6 brain surgeries 2010 and still feeling it...

[earthnsky26]

Hey guys,

I'm just trying to search for advice and people that may be in the same boat as me, and also wondering if it will ever get better...Background info first: I was diagnosed with a 10mm benign colloid brain cyst in my 3rd ventricle on top of my fornix in September 2010, age 25. I had been having weird, "rushing" headaches associated with vertigo lasting a couple minutes (well maybe seconds, but seemed like minutes) and just feeling "out of it" for 2 months. I thought it was sinus headaches but my GP finally had me get a CT. I had just started my Doctorate program in physical therapy, and had to drop out following the 6 resultant surgeries. I immediately went to the ER and was in the Neuro ICU for 3 days, and then moved to the NeuroSurg floor after the craniotomy. My hydrocephalus did not resolve after removal of the tumor. I returned home for a day and woke up to find CSF leaking out of my sutures all over my pillow. My parents had taken me home to their house 4 1/2 hours away from mine, so that resulted in a 4 hr ambulance trip back up to where I had my original surgery, as the consulted neurosurgeons didn't want to touch me (and well understood why). 5 other surgeries followed between September and December 2010. I had a shunt placed the 2nd time. The last 4 surgeries are hazy, but I know my shunt got infected and had to be taken out and replaced, which I was stuck in bed with a ventriculostomy for 2 weeks, I had 5 lumbar spinal taps, and I also contracted chemical meningitis (which I'd only heard of bacterial or viral...)

Anyway, I now feel like I suffer psychological and cognitive issues. I have since went back to work (I actually only took a month and a half off to recover -started bartending again January 2011. Working 2 jobs) and restarted my Doctoral program in Fall 2011. I have problems with attention and focus, and can't remember things very well that I just read or heard. I have to re-read paragraphs 4 times to understand them. It takes me forever to read an article. I have to write and rewrite things in order to remember them - new, difficult things anyway. Simple, already learned things I am fine with. Math is also very difficult for me now, or at least more so than it used to be. It takes me longer to catch onto concepts and understand them. I'm not as quick-witted as I once was, and have word finding difficulties at times.

I constantly think that my classmates think I am a slacker or stupid. I have no outward signs of impairment, so I feel like they forget. I'm now in my 3rd year and have been passing all the exams, I can just tell I'm not on top of my game and it has been very, very difficult to keep up.
Sometimes when I'm tired, I'll experience odd motor symptoms, such as losing my grip and being clumsy, or saying the wrong words for things, and not remembering what I wanted to say.

But the biggest issues I am having are the fatigue and psych ones. I now have panic disorder and anxiety, which started full-fledged Fall 2011. I had to begin taking Zoloft in order to function in school and work, without having panic attacks. The anxiety is still with me everyday, even though now I take 150mg. I constantly have thoughts that I am dying or sick again. I am also depressed, and feel like I can never be happy. I am still functioning, but never feel "good". I'm just getting by. I have trouble relating to other people now, and I've always been very outgoing and friendly. I believe my personality has changed. I also suffer from what I believe is central fatigue. I never feel energized, and am always tired. I can get 9 hours of sleep and am still tired the next day. I'm just constantly, constantly tired. soooooo, so effin' tired lol.

I'm 3 years out almost, and feel like this should've resolved by now. I'm worried I will never feel normal again! Is anyone else experiencing this or anything similar? I just want to know if it will ever get better.........

Any feedback is highly appreciated.

[Bill[uk]]

"I'm 3 years out almost, and feel like this should've resolved by now. I'm worried I will never feel normal again! Is anyone else experiencing this or anything similar? I just want to know if it will ever get better........."


Hi,

You really have been through it.

I had my surgery back in 2007 and only now beginning to feel " normal" . A lot of the symptoms and side effects you mention sound very familiar to me, you do seem to have made a remarkable recovery in the time though,considering.

It does get better,it has for me but it is a frustratingly slow process.You may not even get back to where you were and the hardest part,for me anyway,was accepting things are different now. Having accepted it I,ve actually got quite used to it now.

[earthnsky26]

Hi Bill,
thanks for the reply. That's the hardest part is being able to accept that things are different. I know I've been forever changed and there's no fixing it. It's been so difficult relating to people, I feel like I'm not who I used to be. I look at pictures of myself with long hair (I obviously had to shave my head) and I don't even recognize that girl. How did you come to accept the new normal?

[Bill[uk]]

"How did you come to accept the new normal?"



Good question.....

I don,t know if you ever really do..... but then you have no choice.

There is only so much you can do to to organise your life and rehabilitate yourself and the rest is luck.....

I did find the stress and frustration did reduce somewhat once I eventually "reluctantly" accepted things were different now and I couldn't simply carry on where I left off,however this took several years. I did still lament the loss of my old self occasionally but as each year goes by it has got easier and I really do feel more relaxed with my lot now.

I always think how much worse it could have been and actually I have been very lucky. I am functioning reasonably well considering. A couple of decades ago,and even today,had it not been discovered I may not have even been here so everyday is a bonus.Some people just drop dead from these things and never have a choice or opportunity to recover.

I always remind myself of a phrase that a member here called Houghcrst said to me a few years ago when I was in the same stage of recovery as you are and I have never forgot it " the bad days are limited in number and the good far outweigh them"

There are some good people on this forum so any questions you have will get answered eventually.

Welcome to the forum

[Levi]

Hi earthnsky26:

I’m sorry that I don’t have time to say more presently... Did you have what’s known as an interhemispheric transcallosal resection? This approach to removing the colloid cyst is what’s known in the layman’s term as a partial split brain surgery.

Therefor, you might find the following document of interest.
http://cogprints.org/920/3/critchelyf.pdf

It discusses some of what it appears you are experiencing… For instance, the difficulty reading postop...
Did you have a full neuropsychological evaluation? One might be in order if not.

You mentioned Zoloft and so a visit to a psychiatrist might be useful if you haven’t had one. If it’s not helping, your psychiatrist can try other meds.

Lethargy with or without headaches could be an indication of a shunt malfunction.

Sorry for the fragments.

Regards and best of health,
Matthew

[jbrady]

Hello,
I had to respond to your post as you have mimicked he exact symptoms that I have experienced. I had one of these when I was 22. It reoccurred when I was 45, I am now 52.

I have gone through a complete life change. I was in engineering and had been with my last employer for 13 years. They initiated the transitioned for me into disability. They pretty much said to have my doctor assist me with this or they would be forced to demote me to position that they said would likely not be stable. This was a bit on the illegal side but I know that I needed to protect my future. I was able to go the disability route of which I am currently on.

I was a very stable 8 hour a day and 40 a week employee for twenty years. I am married with two children. I have been on seizure medications all of this time and currently trying to wean off of these. I lost my drivers licenses for nine months after the surgery. My doctor will suspend my licenses for two months to see if I can get off the medications. This will be a very difficult time so I am just not sure how to proceed.

My memory has been very difficult and I currently employ a battery of methods to aid in this area. I would be very interested in how this experience as altered your life.
Jack