Quantcast

AVM Survivors Network

Daughter Brain AVM Lots of questions!

My daughter was diagnosed with a brain avm early in her pregnancy. Baby was taken at 33 weeks due to the hospital fearing she would have a stroke. He did fine:)
Her AVM is located partially in an emotional part of the brain and partially in a motor skills area.
She had first procedure which was the placement of a t-coil and super glue done a couple months after baby was born in 2010. Year later we found this had not worked so she had Gamma Knife surgery on it July 1 2011.
It seems the very next morning when she awoke, she was confused and sort of stumbling. Since that time things went way down hill as she developed many mental illnesses including intense manic bipolar. Doctors were not treating her and as wound up as she was she had a full blown seizure in January. Just so happened the next day after being let loose by the hospital was her 6 month check up and according to the radiologist and brain surgeon, she had been in a state of seizure the entire time she was in ER awaiting to be admitted (5pm-2am!) without any treatment so we do not know yet if there is any perm damage caused by the seizure.
The beginning of Feb she started having delusional thinking and was court ordered to stay in the mental ward of the hospital the entire month. The hospital tried her on virtually every mental med out there to no avail.
My brother happened to stumble across an article on the use of Minocycline (form or Tetracycline) on schizophrenic patients that is somehow worked to stop delusional thinking. We showed her physician this and he agreed to try it. Long story short, the Minocycline helped very much, but she is still not back to her normal self.
The surgeon and radiation doctors believe once the AVM dissolves all these mental issues will also disappear. We just do not know what to believe anymore:(
I'd like to hear back from anyone else who has experienced the same types of effects and also anyone with loved ones that have been through this.
Do have one more question. Daughter was told she could not get pregnant due to the radiation for 5 yrs. I've been searching on the internet about this subject but cannot seem to find any real answers. I wonder if there is some test that can be given to measure the amount of radiation in the body so one knows if it is safe or not to become pregnant.
So sorry for such a long post but this is the very first place I have found I might possibly find answers and of course have so many questions built up.
Very Kindest Regards,
OkieCin

OkieCin, what a difficult road you have been on. I'm so glad you have joined the site, because I know you will get support here. Here is some information about pregnancy:

Here is an article about fetal radiation exposure when pregnant moms undergo gamma knife: http://www.ncbi.nlm.nih.gov/pubmed/12590695
The article concluded that the risk to the fetus was low.

I also found an Ask An Expert posting where a wife asked if her husband having GK would affect the health of a child conceived afterward, and the expert said no: http://data.umms.org/scripts/expertprocess2/archive.cfm?docid=72&deptid=12&urlname=/rightbox_demo/index.php?fileName=007274.htm&StartRow=46&PageNum=4

Best of all, I found an article where infertile women had GK for prolactinomas, and nine of them became pregnant 2 to 13 months after GKS, and all gave birth to normal children: http://www.aboutcancer.com/gk_pituitary.htm

So, five years seems a little extreme?

However, since your daughter is still suffering from mental symptoms (which do sound as if they are caused by the AVM, rather than the GK, so let's hope they resolve soon), she should delay pregnancy until it is clear that the GK has treated the AVM successfully. GK is not fool-proof, and there may be residual AVM, in which case her symptoms could again increase during pregnancy. GK members here will have input for you, I'm sure.

I applaud your brother for researching and finding a medicine to help your daughter.

Although I don't have any advise that I can provide for you, please know that your daughter will be in my thoughts and prayers. You have found a fantastic support group here! Stay Strong and Positive!

My husband had a ruptured avm in february of this year causing a stroke and subsequent craniotomy. After the surgery, he experienced severe delusions and most were aimed at me. They were very evil, disgusting, and downright terrifying. The only thing that seemed to help was a low dose of an anti psychotic called seroquel. Around 5 weeks after surgery thr delusions slowed, however the hate directed at me remained. It has been almost 4 months and while he is still taking a small dose of seroquel, his mental behavior has improved dramatically. I am no longer scared to be alone with him and know that

he now recognizes what he is saying if i point it out to him.

That Minocycline I'm telling you works wonders on this strange behavior! It is just a mere antibiotic but I mean it mad the diff between night n day when they put my daughter on it and it does not take but just a couple three days to get into effect.
The UK just began a huge study on it the beginning of April and not only are they using it on schizophrenic type things but also depression, Alzheimers and many other mental issues. This drug has had studies done on it by several other respectable countries.
Here is a link talking about the new UK study: http://blogs.dnalc.org/2012/03/26/a-new-superdrug-that-fights-pneumonia-pimples-and-schizophrenia-meet-minocycline/
Think its worth a shot! Prayers with u as I know what you are going through!

Hi, OkieCin, I did a little digging on minocycline and found this intriguing information:

Old antibiotic reduces the growth of harmful blood vessels following stroke
August 30, 2010

A daily dose of an old antibiotic may help people with diabetes avoid a stroke, or at least minimize its damage, according to a new study by researchers at the Medical College of Georgia that was recently reported in the Journal of Cerebral Blood Flow and Metabolism. The drug, minocycline, which is known to be an angiogenesis inhibitor, appears to reduce the formation of leaky, twisted blood vessels in the brain that increases stroke risk in diabetics.

The researchers, led by Dr. Adviye Ergul, physiologist in the MCG Schools of Medicine and Graduate Studies, focused on the blood vessels of diabetic rats. They found that even moderately elevated blood glucose levels result in thicker, twisted blood vessels that tended to leak. People with diabetes are at increased risk for a dangerous combination of clot-based and bleeding (hemorrhagic) strokes because a clot is followed by the growth of leaking blood vessels—a process called hemorrhagic transformation.

The source is http://www.angio.org/news.php

It makes me wonder if minocycline could prevent revascularization of AVMs...

Hi OkieCin,

My daughter's had some of the same experiences as yours. She was 16 when her AVM bled in 2007. Too deep and too large for surgery, she had the t-coil and the glue, and then the gamma knife procedure. Her mental problems took about a year to ramp up. She had periods of confusion and anxiety; they would look for another AVM, find nothing. Months would go by, another episode. No one could explain what was happening. The episodes would last for a week or more, during which she'd feel completely numb inside, unable to think clearly.

Of course we saw a psychiatrist and a nuerologist. She was put on anti-depressant meds, but the periodic cycling continued. She took college courses, failed many of them (she also has rather persistent memory problems with retaining new information, and problems writing out thoughts). She has recently totally dropped out, convinced there is no way for her to demonstrate what she knows when 90% of the tests are dependent on memorization.

In September she ended up in the hospital due to a more severe episode that was highly emotional, highly confused. After release, she began intensive work with another therapist and psychiatric team. She is back in the hospital now -- by her own choice--and they are attempting to figure out what psych med will help. At this point they believe she is bipolar and they think all of the confused/numb periods may have been variations on manic cycles. They "think" the strokes she had during and after the AVM could have affected her brain chemistry. I would bet radiation also contributed. Her AVM was in her speech area.

I don't know that we yet have any answer to all of this. I want to be hopeful. To believe they've finally found the answer but who knows? It is painful to watch her struggle so hard. The AVM was simply devastating, life-changing for her. I don't think the medical profession understands enough about the brain, how injuries impact the chemistry of the brain.

Would love to exchange ideas with anyone out there who has experienced similar problems or who has a relative facing similar issues. Exchange of information can only help us work more effectively with doctors. I want my daughter to have a good life, to be able to have a car, rent an apartment. She is bright but condemned to this half life of constant reoccuring episodes.

Thanks so much for writing. Had almost forgot I joined the group since never get any mail from the group lol!
First thing, MAKE the doctors place her on MINOCYCLINE. It is a very simple old timer antibiotic but they have found it stops schizophrenia and manic states etc and right now there is a huge study began in April in the UK in which they are trying this on all sorts of mental disorders--including alzhemiers. I'll do my best to find couple articles on it you can show the doctors.
When my brother stumbled across the first article, I made my daughters hubby take with them to her doctor. He looked into it and did place my daughter on it. I am telling you within a matter of only 3-4 days there was so much mental improvement I was blown away. However, she is not on it right now as she won her SSD, insurance changed, different doctors who all of course have made their own decisions on what is wrong with my daughter--all still think she is bi-polar this that and the other which I know as her mother, that is totally not the case!
She recently went back to the surgeon and radiologist who did the gamma knife surgery and they declared the AVM is gone and were pretty astonished how quickly it dissolved (was yr ago July she had the gamma knife done).To this day they will not admit what so ever the gamma knife had anything to do with the mental/coordination troubles.
I can also tell you she had absolutely no mental symptoms until the morning after the gamma knife deal so as far as I am concerned something about this HAD to have caused the troubles!
I wish somehow a group of us could demand an investigation into this gamma knife surgery and hear of all the mental troubles people had AFTER having this done! There is some site where you can check on voluntary reports of side effects of meds and treatments that patients have reported, but oh my I have long since lost that web site, but I will ask around to see and let you know.
Here is the first article on Minocycline my brother stumbled upon which is what was taken to my daughters doctor at the time: http://www.independent.co.uk/news/science/scientists-shocked-to-find-antibiotics-alleviate-symptoms-of-schizophrenia-7469121.html

Here is the article about the HUGE UK study being conducted where they are using it now on all sorts of other things too: http://blogs.dnalc.org/2012/03/26/a-new-superdrug-that-fights-pneumonia-pimples-and-schizophrenia-meet-minocycline/

I happen to also run a feline rescue/sanctuary and have even discussed the possible uses of minocycline in cats for epilepsy and other ailments that may be caused by small inflammations in the brain.

I am so sorry but I have a splitting headache and am unable to think totally straight so must go for now, but you are very welcomed to email me directly at my personal email to keep in touch is ctipling@olp.net
I had my daughter on the phone when I pulled up your reply and she says she would love to email with your daughter; maybe they can exchange feelings they have had etc, so let me know if your daughter might be interested in doing so:)
Very Kindest Regards,
Cindi