Post-Treatment > Post-Treatment

No story is the same

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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!!  ;D

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.

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