I have almost died in 2014. Let me tell you my story. I did workout some cardio activity on bike and then I was supposed to go to my work and I was under stress. I was a bit nervous I took a cigarette after workout and very busy dehydrated.
After 5 km riding I got strong tick inside my head during riding my car. I have suddenly stopped my car and asked guys staying next to road to call hospital.After 5 minutes I lost my awareness feeling strong ticks inside my head.
Neurosurgeons treated my head and they dried bleeding and implemented Codman shunt inside my head.
Shunt was not set properly so I could not eat, piss or use toiled. I was totally depend on nurses.
Then I undergo therapy by gamma knife in Prague. Neurosurgeons did angiography and aimed gamma knife to my malformation. Since then I was better.
I am supposed to go in 2018 for check to their hospital. My neurosurgeon has told my shunt does not seem work. I am thinking to remove my shunt. I would like to ask professions audience if it is good idea to remove shunt after years when vein malformation gone??
Any advice would be welcomed.
Welcome to the forum! You’ve been through a lot with your AVM!
You need to talk to your doctor for professional advice. On this forum, we are “peers”, friends, people like you with similar problems.
From what I understand about hydrocephalus, it could be an ongoing problem that needs management of some kind. Even if your AVM has been shrunk by radiation, it may be that the bleed that you had has caused your hydrocephalus rather than the AVM. So even if the AVM is fixed, it might be that the hydrocephalus is not.
What is it about your shunt that is not working properly?
Dear Dick thanks for prompt response but would you be so kind and give me backround what is difference between AVM and hydrocephalus?I have both. I will go next year for check up at Prague clinic so I am curious how it will go. But anyway I feel good at strong power!
An AVM is a bad connection between the arteries and the veins. In your case you had an AVM in your head but they can be in a number of places. The trouble with an AVM is that the blood pressure in your arteries is high and your veins are not designed for high pressure. So, if you have an AVM, the vein can burst, leading to a bleed, like you had.
Hydrocephalus, so far as I know, is to do with a build up of cerebrospinal fluid in your brain. Sometimes people are born with Hydrocephalus and sometimes it is caused by an event, for example a bleed.
I would guess that your AVM bled into the space where your cerebrospinal fluid is supposed to be and the blood has partially blocked where the fluid drains. So, the doctor has given you a Shunt to automatically drain when the pressure in your cerebrospinal fluid is high. High pressure in your cerebrospinal fluid is not good for you, so it its important, I think, to ensure you have the right pressure.
I don’t know what a codman shunt is, so I Googled it. It sounds like a very clever piece of kit that automatically manages the pressure. It may be that the settings of it ought to be changed or it might be that the doctor thinks something else.
What has he or she told you about why it isn’t working properly for you?
Hi Dick,
many thanks for clarifications about AVM and hydrocephalus. My shunt is Johnson Controls codman model set to 120 hgmm presure. I had last check at neurosurgeon and he has told that my shunt is dead not working. I am thinking to remove that by one day surgery. Part of neurosurgeons have adviced is not good idea another part thinks it can be removed if gradually is deactivated by magnetic field and no side effect on health condition seen. If somebody has experience with removed shunt I would highly appreciate for any advice. Best Regards, Andy
When do you get to see the doctor next? Are you OK about either having a replacement device or having it out?
I don’t know anything about shunts but I can see if it is dead, it is no use to you. I would have thought if it is dead and not managing your pressure and yet you’re not having any side effects, then it seems possible that you no longer need it but I don’t know if any side effects or implications show immediately or over a very long time, so you’ll need to understand what the neuros advice is. I can understand a plan to reduce your dependence on a shunt, prior to removal and a programmable shunts would be an easy way to manage that transition, I think, as it can be adjusted from outside.
Let me know how you get on. It is very interesting to learn about intracranial pressure and how it is managed.
My check up will be next year at Prague neurosurgery clinic where they applied gamma knife treatment in 2015. I mind shunt from cosmetic point of view because of I have certain bulb on my head and I am beeping on airport scanners. Neurosurgeons have told they will do angiography screening to see if malformation gone from broken blood vessel. But as I told on last Xray scan of my head neurosurgeon told that shunt is not working. I will keep you posted. Anyway my neurosurgeon said I had luck and just 10% patients recover and survive after AVM and hydrocephalus. Is it true gents??
I don’t know the stats for a combination of AVM and hydrocephalus but if you’ve got a lucky streak, that’s great!
Remind me again when you get near to your date and I’ll be keen to wish the best for you as you go into your appointment. I do understand the lump and the beeping but if it keeps you much more healthy, it might be worth keeping. You need one that works, though! Otherwise sounds pointless.
I am interested how is common Lekssel gamma knife in US. I was said that gamma knife is rare and just couple of best clinics in Europe has gamma knife. I was in waiting list one year for such treatment. How is difficult to get gamma knife treatment in US?
Yes you are highly developed in US. Gamma knife treatment is covered from mandatory health insurance but insurance companies plan budget and patients must wait until they are ready. In my case waiting was 1 year after approval of insurance company. In US is quick process when Gamma knife is required or recommended? Do US citizens have to pay gamma knife from own pockets or it depends on level of health insurance and type of policy?
@andy220
Hello and Welcome to the site
Here in the US normally if a doctor recommends this treatment then our insurance pays for it.
I did not have to have gamma knife but I see Dr Michael Marks at Stanford who is the founder and head of neuro radiology. Also Stanford has great financial aid.
I am sorry you have to wait. People here in the US do not understand this part of your medical insurance.
When my avm DAVF was found in late Oct 2011 I had my first angiogram and embolism Jan 5th 2012. It grew more complex in just those few months.
I had lots of pressure already from 5 blood clots in my brain and I was bed bound most days and still have 24/7 head pain from my rare stroke (5 blood clots) that then caused my avm.