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Chris Safford Female Chicago, IL United States: Share on Facebook

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Inoperable AVMs

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Who, out there has an AVM in the brain & lives in Chicago??
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What I would like to know is: Are there any other people in Chicago like me????????My AVM is in the Caudate Nucleus of my brain, bleeds into the third ventricle & the basal ganglia . It is…Continue

Tags: Chicago, in, People

Started this discussion. Last reply by Kate Kerr Oct 14, 2010.

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Chris Safford left a comment for DBJ

My AVM specialist retired at the end of 2009. It's been hell trying to get a good fit with another doctor. My last MRI from July, showed the AVM in all its tangled glory. Usually it was obscoured by a cloud of hemosidrin which is left over…

Sep 25, 2011

Chris Safford added the App Status Sep 25, 2011

marcylynn left a comment for Chris Safford

HI Chris-just read your story-wow. Hope you're doing well! Also cute pics of your pets :)

Jul 15, 2011

DBJ left a comment for Chris Safford

Hi Chris, My in Dec. my 15 y/o daughter had a hemorrhage and stroke. She re-bled in the same exact area 6 weeks later. She suffered complete loss of mobility on her left side (now able to move most of it after hundreds of therapy hours) anyhow,…

Jul 12, 2011

Curiosity

Status posted by Chris Safford Jun 3, 2011

I need some support! Family is not responsive& are idiots!

Status posted by Chris Safford Mar 11, 2011

Chris Safford replied to Michael A. Contés II's discussion 'Survey: What year and how old were you when your AVM occurred?'

I went to Mass. General in May 1988 for my proton beam. Yes, it was hell!!!I was as sick as a dog after it. For a while I thought I had radiation poisoning. It didn't work either. It took doctors from 1984 to 1987 to…

Mar 7, 2011

Chris Safford replied to Sandra's discussion 'Has anyone heard of Bevacizumab aka Avastin as possible treatment for Brain AVMs?' in the group Inoperable AVMs

Hi Sandra! How does the dr give this medication? In my drug book, it says that it is an IV drug. I can't imagine putting an IV into the brain. Most drugs won't cross the blood-brain" barrier. …

Jan 9, 2011

Chris Safford commented on Ben Munoz's group 'Inoperable AVMs'

Tonya: My AVM is also near the center of my brain. All of our communication centers & movement centers are in that area. Mine is hidden within the center of the right side of the caudate nucleus, which is an important structure in the brain. I…

Dec 5, 2010

Chris Safford replied to Michael A. Contés II's discussion 'Survey: What year and how old were you when your AVM occurred?'

I know that I have replied to this already, but here goes. What does "A full recovery" mean to you? That you are able to do all of the things that you could before your bleed???? Maybe your bleed wasn't that bad. Is your AVM what is…

Nov 14, 2010

Just checking things out

Status posted by Chris Safford Nov 8, 2010

Chris Safford updated their profile Oct 21, 2010

Chris Safford replied to Ben Munoz's discussion 'AVM Books and Movies'

I really liked this book! It made me cry. I went through a lot of the same things that Jill went through, even though mine was on the right side. I really enjoyed going to her website & hearing the brain jingle! She was lucky that she had the…

Oct 21, 2010

Kate Kerr replied to Chris Safford's discussion 'Who, out there has an AVM in the brain & lives in Chicago??'

We are in Michigan but my now 6 year old was born with AVM's on left eyelid and behind left eye. We've dealt with the bleeds and I send out hugs about the location as that's all I know to. To Kim....Have you went to U of M? They have…

Oct 14, 2010

Chris Safford commented on Nikolaos Papadopoulos's blog post 'Awesome video'

That was really a good video! Have you read her book "My Stroke of Insight"? It was really good! It tooik her more than eight years to get back to where she was before her bleed! It was interesting that she became a neuroanatomist because…

Oct 7, 2010

Chris Safford commented on Ale Xandra's blog post 'graduation paper'

If your paper is really good, maybe it could be published. Statistical research is really hard, although, I made it through my class with an "A". I really had a hard time with my research class, though. I couldn't concentrate &…

Oct 7, 2010

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?: August 25, 1984

What is the status of the AVM?: Active

How was the AVM treated?: Proton Beam, Not Treatable

If treated, when was the AVM treated?: May 5, 1988

Describe the AVM (location, size) if you know it.: Rt. Head of Caudate Nucleus

Please share your AVM experience. (Discovery, symptoms, treatment, recovery): I started to have an infection while I was on vacation in Florida, after going on a cruise to the Bahamas. It was the middle of August. After getting off the cruise, about 5 days later, I developed a fever & the dr. there diagnosed it as strep throat. After I got well, I was chewed up by those "damn" sand mites. I also had a really bad headache. When I got home, it turned into like a stomach flu, with nausea, vomiting & diarrhea. Along with the headache, my left side was twitching!(A.K.A chorea) I was taken to UIC hospital in Chicago, where I live. The AVM did not show up then on the CT scan. They diagnosed correctly that I was having a stroke, but not what kind. They had never seen a stroke with chorea. I had three neurologists treating me! After that, the chorea lasted three more months, before toning down to a dull roar. The next attack came the next year in April. Seven months later. It took three years, from 1984 to 1987 to definitively diagnose me! in May 1988, I went to Boston, Mass. General Hospital for a Proton Beam treatment. It was supposed to obliberate the AVM in five years. Then I found out that mine was a Venous cryptic cavernoma & the beam didn't work on those types of AVM's. My last MRI, in July 2009, It was reported that the cavernoma was stable, but I had hemosidrin on my basal ganglia! On top of this, I also have fibromyalgia!

Would you like to recommend a surgeon, therapist, or a hospital?: No, my doctor, whom I had for many years decided to retire at the end of last year. (I think he was developing one of the neuro conditions that he was treating! Such a shame!

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What do you do when STUPID relatives try to talk you into going to work, etc.?

I went to my Aunt's birthday party yesterday. It was outside & my cousin had a built in pool & separate whirlpool, which was a welcome relief to me, as I also have Fibromyalgia! I still have lingering effects from my bleeds, weakness on the left side, foot drag, ect., with the fibro I have fibro fog, inability to concentrate sometimes, horrible pain, etc. Those of you who have both conditions, know what I am talking about! Even if you don't have fibro, pain is an after effect of a… Continue

Posted on May 31, 2010 at 7:30pm — 17 Comments

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At 9:13am on July 15, 2011, marcylynn said…: HI Chris-just read your story-wow. Hope you're doing well! Also cute pics of your pets :)

At 10:07am on July 12, 2011, DBJ said…: Hi Chris,
My in Dec. my 15 y/o daughter had a hemorrhage and stroke. She re-bled in the same exact area 6 weeks later. She suffered complete loss of mobility on her left side (now able to move most of it after hundreds of therapy hours) anyhow, here's the thing; after numerous MRIs and angios, there is nothing showing to give us a reason why she hemorrhaged. The area of the bleed was the basal ganglia. The last MRI a couple weeks ago showed only scar tissue from the bleed. We are watching the area with an MRI every 3 months to make sure there's nothing changing. I by random chance, fell upon your blog and was immediately interested in your situation. I am going to research the venus cryptic cavernoma, however I imagine our doctors have already had this on their radar. We live in ATL GA, and have access to two incredible teams of avm specialists and neuro surgeons. I will keep you posted when we find out anything new. Please let me know if you have any insight.
Thanks, Dana

At 9:25pm on September 26, 2010, Troy Garcia said…: I just was saying that every AVM can be shot with something. Mine was shot with the gamma knife back in 1981. Then in 1999 it was shot again bye the gamma machine in Florida and then it was shot again in 2003 bye the gamma machine in New Orleans close to my home and now it is finally gone out of my head.... Yours was even shot bye something......... That is all I am saying. I had several neurosurgeons during the thirty to thirty five years I had this thing. I had several MRI's and Angiograms during my period also in having this thing.
That is all I was saying a few weeks ago.

At 1:41pm on August 23, 2010, Michael B said…: Well i know for sure Dr. Schaffer is a neurosurgeon i don't know if they can be both. My sister lives in hickory hills it's a nice town.

At 11:57am on August 21, 2010, Michael B said…: Chris I still have weakness, forgetfulness and emotional changes.I feel pretty good and i notice some small things, loss of feeling left side of my throat and such.LESLIE SCHAFFER sounds like a she but is actually a he.Not the best bedside manner but an excellent neurosurgeon.I saw him at christ hospital. The dogs have been some of my best tharapy.They love you more than they love themselves no matter what.

At 12:29pm on August 19, 2010, Lee Ann said…: Hi Chris never heard of that area before it is new to me. Thank you for your well wishes and I send nothing but the best to you. Have you ever gotten a second opinion of using radiation or embolizations? Would love to talk with you sometime.
Bless you and take care.
Lee Ann

At 11:55am on August 15, 2010, Cindy Phillips said…: Mine was near / around my 4th ventricle in the brain, which is in the back around the pon (above the hindebrain and brain stem) and cerebullem (I believe). My surgery incision is on the back right side of my head (just to the right of the neck starting point of the head). (Since the right side of brain controls the left side of body, that's why it effected my left side.)
'By products on the nerves' = do you know if the CT scan would detect that?

At 8:49am on August 9, 2010, Cindy Phillips said…: Hi, Chris. You are very welcome & thank you for the friend acceptance. I don't get to see my friends either. Maybe someday soon we'll change that, as it is important to socialize with them / others.
How are you doing? Hope you are doing well!

At 2:00am on June 21, 2010, Ameenah said…: Wow Chris, you live in the city I love.

I love downtown Chicago, I guess I love downtown anywhere lol lol.

I think Chicago has the best skyline.

I wanted to move there, but after the two strokes, I said I'll stay in Philadelphia and visit Chicago when I can.

Peace,
Ameenah

At 6:13pm on May 3, 2010, Ben Munoz said…: Hello, Chris, welcome and thank you for sharing your story with us. We also run a sister site, http://www.livingwithfibro.org you may be interested in visiting.