Going to Freiburg
Professor Horst Urbach is the Director of Neuroradiology at the University Hospital in Freiburg (Breisacher Straße 64, 79106 Freiburg, Germany). This is the largest university hospital in Germany. Although German is the native language, Professor Urbach speaks fluent English, as do the other doctors and most of the senior nurses at the hospital. The front desk and ward administrative staff only communicate in German but the secretaries in neuroradiology can speak perfect English. (See Direktion in www.uniklinik-freiburg.de/neuroradiologie/team.html). They are used to dealing with foreign patients.
Prof. Urbach has authored a number of academic papers on diagnostic and therapeutic approaches to intracranial hypotension, including one published in the August 2014 edition of Der Nervenarzt (‘The Neurologist’). This is where I came across his name on an internet search.
My aim was to find an experienced radiologist who could offer intrathecal gadolinium-enhanced myelography and/or digital subtraction myelography in an attempt to locate my CSF leak. These procedures are currently not licensed in the UK. I wrote to Prof. Urbach directly at firstname.lastname@example.org and he replied (in English) with the suggestion that I undergo a three day investigation study under his supervision at the University Hospital in Freiburg. He also asked for my NHS case notes, which I emailed to him.
I made a private appointment through Prof. Urbach’s personal assistant, Iris López (email@example.com +49 761 270 51810). Iris can also speak English and is very efficient. There is an international patients department (ims.uniklinikfreiburg.de) but I organised everything directly with Iris and the Neurology Department secretary, Petra Lappenbusch (firstname.lastname@example.org +49 761 270 53070). A GP referral letter was not required although I told my GP that I was planning to be treated by Prof. Urbach.
I had to make an advance payment of EUR 5614.29 to pay for Prof. Urbach’s time, use of the imaging equipment and three nights in hospital. This was Petra’s estimate of the total cost. She sent me a letter (in German) with the breakdown of costs and bank account details for payment. Any difference in the actual cost would either be invoiced or credited following my treatment.
I booked flights for my husband and me to EuroAirport Basel Mulhouse Freiburg. I also pre-arranged a taxi to collect us from the airport by sending an email (in German, using Google Translate) to email@example.com (www.taxifreiburg.de/leistungen/leistungen_neu.php). The fixed one-way fare is EUR 104.00 and you have to phone them to make an advance payment using your credit card. There is a shuttle bus from the airport to Freiburg but, because of my chronic headache, I preferred to pay a bit more for a taxi to keep the journey time as short as possible. To meet the taxi driver, you have to take the ‘France/Germany’ exit after baggage reclaim, not the ‘Switzerland’ exit. The drive to the hospital from the airport is only 45 minutes.
My husband had reserved a room at Hotel Stadt Freiburg which is a functional but very pleasant hotel, just ten minutes walk from the hospital’s ‘Neurozentrum’ where Prof. Urbach is based. I stayed in the hotel with my husband for the first night. The front desk and restaurant staff all speak English. Our room 712 was on the top floor (excluding the suites) and overlooking the front garden. The back rooms overlook a multistorey car park.
Hospital Day One
In the morning, I checked in at the registration desk (Anmeldung) in the Neurozentrum. (My understanding is that the hospital has since opened an international patients checkin desk in another part of the hospital, quite some way from the Neurozentrum). I was required to show my passport and give my home address in England. I was given a medical services agreement form (Wahlleistungsvereinbarung, with English translation) to sign, which gave me the details of my contract with the hospital for their treatment and care.
I was given a wristband to wear, which had my personal information written on it.
My husband was given a family certificate (Angehörigenbescheinigung) that entitled him to a discounted rate at Hotel Stadt Freiburg. The special rate for a double room for one night was EUR 118.00 (2-person occupation) or EUR 86.00 (single occupation). This is a standing arrangement between the hospital and the hotel.
I was then taken to one of the hospital wards (‘Station Hoffman’ on the 3rd floor) where I was placed in a two-bed room. (A small number of one-bed rooms are available if you prefer not to share. The room has wifi. The food is pretty grim, much worse than NHS.)
Almost immediately, I was transferred in a wheelchair to Professor Urbach’s office on the ground floor. He was a gently-spoken, patient man who asked me about my medical history, the reason for my ventricular shunt, and my current symptoms. He then went into some detail about his proposed investigation.
He was extremely knowledgeable about CSF leaks, both in terms of detection and treatment. I asked if he was intending to do a digital subtraction myelogram (DSM) with general anaesthetic, but he reported that in his opinion the resulting pictures were not as clear as the pictures produced by a fast CT scan (as performed by Dr. Linda Leithe-Gray in the USA). Therefore, if a diagnostic myelogram did not show a leak, he would then perform a fast CT scan with intrathecal gadolinium enhancement.
Prof. Urbach’s plan was to start with a full spine and brain MRI scan (no contrast dye) to see if any CSF leaks could be detected. That was to follow our meeting. He said that day 2 would involve a diagnostic myelogram with iodine contrast, using a tilt table to disperse the dye. Depending on the outcome of this test, day 3 would most likely be a second myelogram with targeted blood/fibrin patching of the leak sites. He said that blind blood patching was too speculative because there was little evidence that the blood flowed consistently to the leak site.
Prof. Urbach said that any meningeal diverticulae could be a possible location of CSF leaks but that many patients have such cysts with no leak symptoms. His main concern was whether the leak site would be dorsal/posterior or ventricle/anterior (i.e. on the back-facing side of the dura or the side facing into the body). It is much harder to treat leaks on the side of the dura facing into the body. He gave a couple of case history examples (patient from Canada, patient from Italy).
There was no need for me to stay in hospital as an inpatient on day one but I would be required to spend the following two nights on the ward. And if a blood patch was performed, I would spend 24 hours lying flat in hospital and then a further three days resting at the hotel before flying home.
I was taken for an x-ray to check the calibration of my Miethke proGAV shunt. One of Prof. Urbach’s assistants (Karim Eid) then explained (in perfect English) the procedure for an MRI; a standard safety talk similar to the information provided prior to an MRI in the UK. The vibration of the scanner was quite intense, as was the heat from the scanning mechanism on my back.
Following the MRI, another doctor (Dr. Christopher Beck) then described the procedures that I would undergo on day two. This was a detailed discussion, and unlike my experience in the UK. I was also shown the room where the myelograms would take place.
Finally, I was taken back to the Hoffman ward, by a lovely English-speaking secretary (Oberarztsekretariat) called Mara Güntert (firstname.lastname@example.org) who explained to the ward staff that I needed bloods to be taken. I waited about 10 minutes and then they were taken by an English-speaking phlebotomist. This was to check for thyroid hormone levels and haemophilia. Abnormal samples would increase the risk of adverse reactions to the myelogram.
I was then free to go back to the hotel to stay with my husband for the night. It wasn’t necessary to stay on the ward.
Hospital Day Two
I reported back to the ward at 7:45am and by 8:30 I was being wheeled in my bed to the myelography room.
Dr. Urbach himself performed the myelography, which took about 40 minutes. He was assisted by a team of four doctors. He used a contrast mix of 0.5ml gadolinium with 15ml iodine. This was injected, slowly and under xray guidance, intrathecally in my lower lumbar region. The table was tilted and I felt an explosive pain when the contrast ran into my head. The staff were very sympathetic and gave me some time to settle. They had their backs to me and were continuously monitoring the xray images to check that the contrast had spread along the length of my spine.
After this I was wheeled down to the CT scanner where images of the dural sac and meningeal space were made. This took about 5-10 minutes.
After this, I was wheeled away for an MRI scan. (Note that the gadolinium and not the iodine would show up on the MRI images.) The MRI was long, about 1 hour and 40 minutes.
Prof. Urbach came to visit me after the scan. He said that there was no evidence of any leaks on any of the images. He observed that I had many (>15) meningeal diverticulae (MD) which were small but he could not see any leaking at the MD locations. There may still be a possibility of tiny leaks at the sites of the MD that were too small to be seen on the images. He noted that the dural sac was belling at its base, probably because of the tissue elasticity due to my Ehlers-Danlos Syndrome (EDS) Type 3.
We agreed that he would carry out a blood patch tomorrow to target the MD. I mentioned the technique used by Dr. Gray-Leithe which involved guided patches at each of the MD locations. Prof. Urbach had done this in the past did not think that there was much evidence that this technique would be more successful in my case.
I was taken back to the ward where I was later visited by the head of neurology, Professor Sebastian Rauer, accompanied by Dr Cornelia Fischer. They were very nice but Prof Rauer explained that the lack of evidence of leaking from my diagnostic images meant treating me with a blood patch was speculative. Dr. Fischer told me that my blood tests yesterday revealed that I had an underactive thyroid (like Mum).
Hospital Day Three
I discussed with Prof. Urbach the alternative of a single blood patch at the L1 level with contrast material (his preferred method) or guided blood patches at the location of each meningeal diverticulae (MD) (my suggestion). In the end, I opted for his method.
The procedure was performed in the CT tomography room around 9:30am. Prof. Urbach injected some contrast material into my dura and monitored its dispersal, which was aided by tilting the table.
The purpose of this was to check that the blood travelled to the site of the cysts. Inserting the line into my back was very painful in the insertion area, in my stomach and down my legs.
Before Prof. Urbach arrived, my right hand was cleaned and gowned, a cannula was inserted and the assistant doctor drew off four large vials of blood (about 40ml). Prof. Urbach injected this gradually and alternately with contrast dye (iodine again) all the time monitoring the CT images to check that the blood had flowed up the spinal canal.
Once Prof. Urbach was satisfied that he had injected as much blood as was possible (when I could bear the pain no longer) he removed the epidural needle and I was taken for a 5 minute CT scan.
After the CT scan, I was asked to lie flat and still for one hour. The whole procedure took about an hour. Prof Urbach said that diamox could be prescribed if I had a high pressure rebound headache. I was then wheeled back to the ward. The nurse on the ward gave me an injection of MSI (liquid oxycodone) in my stomach to reduce the pain in my back and legs.
I was visited again by Prof Rauer and Dr Fischer. They said that they had just had a meeting with Prof Urbach and reviewed the images. Since yesterday’s scans showed no evidence of leaking, it was difficult to predict if the blood patches would work. Prof Rauer said that the CSF pressure that they measured (15) was normal.
I agreed that Dr Fischer would write her report in German.
Dr Fischer asked if I had tried theophiline. No, but I had had a caffeine infusion. I had been informed that theophiline took 6 months before it had any effect. At the time it was thought that a caffeine infusion would be faster (although it was ineffective in my case).
NB. In the UK you are normally asked to put on a hospital gown, compression stockings and paper knickers before being taken down to theatre for treatment. Here, I was wheeled down wearing whatever I had on at the time (1st day my dress and 2nd day my pyjamas).
When I arrived in theatre I was asked to remove my clothes, leaving on my own knickers, and put on the gown in front of everyone who happened to be there, male & female. I didn’t care by this point, but if you would be uncomfortable in this situation do make sure you ask to change in private!
It was also interesting to see that, although all the staff wear white jackets (sleeves rolled down which you wouldn't find in the UK), underneath they tend to wear very casual clothes t-shirts and jeans, some torn, some not!
Hospital Day Four
Treatment had finished so I left hospital mid-morning to return to the hotel with my husband. Prof Urbach agreed to see me at 9am on day seven (Monday) before my flight back home. The discharge procedure was quite informal I just informed the ward staff that Prof Urbach had said I could leave and they said goodbye to me.
Prof. Urbach told my husband that, according to my images, the blood patch had not reached the very top levels of the spine. (It would have done, had I been able to bear the pain.) However, he said that the volume inside the dura would be decreased by the scarring catalysed by the blood patch. He thought that this might give me some relief.
I spent the rest of the day in the hotel room catching up on sleep. My back was extremely sore.
Hospital Day Five
Lying down most of the day although I did make it down to breakfast.
The nature of the headache pain has changed. It is now slightly worse when I lie down. Possibly a high pressure headache following the blood patching? The dominant pain though is in my back.
Slept OK. Husband went sightseeing in Freiburg.
Hospital Day Six
Another day of rest in the hotel room.
Some nausea but otherwise same as yesterday. Headache is 3/10 on the pain spectrum when I’m sitting up. I have halved my dose of morphine to 5ml.
The pain in my head is less when I stand. It gets worse when I lie down. This is the reverse of my normal symptoms.
Hospital Day Seven
Met Prof. Urbach in his office at 9.00am. I informed him that my headache had diminished. Headache is 3/10.
He was pleased to hear that the blood patch has had a positive effect. I explained that my head was worse lying down now. He agreed that it was a high pressure reaction. He suggested that I should wait three months, see how it goes and then repeat the blood patch, if necessary. He advised against taking diamox because it would cloud analysis of my recovery.
Prof. Urbach said that the scan images showed that my blood patch travelled halfway up my thoracic spine (about T6). I had about 20 meningeal diverticulae (MD).
He was against injecting targeted blood patches at every MD location. He said that he preferred his method of patching the epidural space and controlling the flow of blood up the spine. He argued that this method would ensure that the branches between the thecal sac and MDs would also be sealed.
He also said that he only used fibrin for localised patching as it does not flow. He would inject fibrin only if he could positively identify a leak site. Each injection costs 500 EUR so it was not a treatment to apply speculatively.
I asked Prof. Urbach if I could recommend him to my fellow patients. He said yes but cautioned that it is an imprecise science.
My husband has suggested that I keep a lid on my optimism. However, the immediate signs are encouraging.
I was given a CD-ROM of all my scans.
Back to the hotel to check-out and fly home.
Final note: I started taking Diamox at the rate of one quarter of a 250mg tablet 4 x daily on Thursday 1st October. It has made an incredible difference. I can now be upright for as long as I’m not tired. I was still taking all my painkillers after the trip, but the difference was that they now totally controlled the pain. I remained on them for another few weeks before coming off them slowly; Prof Urbach warned me to take it slowly so that my body had time to compensate for the sudden HP, as we know that my rate of CSF production was much higher than normal - probably as a result of my body trying to heal itself or compensate.