Comment

Comment by Linda on February 1, 2012 at 3:49pm

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?

Comment by Andrea Fisher on January 25, 2012 at 3:11pm

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!

Comment by ky on January 24, 2012 at 3:38am

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 just 3.5 months since my GK), he referred me to a neurologist though for headache management. Hope it helps.

Comment by Crystal Gonzalez on January 23, 2012 at 1:20pm

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.

Comment by Gerry H on January 22, 2012 at 12:49pm

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

Comment by ky on January 13, 2012 at 4:30am

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.

Comment by Gerry H on January 12, 2012 at 2:47pm

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 think they are necessary. I find it challenging to have confidence when all of the Dr.s have different opinions...... About how long does the facial head pain last?

Comment by Seán on January 8, 2012 at 5:31am

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 checked with another hospital which is a center of excellence for neurosurgery. They said that I did not suffer a bleed but I had swelling around the CK radiation treatment area. My neurosurgeon was able to clarify this the following day by explaining that the radiation was actively working and causing the AVM veins to attentuate, stretch and shrink. I was likely to suffer a number of side effects while it worked over the next 18 months.
Prior to the seizure I was suffering tingling in my left hand. On the day of the seizure it became very severe. My AVM is on my right side and most of the side effects have been down my left side and mostly in my left hand. Over the past week I have been suffering from bad headaches. But I know now that this is part of the ongoing side effects. Hopefully the headaches will burn themselves out soon. I can cope with numbness and tingling in my left hand but the headaches are more difficult to cope with.

I wanted to let people here know my experience to get the benefit of feedback from people who have suffered similar side effects. And also to point out if we find ourselves in a hospital which is not aware that the shrinking and attentuation of veins following radiation treatment can appear to be bleeding should consult with your neurosurgeon.

Take care

Seán

Comment by Manynelomom on November 17, 2011 at 11:44am

TY Lars!

Comment by Lars on November 17, 2011 at 5:39am

I hope you can get a second opinion and mabe get a short time disability for a few weeks.
When he is in that state it is not very safe to do heavy work and mabe also use dangerous tools.
Normaly you can get a short time disability income for other types of illness too from you're main doctor.

Just try to explain the sitoation for him too and say what type of work he normally do.
I beleve he will understand it better.

Some can go strait back to work and others not.
It is a big differense what type of work a person normally do and also every person reacts differently after a operation and the healingtime and symthons later is very individual.

look at the operation and vains like a gardenhose or a waterpipe that is leaking.
To be able to fix the leak it is much more easy if it is not much pressure int the pipe/ vain.

Many people that do not operate machines or do heavy lifting and so on, can go back to a desk job and not get much more strain than if they do other everyday thing.
But when you do things that press the body much more it should get some time to start healing first.
The same with operating dangerous machines and you're concentration is out is a bad thing.

I really hope you will get understanding for the situation from another doctor.

I was suppose to be on a oilrig, but the doc have saied to me that I must wait to I am completely healed (2-3 years) before I can start working again.
He also saied if I had a more easy job I could have started after a few days.

Again all this is very individual after type of work and reactions after the operation.

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