Long term problems

[MajellaCampbell]

Hi there,

I had a 4cm acoustic neuroma removed a year and a half ago. Subsequent MRI have been fine. I had the complication of a pseudomeningocele. This CSF swelling has gone down significantly. I still have issues with balance and dizziness and also have issues with dry eye problems.

I am using lubrication drops for the dry eye. Luckily enough, I didn't have any facial palsy. Just wondering did anyone else have any problems like these a year and a half after the operation?

Thanks.

[arizonajack]

My dry eyes, balance, and hearing issues all started suddenly in December 2012.

I did not have dizziness and my balance issues resolved shortly after GK.

However, I still have dry eyes to this day. Oddly enough it only occurs at night so I use Refresh Tears when I go to bed and when I wake up and sometimes during the night. I generally get enough natural lubricant during the day.

For your balance issues I suggest vestibular therapy where you learn exercises that help your remaining balance centers compensate for the loss of a balance center.

Dizziness is something else again and I have no experience with that.

[mar]

Do you have a script for scopolamine transderm patches? They helped me a great deal. Some other things that helped me were sucking on peppermint candies for long car trips and physical rehabilitation. I am about three months out from a similar sized AN and I can ride a bicycle. I don't have the same level of stamina I had before, but I don't consider myself disabled.

Also, going downstairs still gives me vertigo. I can go upstairs fine. I also have facial paralysis. Each case I see on here is unique.

[milhaus]

Majella:

You are far from alone. I am a little over a year and a half past my first translab surgery from removal of a 3.8 cm AN. I still suffer from dizziness and balance and am in physical therapy right now. If you don't have any facial palsy but you are having problems with dry eye it is possible your nervus intermedius was damaged during your surgery.

It is a nerve that, according to my neurosurgeon, runs between the facial and vestibularcochlear nerves. It is responsible for controlling taste, tear ducts, and salivary glands on on side of your face. My was destroyed during surgery due to its unfortunate positioning relative to my tumor. I have never regained the ability to taste on my left side, my tear duct hardly works at all on the left side, and I used to have really bad dry mouth but that fortunately has improved.

Probably the only reason I get by OK without working tears on my left side is because that eye is prosthetic. It still often gets very irritated however. Sometimes it gets bad enough I just tape my eye shut. Even today I can cry and no tears will come out of the left side.

Have you been to physical therapy for your dizziness? If not you should try it. Also, have you spoken with your doctor about how you are feeling? I would recommend that too.

[MajellaCampbell]

Thank you for your replies. I have been to the physiotherapist and have been discharged by her. Operation was Oct 2103, main problem is dizziness and imbalance. I have as I said CSF fluid to the extent that I have not wash my hair since before operation because at first is was because of tenderness and stinging,  now it is because of fear and psychological reasons. I am going to see Psychologist in a few week as I am very down at the moment. I find myself crying a lot.
Regards Majella.

[Tod]

Majella,

I am now just over five years post-surgery. Some problems remain. I put ointment in my left eye every night as part of my night-time ritual. Despite looking fine to most normies, I have left-side facial quirks at times. Also, when I am physically tired, I can feel the spasms on my left cheek and they can get pretty bad at times. If i cry emotionally, then I have tears only my right side, but allergies and spicy food may bring tears to both eyes.

The emotional issues following these surgeries are part and parcel with recovery and there severity varies across patients. Don't be shy about having depression treated, even if you think it is just periodic bouts of feeling sad or down. This is all challenging and can be overwhelming at times.

The only thing else I can recommend is lots of walking for your dizziness and practice identifying local horizontals to assist your brain in learning to cope. When you feel comfortable, you might try other things like learning to juggle while walking. At one point, I practiced juggling while walking up down and stairs to really retrain my brain. I also used Wii Balance board a lot, playing a lot of the games like that made good use of balancing in play, like downhill skiiing.

I hope this helpful,

Tod

[hasovschib]

Majella i was wondering if you can tell me what did you mean CFS swelling, how do you know if you have it. Thanks

[MajellaCampbell]

Hi there,    in response, CSF swelling, is cerebrospinal fluid. Also called pseudomeningocele. It is swelling of cerebrospinal fluid. It causes swelling, puffiness, stinging & soreness at operation site & takes months to go down. My neurosurgeon examined the site & confirmed this & said I didn't have to have medical intervention, thank god. He said it would go down with time. My last visit with neurosurgeon was in Jan. & he said it had gone down significantly. I hope this answers your question OK. Regard Majella.                                                                                                                                     

[hasovschib]

yes it did, thank you .... my operation site is a bit more "lumpy" than my other side.... hopefully it will go down in time

[Funnydream]

I'm almost 5 years out. I still have twitches and head feelings. The twitches are all on one side of my head. NO GK. I got slice and diced.