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My Tarlov nightmare

My nightmare began with an accident while on duty in March 2011. I was the passenger in a motor vehicle when the accident happened.

After having an MR I scan done it was reported that I have multiple Tarlov cysts on my spine (too many to count).

I lost my job because I was in excruciating pain all the time. Doctors told me that it was an incidental finding and that Tarlov cysts are not symptomatic. I was devastated at losing my income (I am a single parent and sole provider of my two kids) all the while being insulted by doctors who told me that my pain was psychosomatic. I was called a fake, a pretender and told that i was lazy to work and was pretending to be in pain.

In desperation I Google Tarlov cysts and was directed to the Tarlov cyst Foundation home page. I cried from relief when I read the symptoms. I was not alone - there were others out there with the same symptoms. I contacted Dr Fegenbaum who confirmed that my Tarlov cysts were numerous (He has never seen anyone with this many Tarlov Cysts) and a few of mine are symptomatic. As much as I needed help I could not afford to go for surgery and resigned myself to a life of doom.

In March of this year I was unable to walk and I was advised to see a neurosurgeon. He noted that there was a cyst on my nerve root which had almost completely damaged my nerves. There was a 90% chance that I would be paralysed unless I had surgery done immediately.

The neurosurgeon did what he could but I'm afraid to say that it was not successful as I feel the symptoms returning and each day getting worse.

I feel hopeless and helpless. My life and my kids lives have been destroyed by this disgusting terrible disease. I have no hope for my future.. I pray that God finds a way to help us before many more lose their lives.

I do not know of anybody else in South Afica with this disease and this makes me feel more isolated than ever.

I thank God for my life everyday but have very little hope left for myself. Without help I will not survive. This disease has defeated me.. I feel desolated, cursed, afraid and all alone.

I am praying for you and your family. 

Posted 7 years ago by Lynn

I am so sorry to hear about your pain, Heidi. I can relate to some extent, as I also have cysts throughout my spine. My pain, however, came on gradually over a number of months but then got much worse after I finished radiation for breast cancer last February. I consulted with Dr. Feigenbaum too, in fact I was going to be put onto the surgery list. While waiting to get my surgery date, I tried going on Gabapentin for nerve pain as my pain was just getting worse and I was having trouble walking/standing. By some miracle, this drug has worked very well for me - I know it doesn't for everyone. I told Dr. F's office to put me on hold for surgery for now. What have you tried for pain? Just so you know....you are not alone. I'm not sure how this website works, but feel free to send me a message if you wish. With Love, Heidi in Michigan, USA

Posted 7 years ago by Heidi W

Hi Heidi. So good to hear from you. I live in South Africa, so I'm quite far away from other Tarlov sufferers. I'm currently on Epleptin which is also helping me alot with pain, but it has other horrible side effects: headaches, mood swing, constipation, etc. Doctors here just not sure how to handle this disease. I will definitely find out about gababentine. Thx for the message and please do keep in contact. xxxxxx

Posted 7 years ago by Heidi Sampieri

This disease is absolutely horrific. I know what it feels like to have lost income also, as I'm responsible for 3 kids. Please try cymbalta for your nerve pain.  It has helped me tremendously. You have to keep your spirits up. You have to. Your kids need you. I had 3 surgeries for it. The first 2 were unsuccessful and I nearly died. I ended up with a shunt in my brain and was bedridden for 2 years. Do not give up. I have learned that YOU have to be in charge of your own healthcare and you have to fight through to find a doctor that can help you. This is becoming more common now. I have an amazing surgeon named Dr. William Welch. If you could find a way to the US, he will help you. Google him. I'm praying for you and us all. If you're on Facebook, there's a lot of support groups and I've had a lot of help from there.  Hugs, Shelly

Posted 7 years ago by Michelle

Are you on Facebook?  There are a few sites

for Tarlov sufferers so you don't feel all alone.

Nancy

Posted 7 years ago by N

hi Heidi

 

so very sorry you are suffering so. 

 

i take Gabapentin (Neurontin) as well. 

Its prescribed for nerve pain.

Not a narcotic. I'm 300 mg cap 3x day  

and it does work  YET a 4 yr span now of nerve compression is leaving my L leg nowy R leg weak  Scarey  Bladder bowel affected some  

i'll be praying for you  Cymbalta is VERY hard to get off of and side effects  ugh  

God bless you  

Jean in Florida

 

Posted 7 years ago by Jean

Thank you so much to all of you for your inspirational messages.

Posted 7 years ago by Heidi Sampieri

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