Has anyone experienced brain swelling or necrosis without a lot of head pain?

I had GK on 7-22-09, I have been in ER three times because I feel pressure in my head.

They did CT Scan and MRI and they say that there is no brain swelling.

Neuro said that if I had brain swelling, I would be experiencing severe pain in my head and tylenol would not be able to take it away.
I’m not sure about that because it feels very tight.

My avm is in the back of my head, that is where I had the GK.

I was experiencing very light muscle twitches and the hospital said that my electrolytes were off balance.
I’m now experiencing slight head shaking and finger and leg movement once in a while. I experience these things when I’m falling off to sleep once in awhile.

Neuro does not expect me to have seizures because of where the avm is located.
I’m wondering if that head shaking is a seizure ?

Let me know how your brain swelling/necrosis presented ??

I guess for the doctors the CT Scan or MRI’s is the ultimate test to check for brain swelling. On one hand it is good that they didn’t see brain swelling so early, but I hope they are not missing anything because my head sure feels tight.

Peace,
Ameenah

I had massive swelling from radio necrosis. It did cause massive headaches for me at times and caused my balance to be off

Thanks for responding Amy.
The Neurosurgeons keep saying they would expect pain if I had swelling.
My head sure feels tight, but the pain is minimal.
They don’t expect brain swelling/necrosis to six months down the road or later.

Peace,
Ameenah

I had alot of tight feelings too during the first 3 months after radiation. I also experienced alot of nausea. The necrosis showed itself after about 9 months and the massive swelling started to show up after about 13 months. I had to take massive doses of steroids, which created new problems for me, and then I had to be taken off the steroids and do 5 months of hyperbaric chamber treatments. NO fun at all. On my last appoint it took 9 months but the swelling is showing massive improvements. I was told it could take up to two years for the swelling to completely go away. I am however feeling better and I am slowly losing the 60 lbs of steroid weight that I put on. It has not been an easy journey for me, bot slowly there is light at the end of the tunnel.

Ameenah said:

Thanks for responding Amy.
The Neurosurgeons keep saying they would expect pain if I had swelling.
My head sure feels tight, but the pain is minimal.
They don’t expect brain swelling/necrosis to six months down the road or later.

Peace,
Ameenah

Hi Amy,
I wonder if the tight feelings right after GK always result in brain swelling ??
They gave me a tapering dose of steroids the three times I went to the ER. I was on them for week at a time. They say that they didn’t see brain swelling, but they gave me the steroids just because I was complaining.

Peace,
Ameenah

Ameenah-
I’ve had muscle twitching for almost 3 years now. I am on neurontin (gabapentin) and its much better now. I had the twitches and spasms when I was just falling asleep so it interfered with my sleep - not good. I don’ think the twitches are from brain swelling, I think they are from brain damage from the initial bleed.

Thanks Brian, thank God we have this site, doctors don’t tell me much. If it is not devastating, they don’t seem to be able to diagnose it.
I keep forgetting that my brain is damaged LOL.

Peace,
Ameenah

i have massive brain swelling from GK. it took 3-4 months to manifest. i have paralyzation in my arm and leg. i can walk but only at 1 speed and i have no movement from my forearm to my fingers. i have no headaches or any side effects from the treatment. so you may not get headaches from GK.

Ameenah said:

Thanks Brian, thank God we have this site, doctors don’t tell me much. If it is not devastating, they don’t seem to be able to diagnose it.
I keep forgetting that my brain is damaged LOL.



Peace,

Ameenah

Ameenah, you know my son has brain swelling. He had very mild headaches and really only one that Tylenol could not take care of. We would never have known just from this because he got occasional headaches before that. I would say, from our experience, that headaches are not necessarily going to be present with brain swelling.
I would say numbness, weakness, he had focal seizures. After they diagnosed his brain swelling, our neuro did several FULL physical examinations for ANY weakness in his limbs, or vision issues. It was a very thorough exam and took a good amount of time. Have you had this done?
I have seen my son’s MRI’s showing the swelling. It’s a very obvious thing to see when you can compare right and left sides. His looked like a big cloud covering his left side.
Since you are not really expecting brain swelling at this time after Gamma, could it be from your medications? or something changing with regards to the embolizations?
My son gets alot of twitching now which he does especially notice before he is going to sleep but we have attributed that to the high dose of medications he is on.
I hope you can find out soon what is up. That must be scary for you.

Thanks Joy for the information.

It is scary, the docs say that the Mri or CT Scans do not show brain swelling.
I’m glad to know that it would be obvious on the MRI.
Something is up because my right side is more numb than it was before, it feels a little weak too.
The thing that helps me is that they didn’t give your son steroids right away,
so maybe it’s not always so bad. They gave me steroids when I went to ER because I was complaining.
I was on a tapering dose for a week, three times.

They check my strength, my eyes, make me touch my nose and hold my arms up as if I’m holding a pizza. The docs claim my strength on my right/numb side is good. I’m naturally strong so they may not be able to tell that it is weak. I tell them it is weak to me, they don’t listen to that.
I guess they gave me a thorough exam.

Everybody doesn’t have severe headaches with brain swelling. This is what I gather from the forum. Every time I mention head tightness or cranial pressure, the neuro people say we would expect severe pain if you had brain swelling. After reading the forum I don’t think that severe pain has to present with brain swelling. I see the doctor on 10-20-09, I’m going to call and see if I can see him before, I will let you know what he says because I’m going to tell him that I hear of people presenting with brain swelling without severe head pain.

I’m not on much medicine, a blood pressure and iron medicine.
I take tylenol everyday, my iron pill is because I’m peri-menopausal and it causes heavy bleeding.
I do have twitches when falling off to sleep, not as much lately, I get a head, finger or leg jerk every now and then. They said my twitches were because my electrolytes were imbalanced. I don’t know if that is true or false.

Thanks again Joy.

Peace,
Ameenah

My daughter had slight swelling in her brain 6 mths after her linac radiosurgery. Initially she complained of weird sensation in her head, then she had some twitching in her face and legs. We took her to ER, where they did an MRI. My daughter had to be on steroids for a few days. Maybe your symptoms are from the AVM shrinking?

Thanks Lana,

I went to ER three times and the doctors did not see any brain swelling on CT Scan or MRI.

The third time that I went to ER they said that it was not any swelling and the avm was doing what it was supposed to do. I should of asked, “what is it suppose to do ? LOL.” I just assumed shrink. I hope you are right and it is shrinking:)

How is your daughter ??? My oldest is pregnant and I am worried, I can only imagine an avm in one of my children.
I hope your daughter is doing well !!!

Peace,
Ameenah

Thank you so much Ron Ryan, I have to tell my Neurosurgeon that someone has brain swelling and he doesn’t have headaches.

Neurosurgery nurses and doctors keep telling me that if I had brain swelling, I would have a lot of pain.

I had my GK on 7-22-09, I went to ER three times since I had GK because my head feels tight, they did CT Scan and MRI and they did not see brain swelling. My head still feels tight. The third time I went to ER my arm and leg was getting more numb. My right side was already numb from a stroke that I was given during an embolization on 4-16-09 at another hospital. After GK knife the numbness seemed to be worst.
They gave me a week tapering dose of steroids the three times I went to ER. When I was done, my head felt tight again.
As of today 10-13-09, I am still getting more numb and walking does seem to be more difficult.
I see my neurosurgeon 10-20-09, I’m going to tell him about your brain swelling without severe headaches. Every time I call or go to ER, they say how bad is your head hurting, I say not bad, but it feels tight.

What are they doing for your brain swelling ?

Peace,
Ameenah

ron ryan said:

i have massive brain swelling from GK. it took 3-4 months to manifest. i have paralyzation in my arm and leg. i can walk but only at 1 speed and i have no movement from my forearm to my fingers. i have no headaches or any side effects from the treatment. so you may not get headaches from GK.


Ameenah said:
Thanks Brian, thank God we have this site, doctors don’t tell me much. If it is not devastating, they don’t seem to be able to diagnose it.
I keep forgetting that my brain is damaged LOL.


Peace,

Ameenah

I did not see the doctor on 10-20-09, I saw the nurse, I told her that I heard of people presenting
with brain swelling without severe head pain. She looked at me and said, we look for severe head pain.
She really didn’t address what I had said, I knew I wasn’t going to get anywhere talking about it, so I
just stopped. They say they don’t see swelling so I’ll just wait until my January appointment to speak about brain swelling again. They seem to think that I’m doing fine and progressing well.

Peace,
Ameenah