Hello dear people with Huge Good Hearts. My name is Desislava 40 years old and I suffer from a rare nerve disease in my spine - Perineural Tarlov's Cyst.

My suffering began January 2021 after slipping on ice and falling. Immediately I experienced terrible pain in my lower back, I was able to stand up although with considerable difficulty. My legs became clumsy and with each step the pain seemed to get worse. With a lot of effort and will I managed to get home.

Thus began hell for me, with constant unrelenting and burning pain in my buttocks and thighs, severe muscle weakness in both legs. The wandering around doctors,therapies and physiotherapies began. After which I only continued to deteriorate and got to the point of only getting around in a wheelchair. From the very first examination by a neurologist it was found that I had no knee or Achilles reflexes in both legs.

I can't sit straight for more than 5 minutes (my legs just bend), I can't sit sitting for more than 30 minutes, lying..... and it's not painless. In short-no position in which the pain is tolerable. I've become a person who needs someone else's help for everything (we people with rare diseases in this country have no rights, I'm not entitled to either a telc with this disease or an assistant).

And I was a very energetic person who looked to get everything done, I hope to be again! Naturally I didn't have an exact diagnosis. It turned out that knowing and reading an MRI correctly was like being lucky enough to win 6p in the lotto. So on another MRI November 2022 I was read Perineural Tarlov Cyst in the sacral department at S1 level .

So on the internet I found information in "Association of Tarlov Patients" what causes symptomatic Tarlov's Cysts. The treatment is only operative and is done by few neurosurgeons abroad. There is no way to remove the cyst because it is a blistery enlargement coming out of the nerve root full of spinal fluid. This cyst constantly irritates the nerve from which it exits, causing bony erosion and compression of the adjacent spinal nerves, which in many cases leads to complete disability and destructive radiculopathy.In many cases, any trauma can trigger this disease from being asymptomatic to symptomatic - as happened to me. The successful method of treatment is drainage of the cyst and the insertion of a "clamp" at the site of the bubble, encasing the nerve, thus preventing it from refilling.

In Bulgaria there is no neurosurgeon who does such an operation.We took out a loan and I was taken to be examined in England by Dr Adrian Casey, a neurosurgeon, who confirmed that the cyst was causing all this and suggested surgery. The journey was terribly hard, I travelled mostly lying down in the back seat of the car with the risk of incurring a fine somewhere( air travel is also impossible due to my physical pain and another insidious illness).

So far so good, HOPE has emerged that I will be cured and LIVE normally again, not just exist lying still with agonizing burning pain. Then comes the money problem - I don't have that kind of money. Knowing that there is treatment and not being able to afford HEALTH is a big mental blow.

I write these lines already crying...... It's been so long since the day of the fall, every day you gather the strength to endure this day too. I am strengthened by the HOPE that there are many good people who might lend a hand and bring me back to Life. You give Hope, a Chance for Life to many people!

Please from my heart and soul - give me a hand too🙏🙏🙏💜💜

The amount needed for the operation and hospital stay is £42,430 or £96,176.