During emergency room treatment following a minor car accident in December, a CAT scan of my neck accidently caught a glimpse on an unruptured aneurysm. During the angiogram the next day, they found twin aneurysms, dangerously wrapped on a shared branch on my CVA in the speech center of my brain, a 2.5 cm and a 4.5 cm, both ballooning off the vein and tangled. They needed clipping, there was no other option.
If they ruptured, I was given a 0% chance of survival, but because of "their trickiness" neurosurgery department after neurosurgery department declined treating me, Dr. Kim in Seattle, one of few surgeons in the world with the qualified for the "tricky" I needed.
While on the table for a cranitotomy, the location of my aneurysms proved more challenging than expected, and an orbitotomy was performed to gain better access. I woke quickly, and luckily had very few of the normal complications. I was discharged from the hospital after only 2 days, and returned to work in less then 3 months.
However, I had "rare" complications with nerve damage (3 out a 500 chance). So, I feel like an icepick is driving through my head, unless medicated, and while medicated, can barely handle the wooziness and double vision.
Five months post-surgery, I spend my days feeling like I am "hot tub sick" (that awful wooziness you get when you have stayed in a hot tub a little to long). And fighting overwhelming fatigue.
I still await follow-up with "long term pain specialists". I endure three times a week physical therapy for the whiplash damage the accident caused, but the brain surgery pain has delayed in healing. I have heard both doctors and nurses tell me "It is brain surgery, what did I expect, it will take a long time to heal." (Some of the very same doctors and nurses that told me my recovery would take three months.) I am told to be thankful I can still talk and did not have a stroke.
I fight the glare, the heat, the icepicks, the lack of sleep,
pain, headaches, tingling, numbness,
quizzy, woozy, fatigue and more fatigue daily.
Not to mention lonliness from lack of understanding
in how hard and challenging
and ongoing the struggle still is.
I am lucky to be alive... yes.
But I do not feel lucky... at all.
It hurts, and is relentless,
and it is hard to think it will get better.
I try to focus on the long term, but find myself very lost
in the here and now.
Hello
Your story sounds a bit like mine. I had a giant unruptured aneurysm causing double vision and problems with thinking and memory, then had coils and arterial occlusion in Dec 2011. So, no craniotomy or orbit surgery. I did however get trigeminal nerve pain post op probably due to the position of the occluding balloons. I diagnosed the pain myself (I'm medical) after a few weeks and got my medication changed to something better for nerve pain. What are you on? I take amitriptylline, though gabapentin or carbamazepine would have been alternatives. Now I get intermittent twinges, but it is pretty well managed. Push for that pain clinic appointment.
Like you I came out of hospital expecting to be well within a few weeks, but it is taking much longer than I expected. The fatigue and difficulties with memory and reasoning have been the main problems and I am only able to work an hour or so at a time. A return to full time work looks a long way off. I too am pleased I am alive and that the risk of death or stroke has been dealt with, but I don't think I have yet adjusted to the possibility I may never be quite the same again.
So, you are not alone! I hope you get the reassurance and help you need through this site, there are some great people here. I have been particularly encouraged to read about others experiencing the same things. I have learned that I am still in the early days of recovery and I will improve. You will too.
Judith