About 2-3 months ago, through coincidence, a malformation was discovered in my brain. It hasnt bled yet and I am completely symptom free, therefore it has been very hard to grapple with the fact that I have to undergo a very difficult surgery as a currently healthy person to prevent potential disaster in
the future. This whole situation feels like a nightmare, even though I am very grateful that this condition is 100% curable and it was able to be found before a rupture occured. The malformation is about 1,2 cm large and located above regions associated with language. Because of this, it is classified as a case Spetzler-Martin II.
I have spoken with 3 neurosurgeons, all of them (after multidisciplinary counsel) have recommended a brain surgery, as the malformation is located right underneath the bone and is easily accessible. Two of them have pointed out that this malformation, even though is small in size, does pose a significant risk in case of bleeding, as blood flows through it quite heavily and quickly.
I will soon have to make a decision in regards to the clinic and the neurosurgeon. My case is, I believe, comparatively simple and I believe I have a good chance of cure and recovery regardless of where I go. All 3 of the surgeons sounded confident and told me that the chance for a bad outcome was about/less than 1%.
Issue 1:
What is very confusing to me is, that the neurosurgeons have used differing words to describe it. One has called it an “angioma”, one an “arteriovenous malformation with venous sack” and one “dural fistula with associated small arteriovenous malformation”. Does it make a difference? If yes, what are the differences, and do the words used by the surgeons give me a hint as to how knowledgeable or experienced they are? It is very difficult for me to decide for a surgeon and I am searching very desperately for criteria which can make this decision easier for me. Maybe this is one? Can anyone of you shed some light on this? I would be very thankful.
Issue 2:
Does anyone have experience (good or bad) with a specific clinic or surgeon in northern or central germany? There are 2 big clinics in the city where I live (Hamburg) with a good neurosurgical reputation. The obvious advantage of being treated in one of them is the familiarity and the ease of aftercare in case of complications etc. I also have the impression that the 2 surgeons I spoke with in my home town are very friendly and invested in a good outcome. They both took a long time talking to me and explaining everything in detail. They also seem very accessible and confident with the condition. Still, I dont know how much experience they have with cases such as this. One of them told me that I can get it treated well anywhere, as it is not that difficult to operate on. Both discouraged getting treated in different city.
Then there is the Charité, which is a very large, reputable and very well-known hospital (located in Berlin, about 2 hours away). I also have the opportunity to be treated there by Prof. V.., who is a also very well-known neurosurgeon in germany (which doesnt necessarily promise a better outcome). The big drawback of this option is that I have the feeling, that this surgeon and the clinic are very economical with their time. A surgery is already in planning but I was not informed at all about the surrounding examinations or modalities (for example, I am scheduled for a lung screening one day before surgery but nobody has talked to me about the why and how. Also, it seems that having a 1-1 conversation with the surgeon before surgery only happened because I specifically asked for one. From how it feels to me, if I didnt schedule an appointment, I would have just been operated on without ever speaking to the surgeon. It feels very weird to me.) Even though the lack of communication from this clinic is weird to me, the reputation and the experience of the surgeon with cases much more difficult than mine does make it attractive. This surgeon clearly recommended being treated in his clinic, as he didnt seem confident that other surgeons would operate on this case adequately.
Does anyone have an opinion on my case? What exactly is it? Is this difficult, does it require specific knowledge? How to choose a surgeon? Just by sympathy, by reputation, by location? I am thankful for every advise.
above to see if we have any reports on the doctors you’ve seen. We do not allow negative reports on named doctors or institutions because if we did, we might have to allow them a right to reply. Rather, we prefer to keep the forum an informal peer-to-peer support forum with no doctors present, no competition between practices as might well be found in the US, for example. Beware of posts going back more than 10 years: you will be very unlikely to find a patient from more than 10 years ago still actively part of the conversation.