Occipital Lobe AVM after 3 months

I went to an urgent care on June 26th this year because I had a sudden sharp pain on the left side of my head. I received a CT & they immediately took me to the ER.
They told me I had a bleed in my brain & that was the cause of all the crazy symptoms I was having.
In that moment, I didn't have any knowledge about anything and I mean ANYTHING about brain bleeds except death. Fear ran through my body & I started to cry but was shut off quickly because they didn't want my BP to rise hence they did not know the severity of the bleed.
I got transferred to a hospital that had a Neurologist & Neurosurgeon & stayed for about a week just to rule out the possibilities of cause & for observation.
I got countless scans done & tests but nothing came up.
I left the hospital not knowing what caused the bleed & it was a horrible feeling.

I Thank God the bleed wasn't too large, it did cause me to develop another "blind spot" & I'm just a bit "slower" to catch on to things, my speech is a little off (annunciation), I am more forgetful than I was before & it's just different in general. I am sooooooo thankful that I have been blessed with "Minor" deficits that can be adjusted to.

Throughout these months I had follow ups, CT's, MRI's done but nothing still was visible until my last weeks angiogram!
They found I had an AVM in my occipital part of my brain.
I've been so relieved to know my diagnosis because not knowing something as crucial as this was just killing me emotionally inside & because I'm just the type of person who researches everything I can to understand how to deal with my obstacles. (that is how I fell upon this awesome Facebook page/group)

This past week I already met with different specialists for the possible surgeries to fix/rid my AVM & I decided to do the interventional embolization procedure where they "glue" the ruptured part of the AVM off so blood flow be in existed.
I just wanted to know if anyone has any experience with this procedure, tips or just knowledge about this procedure or anything useful that can help me along this journey!
I'd appreciate tremendously!
Have a blessed day. (:

I’ve also got an avm in the occipital lobe, did you ever have any symptoms before the bleed? Because I’m from Gibraltar which is a small British island (in South Spain) we don’t have the facilities here so I’m being sent to London next week to have the angiogram and discuss treatment options. When are you having emobolisation? Good luck with everything! X

Hi Selina. I'm surprised it took the doctors so long to find the AVM. I'm sure you were incredibly scared and anxious. I would recommend getting at least one other opinion from a qualified neurosurgeon, one that is familiar with the treatment of AVM.

My AVM was in my right occipital lobe. I had a major bleed about 7 years ago. Embolization is generally not used to "cure" an AVM. It is generally performed to make a craniotomy safer. Embolization alone will not get rid of the AVM. I had 3 embolizations before my craniotomy and I am now AVM free.

Did your surgeon discuss having a craniotomy after the embolization?

Selina, I had an AVM in my right Occipital lobe 22 years ago, was a major bleed, and I'm sure they didn't have the procedure that you are thinking of back then. However, I had the craniotomy, I had many of the symptoms that you had, it took a little while and persevered to get my life back. In fact, I started rock climbing and mountain biking and snowboarding after that, and no one can believe I ever had a problem. I hope everything goes well for you, life can return back to whatever you strive for!

Hi Trish!
Wow a major bleed 7 years ago!
If I may ask did you have any deficits from that bleed & if so did they get better within time?
I ask because my vision is the one that got mostly damaged & I’m wondering if it gets better in time even though the doctors keep saying they don’t know because the brain heals itself…
But yes I think the reason why it soon them so long was because my AVM is small & the amount of blood that leaked covered it I’m not 100% sure though.
So since my AVM is a grade 1 both of the neurosurgeons I’ve been seeing reccomended an embolization to cure it but they did advise me if it did not work in 6 months telling, I would have to get a craniotomy.

This is an amazing and inspirational reply. Its people like you that make me want to fight this. You are awesome! Keep up the healthy lifestyle. I can’t wait to get mine back!

Selina, can I ask how old you are and the size of your AVM? Mine too is in the left occipital lobe and I discovered it last march 25th from a seizure. I am 27 as of July and have undergone one embolization. Not a fun experience for me because I hate IVs but they said everything went fine. However, have had similar visions of a seizure and some fuzziness and MAJOR headaches when I stress out so I can’t do that anymore period because the headache lasts an hour and causes visions of my first ever seizure. Have to keep my BP low too, under 120 so I bought a bp machine for $70. I am sorry you suffered a bleed but you seem to be doing ok which I’m very glad because I fear those 24/7 and fortunately haven’t had one from my headaches. I’m on a ton of meds now, mostly to poop lol, the other half is for pain and anti seizure meds that seem to work well. Please let me know about your journey. I wish you the best of luck :slight_smile: stay healthy!

Hey Chelsea so sorry for late response! How has it been for you since your embolization?! I just recieved my first one this past friday. I have such horrrrrrible headaches! The norco does not do squat for me lol. Some have told me ice packs help so ill be trying that tomorrow. Did you have any side affects after your embolization? But to answer your questions i just turned 24 as of oct 1st & i do not know the exact size of my avm but i know its a grade 1.
Through the whole journey i have not had any seizures, yet at least. It sounds so scary to have them. :/
You sound like a very optimistic & brave girl & i hope your brain heals itself with lots of love to get you back to your normal life. ♡
If i may ask, did your avm bust & if so did it cause any deficits?