No story is the same

[Jackysue]

Hi all~ I'm a new poster, but have been lurking here for the last 4 years since my surgery.  I haven't had much courage to post, but I am starting to feel that I have no one to talk to about what I'm going through.  You all seem so supportive, and at the least I can vent and someone will understand. I had my surgery March 6, 2003 at UCSF.  When I read stories, I see bits and pieces of the same problems I have.  It is so incredible that we can all have the same kind of tumor, and no one story is the same. 

I can hardly believe it's been 4 years.  Dr. Jackler did my surgery, and I think he knew he was leaving UCSF for Stanford when he saw me.  You don't make that huge of a decision quickly.  I might be wrong, but I don't feel like I got his full attention.  I was confident knowing that he was an expert in his field.  My husband and I saw textbooks in the college bookstore that he actually wrote!  Now as I look back, I don't get the same warm fuzzies that you all have about your doctors.  For one thing, he never told me to have an MRI at 3 years.  I am assuming that is a normal time frame for one?  I still haven't done it.  I am scared to death to go.  I have been on this emotional rollercoaster since the first MRI that started all this. I wish I had known more, and did more research on the whole AN thing.  I guess I was in denial.

I some facial problems.  The Dr. told me that he didn't have to touch my facial nerve, and he was thrilled that it was totally left in tact during the surgery.  So...why do I have problems then?  Lately, I'm finding that I don't want to smile.  It's easier not to since I look "even" when I don't smile.  I hate that! It makes me sad.   I lost my hearing on my left side too.    

I guess I'm rambling.  I have all these thoughts in my head, and sometimes it's hard to get them all out and have them make sense.  There is so much to say.  I just wanted to write in and say HI!  I'm hoping to post more.  I'm trying to keep my computer time to a minimum.  It's hard with the new laptop!  They are so much fun!

TTYL
Jackysue

[leapyrtwins]

Glad you decided to post.  I'm a newbie and I'm finding this forum very helpful.  I too have SSD on the left side.  As you say, everyone's story is different but I too, am finding that pieces of others stories are a part of mine.  It's nice to "relate" to others in my situation as I personally know no one who has had an AN.

I'm sorry you didn't get the "warm fuzzies" about your doctor - I had 3 who were just incredible and I think that helped me immensely during the entire process; from diagnosis to recovery.  Wish you had had that.

I had retrosigmoid surgery on 5/31, and my doctor told me that I need a followup MRI in 1 year, so I'm confused about your comment about having one in 3 years. 
Maybe a more experienced member can tell you if the norm is 3 years.

[Obita]

Hi there Jackysue and leapyrtwins:

Jackysue:  First of all, welcome to the forum. I am glad you finally made an appearance!!

Please call UCSF/Otolaryngology Dept. to have Dr. Jackler's replacement order an MRI.  Every doctor has his/her own protocol for follow up MRIs.  I get them every year and have never asked when the yearly ones will stop.  I like the yearly MRIs for piece of mind.  The bottom line is that ANs can come back.  I also feel that if my AN comes back, early detection will give ME the choice on future treatment.  If it grew back and was not detected until it was large, surgery would be my only choice and I really wouldn't want to go that route again.

Also, you might want to see Dr. Jackler's replacement regarding your facial problems.  He/she can test your nerves.  Facial retraining is a possibility and so are some facial reconstruction procedures.   Plus, should you ever want to explore a hearing device, you will need a doctor and audiologist in your corner!!

YOU ARE NOT ALONE!! 

leapyrtwins:

Welcome to you too and congrats on being a Postie!! 

Kathy

 

[Yvette]

Hi newbies, so glad you'all stepped in. We all need eachother. I think talking to others who have been in the same boat, furthers healing! I too have ssd; JackieSue-how have you adjusted to this over the last 4 years?  Yvette

[leapyrtwins]

This may be a dumb question, but remember, I'm a newbie.

Can someone tell me what a Junior Member and a Hero Member are?  And how did you obtain this status?

Thanks.

[Sue]

I can answer that last question.  The more you post on here, the higher your points go and after 50 you become a jr. member I think.  It just indicates how long you've been hanging around the forum and how chatty you are!!

Sue in Vancouver USA

[Jackysue]

Thanks for all the welcomes!
Brucifer~ I know I should get an MRI.  I guess I will have to put that on my TO-DO list.  I live in CA, but I'm still 5 hours away from UCSF, and about 6+ hours from Stanford.  Thank goodness they are driveable, I would have hated to have to fly.

Obita-Thanks for the advice!  I had never heard of a nerve test.  That is something that I would like to do.  I just can't get past the fact that the DR said that the facial nerve was left intact.  I just hope it's not too late.  Can nerves just die if they aren't used?  I'm going to do research on that test.  Facial training is also interesting to me.  I guess if I had gotten an MRI, it would have led to a Dr. appt, and things could have been started earlier. 

Yvette~ As far as dealing with ssd, I just deal with it.  It's a bummer when I'm in loud surroundings.  It's hard to hear anyone.  I do like the fact that if I lay on the hearing side at night, I don't hear anything....especially the snoring!  LOL  I guess I'm kind of used to it now.  Sometimes when I have to say "I didn't hear what you said?" one too many times, I get bummed out.  I can't do anything about it, so I just deal with it.  I wish it wouldn't have ended up this way, but I guess it could have been worse.

Have a good week!
Jackysue

[OTO]

Jackysue

Regarding frequency of post-op MRI's... during my pre-surgery briefing the House Clinic (in LA) gave me a checklist that said to do an MRI at one-year post surgery (they would send a postcard reminder).    After the surgery, Dr. Slattery (my doc at House) said he would prefer an MRI at 6-months.  He sent a letter to my local ENT doctor with the outcome of my surgery and a request for an MRI in 6-months.   My local ENT said he would send me a post-card reminder.    So it seems every individual's situation is different, in my case, I expect to get a reminder in another 4 months (but I've already marked my calendar)... ha ha..

Regarding where you get the MRI.  Some where in one of these forums someone posted about the cost of MRIs.  There are centers that do MRIs, CT Scans, etc., as a comercial type operation (not inside the hospital).  They offer lower prices....  maybe it's more convenient to do an MRI locally, send the results to the doctor, and then travel for the office visit...

My face is giving me problems too.   I'm only 7 weeks post-op, but the left side of my face is numb, I can't smile or scrunch my nose, and when I'm tired, I start to slur when I talk.   The doctor said it might be some post-op swelling or stress on the nerve.    They said when I first came out of aneststhia (sp?) in the ICU, I had the facial movement, so they're sure it's not permanent.... the thing about nerves is... they take a long time to get better.   Keep asking questions...  hopefully, you can get some good answers from the doctor.  OTO
 

[Yvette]

Hey Jackiesue, I had a lot of trouble in loud places too. My custom earplugs filter out background noise, but I can still hear my husband speak to me from across a restaurant table. I love my plugs. I can walk on the treadmil, have the box fan blowing at high (ie: loud) speed on me, and still hear the tv just fine. Maybe they'd help you too:-)   Yvette

[marg]

Yvette, what kind of earplugs do you have?  I wonder if they would be helpful in the classroom when I teach .  Thanks, Margaret

[Yvette]

Hi Marg, they are called musician's plugs-they're so a musician can block out the other players to a degree without compromising being able to hear themselves. My GP sent me to the audiologist for her to make the molds of my ears. The plugs have an interior insert you can pop out and exchange for ones that offer more or less aclusion, as you need it. She said she does lots of AN patients. The plugs help keep my tinnitus down too. They cost about 170.00, but I think my insurance will reimburse me some. It's worth it to be comfortable in noisy places! Best wishes, Yvette

[Jim Scott]

Hi, Jackysue:

Welcome, lurker! Glad you decided to post.  It can be sort of iberating, as you probably realize, now.

You are certainly correct that we all have similar but individually different AN 'stories' to tell.  However, the similarities are what bond us, as we all share the same basis for our stories...a relatively rare, acoustic neuroma tumor.

I was sorry to read about your facial malfunction and can understand your confusion as to why you're experiencing problems as your surgeon claimed he didn't touch the facial nerve.  Perhaps the surgeon didn't disturb the nerve but the tumor did ,and that produced the symptoms you are experiencing.  Just a guess.  I had some very minor post-op facial malfunction (couldn't smile quite normally) but it was resolved within a year as the affected nerve healed.  Whatever aloof feelings you sensed between your surgeon and yourself are moot, at this point, four years later.  I'm sure he was a fine doctor, even if a bit distracted at the time you engaged his services.  I would definitely call the doctors office (Dr.Jacklers' replacement) and ask him to order an MRI scan, with contrast.  No one likes having these done, but it's vital in order to observe on any re-growth of the tumor and if that happens, which is fairly rare, to address it while the it is still small.  Generally, an MRI scan every year is the norm for post-op AN patients.  You're behind on yours.   

Although we often emphasize that an AN is benign we have to remember that it's still a brain tumor and can have life-altering effects.  From anxiety to depression, AN patients run the gamut.  Some of us carry the effects of the tumor and resultant surgery for a lifetime...and it isn't always visible.  I believe a positive attitude is imperative to a successful healing and I urge anyone experiencing  concerns to address them with a responsive doctor.  If your doctor isn't responsive, find another.  It's your life and well-being at stake.  You can't afford to compromise.   

Now, call and schedule an MRI.  Closer to home, if possible.   Ask the doctor's office people if they can reccommed a facility nearer to you than the ones you mentioned that are a 5 or 6 hours drive.  That's not realistic.  There must be a facility closer to you.  Check.

Meanwhile, thanks for posting.  We look forward to reading about your progress in the weeks and months to come.

Jim