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. 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!

  2. 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.

  3. 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.

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