Frequent headaches and dizziness

I wish I could crawl into my son's head to see what he's feeling. As a parent, it's hard not being able to truly understand what Ryan's going through right now. Since his bleed, he's had frequent headaches (ranging from 5-7 on a scale of 1-10 with 10 being the worst ever) and dizziness (ranging from 3-6). Is this normal? He hasn't had a craniotomy (although he did have a brain biopsy on March 9th) or any other treatment for his AVM yet. Can the AVM itself cause headaches and dizziness even after the hematoma has been re-absorbed into the body? Could it be from his biopsy? It's frustrating because he's missed 70 out of the last 90 days of school since his AVM ruptured. Any insight would be appreciated!

He’s on Dilantin and is in the process of being switched SLOWLY over to Keppra for seizure activity. These headaches and dizziness have been very consistent, though, since his AVM bled at the end of February. The meds have not been as consistent.

This sounds fairly normal and consistent with how things have been for me and others that I have read about. After my slight bleed I had headaches and dizziness for a few months and still have them occasionally and its been six months.

My daughter Elizabeth had a massive brain hemorrhage from an AVM rupture in 2007. She has had frequent headaches since that time. At first, even after a short period of activity she would have a headache - especially if it was reading, watching tv or on the computer. Riding in the car always caused a severe headache. She was on Tegretol in the beginning but that just made her sleepy. After her AVM was embolized she started having normal EEG’s so the doc took her off the Tegretol. We are 3 years out now and she is still having headaches. I would say 2-3 per week. She sometimes still complains of dizziness and blurred vision too.
I can sympathize with your situation. Elizabeth was in 11th grade when her AVM ruptured. She was never able to finish high school. We filled out the paperwork for disability and with her medical records they approved it first time through.
Why did your son have a brain biopsy?? Just wondering – I am a Registered Nurse.

He had a brain biopsy because when he had his initial MRI after the bleed (although we didn’t know it was a bleed at that time), it looked like he had a butterfly-shaped tumor in his brain on the anterior of his corpus callosum extending into both hemispheres. To the doctors, this lesion’s appearance was very consistent with glioblastoma multiforme or possibly primary CNS lymphoma. They did a biopsy in order to determine which of the two it was, but they found out from the biopsy that it wasn’t a tumor at all – it was a hematoma from a brain hemorrhage. Because of the hematoma, they couldn’t see the AVM at first, and the shape of the hematoma had fooled them into thinking it was a tumor.

That first month before we knew the results of the biopsy was HELL because we thought he had inoperable, terminal brain cancer and he’d be gone by now.

Sounds like your son and your family have been through hell for sure…it must have been a huge relief finding out it wasn’t cancer, but now you are dealing with the aftermath of a brain hemorrhage. A mixed blessing, huh? I have a 7 year old son so I know how precious he is to you! What is their plan to shrink his AVM?

Either gamma-knife or a craniotomy, whichever is less risky. The neurosurgeon (not an AVM specialist) said that if Ryan was his son, he’d check out the gamma-knife option. The gamma-knife neurosurgeon (also not an AVM specialist) said that if Ryan was HIS son, he’d see a neurosurgeon who specializes in AVMs to see if he could do the surgery with less risk than the gamma-knife. There are no neurosurgeons specializing in AVMs in Indiana, as far as I’ve been able to tell, but insurance needs a darned good reason to cover Ryan’s care out of state. I’m TRYING to get SOMEONE to write an authorization stating a darned good reason, and that’s where I’m currently stuck. In the meantime, Ryan’s AVM sits there like a ticking time bomb just waiting to explode again.

I’m getting frustrated!

Our daughter was treated at Upstate University Hosp in Syracuse, NY which is the leader in neurosurgery and gamma knife procedures in central NY. Her AVM was large and in the center of her brain - We were told the gamma knife was not a good option if the AVM is deep since it causes damage to normal brain tissue in the process. The neuroradiologist there did a cerebral angiogram and embolized the aneurysm, then blocked off the main artery feeding the AVM with a material called “onyx”.

We at least had a team of neurosurgeons and neuroradiologists who were all in agreement about the best way to treat Elizabeth…You have doctors in exact disagreement! Is there a reason your son’s AVM can’t be embolized? Craniotomy sounds kind of drastic in your case. How about having one of them write a letter stating your son needs to see a Pediatric neurosurgeon? That should get you out of state.

Thanks for responding, Mary. Ryan’s AVM can’t be embolized because of its positioning. The feeding arteries shoot off at a 90 degree angle from one of the main arteries that runs anterior/posterior alongside the left hemisphere. They’re concerned that the catheter would not make the right-angle turn and instead they’d be glueing a main artery. That’d be a bummer.

While the gamma-knife guy didn’t express concern about damaging other areas of the brain (Ryan’s AVM is right in the middle of his brain, too), I wonder if he really IS concerned about that but chose not to voice his concern. From what I’ve read, each individual shot of radiation is too weak to do any damage to healthy tissue; it’s the convergence of all of them that does the trick. However, they’d have to radiate his entire head because of the location of his AVM. They’d have to. So what is the risk of damaging his healthy brain tissue, REALLY? If it’s more significant than I’ve been told, that’s not acceptable, either. :confused:

Mary Snyder said:

Our daughter was treated at Upstate University Hosp in Syracuse, NY which is the leader in neurosurgery and gamma knife procedures in central NY. Her AVM was large and in the center of her brain - We were told the gamma knife was not a good option if the AVM is deep since it causes damage to normal brain tissue in the process. The neuroradiologist there did a cerebral angiogram and embolized the aneurysm, then blocked off the main artery feeding the AVM with a material called “onyx”.

We at least had a team of neurosurgeons and neuroradiologists who were all in agreement about the best way to treat Elizabeth…You have doctors in exact disagreement! Is there a reason your son’s AVM can’t be embolized? Craniotomy sounds kind of drastic in your case. How about having one of them write a letter stating your son needs to see a Pediatric neurosurgeon? That should get you out of state.

That does sound complex. We have heard the best place for pediatric neurosurgery in the states is the Hyman-Newman Institute directed by Dr Berenstein. Have you called them? You can get their information online. They are very good listeners. You can send them a cd with your son’s MRI or CT scans with a copy of his medical records and they will give your their best advice for treatment. There is a fee of $400 I think but small price to pay to have the country’s top minds working on a solution for you! They may want him to be referred to them for treatment.