My story

[k92girl]

Hi everyone! A friend just told me about this group. I am so glad to share my story with those of you who have gone through this & can understand what I am facing & living with every day! I was first diagnosed in May "03" & told it was a very small tumor & that people live with these for a long time with no problems & that they don't usually get very big & since I was young(47) & so healthy I would probably be fine. And for the most part I was except for the feeling like my ear was plugged up & the constant ringing in my ear. Until about 2 years later in May of 05 when I almost blacked out in my classroom one day...I use to teach preschool, taught for 10 yrs. Will try to make this as short as I can. Went to the Dr. & was referred to specialists to find out the tumor had grown & needed to be removed. My surgery,14hrs. a translabyrinthine resection on the right side was on Aug. 5 2005, to remove a 3cm plus skull base neuroma. The tumor was removed & all had appeared to have gone well, no damage to facial nerve...until 4 days after when I couldn't close my right eye. Dr.'s said it was due to post op nerve damage! Had to begin seeing an ophthalmologist & had a tiny gold weight placed in my eyelid so my eye would close. Also had nerve damage to the right side of my face now. Weight was in for about a yr until my eye finally closed almost completely now without the weight. Along with this I was left with balance problems(disequilibrium)had vestibular therapy for 1 yr. & I still use a walker or cane or have to hold on to some thing,loss of hearing in the right ear& tinnitus,facial weakness,metallic taste in mouth,eye problems...severe dry eye & had to have cataract & lens replacement surgery, & fatigue.Besides the balance problems my biggest complaint is the pressure I have across my nose & under my right eye...always there & sometimes unbearable!! Feels like I got punched right between the eyes!!! Never imagined anything like this would happen! Was wondering if anyone else has similar problems?

[CHD63]

Hi k92girl and welcome to this forum of caring, supportive friends.

Probably all of the problems you are describing someone has faced on this board.  Fortunately many of us have not dealt with all of them that you have.

It is hard to believe that even back in 2003 this was brushed off seemingly lightly by your first diagnosis.  Even for small ANs at diagnosis, the recommendation is to do yearly follow-up MRIs with contrast.  For new people out there, we always recommend that they insist on an MRI with contrast, the only way to accurately diagnose an AN; not to miss a follow-up MRI; and to report any change in symptoms to their physician.  There are several of us currently active on this board who had extremely unusually rapidly growing ANs.  I went from a clean MRI to a 2.6cm AN 15 months later.  Obviously you had a rapidly growing one, as well.

Because the AN surgery two years ago was my second skull-based surgery, I no longer have functioning vestibular nerves.  Therefore I can identify greatly with your balance issues.  I, too, had vestibular therapy for many months.  Now I no longer use a cane or walker, but I am extremely careful when walking and choose safe pathways wherever possible and use someone's arm when not possible ..... and never attempt to walk alone outdoors at night.

Tell us a little bit more about the original size of your AN when first diagnosed, where you had your surgery (only if you care to share), etc.  So glad you found us.  You are now among friends who know and care what you deal with on a daily basis!

Best thoughts.

Clarice

[sgerrard]

Hi k92girl,

Welcome to the forum. Sadly, with respect to your post surgery symptoms, I must use the slogan at Staples, and say yeah, we've got that. 

In fact we have a whole section on eye issues, and another on balance issues, and one on facial nerve issues too. You will find some tips on how to handle it, and mainly some new friends to share the adventure with. Some of them will be along shortly.

Glad you joined us!

Steve

[cin605]

Welcome!
My name is Cindy.i had surgery almost 2 years ago...i have balance issues,pressure in the neck and head,Blurred vision somedays fine the next.Annoying muscle spasms from nerve damage...feels like my head just wants to shake?
I have no facial parelisis.My Tongue was swollen just on the left side for 4 months after surgery,now it fills w/fluid undernieth and drains when ever it feels like it causing major nausea.
i also can not see in the dark.
wierd stuff crops up randomly.
Know you are not alone.
Feel free to vent,rant,ask any questions you may have(anything goes!)You can alsmost always find another member that has it or has had it or read up on it.

[Lizard]

Welcome to the forum, sorry you have been dealing with so much and when you began your journey with a small AN many of these problems could have been lessened or even avoided.  I know you've already accepted this and its probably in the past, but I would be a little mad...I can't believe they didn't even want to monitor it with and MRI. 

I'm posting because I do have that pressure you speak of and an antinflamatory has helped, but I'm going to try Botox in that area.  You should speak with your neurologist and if you don't have one I'd try to find one.

There are options to help with that pain, and pressure.
Hopefully the worst symptom can be resolved for you.
Ask questions you may have and search the site there is a wealth of information out there.

Take care,
Liz

[moe]

HI!
Wow, you have a lot of symptoms going on there. I can chime in with the
 tinnitus, balance, SSD, facial paralysis, eye issues (My facial paralysis  issue just took a turn for the better last week with surgery for smile restoration)

Living with these nuances can get very old and quickly, day after day, year after year they keep coming at us.
There is no rhyme or reason to a lot of the symptoms. The barometric pressure changes for example affect balance/equilibrium.

Keep pampering yourself however you can. We all can relate!

Some days are OK, some days are good, others suck.

Balance games, walking, resting are the order of the day now, while socializing is not too much fun because of the tinnitus, SSD. Ah well, we just keep pluggn
It's nice to come here and vent though.
Hang in there.
I do love the outdoor stuff in the summer which helps tremendously with everything. I love this NW summer weather. Hello sunshine!
(ok not today, but it was out yesterday for a couple of hours)
Maureen

[Jim Scott]

k92girl ~

Welcome to the discussion forums.  I'm sorry to learn of your many post-op issues but, as previous posters have indicated, these complications can and do arise in some AN post-surgery patients.  Although you seem to be improving and coping, the facial pressure is clearly a problem .  Frankly, I have no suggestions on how to alleviate that but I would consider consulting your doctor and letting him know that this is ongoing and painful.  Don't ever 'suffer in silence'.  Your equilibrium may never return to what it was before your surgery but, with time and work on your part, it should continue to improve, if only slightly. The hearing loss is, unfortunately, very likely permanent.  However, there are Bone-Anchored Hearing Aids (BAHA) available that are a tremendous help to those suffering from unilateral hearing loss, as you are.  The tinnitus is also not likely to disappear, but it may subside or, as I have, you'll get used to it and be able to 'tune it out' most of the time.  The fatigue you feel is fairly normal because your brain is working hard just to keep you balanced and functioning.  That may improve with time, although because you're almost 5 years post-op, it may not be a huge improvement from what it is now.  The other issues you're suffering with (metallic taste, facial weakness, eye problems) can probably be addressed by specialists and some relief could be available for you.  However, you'll have to ask your doctor or, as I recommend, be your own advocate and make appointments with doctors that specialize in facial reanimation and other disciplines that affect your situation.

I trust that our many members will add more to this thread that may be useful to you but again, I want to extend my welcome and hope for better days in your near future.

Jim    

[wendysig]

HI K9irl and welcome,

I'm amazed that once you were diagnosed with a small AN, you weren't told to get followup MRIs at least once a year.  I'm sorry to hear that you are still having so many problems since your surgery.  Unfortunately, we have heard your symptoms before.  I know you said you went to rehab but are you still doing your exercises.  I find if I slack off too much, my balance gets worse in hurry.

Wendy