ANA Discussion Forum
AN Community => AN Community => Topic started by: LizAN on August 09, 2012, 05:17:15 pm
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Hi, Everyone!
Tuesday made 5 weeks post-op for me.
Since my last update, I went through a brief period where I could not lift my head from the pillow without excruciating pain. I was having to use my hands to lift my head! The docs at House said this can happen when the muscles that were cut start to knit back together. They gave me Norco but said that Advil would actually be more helpful, and that I could also use a heating pad. I took the Advil and applied heat regularly for a couple of days and now I only have to do it occasionally. Even then the pain is not as bad as it originally was.
I am now able to be on the computer for more hours of the day - maybe 3 hours at a time, which is huge progress! I am still not ready to drive yet. My return to work may not be until after Labor Day. That will put me in a financial bind, but I don't think I will be ready before then. At that point I will be two months post-op.
The thing that has me a little concerned now is that the taste in my mouth has gone from bitter to bitter and salty. As far as I can tell, I don't have any other symptoms of a CSF leak, and the CT scan and lumbar puncture that were done in the ER a few weeks ago showed no evidence of one. I haven't done anything that I know of to cause a CSF leak since that time, so it seems very unlikely to me. Maybe this is just a transitional phase as my facial nerve heals?
Thanks,
Liz
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I had a nasal post-op CSF leak. It resolved on its own in 3 weeks. The fluid, if you do have a leak, has to go somewhere: nose, ear, or surgical wound. In the absence of any other evidence of a leak, don't worry about the taste change alone. I have had taste disturbances, including salty, for 10 months now since surgery and no return of any leak. In my case, the type of taste disturbance varies off and on, but is always there in some form. I am getting used to it. Good luck with the rest of your recovery.
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I had a nasal post-op CSF leak. It resolved on its own in 3 weeks. The fluid, if you do have a leak, has to go somewhere: nose, ear, or surgical wound. In the absence of any other evidence of a leak, don't worry about the taste change alone. I have had taste disturbances, including salty, for 10 months now since surgery and no return of any leak. In my case, the type of taste disturbance varies off and on, but is always there in some form. I am getting used to it. Good luck with the rest of your recovery.
Thanks for that information, LakeErie! It gives me perspective and calms my fears.
The taste in my mouth continues to morph. The saltiness is subsiding and the bitterness is returning. It's not as bad as it was in the beginning, fortunately. I'm doing my best to ignore it, but every once in a while a piece of candy does help.
Given my history of blood sugar issues, it's a relief not to be going through bags of candy rapidly. Before the surgery, I had been completely off of sugar for almost two years, and was definitely insulin resistant at the time I gave it up. So far, that issue has not returned but I want to be careful.
Liz
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Hi Liz,
I'm glad to hear your headaches are getting somewhat better. How is your balance affecting you? I continue to have the bobble-head, "one too many drinks" feeling. I, too, am not close to even trying to drive. I would be afraid to drive around my block as there are many young kids. When I'm ready, mabe my husband can take me somewhere safe. I may, also, have to postpone my return to work. However, I'm getting very bored at home. I never thought I would say that word again....bored.
Take care of yourself.
Lisa
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Lisa,
When had you planned to return to work? Today marks 6 weeks post-op, and I had hoped to be back at work by now. It is likely to be two or three more weeks.
Yes, my balance is still affected. It is getting better, as long as my eyes are open, but I still get unsteady when I start looking around at the scenery instead of the ground in front of me. I need more practice walking with my eyes closed - I am lousy at that and tend to fall to the side! Same with standing on one foot. I think my balance is very dependent on my vision, and my proprioceptive system is not as engaged as it could be.
I may try driving around on our road some time soon, but I can't get out of the neighborhood without getting on a busy highway, and my commute is 45 minutes to an hour.
Any headaches I get now are very mild - usually just throbbing, without pain. I'm still putting heat on my neck, on occasion, but even that is much, much better.
It's very hard for me to see progress from day to day. I wish I had made a chart of my original symptoms and then rated them periodically. That would have given me a visual of my progress and might have been encouraging, or at least made it easier to predict my recovery time frame.
Liz
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My return to work is supposed to be six weeks from surgery, which would be August 30th. I had some friends from work bring me lunch today and visited. They told me not to rush back. I might have to agree with them. The hard part is everyone thinks I look great. However, they are not inside my head.
I should have done that too...kept a list of initial symptoms. Some things have gotten better, while some things are either worse or new. I try not to complain too much though as I know a lot of people have had it much worse than me.
Take care,
Lisa
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Hi Liz, sorry to hear your recovery has slowed. Mine did too, with a sinus infection, but once that cleared it was pretty big turn in the healing process. I went back to work at about 8 weeks, half days at first, as prescribed by my MD here in Wyoming, for about two weeks then full time . I must admit, by the end of the day I was beat. How time makes a big difference. Lots more energy now, after almost three years (translab) 3.7 cm AN. I do have that darn salty tongue! Ugh. It is probably the hardest thing to deal with, is best in the morning after sleeping all night. Worst at night, I find sweets help, also flavorful foods take the edge off for awhile. But things that helps it the most is just being quite, and not eating or drinking. Later is very hard not to do! But I have lost nearly 30lbs since surgery. Out balance is very dependent on our vision. I still don't do well at night, night lights help. Driving took awhile, like 6+ weeks for me. I still dislike driving at night in unfamiliar areas. Have you tried massage for your neck? I get myself a massage every 2 weeks because of turning my head weird to listen. Hope today was a better day for you. Susie
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Hi all,
I am just over a month post op 7/12. I have not been on in a little while, but I am having that weird taste thing going on, so I thought I would look to see if anyone else has it. Also, I was doing great as far as balance, and walking. I was able to go sight seeing in LA on days 7and 8 post op, but I seem to have plateaued. I can walk fine on flat ground, but I am still having some difficulty on uneven surfaces, and my head feels just plain weird! Do you get used to the weird feeling in your head or does it eventually go away? It is always so reassuring to hear from others that are experiencing the same thing!! People just tell me that I look great, but they don't understand what is going on inside of me.
Cheryl
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Cheryl,
I can't agree with you more...everyone thinks I look wonderful, but they aren't inside my head and know what I'm feeling. My surgery was 7/18 at HEI, mid-fossa. I, too, am wondering when this feeling in my head will go away or show some improvement. Just moving my head slowly, my vision is as if it's bobbling around. I'm feeling a little discouraged today.
Lisa
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We new posties all seem to be in similar boats. I'm sorry any of you are having to struggle with recovery but relieved not to be alone in this rather frustrating process. Given where others of you currently are, I must not be too far off course, after all.
I am now 6 weeks post-op. When I turn my head quickly from side to side, everything is a bouncy blur. Fortunately, when I stop, everything does stabilize very quickly. My head feels wonky every time I move it, even a little bit.
I had been managing fine, but last night, for the first time since I fainted in the hospital, I fell. It was not so much about balance as about moving too quickly on a slippery surface, the ceramic tile floor. I landed on my left hip. I was fine until about an hour later, when I started to ache in several places. Ice helped. I woke up in pain this morning, but as the day has gone on, it has diminished, so I think I will be just fine. It did, however, shake my confidence a bit.
I'm frustrated and motivated to achieve some measure of independence. I just drove around my neighborhood for the first time and it felt great, which was a confidence booster! That said, it's a tiny neighborhood, and I can't leave it without getting on a major highway, so I'm still basically stuck at home until I can handle highway driving. Just exactly what are the criteria for that?
Liz
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Hi LizAN,
I would say the criteria for driving on the highway would be: to feel confident enough to know that you would not endanger the lives of others or yourself by getting behind the wheel at high speeds. Sounds like you are doing well with your recovery but don't push yourself beyond what you are capable of doing. It all takes time and everyone is different especially when it comes to the healing process. The bobble head feeling will get better with time. Walking (a lot) will help your body adjust. I wish you the best for a complete recovery! Ann
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I don't drive much anymore very frustrating but when I do venture out I have changed my driving habits and just learning that is okay...Local streets I do not do short cuts or zig zags only go straight as much as possible and might take a few minutes more and more lights but that is okay. As far as highway I yes an old woman...lol....was a little bad like to go fast was not an impatient lane changer okay sometimes and always drove in the fast lane. Well now I have slowed down stay mostly in the right lane as much as possible and again if it takes a little longer that is fine rather be safe for yourself and others ... You will get there just might have to tweak your driving and leave a little earlier.
Best Wishes,
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Hey all,
I too, was feeling a little discouraged. I just want to feel like my old self! I find it very helpful that all of us are going through the same things. I met a lady yesterday, that had surgery two years ago, it was so nice to talk to someone who has had the same issues. I was recently talking to my husband on the phone, and I told him that I thought someone was in our house because I heard a mans voice. No one was at home so he told me to check to see if the kids left the tv on. None of them were on, but the voices stopped. A few minutes later I heard them again. This time I could make out the words. I asked my husband if someone was talking around him. They were. I can hear the background people just as much as the person I am talking to on the phone. It is so weird! But, it made me feel better to know that the lady who had surgery 2 years ago had the exact same thing happen! I went to my daughters volleyball game last night. Climbing up the stadium bleachers with no hand rails was a challenge, but I made it. My son did help me out on the last few steps. I have not fallen down at all, but I have bumped into the wall several times, especially when I start walking fast, and then turn. I plan to start driving this weekend. I am going to take it slow though!! I think having more independence will be helpful. I am actually feeling better today. It seems like the more normal stuff I do, the more normal I feel. :)
Cheryl
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Cheryl, 5 weeks is still early in recovery and it is maddening to not feel what one thinks they should feel by now. it does get better and we all go at our own speed. The hearing loss is a big adjustment and some of it around people one never gets over and you learn how to stand by a person if do want to hear them clearly. Sounds like you are doing very well and we all have our own post op story about how it goes in what we are doing. There is the good day and bad day for a time too. Cheryl R
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I guess I should say, now, that it's encouraging to read that there are some recent post-op forum friends who are all dealing with similar issues. I guess I didn't realize how long it would take for the feeling to go away or for me to get used to it. Part of the reason I don't think I'm ready to drive is that when I'm riding in the car, it takes me back to the day when I was glad we had a designated driver. I want to tell them, though, that they are taking curves way too fast. I'm always holding on and have my passenger brake on all the time. :) I have to admit that I've been dwelling on this and wondering if there was something that didn't go right with my surgery. I told myself I was going to be optimistic during this time, but it's easier said than done.
I'm so glad we have each other and this forum.
Lisa
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I felt the lightheadedness and bobble head for exactly 7 months - to the day. I still have occasional episodes of it, but they are now far between and last for just minutes at a time. I have wondered how much of this was due to brain decompression. I have no idea how long it takes for a compressed cerebellum and brain stem to decompress following tumor removal, but it seems reasonable to me that if brain compression causes some symptoms, why wouldn't decompression cause symptoms as well. I plan on asking my nuerosurgeon that question next visit in Oct.
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That is interesting about the decompression. It would make sense. I definitely believe it is good days and bad days. Today seems to be one of the better ones, and I am going to enjoy it while it lasts :)
Cheryl
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I'm glad to hear you guys are all doing well. I can say so far my only issue is the facial twitching. I no longer wear my glasses this way nobody sees it. I have no real balance or dizziness. I went back to work 2 weeks after surgery and haven't had too many issues to complain about ::)
I'm thankful that we are all here to complain about our post op issues :)
Mindy
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Hi.
This was the perfect thread to read today. It is incredibly reassuring to hear that these symptoms are normal and continue for awhile. I needed to hear that the bobble head feeling will eventually go away. Also, I'll be thinking I'm walking normally and then for no apparent reason I'll stumble off to one side or the other. I can't imagine driving yet.
Liz, you have a long and difficult drive to work! Will that be more difficult than the actual job?
Karen
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Liz, you have a long and difficult drive to work! Will that be more difficult than the actual job?
Unfortunately, Karen, my job itself is also stressful. I usually don't mind it, but I need to be able to hit the ground running and I know I'm not ready yet.
Liz
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Best wishes for continued positive healing journeys.
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Liz, with a complicated job like yours on top of a difficult commute, it's great you are waiting until your brain is ready. What symptoms do you notice now in a normal day? Multitasking seems much more difficult for me now. Does that get better?
With caring,
Karen
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Karen,
I really need to go back to work after Labor Day, so I am praying I am ready. I can't afford to lose my job. Financially, I needed to go back after 6 weeks, but that didn't happen. Hopefully, the universe will make allowances.
Multitasking has definitely been problematic for me, but it is getting better. That is another thing that needs to be okay before I can return to work, as I will be managing multiple projects and teams.
It had been feeling like my balance was getting worse instead of better. I suspect what actually happened is that, because it was getting better, I relaxed and started doing things I hadn't done before. I was no longer being as conscious and deliberate about my movements, so I had more incidents of unexpected wonkiness or stumbling than I had in the beginning. At least that is what I am telling myself now, and it feels better to believe it.
I feel a bit weak, like I'm anemic. My stomach has been bothering me ever since I finished off the proton-pump inhibitors they gave me to protect my stomach from the steroids. Are those available over the counter? Maybe I just need to eat more regularly. It's 2 pm and I haven't had lunch yet.
The side of my head still hurts in places and is numb in others. If I bend over, my head will begin to throb, but it doesn't induce a huge headache now. I am able to do my own laundry, which feels like a major step toward independence.
I still have the tinnitus, but I try to ignore it. Sometimes, on top of the normal sound, I hear a brief "whoosh" or "chee". Dr. Slattery told me the best treatment for tinnitus is to ignore it, which tells the brain it is not an important signal to interpret as sound. Overall, without the muffled sound in my left ear and the recruitment, my hearing is better than before the surgery. Cat noticed in the ICU that I was not asking people to repeat themselves as much as I had been. Even though I no longer have the recruitment, without a hearing nerve on the left side, I still get a loud burst of a "chee" sound on my deaf side, when I hear a sudden loud noise. Apparently, the other side of my brain is getting some of the signal from my right ear. That I don't claim to understand.
I'm still sleeping 10 hours a night. That will be okay if I can start going to sleep at 10 pm instead of midnight. I'm not expecting to have much of a life once I go back to work, but I'm not doing much now either, and I will appreciate being around adults. (The kids have gone back to school and I am taking advantage of the quiet around the house.)
My left eye is still dry, although it does now produce some tears. I still have the bitter taste in my mouth but I can usually tolerate it. Most days I am no longer eating a lot of Jolly Ranchers.
I did drive into the suburbs yesterday to go buy a ream of paper. It was easier than I expected it to be, which was a huge relief. I am starting to feel a bit more like my old self.
My stress tolerance is not yet what it needs to be, in order for me to be able to handle my job.
I think that covers it. Let me know if you have any specific questions that I didn't answer. Keep us posted on how you are doing.
Thanks,
Liz
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Liz, that was hugely helpful! Thanks!!! I hope things continue to improve to the point where you are comfortable returning to work in a time frame that works best for you.
I'm encouraged to hear multitasking is improving. I forgot to ask about word finding problems. Has that been a problem and if so, does that improve?
Your theory about why balance seems worse makes perfect sense to me. When I consciously take each step I have much better motor control, but when I'm not thinking about my walking I tend to have more stumbles and my body may suddenly go off to the left or right and not straight.
Tinnitus is an interesting internal companion. :). Reading about your experience of the new normal with hearing is fascinating.
Hooray for doing laundry and for successfully driving!
I've never been a good sleeper and that hasn't changed for me. Maybe we can exchange some of our sleep and non sleep hours. :)
So, dry eyes may continue for awhile. Oh well...
Being able to tolerate high levels of stress sure would be a good thing before going back to work!!
Thanks again Liz. I'm sending you appreciation, caring and support.
Karen
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LIz, eating more regularly would be a good idea. Also Prilosec or Nexium are OTC versions of the PPI's that you were taking. You might try something like Zantac. Try that at bedtime (the 150 mg version) as stomach acid can bother more at night for some anyway. If that doesn't work then go back to the Prilosec or Nexium type PPI. Might check with your family doc if keeps up too long. I do the Zantac at bedtime as GI issues act up for me with any stress or less sleep. Hope this helps. Cheryl R
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Karen,
I was having trouble finding words long before the surgery! I wouldn't expect that to get worse with translab, but it could possibly be an affect of middle fossa. How much trouble are you having with it?
I also have had long-standing problems with sleep. After working with a Functional Medicine specialist for a couple of years, I had been able to get by on only 8 hours of sleep a night and was beginning to have a life again. I'm hoping to get back there but I have no idea how long it will take.
Liz
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Cheryl,
Thanks for the tips on the medications. I'll stop by the drug store. In the meantime, I've been taking Tums. I hope it gets better soon. I've had problems with reflux before, but it had gone away when I stopped eating gluten. This is feeling like gastritis. During the time I was on the steroids, I wasn't having this problem. They gave me enough of the PPIs to last 10 days after I stopped the steroids. Then they put me back on steroids and they ended on the same day that I ran out of the PPIs.
Liz
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Liz, thanks. That was helpful. Both symptoms did pre-date surgery. They are just worse now.
Karen
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Isn't pantaprazole a medication used for troublesome tummies/protection for the stomach when one is taking a bunch of meds? or acid reflux? My mom has been taking it for years. Just a thought.
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Pantaprazole sounds familiar. That may be what Dr. Stefan had prescribed for me.
Liz