So, this is what happened in January

Heey friends, I posted some things (updates) in january about what happened in january. (sorry for all the messages, I sent them on my phone, looks like a mess on my page). So here is the full story.

The 4th of january I had my third and last embolization. The procedure went ok but after an hour and a half they had to stop because it would be to dangerous to go on. My doctor couldn't reach all the ingoing barrels anymore so this is what he did: he put an announce of glue in the larger ingoing barrels with the goal that the blood would take the glue with and the barrels will trombose itself. This means that not eveything is closed yet, but an MRI will be made later.. and maybe more ingoing barrels are closed by then.

I had some troubles waking up from after the procdeure but I was doing ok. I had to stay in the hospital a few days because I was having fever. On saturday they released me. I was very happy that I could go home but at the other side I was very sad and had to cry a lot. It was like I felt something was not right. At home I had to build of with the meds against edema in the brain. The headaches became worse each hour. On monday I felt terrible, at one point I was in so much pain. My mother called the hospital after like 6 hours of painscore 8 on scale from 1 till 10. And I had to come back. :(
I had morphine at the hospital and tuesday they made a ct-scan and an MRI. They could see that a couple of big arteries trombosed recently, and a little to fast. Because of that I also had edema in my brains wich all caused the pain. They put me on the Dexamethason against swelling again.

The next day I thought I could go home. The doctors where talking about doing an angio because they where afraid that the arteries in my head trombosed to fast, and that healthy arteries could trombose as well (wich could be dangerous). Later they told me that my doctor didn't worried about that. Unfortanately I became sick again wednesday. Terrible headaches and throwing up. Couldn't stand the lights and sound. Even morphine couldn't make me pain-free that day.
Friday I was finally sent home with a new build-of schedule for the Dexamethason.
Once at home I did ok but I still had fever, and I didn't sleep anymore because of this pressure in my head. When I started to build of with the dexamethason things went wrong AGAIN! I felt worse each day and had to come to the emergencyroom for some tests. They put me on Prednisone for 30 days and I am doing oke. But I still have lots of headaches and I sleep bad.

Tommorow I'll meet my doctor again. I am going to ask him what it is that's inside my brain. I don't know for sure how many malformations I have, and if it's an CM, AVM, of davf! I will keep you all posted.

Thanks for the messages during this difficult time. Hope all of you are doing fine.

Greetings Melissa

Hi Melissa! The bing translation does not work all the time on FB but you are in my thoughts and prayers!

Hey Melissa,
Wow, you've been through far too much :( 'stuff' & I hope your upcoming dr. appt. goes well!
Will be thinking of you, sending best wishes, hugs & keeping fingers crossed. :)

Ah thank you both so much! Your messages really helps me trough all of this. I hope my explanation works for everyone. Normally I really take the time for this, but it cost me a lot of effort now. This is not even all, a couple of bad things happened/where said in hospital. I don't think I have to be in the hospital again, and my doctor is great.. else I would have gone to another hospital. So I am curious in how far my doctor is up-to date and what he thinks should happen now.

How are you both doing?


Sorry you're going through all of that. I send my best wishes to you as well.

It must have cost you quite a bit of concentration to bring all of us up to speed on your situation. I hope it did not strain your brain too much. Your situation puts my situation in perspecitve. I just have a bit of nausea from time to time.
We're all thinking of you. Hang in there and update us when you can. George

Thank you Trish! And George we all have our own problems to deal with during our jouneys. I feel lucky to when I read stories about ruptured avm's, craintomy, etc.
I had good news today!! 95 % of the AVM and CM are closed. I will have a angio in 3 months. I think don't even need another treatment again.

I made an apointment for revalidation as well (the doctors wanted me to) because I have some problems with concentration/memory. And I am going to build off with the prednisone. Let's see how that goed.

Thanks and hugs to all of you

Sending you prayers as you continue to recover. I hope your pain is getting better !

Thank you Lisa! It's hard to explain, no day is the same as regards the heahaches. How are you doing?