I never thought I'd be typing that and here it is thirteen days post surgery and I am and it's time to have the staples and stitches removed. One more thing off the to do list after surgery. Actually, such a list doesn't exist and I've been thinking there maybe should be. Like a checklist or a progression chart, the symptoms and experiences you go through, big and small after surgery. I think everyone is different and has different obstacles to overcome based on their unique case and I think I would like to share some of my recovery. It has parts that were unexpected and with each one I calmly managed to deal with it.
Although I had no way of knowing what I would be like after surgery, I'm not actually surprised how it turned out for now.
Tomorrow to Boston, I'll be wearing my glasses/sunglasses, not contact lenses. I'm still swollen and numb and can't see well yet. It's my only good eye. I'll also have a scarf on my head, never even thought of that. I thought it would be a thinner scar but this goes from my ear, outside of it, she didn't go behind for some reason, all the way around like a big question mark all the way over to the top of my head to my forehead. Plus all the little pokes from the equipment that held me down on the operating table. Then, because I have no balance or depth perception and will fall without one, I have a walker.
I also need a tub seat for showers so I don't fall over either. So I'm surviving. My husband has completely taken over every and all chores happily. We have something to move forward to now rather than be scared out of our minds.
Jeanine,
If your insurance won’t cover what you need, find the Adult Services in your county and see if they know of some places to get them cheap or one of the places like Goodwill, St. Vincent’s, Salvation Army, I can’t think of the generic name for them.
Glad you are doing well and are now getting your staples and stitches removed. A knit cap would also suffice since it has been really cold - I still have several inches of snow outside.
Congratulations on the staple removal! When you think back to how scared you were before surgery, I can tell even from your posts how strong you are now. You're a fighter! Happy healing, and let your hubby do all the housework and relax :)
The staples are out. Not so bad, just a stinging mostly. That was Monday. Since Wednesday, the pain in my eye and back of it hurt more and more and crap was coming out of it and it was tearing. I'm on 2 different drops already but they didn't seem to be working. By Friday night I couldn't stand it and went to urgent care. The Dr. said I have a deep inflammation and prescribed different drops. I return Monday and if no better, I have to see an opthamalogist (can't spell this, ugh) I also haven't been able to keep any food down since Thursday. More obstacles... Anyone else's eyes get more inflamed inside or shut more? I'm super scared. Still not certain my sight will be ok and sometimes I get really pissed off. It's so boring only being able to squint for a little while then wait several hours. Anyone experience this? Thanks, Jeannine
Jeannine, my annie was not by my eyes, so I can't answer your questions, but I still wanted to reach out to you. I was coiled and stented, but I still had a pretty rough time for the first month - I probably should add the whole first year! I hope your eyes get better soon and your sight restored. We used to have a saying here - I haven't heard it lately - it takes a while to get used to our new selves. And it takes a while to see what that new you will be. I had a friend that saw me 6 months post op, and then not again for another year. She told me at that 2nd meeting that she couldn't believe how much better I was than the year before. I didn't realize that I wasn't the same both times.
Are you still not able to keep food down? You should call your neurosurgeon if you are still having trouble and it would probably be good to update them on your eyes anyway. Hope you feel better soon, but I'm glad that you have the help and support of your husband. Take care, Sherri
Jeannine, my annie was not by my eyes, so I can't answer your questions, but I still wanted to reach out to you. I was coiled and stented, but I still had a pretty rough time for the first month - I probably should add the whole first year! I hope your eyes get better soon and your sight restored. We used to have a saying here - I haven't heard it lately - it takes a while to get used to our new selves. And it takes a while to see what that new you will be. I had a friend that saw me 6 months post op, and then not again for another year. She told me at that 2nd meeting that she couldn't believe how much better I was than the year before. I didn't realize that I wasn't the same both times.
Are you still not able to keep food down? You should call your neurosurgeon if you are still having trouble and it would probably be good to update them on your eyes anyway. Hope you feel better soon, but I'm glad that you have the help and support of your husband. Take care, Sherri
Thanks for your kind words. Actually, not any better. Maybe a bit worse even. Today I rested all day. I was exhausted from the past few days. I haven't been able to keep much down, still vomiting and nauseous. My sight hasn't improved since getting the new drops yesterday either. My good eye, which is the one compromised is very tired and prefers being shut with an eye mask. I'm supposed to alternate using each eye for part of the day to help the double vision improve. I think it has some, then it's back??? I'm confused and of course, scared and even angry. It's a very helpless feeling. I can't wait to have some good news to report. My poor husband is a nervous wreck as well, he's helpless too. I have told my neurosurgeon, actually her nurse, who told me to keep following up the opthamologist. Tonight I called because of the vomiting thinking something might be going on and she assured me it had nothing to do with the surgery so that was a relief. I don't want to go to the ER anymore.
I'm getting ready for bed right now and hopefully I'll actually sleep. That's even a problem. I know I'm supposed to be relieved that this is past me, and, I guess I am. I just didn't think it would be this hard.
I did shower without my tub seat today. We have a bar to hold onto so I tried that and it worked. Maybe that's progress.
If anyone has any similar experiences to share I'd really appreciate it. I could use some encouragement. Thank you all for everything so far.
Thanks Sheri,
Jeannine
J Knights said:
Sherri Long said:
Jeannine, my annie was not by my eyes, so I can't answer your questions, but I still wanted to reach out to you. I was coiled and stented, but I still had a pretty rough time for the first month - I probably should add the whole first year! I hope your eyes get better soon and your sight restored. We used to have a saying here - I haven't heard it lately - it takes a while to get used to our new selves. And it takes a while to see what that new you will be. I had a friend that saw me 6 months post op, and then not again for another year. She told me at that 2nd meeting that she couldn't believe how much better I was than the year before. I didn't realize that I wasn't the same both times.
Are you still not able to keep food down? You should call your neurosurgeon if you are still having trouble and it would probably be good to update them on your eyes anyway. Hope you feel better soon, but I'm glad that you have the help and support of your husband. Take care, Sherri
Jeanine,
Sherri’s right. Take your time, everything becomes a new learning experience! I like learning so it doesn’t always overwhelm me. I was coiled as well - both times, there was the chance of a crainiotomy the second time but my doc was able to do the second coiling.
Remember when you were raising your kids and they’d be sick? Go on the BRAT diet, broth, rice, applesauce, toast (dry). One year post rupture and I still have to maintain 60-90 grams of protein per day. Luckily my friends had gastro-bypass surgery and got me on a protein drink we get at SAMs Club. If I forget to set my alarms, I forget to eat. I still try to eat small meals, like my moms diabetic diet as I tolerate it better.
Give the eye drops a chance. See if you can put a cool damp cloth over your eyes, ask the nurse or doctor. Please remember to breathe, you will beat this!
Jeannine - its much harder to find new questions under this new format under categories (at least, I think so). It might actually help to find people who have had some of your same problems if you started a new discussion specifically about your eyes and nausea. I'm sorry I am not much help there, but I did want you to know that you have our support.
Another thing you might ask the doctor for is a nausea med. If you haven't taken one before, they can be wonderful. I took one several times daily for 4 years while undergoing cancer treatment and it helped tremendously. Sometimes it does take a few tries with different ones until you find the one that works really well. I also was put on another type a few years ago temporarily, but I don't remember why - and again, it worked well.
Let us know about your doctor's visit and how you are feeling tomorrow. We all care and feel a sisterhood/brotherhood toward each other. Take care, Sherri
Oh, J, Sorry to hear you are going through this. I had double vision after my craniotomy and it was gone before 2 weeks out. Like you, I was scared it would last. The nausea is due to increased intracranial pressure after surgery. Did they tell you not to lay flat for a while? I had to sleep almost sitting up, in a recliner or on a pile of pillows, because it reduced the cerebral pressure during healing. It didn’t last for more than a month, and it got better every week, but I still prefer to sleep with several pillows, may be just out of habit. I am glad you saw someone about the wound problems. Mine itched like crazy but they told me to never touch it, but I would wake up to itching it. I regret scratching after the staples came out because the scar is probably bigger than it would have been if I left it alone. For now, I would bypass the nurse (she gave you the wrong information about nausea and brain swelling–they can be related). I would go straight to the neurosurgeon with the question, “have you ruled out a problem with increased intracranial pressure?” feel better
You say you had double vision for 2 weeks. Mine didn't start right away. As my eye opened I could see for a little while. I'd squint and it would be blurry. As the sight came back and wearing my glasses let me see TV better, then I got the double vision. You're right, the nurse dismissed me (as usual I should say.) She seems nice sometimes and others very dismissive. I can't get to the neurosurgeon. I'll ask her to have the dr. call me next time I have a question.
I guess fear will be my friend for awhile longer.
Thanks,
Jeannine Sigmund said:
Oh, J, Sorry to hear you are going through this. I had double vision after my craniotomy and it was gone before 2 weeks out. Like you, I was scared it would last. The nausea is due to increased intracranial pressure after surgery. Did they tell you not to lay flat for a while? I had to sleep almost sitting up, in a recliner or on a pile of pillows, because it reduced the cerebral pressure during healing. It didn't last for more than a month, and it got better every week, but I still prefer to sleep with several pillows, may be just out of habit. I am glad you saw someone about the wound problems. Mine itched like crazy but they told me to never touch it, but I would wake up to itching it. I regret scratching after the staples came out because the scar is probably bigger than it would have been if I left it alone. For now, I would bypass the nurse (she gave you the wrong information about nausea and brain swelling--they can be related). I would go straight to the neurosurgeon with the question, "have you ruled out a problem with increased intracranial pressure?" feel better
