Hi all, thanks for accepting me in this group. I have already been reading a lot of interesting stuff.
My story:
I am a 70 y.o. danish woman, married, two sons, former teacher.
I have been training my back all my life because I have a scoliosis. In 2016 I had so many pains, that I couldn’t stand or walk, so I decided to see a doctor. I had a MR and it showed spinal stenoses at L4-5. I had an operation 2017 and the sharp pains disappeared. The MRscan also showed two large Tarlov Cysts under my sacrum. Tarlov Cysts are perineural cysts which means cysts with nerves inside. I was told, that they were unsymptomatic.
A couple of week after the op. I heard a cracking noise in my head and felt suddenly “stuffed” and had pains in ear, eye and teeth. I went to the ENT, thought I had an infection, but there wasn’t anything to be seen.
And it got worse! The skin on my face felt “dead” and my eyes felt as if they were popping out of my head. I also started to have pains and weird sensations from my sacrum down to my feet. And clear discharge from my nose. But noone in Denmark believed in symptomatic Tarlov Cysts. After many visits to doctors and hospitals, who couldn’t help me, I finally decided to go to Germany to have the cysts “fixed” - long story, not here and now - the surgery was a succes - from the sacrum and down, but didn’t change the issues in my head. I was told, that there was too much pressure in the CSF.
That all happend in 2019.
As the head issues and nasal discharge got worse I was sent to the hospital - again. They said it was allergy. I asked them to test the fluid from my nose and they said: “oh well, we can do that, if you really want to”.
It was of course CSF.
So, fast forward, the next 5 years was tests, scans and examinations and waiting and waiting and waiting - you all know how it is.
Finally I ended up in the hydrcephallus team, where one neurosurgeon came up with a theory about venous congestion. More scans, a- grafi and so on. Result: My internal jugular vein in compressed between the styloids and C1. So I had the styloids removed, through the mouth, the symptoms resolved for a couple of months, but then they slowly returned. It was the best time, I have had for years!
The vein will not open up, they can’t place a stent because of the C1 and noone in Denmark will shave C1.
So here I am, with half a treatment, looking for a european doctor who can finish the job. I would like to go to dr Axon, but as they are not in EU over there anymore, my hospital will not pay for it.
So: Does anyone here know of an EU doctor, who has experience with the C1 shaving? On the doctor’s list here it just says if they do surgery, not what kind of surgery.
I am sorry for the long post - and the wrong spelling. Thanks in advance.
@titter -
Welcome to our forum. I’m sorry to learn all you’ve been through. I’m also sorry that your insurance will no longer cover you in Britain since we know of two doctors there who do C1 shaving - Mr. Axon, whom you’ve mentioned, & Mr. Timothy.
I hope someone who has experience elsewhere in EU can provide a doctor’s name for you.
Welcome to the forum.
Your story is very interesting, and I’m glad that you insisted on having the fluid from your nose tested and it is great that you at least know what exactly is causing your symptoms. Are CSF leaks still a problem, or has this issue stopped?
Regarding the surgeons on the list, I don’t know if anyone on there will perform a C1 procedure in the EU, as this is rather problematic here. However, two days ago, I read a story about a woman who had a C1 shave done in Düsseldorf, Germany, due to internal jugular vein compression. The surgeon who performed this procedure isn’t yet on the list.
It seems like this surgeon did the procedure for the first time. According to the patient, he claimed it was the first time worldwide, which is of course not true, and that is a bit suspicious, but I think he probably didn’t know better. Nonetheless, the surgery seems to have been a success. I found this story on the website of another professor working with the Clinic Bel Etage in Düsseldorf, which performed the surgery (not the Professor of the website). https://scholbach.de/what-patients-say-continuition#gsc.tab=0:
I do think contacting them could be worth a shot, but you should be cautious, as they probably don’t have much experience with IJVS. However, they have much more experience with other compressions in the abdominal area and are quite famous for it. There are some negative news about a surgeon of this clinic which is doing the abdominal surgerys, but the IJV surgeon is a different one but still you should be very careful. This was apparently the surgeon and the clinic you could contact: Andreas Schmitz - Clinic Bel Etage. I don’t know if it is important to your insurance, but this is a private clinic and only works with private insurances, at least with the ones in Germany.
Thanks a lot for your replies! I will certainly look into it. But I must say that I am a bit scared of surgeons with almost no experience. But it is great with as much information as possible.
To answer your question about leaks: Yes, I am still leaking, and I guess that I’ll have to deal with that when and if the compression is fixed.
Mr Axon in the UK did have a team &I think possibly has done C1 shaves in the past, but I don’t think they’re doing that now…Mr Timothy if you were going to go to the UK would be your best bet:
Mr. Jake Timothy, neurosurgeon, Leeds, Mr Jake Timothy, Neurosurgeon in Leeds | Nuffield Health
This discussion might have some suggestions:
Doctors in Europe who can remove and styloid and shave C1 as one surgery? - Symptoms and Treatments / Doctor Information - Living with Eagle
I don’t know about C1 shaves,but there are some EU doctors who’ve authored papers, if you have the time it might be worth researching them!
Doctors Who Have Authored Research Papers - Symptoms and Treatments / Doctor Information - Living with Eagle
Thanks, great links!