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Xtinnnne Female Corona, CA United States: Share on Facebook

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Xtinnnne's Discussions

Had a great day...Just wanted to share
3 Replies

So today I met with the Dr. DeSalles who will be doing my radiation. The entire experience at UCLA was so much better than Loma Linda. The office staff was great and Dr. DeSalles was one of the…Continue

Started this discussion. Last reply by Xtinnnne May 21, 2011.

I feel so stressed....
4 Replies

So I had my MRI and my angiogram has been approved, after i practically walked my doctors office through getting it approved. I tried to call and schedule it and they wont without a doctors order. So…Continue

Started this discussion. Last reply by Barbara H. Feb 7, 2011.

Medical ID bracelet
2 Replies

Ive been thinking about getting a medical ID bracelet as a just incase. Just saying Im on topamax and I have an AVM and have to be taken to Loma Linda Hospital ER. Im just thinking this might be a…Continue

Started this discussion. Last reply by JH Jul 6, 2010.

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Gifts Received (2)

Friendship Daisies From Marie W Red Ribbon From Chuck & Carrie

Xtinnnne's Page

Latest Activity

Xtinnnne replied to Maria's discussion 'Topomax for seizure ?'

Ive been on Topamax for almost 3 years and I had every side effect, the bad taste, the hair loss, the weight loss, the tingling(which is due to your c02 level decreasing), memory problems and tiredness. They all got better and I have only had one…

Jan 20

Chelsea and Xtinnnne are now friends Dec 27, 2011

Xtinnnne updated their profile Dec 26, 2011

So happy that I have survived 24 years....and plenty more to go =)

Status posted by Xtinnnne Dec 2, 2011

0 Comments

Xtinnnne left a comment for Suzy E

Thank you for tbe birthday gift and birthday wish! and thank you very much for the wonderful compliments =)

Dec 2, 2011

Xtinnnne left a comment for Barbara H.

Thank you for the birthday wish!

Dec 2, 2011

Barbara H. left a comment for Xtinnnne

HAPPY BIRTHDAY!!!!!!!!

Nov 30, 2011

Suzy E left a comment for Xtinnnne

Oh and by the way regarding the pictures you posted... you are stunning. Only saw the black and white with glasses on your profile pic. But visting your site and seeing the pics you posted for the first time, well, you are. :) Take that and…

Nov 29, 2011

Suzy E left a comment for Xtinnnne

Someone's having a birthday tomorrow...her initials are CP I think... but I'm not naming names...:) Hope you're feeling well.

Nov 29, 2011

Xtinnnne replied to Suzy E's discussion 'AVM Awareness - Letter sent to US Weekly magazine (last post I promise)'

I think your letter was great! thank you for including me! =)

Nov 23, 2011

Suzy E commented on Xtinnnne's blog post 'Ok so I read this story the other day in US and now Im really upset'

I'm sorry DM, I misspoke (well mistyped ;). It was the speak up section below the article and looking at it just now, the comments have increased (and I recognize a few names)! In addition to the comments, I wrote a letter which I will send on…

Nov 7, 2011

DM H Sydney commented on Xtinnnne's blog post 'Ok so I read this story the other day in US and now Im really upset'

Hey Suzy, I think it is a great idea, what post on fb did you read? Kia Kaha DM

Nov 7, 2011

Xtinnnne commented on Xtinnnne's blog post 'Ok so I read this story the other day in US and now Im really upset'

Thank you for your post!

Nov 5, 2011

Suzy E commented on Xtinnnne's blog post 'Ok so I read this story the other day in US and now Im really upset'

OK Christine...posted a response letter to US magazine. Take a look.

Nov 1, 2011

Xtinnnne commented on Xtinnnne's blog post 'Ok so I read this story the other day in US and now Im really upset'

Yea I think that would be a great idea! I already wrote a huge complaint to them

Nov 1, 2011

Suzy E commented on Xtinnnne's blog post 'Ok so I read this story the other day in US and now Im really upset'

You know Jenny wrote about this too. It's certainly more than frustrating... Here's my idea... perhaps if a big magazine like US picked up the story about Kate Middleton we can collectively all call or write the magazine with complaints…

Oct 31, 2011

Profile Information

Are you an AVM survivor, a relative, a friend, or a medical professional? (Required): AVM Survivor

When did the AVM bleed or, if there was no bleed, when was the AVM first discovered?: July 1, 2009

What is the status of the AVM?: Active

How was the AVM treated?: Cyber-Knife, Not Yet Treated

If treated, when was the AVM treated?: August 4, 2011

Describe the AVM (location, size) if you know it.: 3-4 cm, temporal lobe

Please share your AVM experience. (Discovery, symptoms, treatment, recovery): I started having seizures May 2009. I didnt know what they were until i had my grand mal seizure and that one sent me to the doctor. I was referred to a neurologist who ordered and MRI and started me on topamax. My MRI showed an AVM, i had no idea what this was but he said it wasnt good and referred me to a neurosurgeon at loma linda. My neurosurgeon did a angiogram to help assess the AVM to see if we could do surgery. When my results came back in it was too deep and to big and flowed into a huge vein, so surgery was not an option unless there was a bleed. So radiation is where I stood. Proton radiation is what he recommended becaue its supposed to be the most precise. I had my consult with radiation in december 2009, im still waiting for radiation. they were waiting for some special room that is supposed to be the best. I finally decided it was time for a second opinion and was referred to Dr. Neil Martin at UCLA. He still decided based off new studies that it is too dangerous to operate. So I was referred to his readiation team to Dr. Antonio Desalles and to Dr. Selch. I had my treatment on 8/4/11 and had some swelling after the treatment and some headaches and had to be put on decadron to help. I have to wait 3 years to see the full effects but Im hopefull and I take everyday one day at a time.

Would you like to recommend a surgeon, therapist, or a hospital?: UCLA Dr. Martin, Dr. Desalles, Dr. Selch

Why did you decide to join (multiple answers okay)?: Friendship: I wanted to connect with others, Cure: I want to help find a cure, Support: I want to help support others dealing with this, Information: I want to share what I've learned about symptoms/treatment

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Ok so I read this story the other day in US and now Im really upset

http://www.usmagazine.com/celebritynews/news/pic-kate-middleton-reveals-three-inch-scar-on-forehead-20112710

Please go to the link above and hopefully you will share my frustration. I read this story and couldnt believe that this so called doctor called and AVM a birth-mark that was not serious. Not serious? My AVM has turned my life upside down since my… Continue

Posted on October 30, 2011 at 4:16pm — 6 Comments

Lately have been having eye problems

Lately I have been having eye pain, flashes of light in my vision, double vision, floaters in my eyes. I saw the opthalmologist and the only thing they can find is blood in the back of my eye and they dont know whats causing it and he said it usually shouldnt be causing the symptoms Im having. I was wondering, has anyone had any eye problems after radiation?

Posted on October 24, 2011 at 11:24pm — 1 Comment

Hair loss after radiation

Has anyone else had hair loss after radiation? I had my treatment on the 4th and my hair is falling out like crazy. My doctor said it should slow down but I cant even see a bald spot where it is coming from on my head so Im scared Im losing all my hair. I just want to know when it is going to stop.

Posted on August 20, 2011 at 11:01am — 9 Comments

Day after Radiation

So unfortunately I thought yesterday was going to be amazing and I was going to sail right through it. Much to my disappointment 20 minutes after we left UCLA I started having a headache which I attributed to the mask being so tight on my face. Well as my headache got progressively worse and only on the left side of my head I took 2 tylenol and called the UCLA back. They decided it was best for me to turn around. It took about an hour and a half to get back and the tylenol didnt even touch me.… Continue

Posted on August 5, 2011 at 7:11pm — 3 Comments

Comment Wall (27 comments)

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At 5:03pm on November 30, 2011, Barbara H. said…: HAPPY BIRTHDAY!!!!!!!!

At 9:35am on November 29, 2011, Suzy E said…: Oh and by the way regarding the pictures you posted... you are stunning. Only saw the black and white with glasses on your profile pic. But visting your site and seeing the pics you posted for the first time, well, you are. :) Take that and run...lol.

At 9:31am on November 29, 2011, Suzy E said…: Someone's having a birthday tomorrow...her initials are CP I think... but I'm not naming names...:) Hope you're feeling well.

At 4:59pm on August 3, 2011, Jessica Ables said…: Hey Christine. I have had the follow up appointments but since this last bleed was so bad I had to have the embolization. They don't want to see me for a year then they'll test and see what the changes have been. Contact me back if you have anymore questions :-) take care.

At 9:58am on July 21, 2011, Jessica Ables said…: Hello Christina. I saw the comment you left on my profile. Wow! I feel truly honored that you contacted me. I had the radiation done in July 2010. Dr Selch and Dr DeSalles were both my doctors. They were amazing. My first appointment with them was in March 10 and they had to make sure I was a candidate for the procedure (I was referred by my doctor at Riverside County Regional Medical Center). I had the initial appointment which was just a consult then in April I was fitted for my mask. This was painless except for the angio which they did with and without contrast. I received my call in July that they'd set me up for my appointment date Last week of July and first week of august. They scheduled me for 6 treatments over the course of two weeks. (Mon Wed and Fri of each week). It did make me tired and I just felt drained. I didn't have any side affects initially. After a few weeks and during the time of the treatment I didn't want to eat. I had no appetite. I had a few bald spots which I could easily cover with my hair. I wouldn't have even noticed them except for the fact that when I'd put it in a split pony tail my mom saw them. Since the treatments, Ive had two additional bleeds and a partial embolization. If you have any questions please feel free to email me or message me on here. I'd love to be a help to you in any way that I can. I wish you the best.

At 5:41pm on June 12, 2011, Marie W gave Xtinnnne a gift…: Friendship Daisies
Wishing you the most excellent treatment at UCLA, like I had. Bless you in your upcoming treatment.
From the Gift Store

At 12:26am on March 29, 2011, Barbara H. said…: Yuck...obviously I need to readjust my positive waves for you! So sorry. On a more serious note...do not panic...medical technology is growing exponentially now. When I had my AVM bleed 22 plus years ago there was only 1 MRI machine in Atlanta. No internet...no cell phones...no googling and no AVM support. YOU ARE NOT ALONE!!!!!!

At 10:16pm on March 25, 2011, Barbara H. said…: Hi Christine. I marked it in my calendar to send positive waves of energy your way on Monday!!

At 9:44pm on January 4, 2011, Marie W said…: Happy New Year, Christine!

I am not logged on as often ... I returned to work on 12/13. Happy to be returning to my regular life. Have you heard about your chance to meet with Dr. Martin? When I decided to get his opinion, I checked my health insurance and found he is an approved provider by Blue Cross. I called his office and spoke with Elisa. I made an appt. with her, and met him within a few weeks. I was asked to complete their on-line questions and read the AVM info provided by him, prior to my appt. I also had to take my MRI and angio records with me for his review. I will keep my fingers crossed that you are seen ASAP!