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AVM Survivors Network

Successful Gamma Knife Radiation


#21

I pray that you have an excellent outcome as well. Our recuperation time may vary, but healing is always a slow and steady process. Wishing you all the best. Keep me posted about your recovery and have a blessed New Year.

Sharon D.


#22

I had the gamma knife procedure done in August 2016, so right now I’m just watching days tick by until my follow doctor’s appointment and ultimately the MRI where I hear the results. I hope to see day where im able to post that procedure worked.


#23

It is nice to read that treatment has been successful!!:grinning:


#24

Waiting is the worst part, but patience is the key to recovery. In the mean-time, think positive, stay calm, and pray for the results that you want, need and deserve. I’m wishing you all the best!

Sharon D.


#25

Thank you so very much. In June 2017, the test will be repeated using contrast dye to make sure no little pieces of the AVM escaped detection. The test w/o dye indicated that my AVM is gone. Dye or no dye, I have already claimed it to be gone!


#26

Thank you sharing your experience and the words of encouragement!


#27

Does anyone have side effects after gamma knife is done?


#28

Hi, My name is Cristine and my daughter had an AVM rupture on 8/31/17. She is a miracle to behold. She had an EVD which saved her life, was in PICU almost 2 weeks, regular floor for a week, and Fraizer Neuro Science Hospital for almost a month. Praise God no craniotomy or shunt needed. When she went to Frazier she was in a wheelchair, diapers, G-tube, and just barely speaking. She left a month later, walking, talking, reading a bit, using the restroom, and eating. We have been home since late October. It has been a journey with outpatient Neuro Rehab and transitioning back to school. Han is 17, was and Honor Student at a private Christian high school, she is a junior this year and is my only child, so definitely an over achiever.

We have had a ton of medical appointments and she is scheduled for her radiation surgery on April 21st. Her AVM is small, less than 1cm, deep inside her brain, on the left where her speech and language is and her eyesight connections are at. She has lost vision on both sides of eye (right), she also has double vision her processing is slow, and she doesn’t feel her right as much but uses it just fine… She is in school part time and has transitioned nicely. I give God all the glory for her miraculous recovery thus far. God created her and are gets to decide her Ultimate outcome. He is so good and faithful and loves my precious daughter much more than I do. This encourages me daily, and she is still here!!!

I would love to hear more about outcomes from the radiation surgery. I pray it damages nothing but her AVM. We have done her pictures and Angiogram and the vein Dr.says her brain looks great. She had a drain in hours within her injury and this saved her life! GOD!!! HER AVM is small but she had a ton of blood. Also really sruggling with double vision. She has glasses with Prisms but don’t see to help…thank you for your feedback. God has a beautiful plan for my daughter despite this, I trust Him.

Blessings and Many Thanks.

Cristine.


#29

Hi Christine:

From one “Miracle” (me) to the Mother of another “Miracle”, I would like to welcome you to the AVM-ers web site. Your post brought tears to my eyes. God is good, all the time! Even when we think He’s not responding as fast as we’d like, know that He will answer. I’m a whole lot older than your daughter and likely older than you. My AVM ruptured in my Cerebellum in Nov. 2014. My life has been forever altered from that day. I couldn’t walk; had some vision problems; couldn’t focus; short term memory went on vacation; couldn’t distinguish between day and night; had the concentration of a gnat; and, I got it in my diminished mind that I was going to play Guitar at the Grammy’s, with Keith Urban! I wanted a Guitar so bad, I wanted to scream. I do not and have not ever played guitar or any other instrument. I saw Urban on an infomercial selling his guitars on TV while I was in Rehab. It got in my mind that he needed me to play with him, but first I needed to buy the Guitar. Thank God I didn’t have any credit cards with me. My hallucinations were crazy to say the least. In time, things started to clear up and the fog started to lift. I had Gamma Knife Radiation 6 months after my bleed. My AVM was located in a place that made other options unavailable to me. Six months after that, I was tested again and there was no damage from the Gamma Knife to the surrounding brain tissue - Praise God, and the AVM appeared to be gone! Next month (5/17) I will have a repeat MRI and an Angiogram to be absolutely sure the Monster is gone! Your daughter is in for a long journey and your job is to help her through it. From reading your post, I know that you are the perfect person to take this journey with her. It ain’t easy by any means, but this AVM group is here for you. We are here to encourage and support you. If we can answer any of your questions, or soften your fears, you know how to reach us. Each journey is different and each outcome is unique. The one thing I know you can do is Pray and be Patient. I wish your daughter, and you, the very best. God bless you both.

Sharon D…


#30

Mam.I too have avm in left temporal lobe of size 2 cm with presenting symptoms of severe headache only.and did cyberknife this June.Can I know about your symptoms .Actually I am too depressed about the way head is aching.


#31

Hi Fellow AVM-er:

My AVM was in my Cerebellum which controls walking, balance and coordination. I didn’t know that anything was wrong with me until the rupture in 2014. However, I suffered from migraines since I was 13 years old. I saw many doctors over the years, but not one recommended a CAT Scan or MRI. After the rupture, I didn’t think the headaches would ever stop. In Rehab, l was given 2 Tylenol tablets every 4 hours for pain. When I got home, the Tylenol schedule continued, but the pain never fully stopped. My Neuro saw that I was taking Elavil as a migraine preventative so she upped the dosage in hopes of limiting or eliminating the need for Tylenol altogether. It worked! My headaches were less severe and were no longer an every day occurrence. I still get mild headaches and for those I usually take just one Tylenol. Its rare that I need two. Ask your doctor for a new headache medication. You mentioned depression which is something AVM-ers have intimate knowledge of. I ended up in Therapy to treat my depression. I just couldn’t understand what was happening to me. My prescription was and is: Prayer, Patience and Therapy, when needed. I wish you the best of luck.


#32

Thanku Dawkins .yes beyond medication only thing left is to pray and have patience.and congrulations for your avm being gone…


#33

Hello, my AVM is near the Pons. I had GK 12/15/16. In 60 minutes I’ll have my first 6 month follow up MRI. Good luck with your next step.


#34

Thank you and good luck with your procedure, as well!


#35

Yes I am facing more than 18 side effects post Gamma Knife


#36

Could you please elaborate a bit more about your side effects ?

Thx
Walter


#37

Right 96% damaged. Right hearing aid, nausea most of the time. Right vision blurred, vocals gone, feel the swelling at right neck. Uncomfortable daily while sleep. Hardly 3-4 hours I sleep. No pills working (doctors said they can’t help) still I know I can beat it up and come to my normal life. Never thought that the results are too bad in some cases. Just pray daily and move on. It’s just the energy in you which will make you beat the disabilities. Just i pray no one should face it.


#38

It’s hard to imagine more than 18 side effects post Gamma Knife! Then again, its hard to imagine having an AVM in your brain for your entire life, and not know it. I had no serious side effects after Gamma Knife. I had bad headaches for about 3 days; I remember being more tired than usual for a few weeks; and my forehead was dam sore where they screwed the halo into my head. I remember being in a state of Euphoria after the GK procedure. I think it was because something was finally being done to begin the process of getting rid of the Monster in my head. We were finally making some head-way and I was over-joyed!


#39

Thank you for sharing…sounds really terrible.

Wish you all the best.

Walter


#40

Congratulations, Sharon, It is wonderful to read of your happy outcome. For the last 20 years, I’ve had lots of physical and occupational therapy. I also have had psycho-therapy as well as take various medications. I also found acupuncturist skilled in brain injuries, extremely helpful. I had to pay out of pocket for acupuncture. I’m glad I did. Towards the start of my 20-year recovery journey, I was in a wheelchair and very weak. One other therapy I found was water exercise with a place run by Igor Burdenko. I wouldn’t be surprised if other people practice methods devised by him. I’m in eastern Massachusetts, where he has his clinics.

All-in-all I pray that you continue on the path which you have already found for yourself. I found that the tiredness did tend to get better. I still do have my moments of tiredness. I think that this is from the confusion my moderate cognitive deficits creates.

hang in there,
Kurt Cybulski