and my legs, back, and bowels were in constant, unrelenting pain. I have to take larger doses and have never even been someone to take Tylenol. I have to say that for right now it has saved my life. I thought it was colon cancer and had colonoscopies and other diagnostic procedures. They determined it was Tarlov’s and we began a pain management program. No opioids. Few side effects for me. Relatively normal life. Normal can include a few horrible day here and there. I also feel like I need to crack my back all the time but resist bending and twisting so I don’t errode my spine. Perfect? Nope. I don’t leap tall buildings in a single bound. But I can live without crying and desperately trying to do anything I can. I used to try enemas, heating pads, epsom baths, anything just hoping I would come across something that would work. The combination of the Gabapentin and Venlafaxine have really allowed me to live almost normal. I mowed the yard a few days ago. I can sit at work without pacing. I am not constantly agonizing and trying to treat symptoms. Pain management. Not a cure. Not surgery. Just being treated with something that gets me through the day. A big adjustment in the beginning. I don’t always feel dopey any more.

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