My cavernoma was located on right temporal lobe. I was diagnosed on 27th July 2022. My symptoms mainly included severe headaches that the Doctors (GPs, Neurologists) said were episodes of migraine.
I consulted 3 Neurosurgeons in the UAE and India and they told me that my recurring headaches were not a symptom of the cavernoma and surgery was not required unless I had episodes of epilepsy and seizures. I did not have any such episodes till 5th of February 2023 when I had to be taken to the Emergency Room due to extremely severe headache, nausea, loss of memory about my husband, my home, my pets and extremely too much confusion about what is happening to me, as I felt something is wrong and I am probably going insane.
My surgery story
On 5th Feb 2023 night, in the ER, an emergency CT scan was done which showed hammoerrhage of the cavernoma malformation and that I am undergoing a stroke causing early herniation and I had to be transferred to Cleveland clinic for an uneventful emergency craniotomy or evacuation of hematoma, supratentorial, intracerebral on 6th February 2023. My family was very scared of the consequences of the emergency surgery as it was not an elective surgery.
The surgery lasted for 5-6 hours, with severe pain after the surgery. Recovery initially was fast, as I was assisted for walking and was on medication for pain management. I got a total of 26 staples on the right side above my right ear. There was swelling of the right eye for 2-3 days after.
Since it was an emergency surgery, I did not get much time to prepare for the surgery. I did find it difficult to remember a lot of things after the surgery. Mobility and loss of balance was quite and issue.
Recovery so far
2 months post-surgery, few things that I note is that recovery is slower than I thought it would be. Fatigue is quite a lot. Though my Doctor said I can get back to working out in 4-6 weeks, it still feels like there is a long way to go to build endurance and strength.
Headaches on the surgical side are persistent and the Doctor said medication should be taken for pain management. I still feel out of place in closed spaces, with people around. It’s tiring in general, to perform the basic tasks. Vision issues and issues concentrating.
Five pieces of advice I would give to someone ahead of surgery
1.Recovery time is longer than we think.
2. Fatigue is something we need to overcome slowly.
3. Take one step at a time and don’t over exert yourself.
4. Your friends may not always understand the seriousness of the situation, so stay strong.
5. People mostly assume, when your scar heals is when you have recovered, but the process is much deeper than just the scar, there is a lot of healing that is yet to happen, give yourself time
I didn’t have a chance to pack my hospital bag but if I did, I would, carry change of clothes, toiletries, shades or something to cover my eyes with. A comforting blanket.
What I have learned
I’ve learnt not to take any small symptom lightly. I initially just took my headache as a migraine and did not know I am having a stroke. Its always better to keep ourselves updated and informed about symptoms of a stroke, seizure, epilepsy, so that we ae aware of what is happening.
Maybe more Doctors should be informed about symptoms of cavernoma and to include headache as a symptom and not dismiss patients like me by mentioning it as just a migraine. Further investigation should be done. Living with a cavernoma and fatigue is not normal, more medical attention should be provided or educated.