My daughter ,13, doctor has recommended gamma knife or proton beam for her brain stem AVM. If anyone has had either procedure,please comment below about your experience and doctor who did procedure. What is recovery time? Will she lose her hair? Will she have to have a halo?
I was 13 when my brain AVM ruptured, I had the gamma knife surgery. I had to stay two nights in total, but it wasn’t very long really. I didn’t seem to lose any hair, but I’m not sure whether that varies from person to person. I had a halo but again, I’m not sure whether everyone has it
I have had gamma knife and regular (high) beam radiation. I lost hair only where the pinposts were in the back of my head.
The frame does need to be worn during angiogram and radiation but comes off as soon as the radiation has been administered.
My husband had gamma knife 5 years ago. He did lose hair around the targeted area, but not all of it. Back then he needed to wear a metal grid of sorts to keep him in place. That was very uncomfortable, but with new technology a lot of these radiosurgery systems move with the patient as he or she breathes or shifts. My husbands AVM is on the optic nerve so he had a very low dose which unfortunately did not help him. It does take 3-5 years to see any result. Also, his immune system was so low after the treatment that he had contracted a rare parasite which caused him much pain, so ask the doctor how the radiation will affect her immune system and what precautions you can take to keep her well. Hope I helped some. Good luck!
The two procedures can't be compared and differ from one another. I had proton beam radiaiton. I live in CA. and went to Boston, MA., Massachusetts General to have it performed. The machines differ from place to place too. It also takes 2 or more years to become effective. It didn't obliterate mine, but strengthed it. Still, I suffered more hemorrhages after treatment, and was treated a second time. I had to wait 3 years though. Decades later, the AVM leaked and created a hematoma on my brainstem. It was evactuated along with the always inoperable AVM. I am recovering now and it is difficult. There was no halo. The radiation spared my life until surgery was necessary. It is no where near as difficult or painful as it was decades ago. An extremely competent neurosurgeon will know where to send you and what treatment option you have. The brainstem is serious business and is not to be taken lightly. I also was 14 when my AVM was discovered. Best to you and your daughter.
I had radio static therapy. A high dose of radiation shot to the arm, but mine was deep inside the brain. I did have to have a halo put on because I had to have my head completely still. Now don’t take my adventure for a good example. I was told it would kill the ruptured avm, shrink it and it would disappear in a year. Now 10 years later it has not shrunk, died or gone away. A lot of people have had great success from this, but I’m a little hard headed anyway. I did lose a small amount of hair, but I had basically shaved my head because they had to put in a shunt and shaved one side but not the other. I do hope that she has great success from this and tell her not to worry if she has to have the halo. I thought it looked like a good new fashion accessory and thought it would be the new “rage” but I guess I was wrong. Anyway, the halo is just to bolt you to the table when they shoot the beam of radiation so that they hit the right spot. It’s not that bad and after a while you will forget you have it on. I had to wear mine for about 5 or 6 hours and could eat and drink and walk around with it on. Mine was done at Duke University by a guy they said was the greatest neurosurgeon in the world. Well turns out, he wasn’t so great, he didn’t last there a year before he either resigned or they let him go, never found out what happened with him, but last I heard he was somewhere out in California. Again, Good Luck and I’m sure everything will turn out just fine.
Hi there my daughter had gamma knife 18 months ago, because of her age (16) they thought it best to give her a general anesthetic as it would be a bit too traumatic for her being awake. It was definitely the best way so look into that, She didn't lose any of her hair, and will have a scan 3 years later, so we are at the half way mark now. She has been absolutely fine with no problems. Here for you if you have any more questions,all the best
I had LINAC radiation. I had the halo first go around. Had 2 sessions as mine was pretty big. Didn't want to give me too much at one time to keep from damaging good brain. Did have some hair fall out but I could cover it up. After my second round I did have a seizure one week later. I then had several after that. It has almost been 6 months since my last one. But it does seem to be working. Feel better every day. Last treatment was August of 2013. They'll do another angiogram in August of 2015.
I had an AVM treated by gamma knife surgery which is above my left eye. I had a frame fitted to my skull from around 09.00 to 15.00 - the pressure on my head was intense as they fitted the frame, but this subsided and anaesthetics ensured I didn't feel the pinpricks. I felt the front right pinprick for a little while longer as I had a junior anaesthetists, but even that didn't last long.
Like O.C.Taylor I was only in the hospital for 2 nights. On the day I had an MRI, an angiogram and then the gamma knife procedure, which was the easiest part. It was put into a tunnel much like an MRI scanner, but with no sound and they played my music from my iPhone to me. In total, I took four days off work - the last being the Monday after the weekend. I was tired, exhausted, but that was all. The angiogram was more to recover from than the gamma knife itself. I find angiograms particularly unpleasant.
The scaring from the frame was gone within a week - I didn't tell most of people at work that I had the procedure and they wouldn't have known. Due to the position of my AVM I didn't lose any hair. However, a lady that was in at the same time as me had an AVM treated near her ear and was told she may lose a small patch after the treatment.
I'm based in the UK, so went to Royal Hallamshire. The team in Sheffield were amazing, I felt very well looked after at all times and wouldn't hesitate to recommend them.
I forgot to mention that through the last 30 years, everything that came to light and was a little issue for me was. blamed on the radiation, yet it still kept me alive in spite of multiple bleeds. I don’t even mention anymore that I underwent treatment as it gets blamed for everything! They did discover a meningioma tumor this year, and from it’s location it is believed to be there due to the radiation, and is located where the beam would have exited. I underwent more radiation to freeze this tumor in July. I had the Linear Accelerator performed on it, no halo, but a mask of my face was made and I was bolted to the table. This form of treatment is also a choice for some AVM’s. Not mine though.
I have had it 3 times so far the last was on the stem of my brain. Today I was told it’s all but gone. Honestly last year I was told they could not give me 6 minutes but they were willing to take this long shot .I agreed today I was giving a wonderful gift for Christmas. It shall be gone within the year. I had a long battle but my brain stem was bleeding and I made it.faith and trust and good doctors can make a difference. God be with you and your child. Praying for the bestfor her.I do it all over again in my case. Every shot is a chance in my eyes.
I had Proton Beam Radiation at MGH as well. A dear AVM Survivor friend of mine created this several years ago, which may be helpful for you.
Hey there! I had Gamma Knife radiosurgery for my partietal/temporal AVM.
1. My experience: Went to the hospital at 6AM. They took me to the prep room. They gave me a sedative. They put numbing cream on the front of my head and on the back (4 spots in total) where the Gamma Knife halo goes in. I had to get an Angiogram. After angio I was rolled to the Gamma Knife unit. I don't remember much as it is blurry because of the sedative. I do remember that for me they put music. I had it with Dr. Lunsford at UPMC (3 times).
2. They kept me at the hospital for a ccuple of hours (I was on my way home by 4 pm). I did read that other places prefer to watch one overnight. After that I was advised to go home and rest and to try not to strain as my groin had to heal from the angiogram. The next day I was up and about. I had to travel the next day. I did have a sore groin for about a week but nothing unbearable.
3. I did lose SOME hair (I do have a bold spot). The spot is small and after my first two times it grew back.
4. For Gamma Knife there is a halo, it helps to focus the radiation beam from what I understand. I still have the marks from the Halo about 2 weeks out, but I do know from the prior times that in about a week or two more there will be no sign of the marks.
For more info you can go to these places:
An article on Radiosurgery
My daughter, now 13, had proton beam at MGH when she was 11. She lost small patches of hair where they applied the small conductors. The hair loss was not very noticeable. She was tired and cranky for a week or two after. Her AVM, which is in her right parietal lobe, is now almost gone. I do not know about side effects with brain stem though.
I can totally relate to what you are going through! My daughter had Gamma Knife October 25 of 2013. She had an AVM on her brainstem too. She was 17 at the time. She went to the hospital early in the morning and put the halo on. Then they did an MRI, CT scan and angiogram. She was at Beaumont Hospital in Royal Oak, MI. They were the BEST!!! We bring them cookies when we visit! :) My daughter, Rachel, has had MRI's at either 3 or 6 month intervals. She never lost any hair and was awake through the procedure but heavily sedated. She had 4 tiny little marks where the halo was attached. She had a headache when she left but that was the only side effect. They told us not to expect any change for 1 year and that it would probably take 2-3 years to obliterate - but --- after one year it has shrunk to about 1/3 of it's original size!! I will keep your daughter in my prayers. And you too!! I know how hard it is to have your daughter go through this experience. I hope it all goes very smoothly and she has a wonderful, quick recovery!
My 22 year old son had Gamma Knife on an AVM in the Medulla of his brain stem 7 months ago. His AVM is small-about 1 cm or less so they only gave him 15 gamma rays (or whatever is the unit of measure). They said with that strength of radiation there is little chance of any reaction from the radiation. They also calculated about an 80% success rate. My son has had no adverse effect from the radiation. He does not notice anything. He was sick for about 2 days after and then all symptoms went away. His treatment was done at Toronto Western Hospital. Good luck with that.
I had gamma knife surgery 25 years ago. In a year, the AVM was nearly totally gone. It took almost two years for the AVM to completely disappear. It has not come back. It was not very difficult test and I didn't notice any after effects. The hair even grew back in the back spots. The front spots were bald, so there was no hair to lose.
At that time, the halo was required to hold the head in place. I have seen comments here about younger kids getting a general anesthetic. That might be a good idea. It was a little unnerving watching them do all that work.
I also had a crainiotomy (massive brain surgery). This was a more difficult operation to recover from. I was in a coma for a week and it took a year to come back to earth.
I had a MRI a couple of years ago to verify the longterm effects. It showed the AVM was still gone.
My 20 year old step-son had Gamma Knife procedure in January of 2014 for a ruptured AVM in the occipital lobe. The procedure did not cause any loss of hair. He did have some nausea following the procedure but he went away over the next few days. He did wear a halo but the places it was attached have healed and there are no visible scars on his scalp or forehead. His procedure was performed in Shreveport, LA at the LSUS Medical Center. At the six month check up the doctor did not see any changes but had cautioned us it would take a while for changes to appear. He will be going in for his one year checkup in the next couple weeks and we are praying for a good report at that time.
Hello, I had GammaKnife in September of 2008. I had to wear a halo. I barely lost any hair, just a few tiny patches in the front of my head/hairline.
Recovery time for me was about two years (I'm sure that it varies for others). I was not able to talk until almost a month post operation. I had double-vision (probably because my rupture was in the Occipital Lobe, I'm not sure) which did improve a few weeks past surgery.
My gama knife in 2010, Pittsburgh,Pa. UMPC Dr. Konzeoka(sp). UMPC statistics uses a 3yr mark for total success. After 1yr my results showed 30-40%shrinkage, Feb. 2014 angiogram showed no blood. Praise the Lord. My AVM had no leakage, at the time my wife’s research found that UMPC was one of the top Gamma knife hospitals in the nation