My story so far

Im sure there are quite a few of you who wonder what happened and want the full story. Im going to give you a short story that lasted about a year and a half. This story will be short but there is no way I can express the physical and emotional toll it took. So bare with me.

It all started August 31st 2007, I was sitting at the car wash across from Hoag Hospital on Superior. I was reading the newspaper and patiently waiting for the car to be finished. Suddenly I had a blind spot in my vision. Within 2 minuted that spot grew quite large and was like flashing colors. red, orange, green, blue, etc…It was quite a trip and also scary to say the least. Well, I got up and walked across the street right into the ER. As soon as I walked into triage I was completely blind, I was yelling that I was blind and starting to go into shock. They were trying to calm me down while placing me in a wheelchair. I was laid down in a bed and strapped up to wires and machines and needles and oxygen. The hospital was expecting a stroke. 45 minutes later BAM! my vision comes back perfectly. After my vision came back I was in tears by how thankful I am that I could see. I really enjoy scenery now.

Now, if anyone wants to know what it is like to be blind I will describe it. I would guess you would imagine everything would be dark or black but its not. It is a pale flesh color. Colorless I guess you could say. Pretty creepy. That was the beginning of a long battle. At the time I was living with a boyfriend and working for a tanning salon. Obviously I quit my job because I knew something was horribly wrong and I needed to spend all of my time figuring this out. The docs at the ER told me to go see a neurologist. That I did. However, I did not have insurance. I went to a free clinic who send me to a free neurologist. HAHA what a joke! She sent me through an MRI with NO DYE. Any medical professional knows that if they are searching for an aneurysm you have to use dye to see it. Well, they did not see it. So the neurologist told me that I get “visual migraines”. I knew that was wrong. I searched online my symptoms and it always came back saying aneurysm. I knew in the pit of my stomach that is what I had so I had a huge sense of urgency to find it because it is like a ticking time bomb that can kill me at any time.

So, I realized I needed to go back to work to get good insurance to keep fighting the battle. I got a receptionist position (for the lack of stress) and 4 months later got insurance. As soon as I got the insurance I went and saw 4 neurologists. I was mis-diagnosed by all of them. ALL OF THEM. They wanted to put me on headache medications and epilepsy meds…it was ridiculous. I told the docs that I would not take the meds without a CTA first. I was denied by 3 of the doctors saying they would put their profession and even WIVES (not kidding) on the fact that I don’t have an aneurysm. So, on to the 4th neurologist…I told this guy that I want a CTA and will not cooperate or go forward without it. He agreed with one rule, that “when the test comes back negative I have to take the meds that are prescribed” I agreed. Finally, October 1st 2008 I got my diagnosis of a 3MM aneurysm right behind my left nasal cavity.

At that point I wanted to go scream in everyone’s faces that didn’t support me or doctors that wasted my time. I went directly to go see Dr. Kim from the Greater Newport Physicians Neurosurgery. He suggested what needs to be done and I knew I had decisions to make. As I left Dr. Kim’s office I caught wind by a friend of mine that that neurosurgeon had botched up his fathers brain. I felt sick inside. I had to get a second opinion and doctor really fast. I called my dad and he made a few phone calls and got the number and access to one of the best aneurysm surgeons in the country. The downside to this was that he was out of the UCLA medical center in LA and I had an HMO with the network being out of Newport Beach. I called every doctor I had seen and asked for a second opinion outside my network. I was denied by everyone and their mom. By this time I was so emotionally strained by the fighting day by day that I had to do that I turned into a pit bull and set everyone on fire until I got what I needed. I was calling everyone everyday and asking to speak with someone higher. I eventually went around my network and right back to my insurance company. I told them I was being denied and apparently it was illegal for them to do that to me. My insurance company got on the phone with them and reamed their asses. It was amazing. Finally, someone was fighting for me. My insurance company approved me to see the out-of-network doctor. ugh!!! the fight was over. I finally got to see the surgeon and got a date set. I am sure that this will be the hardest thing I will ever go through. If there is anything I can say to everyone is that I want you to be thankful. When your depressed, sad, crying, sick…just think about what you could be going through. Think about how healthy you are everyday. Thank god for it.

Thanks for listening.

gee you have been through alot…glad you are here to share your story

You get your operation on my 50th birthday. You are a fighter, you’ll do fine.

Peace,
Ameenah

Talk about tenacity. I’ve read so many stories about insurance problems and the like. I’ll remember to send everyone your way for a tutorial on this stuff. Great job!

I’m proud of you for sticking up for your health, Krystal. Well done!

well done krystal. i read your story with great interest, as i had to fight all the way to get my son’s avm dealt with quickly. you are a strong girl, i wish you well and i know you will get through this. will watch your page with interest. keep strong xxx

which hospital are you going to? I went to USC-county. It is the best hospital , I had AVM and 2 aneurysm. I had no insurance and cannot afford it. I had been well taken care. County hospital may be not the best place to stay, but the medical team is the one who save my life. Just want to say thank you again.

Wow, Krystal, that’s a wild story, and a lot of it wounds remarkably familiar. Take a look at my profile and my blag when you get a chance. I had an AVM, the real trouble started while I was living in Costa Mesa, was admitted to Hoag, met with a few surgeons before being referred to Dr. Kim. He is the guy that performed my surgery and did a great job. Based off of the info I got from my consultations with the other neurologists, I highly doubt I even would have survived any of their operations.

Anyway, I now live in Laguna Niguel and work in Mission Viejo at the South Orange County Community College District and my parents live in HB. Amazing how we could come in contact from this site, especially when you consider how far some of the other members live… Different continents and all.

Wow,that is quite a journey youve been through there Krystal…I had a grade 5 AVM with multiple Anyurisims removed 15months ago with next to no neurological deficeits, when i was told that the operation itself would leave me with upto half my eyesight gone, and paralised to some extent on my left side…
Lucky for me everything worked out the best it could,and im sure youll do just fine aswell…
Take care,theo :slight_smile:

Great story. I was also misdiagnosed twice, first as vertigo and second by a local neurologist as just severe migraines. My family doc luckily scheduled an mri and found a 3cm avm on left parietal lobe. I am scheduled for gamma knife on Monday. Keep in touch and good luck. You will be back stronger than ever. Robert

I HAVE TO SAY WITH CAPITAL LETTERS THAT YOUR CONCLUSION IS AMAZING AND WE ALWAYS SHOULD FINISH WITH THAT MOTIVE.THANK YOU FOR REMINDING ME I HAD FORGOT IT

It totally sucks when you KNOW there is something more than what they are telling you. I delt with that for five years. Its a good thing we are stubborn:)

Wow that is absolutely astounding. Great job on persisting to get diagnosed properly, I could never be that strong! Also, you are sooooo right. I am so thankful to God that my AVM caused me less stress then many of the people on here. I’m so thankful for the health that I do have! I look forward to meeting you at the AVM walk.