Post-Treatment > Cognitive/Emotional Issues
It's starting to really hit home...
Mimispree:
Hi Everyone:
Thank you everyone who posts questions and answers, or just shares their feelings in this forum: It's a place to go.
I live in a very rural town in the southern Utah desert, so it's very hard to get to a doctor. In fact, I haven't seen a doctor since I left the hospital post-op August 5. My surgeons have been urging me to go back for two months now, but during the six hour car ride home I developed double-vision and it still isn't completely gone three months later. Just going six miles in the car elevates my head pressure and I have to lay down and take a pain pill.
Hopefully, on December 2 I'll be seeing a neurosurgeon only three hours away. It will still hurt, and I'll pay for it, but I think I need to go. I wanted to contact this forum ahead of time to see if you can suggest any questions about procedures you think I should consider.
Some of the issues I'm dealing with three-and-a-half months later:
1. Daily bad head pressure. By 4:00 p.m. I'm DONE. Even if the only thing I do all day is sit upright.
2. Complete right-sided facial paralysis. I've been reading posts and I think I have to wait another few months before worrying.
3. Leakage out of "bad" eye. I don't tear out of my right eye when I cry, but a thin stream of water leaks out of my eye when I bend over, especially when my head pressure is great.
4. Memory black-outs. Is this normal? I feel like my memory was better right after surgery, but lately I'm having these black-outs when trying to think of blocks of time earlier, yesterday or within a few days.
5. Word substitutions or searches. I often find myself verbalizing a sentence that absolutely doesn't make any sense. When people react awkwardly, I realize I just said something incoherent instead of what I meant to say. For instance: "There were deer all over downstairs," instead of "There were deer all over downtown." If it happened once-and-a-while I wouldn't worry, but it happens a lot.
6. Insomnia: I'm taking an over-the-counter sleep aid every night, and if I don't take two, I'm up until 4:30 a.m. I get up early to try to make myself tired at night, but nothing but two sleep aids work.
7. The EYE: Okay, is the only answer putting a ton of Refresh PM ointment in your eye all day and night? The eye drops sting and don't relieve the pain, so is ointment the name of the game? I need so much my my surrounding eye always looks greasy (but I guess that fits with the rest of the look these days...).
8. Last but not least: DEPRESSION. I really don't want to start taking anti-depressants, but I'm so depressed that I may need help. Any input would be helpful. Today, I really hate that I had the surgery. The doctor told me I was about six months away from having the tumor becoming fatal because of it's location and size, but I often think maybe that was God's plan for me and now I went against God's will. I feel like I made a mistake and I have become a burden to my family and friends.
Oh my gosh, that's a long list! I'm sorry for rambling on. I didn't include the hearing loss, because that doesn't really bother me. I have a very noisy Pug, who snores and snorts all day and night, so now I just turn my head over on the pillow and my noisy Pug becomes a silent Pug--Silver Lining.
Thank you in advance for sharing with me and I wish everyone a meaningful Thanksgiving. I am forever thankful for my husband who looks at me with more love in his eyes than ever, my wonderful little town of Escalante, Utah, and my new friends here on this site that allow me to write this terribly self-centered post to alleviate some stress.
THANK YOU!
Michelle
ayse81:
7. The EYE: Okay, is the only answer putting a ton of Refresh PM ointment in your eye all day and night? The eye drops sting and don't relieve the pain, so is ointment the name of the game? I need so much my my surrounding eye always looks greasy (but I guess that fits with the rest of the look these days...).
Mimispree,
I use Refresh Pm ointment day and night as well. That is my favorite one. I have tried plenty of eye drops and have had the same problem except for a couple. Refresh Liquigel are extra strength gel drops that work for me during the day when I can't or don't want to use ointment. I used to use Genteal gel drops and that also worked.
The refresh liquigel drops are good to have on hand because I find that sometime the drops lubricate the eye in a way that the ointment doesn't and vice versa. It is also like a mini cleaning in case you get something in your eye as opposed to doing a saline flush.
Hope it works for you.
Mimispree:
That's great! I never heard of either of those products. I'll check with my pharmacy tomorrow.
Thank you for your experience.
Be well,
Michelle
Cheryl R:
Celluvisc is also a heavy Refresh product which is an individual vial and less heavy than the tube gel and preservative free. I use the gel tube at night but rarely need daytime use and do use the liquigel one if needed. it is maddening to try various brands to see what is best. An eye dr sometimes can give sample sizes to try.
I have been lucky that the one with preservatives does not bother me while it does some people.
Cheryl R
Echo:
Hi Michelle,
I use Alcon Tear-Gel during the day and Refresh Lacri-Lube at night. Both products were recommended to me by my neuro-opthalmologist and are preservative free. I have good results with both.
As for those funny words coming out of sequence, I did not go through that, but I did have moments during my first 6 months post GK, where I would stop dead mid sentence and just couldn't think of the word I wanted to say. Thankfully that didn't last to long. During the same period I found that I often would transpose words when typing and it drove me crazy - thankfully it rarely happens now. I have heard from others on this forum who had the same issue. Personally I think the brain is just trying to cope with our recovery whether surgery or radiation and it just takes time.
Reach out to your Dr.s, for some help with depression. Given all you are going through, you sound like some form of help would be worthwhile and it may not necessarily mean taking anti-depressants.
Let us know how you make out.
Cathie.
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