Australia Calling

[Suu]

Thankyou, thankyou, thankyou! This site has saved my sanity.

I had no symptoms up to the day I was nearly hit by a car and hubby was yelling and I didn't hear him.  Within minutes the left side of my face went numb and so did my tongue.  I put it down to all the diet coke I'd been having!  I said that I thought I was having a stroke and the rest is history.
Operated on the following week for a 4cm AN August 18th 2010. The face nerve was stretched over it so I ended up with severe face droop and eye that doesn't quite shut but the docs are surprised that I can move the lid at all.
I went home and within a week I was leaking fluid from behind my ear. Readmitted and re-stitched.  All was well until nearly ready to go home again and the next CSF leak happened at the op site.  Then it happened from my nose 3 times.  I was 'bagged' and 'unbagged' (spinal drains) and reopened to have minor surgeries done until they decided to completely block the eustachian tube and a flap made behind my ear with fat from my tummy.  Ended up with a staph infection and sent home on antibiotics and finally home after 6 weeks in hospital.

It's been 6 weeks since my last surgery.

Questions:
Is it normal to have dizzy spells?  They come over my head like a wave even if sitting still sometimes but not all the time.
Is it normal to be anxious about things that get your heart pumping fast and sometimes crying for no apparent reason?
How many women here have had their facial nerve cut or compromised and how have you been handling the way you look?
Do any of you have an eye that 'runs' when you bend over? Mine seems to 'cry' when I bend over or sometimes when I lay on my left side.

Many thanks in advance.  Thanks again for being here.

Cheers,
Suu from Down Under

[james e]

I was operated on in March 2010, and still get minor waves of goofy headed dislocation. It happens when I lose eye contact with some non moving item that I am using to establish my balance...swift turn of the head, near-by movement that interferes what I am looking at. It goes away quickly, and it has gotten better as time passes. My biggest problem is going up or down stadium stairs. Too many horizontal lines, the seats, really send my head into a spin. I can go out on my boat in a pretty good chop and that does not bother me. I took PT for about 2 months, and that probably helped me. They made me do 2 or 3 things at one time to slow down my brain...started walking, then walked bouncing a ball, then walked bouncing the ball and turning my head side to side. Your brain just has to learn how to process the lack of one of its old sources of data.

I did not have any problems with my face, but a friend of my wife went through the leaks, and facial problems like you. I will encourage you...after about a year, her face started moving, and after 2 years she is back to about 90%. Her face was so bad, the doctors told her she should have her eye sewn closed. There is hope.

It was about a year ago I found out I had an AN. I have had a remarkable recovery. I picked my doctor and type of treatment by personal messages from other "brothers and sisters" here. I have nothing to gain here except to return and encourage others that there is "a tomorrow." Most of us here following treatment have some type of disability, some minor and some major...but this is a long time recovery. Every day is better that yesterday, and in a year you will be impressed with your progress.

Good luck to you, and Merry Christmas.

James

[HeadCase2]

Hello Suu,
  Welcome to the ANA Forum.  It sounds like you've had a rough time of it.  And I hope you continue to be on the mend.  I'm sure that some others will also chime in on your questions.

Questions:
Is it normal to have dizzy spells?  They come over my head like a wave even if sitting still sometimes but not all the time.
   If you're just 6 weeks from surgery, you can have a wide range of odd vestibular effects, that will hopefully begin to fad with time. You're still healing from the trauma of surgery.  Many people also go to a Physical Therapist trained in Vestibular Retraining.  This PT can help your balance system recover and compensate more quickly for the loss of vestibular function on one side.  Also mention this to your doctors, dizziness can also be caused  by other things like low blood pressure.
Is it normal to be anxious about things that get your heart pumping fast and sometimes crying for no apparent reason?
  AN can give you all sorts of odd symptoms, it seems to be a bit different for everyone.  Again, I'd ask the doctors about this.
How many women here have had their facial nerve cut or compromised and how have you been handling the way you look?
   Your facial nerve has been traumatized and will take time to heal before you'll know how much it will be affected long term.  Take a look at all the posts in the Facial Issues section of the forum for a lot more discussion on this topic.
Do any of you have an eye that 'runs' when you bend over? Mine seems to 'cry' when I bend over or sometimes when I lay on my left side.
   As the facial nerve heals it can sometimes form some odd cross  connections that affect tearing.  For me, my AN side eye tears when I eat.  I'd ask your treatment team about this one to see what they say about it.

Regards,
  Rob

[kareno]

Hi Suu

My husband had surgery for a 3cm AN 6-months ago March 2010.  Each and every day I notice improvement he did not have any facial issues or CF leaks but has made remarkable improvement with balance/walking and coping with the SSD, and tinnitis.  He is still somewhat forgetful and has fatigue but I notice that he is getting better each day.

Take it one day at a time with the healing process.  I wish you Happy Holidays.

Karen

[CHD63]

Questions:
Is it normal to have dizzy spells?  They come over my head like a wave even if sitting still sometimes but not all the time.
Is it normal to be anxious about things that get your heart pumping fast and sometimes crying for no apparent reason?

Cheers,
Suu from Down Under

Suu .....

I wrote a long reply to your post, but alas, it was lost in our blackout.  James and Rob have given excellent responses.

The dizzy spells are very normal.  Your brain is still adjusting to the vestibular changes and even subtle vision movements can cause it to make an adjustment, resulting in you feeling dizzy.  It will get better ..... the brain is a slow healer.  As Rob said, going to a trained vestibular therapist may speed up the process (I went to one for months following my surgery ..... but I have no vestibular function on either side so my case was different.).

In the meantime, try walking in a safe place, such as up and down a hallway in your home, where the walls are fairly close on both sides.  As you are walking, turn your head from side to side on a couple of trips back and forth and then turn your head up and down while walking.  You will feel very tipsy at first (that's why it is important to do it where you can touch a wall to regain your balance, if necessary), but it will get better the more you do it.  Another good exercise is to put a large single letter (my therapist used an A) on a post-it note, placed on a wall at eye level.  Then stand back about 5-6 feet and focus on the letter while you slowly move your head from side to side and then up and down.  Again, at first you may have difficulty maintaining your focus.  Just slow down and only turn your head as far as you can while keeping your gaze fixed on the letter.  Gradually extend the range of motion and gradually increase the speed of turning.

Yes, it is very normal to have crying spells.  Your body and brain have undergone a tremendous assault/injury and it affects the whole psychological make-up.  Especially when you have had some major after effects.  Rob is right that you should let your doctor(s) know about this.  They may be able to help you with something.  I found that when I felt a melt-down coming on, if I changed what I was doing (for example, get up and start walking, start cooking, start cleaning, etc. ..... anything requiring physical movement), it really helped.

Best thoughts and many prayers.

Clarice

[joebloggs]

Hi Lovely Suu!  

NOTE: I started this last week and just found it in an open browser window... dur!!! Am finishing it now!

JB also from Australia here - but living in the UK.  Kay has alerted me to your presence on the site - she's on Aussie watch for me!!!  You've certainly been in the wars haven't you?  So glad you're home now though - hospital was bad enough for 5 days, let alone 6 weeks I would imagine.  I had my surgery just over a year and a half in Melbourne and am doing great now - I just wanted to let you know that sometimes I still get a bit anxious for no reason, or sometimes when I'm in a group situation and I can't hear what's going on I feel a bit anxious, occasionally I still get dizzy, not that often now though and my eye doesn't cry at all - but I'm really lucky in that there's just enough liquid to keep my eye moist.  Weird.  My other eye on the non AN side sometimes runs too much when I'm in windy conditions - I think it's compensating for the other one.  Anyway my dizzyness, wonkyness has improved heaps since I left hospital and I put a lot of the improvement down to the physio I did after I left hospital - I did about 4 or 5 extra physio sessions with a physio who specialised in vestibular rehab.  I've got a list of practitioners (most in Victoria but some in other states) who specialise in Vestibular rehab that the hospital gave me when I left.  Not sure where you are in the country, but give me a shout if you would like me to give you a list of nearby physios who could help!

xx

[Mark241]

Hi Suu! Wow let me first say you sound like a very strong woman, with a strong family with you. Thats more than a lot of people have, and I know thats whats' going to get you through this and speed up your recovery. I what most people say, a mans, man. But I remember breaking down many times, and still do once in awhile since Im really never going to be out of the woods. Your going to get better, lean on your family as well as your Doc's. Gods speed in your recovery, my families prayers are with you.     

[Suu]

Hi all.
I am blessed to have everyone here. Many thanks for your answers and guidance.  It's been needed and welcomed.

JB - I live on the Central Coast (Gorokan) NSW.  I go to the John Hunter Hospital in Newcastle (an hour away) for checkups as it's the only hospital with ENT and neuro within cooee of here or I'd have to go to Sydney.

My ENT doc was pretty stunned that I'd had no physio since the op so is getting me a home consultation so I don't have to travel. His name is Dr Eisenburg and can be recommended by me anytime.  My neurologist hasn't seen me since he did the massive task of ridding me of the little gremlin but his name is Dr Firch.  Then there's the eye specialist, Dr Hollenbach (? spelling) who sends his registrar in to bat for him. They got their notes wrong and wanted to operate on my eye until I told them that the nerve is compromised and not cut.  Luckily Dr E was on hand last week to set them straight.

I'm on the list to have the nerve conduction test done.  I look and feel every day for movement of my lip and sometimes I fool myself into believing that it actually moved! 

Now I'm calmer and more in control of my feelings so I've embarked on losing weight (gained 15kg with emotional eating) and it seems to get my mind off my other probs.

I'll jump in and help on other threads where I can.  Experience can be a wonderful teacher.  Thanks again everyone.

[joebloggs]

Suu.... you're so rocking it!  Good for you.  And nice to see that doctors the world over can cock things up!!  Luckily in your case caught in the nick of time!  Good to see you're going to get some home physio too... that's really great, so glad for you. 

Home to Aus for Christmas on Sunday, can't wait.  Just found out today my employer being closed down by Government here in UK so will also be on job hunt!!

Best wishes love and a wonderful Christmas to you!  We all can count our blessings every day, that will get us through.

xxxx

[Suu]

UPDATE:
I guess that it's time to admit that once an AN sufferer, always an AN sufferer. I've spent many days wondering if I should whinge about my plight (that's the word of the week  ) or suck it up and get on with it.

Post-op has been up and down with dizziness and being very wonky on my feet at times.
I had the nerve conduction test on the facial nerve and the results were against me and I've been told that it's not going to 'spring back' as first thought. The good news is that the doctors are going to try a nerve graft from my tongue so I should be able to lick my own ear (as I tell the grandkids). LOL I see the ENTs and Neuros on the 14th of March.

My eye is being half sewn shut on the 9th due to it drying out so much.  I think I've put a tonne of lacri-lube in it - enough to grease a small sized car! 
After the graft, the eye surgeon will tell me the next thing he'll try.  I think he wants to surprise me 

I thought I was doing well enough to start a short exercise program so the Grots (grandchildren) bought me a Wii with Wii-Fit and, for the last week, I've been doing simple exercises on it.  Until today that is....  I fell off the balance board after a wave of dizziness.  Off to our GP and she said to wait till I see the specialist on the 14th before doing anything that involves balance or bending.  Now I have an even better excuse to be lazy 

I make light of this because it's a little scary and my way of approaching things that I have no control over is to laugh about it.

Does anyone else have symptoms like these nearly a year down the track?  What have your doctors said to you and is there a 'cure' for when we no longer have that little gremlin in our heads?

Love and hugs to all of us.
Suu xxoo

[Suu]

UPDATE:

Today I saw the ENT registrar who has put my on Lorazepam for a couple of weeks.  This is to see if it can help the crazy dizziness and nausea I've got as well as the anxiety I'm getting. I was also told I will need to tape my eye shut during the day until it's sewn.  I'm seeing double, have lost a lot of vision, and it may be one cause of the dizziness.
The other could be the high bloodpressure readings I've had twice in the past 4 days.  60/100 and 59/98  I don't eat fatty foods or have salt so don't know what the pressure is caused by.  Oh, maybe it's due to having a large lump taken out of my head which rendered me deaf and with a face that Mohammad Ali would be proud of? LMBO

The eye doc is going to show me how to tape my eye on Wednesday.  I wear glasses so can't wear a patch. I'm up for trying anything to walk a straight line and to stop the eye from having heaps of lube put in it daily (hourly at the moment).

I’ve also been referred to the neuro-physiotherapist who will call me in the next 2 weeks to make an appointment.  That will be eye/hand coordination and eye/feet coordination.
Fun times are ahead!

Anyway, I'm off for the night so I can take a little white pill and maybe get some deep sleep.  I hope everyone is coping and if there's anything I can do to help in any small way please give me a yell.

Best wishes,
Suu (Down Under)

[CHD63]

Hi Suu .....

The other could be the high bloodpressure readings I've had twice in the past 4 days.  60/100 and 59/98  I don't eat fatty foods or have salt so don't know what the pressure is caused by.  Oh, maybe it's due to having a large lump taken out of my head which rendered me deaf and with a face that Mohammad Ali would be proud of? LMBO

Just a thought. Do all of your docs know about your blood pressure fluctuating?  It is very important that they all know, because blood pressure and/or meds used to treat it can cause dizziness and in some cases nausea.  If I am reading your post correctly, I am a little puzzled by 60/100 or 59/68 being considered high.  I am not a doctor but everything I have read recently is anything above 130/80 is considered to be higher than it should be.  The 100 is up a bit but 59/68 would be considered low.  I take my own BP every morning and have been on BP meds for many years.  The important thing is for all your docs to know.

Wishing you well.  Clarice

[moe]

Hi Suu,
Just now catching this thread so now I understand your history better (sent you a PM this morning)
Woah, what a ride,~ the sense of humor really does help to buffer all the gloom and doom. Good for you.
The eye stitched shut is no fun, as I mentioned, but I did get used to it, and it very well may help your other problems with dizziness, double vision -ughh.....

Definitely looks like you have LOW blood pressure which may also be causing the dizziness...hmmm

Keep truckn, one day at a time. It will get better, just may take a while. One thing at a time. (actually 2 or 3 for you )
l.the eye
2.physiotherapy for coordination.
3.possible surgery- 7/12 transposition. It IS a full time job for you. Hopefully your grandkids brighten your day I've heard they are wonderful!

It's all so much coming at you. I'm hoping the nerve graft can give you some relief but first is importance of protecting that cornea.

Anyway, keep us posted and glad you got some medicine to calm the nerves. I think you are justified!
Maureen

Hang tough

[Suu]

Hi Suu .....

Just a thought. Do all of your docs know about your blood pressure fluctuating? Yes, they all do now. It is very important that they all know, because blood pressure and/or meds used to treat it can cause dizziness and in some cases nausea.  If I am reading your post correctly, I am a little puzzled by 60/100 or 59/68 being considered high It's the dialstolic - bottom - readings of 100 and 98  that the doctors are worried about. I am not a doctor but everything I have read recently is anything above 130/80 is considered to be higher than it should be.  The 100 is up a bit but 59/68(it's 59/98)  would be considered low. 

Wishing you well.  Clarice

Thanks heaps for asking about this Clarice.  The 59 over 98 is coming down so I may take your advice and get a monitor for home.

[Suu]

Hi Suu,
Just now catching this thread so now I understand your history better (sent you a PM this morning) (Received with thanks  )

Woah, what a ride,~ the sense of humor really does help to buffer all the gloom and doom. Good for you.
The eye stitched shut is no fun, as I mentioned, but I did get used to it, and it very well may help your other problems with dizziness, double vision -ughh.....

Definitely looks like you have LOW blood pressure which may also be causing the dizziness...hmmm That reading read 58 over 98  

Keep truckn, one day at a time. It will get better, just may take a while. One thing at a time. (actually 2 or 3 for you )
l.the eye
2.physiotherapy for coordination.
3.possible surgery- 7/12 transposition. It IS a full time job for you. Hopefully your grandkids brighten your day I've heard they are wonderful!

It's all so much coming at you. I'm hoping the nerve graft can give you some relief but first is importance of protecting that cornea.

Anyway, keep us posted and glad you got some medicine to calm the nerves. I think you are justified! I think so too! LOL[/color}
Maureen

Hang tough