For anyone who would like to know more about the "rare disease" that I was finally diagnosed with after two years, I have written this personal report. It's quite long, but it was also a long journey from the first symptoms to the third, but first helpful surgery. Those of you who know me personally know that the first strange complaints and symptoms appeared in the summer of 2021, which became stronger and more extensive with short breaks. The year 2022 was characterised by difficulties walking and the first strange-looking sudden and brief symptoms of leg failure. From May 2023, I was no longer able to work despite taking high doses of painkillers. From early summer 2023, I was bedridden. But the worst thing was the pain, which was almost unbearable.
Some of you have been following my blog, my unsuccessful odyssey from neurosurgeon to neurologist, from orthopaedist to pain therapist. One was as clueless as the other, but most of them masked their ignorance, which often bordered on irritation, with an arrogance that sometimes culminatedin trying to convince me that my body was completely healthy but that I was suffering from a mental disorder. Like most sufferers, I had to find out for myself which illness was throwing my life off course: thanks to the Buddhas, I found a self-help group of people with the same and/or similar complaints, symptoms and experiences on the internet. The self-taught "lay experts" among them have a wealth of expertise and experience and, above all, a list of doctors who might be able to help. However, the list does not include more than 2 teams of doctors in Germany. That's a lot and sufferers come to Germany from all over Europe in the hope of getting help.
The disease belongs to the so-called "RARE DISEASES". This means that it does not exist in the world of experience of most medical professionals, it has hardly been researched, and there are hardly any clinics or centres where those affected can find help. It is a terrible, helpless ordeal that feels like walking through a tunnel at the end of which a light
will never appear. I am writing this on behalf of all those who have suffered this for decades.
Because I was lucky. My odyssey, or rather the horror trip, "only" lasted two years. Then I found help and treatment from one of the two teams of doctors in Germany who are able to diagnose this disease, research it, are in global dialogue with the other few dedicated doctors and try to treat it. One of the generic terms is "ARACHNOPATHY /TARLOV-CYSTS". Many
forms are summarised under this heading, e.g. ARACHNOIDITIS, a chronicinflammation of the soft membranes of the spinal cord in the lower area of the spine. LIQUOR FLOW DISORDERS are also often associated with it. To get a better idea of this condition, let's take a look at the anatomy: The spine consists of 24 vertebrae with their 23 intervertebral discs in between. The spinal cord runs through the spinal canal from the skull to the lumbar vertebrae. And through this in turn runs a tube - the dura mater - in which the spinal fluid - the cerebrospinal fluid - is located, which acts like a
lubricating fluid. The dura mater also contains the spinal membrane, which experts refer to as the arachnoid membrane. And this is where things can go wrong. If, for example, the cerebrospinal fluid builds up in the spinal canal, this creates pressure that eventually becomes so great that the fluid makes its way to the right and left of the spinal column. This then looks like spider webbing. The result is arachnopathy or inflammation, which ultimately leads to scarring and severely restricts movement. Or so-called TARLOV CYSTS filled with cerebrospinal fluid/nervous fluid form. Or, or,or.....
This disease and its various manifestations and extent are diverse and yet extremely rare and little researched. It is often misjudged by doctors, confused with other diagnoses and, in my experience, simply ignored. There are only a few medical facilities worldwide that specialise in this. In Germany, there are at least two clinics and teams of doctors who are
seriously involved in researching this disease and are committed to getting it out of the grey area. The symptoms initially resemble various other typical spinal disorders. For us "sufferers", this usually means the wrong therapy and treatment. A highly recognised neurosurgeon in Berlin wanted to destroy all my nerves and happily prescribed ever higher doses of opiates. However, the longer the disease progresses unrecognised, the worse it gets and then a complete cure is rarely possible.
Most of us sufferers take opiates and anti-epileptic drugs because the pain is so severe that it is almost unbearable. Disorders of all functions below the navel are inevitably the result, as the nerve centre in the sacrum plays a major role and performs important tasks. However, if it is disturbed, stressed or injured, it sends out messages, signals and sensations ranging from foreign body sensations in the buttocks and legs, numbness, and from fire like in a funeral pyre to feelings of impalement.
Thanks to the self-help group, I went to see the team of doctors Prof Dr von der Brelie and Dr Roth at the Johanniter Clinics in Bonn. Their diagnosis: I "only" have arachnopathy, i.e. no acute arachnoiditis (inflammation) but a large number of various Tarlov cysts on the sacrum. In addition, a 5cm long nerve sac bulge on the same side, along with adhered nerves. My 4-hour surgery took place on 28.12.24. The sacrum was "opened" to access the many Tarlov cysts on S1 to S3. These were removed and the openings were taped so that no new ones would form. A thecaloscopy was then performed. Thecaloscopy is a procedure in which a flexible endoscope is used to enter the neural fluid space at the level of the lumbar spine and sacrum in order to loosen adhesions in the nerves. The sacrum was then "closed" again and fixed in place using titanium screws.
It's now a month since my operation (today: 29 Jan 2024) - and I'm feeling better.
The biggest gain so far is that I can practise walking again and the pain has reduced to a manageable level. The false painful nerve signals such as pyre, impalement and foreign bodies in the abdomen, buttocks and legs have also disappeared. There is still discomfort, residual numbness and various dysfunctions in the areas coordinated by the nerve centre at the sacrum, but I am confidently patient. It takes time for nerves to recover, calm down and possibly grow back after years of constant stress and bruising. I am still dependent on care and help. I can't and am not yet allowed to sit,
bending down and the like is strictly forbidden and not even possible yet. The walking exercise is organised in small maximum 20-minute units per day. This means that I spend most of the time lying in bed. As some bodily functions still don't work, there are situations where I need someone to help me at certain times. However, after a month's stay in a care facility, the health insurance company only allows me occasional visits from a carer. - So more or less left alone - I wouldn't make it. And my forearm rollator also loses its purpose when you live on the first floor. I wouldn't even know how to attend the various regular doctor and physiotherapy appointments.
That's why friends initiated an appeal for donations on "GoFundMe". Thanks to your first donations, I was able to move directly from the Johanniter clinics in Bonn to the "Sukhavati - Centre for Spiritual Care" in Bad Saarow 3 weeks after the surgery. Here I can carefully and slowly learn to walk and hope that the other functions and abilities of my body will also
slowly return in a loving, compassionate atmosphere and a perfectly harmonised environment with doctors, nurses, physiotherapists, etc.As the team of doctors in Bonn have spoken of six months in which I could take the first tangible and visible steps towards healing, it would be wonderful to be able to spend all of this time here in Sukhavati.
If you can and would like to help me, that would be great!
You can also share my donation link with friends, acquaintances and on the various social media platforms.
Thank you very much!
I am also very happy to receive your feedback, questions, concerns or anything else. You can write to me on Facebook, for example. There I document my hopeful healing process with photos and films. And here on my website there is a contact form. that you are very welcome to use!
I look forward to hearing from you!
Yours Christine