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Sandie Alger(Kasey's mom) Female Sarasota, FL United States: Share on Facebook

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Sandie Alger(Kasey's mom)'s Discussions

post-craniotomy pain
7 Replies

It's been 5 days since surgery and my daughter is still having awful pain problems. I'm pretty sure part of the problem is that she is having trouble sticking to a regular schedule due to nausea. …Continue

Tags: recovery, nausea, pain, craniotomy

Started this discussion. Last reply by Sandie Alger(Kasey's mom) Aug 20, 2010.

repeat gamma knife treatment?
6 Replies

I would like info on who has had repeat gamma knife and how long did you wait after the 1st treatment? the Dr. gave a 90% obliteration rate over 3 yrs. Well, it's been 3 yrs and although it's much…Continue

Tags: necrosis, radiation, radiosurgery, knife, Gamma

Started this discussion. Last reply by Paul McMonagle Apr 8, 2011.

Has anyone actually been cured from one round of gamma knife?
2 Replies

Is this possible? the avm hasn't bled. That seems to make a difference in the "cure". I'm just trying to find some good news regarding choosing gamma as the way to go. If you were able to rid…Continue

Tags: non-bleeding, obliterated, cure, results, knife

Started this discussion. Last reply by Sandie Alger(Kasey's mom) Sep 1, 2010.

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Latest Activity

Radiosurgery Patients (Gamma Knife/other)

To those who have been treated or are considering treatment with a type of radiosurgery for their a.v.m.

Kristynn joined Sandie Alger(Kasey's mom)'s group 6 hours ago

113 Comments

Radiosurgery Patients (Gamma Knife/other)

To those who have been treated or are considering treatment with a type of radiosurgery for their a.v.m.

Kim joined Sandie Alger(Kasey's mom)'s group yesterday

113 Comments

Linda commented on Sandie Alger(Kasey's mom)'s group 'Radiosurgery Patients (Gamma Knife/other)'

The effects of GKS seem to occur a long time after the procedure which making me very wary of having it. Does anyone else think this or worry about it?

Feb 1

Radiosurgery Patients (Gamma Knife/other)

To those who have been treated or are considering treatment with a type of radiosurgery for their a.v.m.

Linda and Jami joined Sandie Alger(Kasey's mom)'s group Feb 1

113 Comments

Radiosurgery Patients (Gamma Knife/other)

To those who have been treated or are considering treatment with a type of radiosurgery for their a.v.m.

Annette (Marie) joined Sandie Alger(Kasey's mom)'s group Jan 30

113 Comments

Andrea Fisher commented on Sandie Alger(Kasey's mom)'s group 'Radiosurgery Patients (Gamma Knife/other)'

Hi Gerry Both times I had gamma I had hair loss within a few weeks of the procedure. I also had discomfort at the pin site that lasted for awhile. Best of luck to you!

Jan 25

ky commented on Sandie Alger(Kasey's mom)'s group 'Radiosurgery Patients (Gamma Knife/other)'

I dont have hair loss at the site (i have hair loss in patches in front of head, My AVM is left frontal lobe) but do experience sharp pains. Checked with neurosurgeon and he thinks these are vascular pains and doesn't warrant a scan yet(its…

Jan 24

Crystal Gonzalez commented on Sandie Alger(Kasey's mom)'s group 'Radiosurgery Patients (Gamma Knife/other)'

Hi Gerry, I did experience hair loss and pain on the side where i got the gamma knife. It comes and goes the pain but the only thing that helped was some of the pain medication, otherwise than that take it easy and do not do strenious activities.

Jan 23

Gerry H commented on Sandie Alger(Kasey's mom)'s group 'Radiosurgery Patients (Gamma Knife/other)'

Has anyone experienced site pain or hair loss following gamma knife....I was feeling really good for the first two weeks but now ugh!

Jan 22

Radiosurgery Patients (Gamma Knife/other)

To those who have been treated or are considering treatment with a type of radiosurgery for their a.v.m.

gladys0009 joined Sandie Alger(Kasey's mom)'s group Jan 18

113 Comments

ky commented on Sandie Alger(Kasey's mom)'s group 'Radiosurgery Patients (Gamma Knife/other)'

I had GK in early Oct and since then very frequent headches, no prescription were given at the time for anything(luckily I never had a bleed or seizure). Meeting my neurosurgeon on Tuesday so will see what he has to say.

Jan 13

Gerry H commented on Sandie Alger(Kasey's mom)'s group 'Radiosurgery Patients (Gamma Knife/other)'

Hi All, I was fatefully diagnosed in Oct 11 and just had Gamma done Jan 5, 2012. I am feeling okay but a little uneasy. Has anyone had gamma and not be prescribed seizure or steroids? I haven't had a bleed or seizures so my Dr. dosen't…

Jan 12

Radiosurgery Patients (Gamma Knife/other)

To those who have been treated or are considering treatment with a type of radiosurgery for their a.v.m.

Gerry H joined Sandie Alger(Kasey's mom)'s group Jan 12

113 Comments

Seán commented on Sandie Alger(Kasey's mom)'s group 'Radiosurgery Patients (Gamma Knife/other)'

Recent expeiences following CK radiation treatment in April 2011 I had a seizure in early December 2011. I was taken into the nearest ER where they did a CT scan. The radiologist believed I had suffered an acute bleed. Protocol demanded that they…

Jan 8

Radiosurgery Patients (Gamma Knife/other)

To those who have been treated or are considering treatment with a type of radiosurgery for their a.v.m.

Gwen joined Sandie Alger(Kasey's mom)'s group Dec 30, 2011

113 Comments

Radiosurgery Patients (Gamma Knife/other)

To those who have been treated or are considering treatment with a type of radiosurgery for their a.v.m.

JillNZ and JPuente joined Sandie Alger(Kasey's mom)'s group Dec 23, 2011

113 Comments

Profile Information

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

When did the AVM bleed or, if there was no bleed, when was the AVM first discovered?: March 23, 2007

What is the status of the AVM?: Obliterated

How was the AVM treated?: Crainiotomy, Embolization, Gamma-Knife

If treated, when was the AVM treated?: June 5, 2007

Describe the AVM (location, size) if you know it.: over language center over left ear

Please share your AVM experience. (Discovery, symptoms, treatment, recovery): my daughter, Kasey, was at the county fair and had her first Grand Mal Seizure. Subsequent CT scan and MRI showed the AVM over her left ear. I believe it was about 3cmx4cm. She had experienced a few partial(focal) seizures prior to that but we did not know that is what was happening. She was put on Lamictal for seizures and only had one more to date, occurring 2 months after Gamma Knife treatment. We believe it was brought on due to almost having heat stroke at a horse even in August Florida heat. The Gamma Knife seems to be working well enough to keep the neurosurgeon happy, but seems like an eternity to our family. It's now been 2 yrs./4mos. It's not obliterated so we are told we won't discuss further treatment plans until 3 yrs. has passed(typical radiosurgery protocol). Meanwhile her meds are very expensive(over $300/mo.) and she has some side effects.

Would you like to recommend a surgeon, therapist, or a hospital?: Yes! Dr. Brian Hoh at Shands Hospital, Gainesville, FL cerebrovascular surgeon

Sandie Alger(Kasey's mom)'s Blog

Kasey's road to a cure

I feel like I've posted so much about my daughter's experience that it didn't occur to me that it was all in discussion groups and I never posted her story as a blog so here goes:

I'll leave out the diagnosis part since that is already described on my page. I'll just mention that the avm did not bleed, but was discovered due to a seizure.

End of March 2007: I obtained Kasey's MRI and radiology reports, researched doctors online and then sent out letters with her…

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Posted on December 1, 2010 at 10:25am — 3 Comments

Comment Wall (23 comments)

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At 3:49pm on December 13, 2010, Vitolo Rossini said…

At 8:32am on November 7, 2010, Andrea Fisher said…: Hi Sandie I was just wondering if your daughter needed a 2nd round of gamma knife? I see she no longer has her avm congrats to her! But did it take more than 3 yrs for the gamma to work? I had my 1st gamma done on 6-20-07 and I'm now going in for a 2nd treatment on 11-17-10 hoping it will knock it out fast! It is still a decent size but smaller then when I started. Thanks for sharing Andrea

At 10:29am on October 19, 2010, pratibadha pratap singh said…: hi

At 6:27am on August 31, 2010, Diane K said…: Katie just had her final angiogram and it was absolutely clear. Our bugaboo continues to be memory and processing problems at school -- she is starting her second year at community college, the first being an absolute bust. Getting LOTS of assistive technology support from our state's department of rehabilitation, going for training this week. We are hoping that this year she can begin to "own" her disability and be able to advocate for herself.

At 11:15pm on August 17, 2010, Kevinw said…: Thanks for the reply. That's great that it worked out for your daughter. I will keep my spirits up and hope for the best. Thanks again.

At 3:51pm on August 13, 2010, Susan Troop (Lindsey's Mom) said…: Poor little brother got jealous of all the attention and decided to have a medical issue of his own, ha! Wow, that was a lot to deal with at one time! When it rains it pours! I am so glad that Kasey is AVM free now! I can still remember the giddiness, when the surgery was over. We too were worried about right side movement, so words can't explain the feeling when the surgeon said she was wiggling everything! Thanks for the update. I remembered her surgery was this week, so I just wanted to check in. I'm so glad you are now on this side of things. Now, I sometimes wonder if we really went through all that. It is kind of surreal! I can remember each time I look at Lindsey and think she has a bad 80s hair cut, because of where the hair is growing back out from her thin incision line. It looks kind of like she cut her own bangs, in the wrong place. It makes me giggle. Can't complain with that being the only post surgery issue we are dealing with!! No one would know she had brain surgery. We will continue to pray for a speedy recovery for both of your children! So glad to hear the good news.

At 1:40pm on August 13, 2010, Susan Troop (Lindsey's Mom) said…: How is Kasey doing? I have been thinking of you and your family.

At 8:52am on August 5, 2010, Susan Troop (Lindsey's Mom) said…: Hi Sandie! Read your post on the Parents group, but figured I would leave a message here. I am actually excited for you that you are almost there! Strange thing to say, but I can only imagine how long the past 3 years must have been! Sending your child in with the neurosurgeon is beyond tough, but when you come out the other side, there is such relief! You are almost done with this journey! As for recovery, obviously it is different for everyone. As you probably already know, Lindsey recovered very quickly, without much pain! She only missed 8 days of school. I will be praying for a similar, or better, recovery for Kasey! Please keep us posted! I will be looking for your updates. If I can help you in any way, please let me know!!

At 6:53am on June 24, 2010, Jamie Pantelis said…: Oh and hair you asked about hair. I was a little upset about my hair, but figured in the grand scheme of things is wasn't all that bad. Now I have a cute little pixie cut that is great for summer. I know hair is important especially to a young woman, but it grows back and I figure it is small price to pay for the knowledge I am going to live a long and healthy life.