Possible side effects from Gamma Knife need help

[Concernedwife3]

Hello everyone, I am so glad I have found this group and I am hoping to get some answers for my husband. Long story short he had gamma knife beginning of February of 2023 for a tumor that came back. He had a craniotomy in 2014 to remove a tumor same area, this was a very rare tumor near the brainstem. It is called a cavernous angioma, it is benign but a calcified tumor. Due to it coming back which his neurosurgeon almost guaranteed it would not but it did. He said surgery a second time to remove should be the last resort because it would be so much harder  due to scar tissue and the titanium mesh in there not to mention the dangers of where it is. So Gamma knife was strongly recommended to at least keep the tumor from getting bigger. They also had said being his tumor is very rare (only 70 known cases since the 70's) gamma hasn't been done on this type of tumor but tumor board didn't see why it couldn't work
He had gamma knife and had all the normal side effects after, severe headache and just the tenderness at the pin points from cage. He had no swelling in the brain. Now for the issues. One month later he continued to have bad headaches, now my husband has always suffered from headaches and was kind of diagnosed with occipital headaches but then he started to get slightly dizzy, started out just off and on but progressively got worse. Had repeat MRI no swelling everything looked good. Both neurosurgeon and oncologist said would not be from gamma knife or from the tumor.  MRI shows no change in tumor which it most likely will not shrink due to the type of tumor but looking to be sure hasn't grown. Now 6 months later he has severe constant dizziness, nothing helps. He was referred to a neurologist and he suspects migraines yet so far none of the migraine meds have helped. He keeps getting sent to new neurosurgeons for "another" opinion due to we keep calling about this dizziness and I think they are just trying to pawn it off on someone else, I don't know  so far 4  have said not from gamma (or highly unlikely) or from tumor. The tumor I'm not sure only because if it hasn't changed at all and he didn't have these symptoms before gamma knife it wouldn't make sense. We are so worried this dizziness has been caused from the gamma knife and if it did damage a nerve it wont ever repair. He is having so much trouble functioning every single day, can't drive because of it which causes issues because I work. We don't know what to do. He just had another MRI no change no swelling.
Has anyone experienced this and can give us any hope?

Thank you 

[donjehle]

Hi Concernedwife3, and welcome to the ANA Forums!

I am not a physician and I certainly am not qualified to comment on your husband's condition.  However, a lot of what they told you seems confusing to me.  I'm actually glad that the two of you have have consulted various specialists.  I don't know that they are trying to pawn it off on someone else; since it is a rare condition, it is probably wise to seek counsel from several specialists.

The dizziness I experienced was from the tumor itself, not from Gamma Knife (as I have never had GK), so I do not know if GK could have caused it.  My understanding is that GK normally zaps the acoustic neuroma which causes the tumor to swell at first and then it eventually shrinks as it is dying.  If you had told me that the MRI revealed that the tumor had swollen, then I might have thought that was the reason for the headaches, and that they would go away once the AN had shrunken.  But if it has remained the same size (being it is the type of tumor it is), I honestly do not know what to tell you other than to keep seeking answers from the specialists.  Hopefully you will come across one with the answers you need.

I wish you and your husband well in your journey!
Don

[mwatto]

I wonder if this is neuro inflammation? Chat to specialist re maybe dexamethasone. It could be edema swelling from just the irritation and increased intercranial pressure. I do know boswellia has been helpful for brain edema. Low dose diazepapam is used for traumatic brain injury too - I have tried that myself- not often but its a muscle relaxant and anti inflammatory that can also reduce blood pressure. However chat to specialist re all this. Melatonin may also help- sleep is very healing. I add on a fragment of zolpidem for deep quality sleep. My specialist was ok with this. Sleep also cleans/ washes the brain as it were- removing dead cells, proteins etc. I hope these suggestions help at least to start a conversation with your doctor.