Back from translab surgery.. what happened???

[alabamajane]

Hi all,
Just getting back on from my surgery of Oct. 27th. I had translab for an approx 2.8cm CPA tumor that was pressing on brain stem and surrounding nerves.. I was diagnosed July 2008 and w&w until this last year I knew things were getting worse. MRI confirmed growth and brain stem compression. anyway, surgery was about 11 hrs Thurs and the facial nerve was indeed totally involved as I had suspected as I had numbness on face and tongue numbness in the last 6-8 months. So stayed in ICU over weekend and on Monday Oct 31,, yeah is that some kind of halloween joke or what,,, I had the facial nerve graft which took another 5 hrs ,, I think he said nerve 7 to 11 jump?? anyway , he took nerve from tongue on right side and grafted it to facial nerve. So I look as if I have had a stroke on right side , , I know many of you have been here too.. I was deeply disappointed of course when I found out Friday what had transpired,, but realized the best part is that the tumor is gone,, hopefully for good,, and I am on the 'other side" as you all say, starting the healing/ recovery phase. Dr said in 6 mo. I should be showing good changes in facial movement and in a yr should have much better use of that side.
I don't want to scare anyone with this journey, I know from here that everyone's is different. I now wish I had had better Dr advice,, from another guy I was seeing, and had not w&w, but that is me,, it may not have been different but I think it would have. One reason I was w&w to begin with was denial I know that and I just wanted it to go away.. it won't,, if that is where you are on your journey.. it may not worsen as mine did,, but it is probably NOT going away on it's own..
My Dr and many of you have said that size is really not a "big" deal or deciding factor ,, and one reason I think that is because you don't know what is involved "in there"...my Dr said location was important whether is was just in the IAC, in the CPA, or in the CPA pressing on brain stem..
I appreciate all the prayers and good thoughts said for me,, I just got more than I signed on for, ,, so have to start from here instead of where I thought I might have been.. I am just GLAD it is over and to this point. I have a long way to go to any sort of normalcy, , or as you all put it ,, "new normal",, I want my old normal back miyself!!
I know one of you is anxious about having her translab, I forgot your name, but don't let this unnecessarily scare you,, yours may not be anything like this.. and I am "newly" recovering so still in somewhat of a state of shock as to what all has transpired in last 10 days or so.. I have to keep looking forward and realize I am stronger every day, have wonderful husband and support group and I will be OK now and in the future,, AT LEAST "IT" is out of my head!!!!!
It was a hard journey, I won't sugar coat it, but on the up side of the mountain. my love and thanks to all who have been there with advice and love these last few years. I will be back on soon.. Jane

[Jim Scott]

Hi, Jane ~

Welcome to 'Postie-Land'!  Thanks for the informative update.  I'm sorry you had facial nerve complications but, as you stated, at least the tumor is gone.  You seem to have a positive attitude about regaining normalcy and I can tell you from experience, that will be a big help to you as you continue to recover.  Don't waste too much time on recriminations about not acting sooner.  I procrastinated seeing a doctor about (what turned out to be) my AN symptoms until my AN was 4.5 cm and I had lost all hearing (permenantly) in the affected ear.  I was blessed to have a splendid neurosurgeon, very experienced in AN surgery, who debulked my tumor and then teamed with a radiation oncologist to 'map' my 26 FSR treatments.  I emerged from the surgery with no complications and the FSR was uneventful. Later MRI scans (the last in 2008) indicated that the de-bulked, radiated AN was 'dying' .  I was back to (relative) normal within a few months and remain that way, today, five years later.   I hope you'll enjoy a rapid recovery, too.  Thanks too, for adding the caveat to your post that every AN surgery patient's experience is different.  It is.  That's why I offered my experience in this post.  I'm looking forward to seeing your posts as you continue your return to normalcy. 

Jim

[alabamajane]

thanks Jim you have been very helpful and informative to me during this journey. I am stronger today than yesterday.. that is all I can ask for right now. It has definitely been one of the hardest periods of my life but all uphill from here.I will post again soon. As my Dr said to me... AN surgery is not for the weak or wimpy!!!! It is a hard process no matter what circumstances are.. I think I just really did not know/realize just how difficult it would be,, hard to believe that but in hindsight I think that is true.. thanks again for your reassurances...

[Rivergirl]

Although I don't like how I feel 4 months post op and I did not care for the surgery at all........I would not have w&w if I knew then what I know now, would have done it before it got too complicated.  Hope you are doing well and each day you feel better.

[Mei Mei]

My heart goes out to you both.    Jim as always is a great support.    As Dr. Kondziolka said at the Symposium in June regarding the W&W:   What are you waiting for?    I myself opted to move forward and do the surgery against one friend's very great warnings.   I don't know in retrosepct which would have been better, but  I am sorry I went to Johns Hopkins for a small tumor that was still inside of the Auditory canal.   I didn't research enough and now wish I had gone to Dr. Friedman at House or done radiation at Pittsburgh which was a choice of a doctor himself in my local DC group.    I cannot type too log because my neck heurts to stay on the computer too long.

Please know that I am thinking of you and wishing you a speedy recovery from your surgery.

Sincerely,,
Mei Mei

[alabamajane]

I too believe in my situation w&w was not the right move.. mainly because tumor was already out of IAC when diagnosed and in the CPA area.. but this is all in hindsight and not everyone's situation is the same. I did have consult with Dr Slattery from HEI in 2010 and he said w&w was "ok" with him when I asked, but surgery was his suggestion,, so you never know I guess till they get in there. I am sorry too that you are not feeling much better at 4 mo. cause two weeks out ,, I did hope things would be much better by then,, but patience is one thing I have to develop more of, for sure!
I agree that I am not sure w&w is a prudent way to go for some people,, but everyone has to make up their own mind.. I don't know what I was w&w for either except not wanting to have surgery,, which was not right in the long run... but now I am just venting,, sorry!

[LisaM]

Hi Alabamajane,

Thanks for your honesty at such a difficult time.  I send you lots of healing thoughts. 

If you feel up to answering...

I am curious to know how large was  the AN in your head in 2008?  How much did it grow and how often did you have MRIs?  I too have consulted with Slattery at HEI.  He recommended surgery but told me that w&w would be OK.  Where did you have your surgery?  I can probably go through some old posts and find out.  I've been waiting and watching since April 2011 when diagnosed.  Had an MRI in July no growth.

Thanks again for taking the time to tell us what is going on with you.  You will get better in time.  From everything I've read the first 5 days are the hardest and the first 5 to 6 weeks are pretty tought too.  Hang in there!

Sending love.

Lisa M

[Brewers7]

Jane.
     I am so sorry to hear about your difficulties.  I am glad yhat they went ahead with the 7/12 graft, so that is brhind you.  I prayed today that it will be successful.  I am always amazed and thrilled by those who are able to post so soon after surgery.  That has to be a good sign.
Susan

[alabamajane]

Lisa M
Thanks for sentiments..
I was told by former Dr that AN was approx 1 cm. .or 12mmx12mm.. but have found out that measurements are very subjective! All depends on radiologist who reads it, in my un-medical opinion... I have had approx 7 MRIs on tumor since 2008, first every 6 mo then annual.. as I said earlier,, also location of AN matters.. so if they tell you it is only in IAC, auditory canal, it will  not likely cause as many symptoms as one that goes into CPA,, and continues to grow towards brain stem.. mind you I am not a DR by any means ,, but this is thoughts after learning about mine and it's "behavior".. I knew mine had involved brain stem and also felt it was affecting facial nerve because my tongue was numb and face had some numbness at times..
 Mine ended up being a 2.8cm, large but not particularly huge,, but location was out of IAC and mostly in CPA  area pressing on brain stem.. things to keep in mind I guess,
I was not able to go to House clinic and had mine done at UAB hospital in Birmingham AL.. I can not look back and wonder if anything would have been different,, I just have to move forward.. As Jim said about his,, maybe they could have just debulked mine and then had radiation treatment on the rest left on the facial nerve, I will never know.. but cannot dwell on it either.. we all have to make these decisions for ourselves for personal reasons.. take time,, and think hard about what ever  you decide to do and make sure you are comfortable with it ... remember, I am still only two weeks out,, so may be venting way more than I will later on........ good luck,, and just remember that ALL AN situations are different as are outcomes..

[LisaM]

Thanks for all the info Jane.  Please keep us posted on your healing process.  You are in my thoughts and I truly believe that as the days go by you are going to feel much, much better.

[jockieau]

Hi Alabama Jane!

Sorry to hear how you are feeling at the moment.  I have to say I really appreciate you posting this - from the perspective of someone in W&W.  I think that question "what am I waiting for" is the right one.  For me, the answer is "for it to grow or my symptoms to get worse" (mine is totally IAC) - but I do revisit that every so often and think "well if I have to get it out anyway at some point, perhaps now-ish is a good-ish time"...  For me, I always come back to "while I am feeling ok I don't want to rush into something that may make me feel a whole lot worse".  But I think once I feel the symptoms increasing I'm goin' in for the chop 

I'm not a pray-er but I am sending you the strongest vibes to get better soon!  You sound like a strong one and I am sure things will only improve from here - it's very early days yet.

And thanks again for sharing you thoughts on this - I found it really thought-provoking.

Best regards
Jockieau

[Chances3]

You go girl !

There are only tomorrows and they do get better.

God Bless.

[judsell]

Thanks for sharing AlabamaJane. I just had my translab 11/4 and sooo feel your pain! They had to severe and reattch my facial nerve during surgery. I don't remember signing up for that one! I am very glad to be on the other side as well and I know things will improve daily. Stay strong!

[alabamajane]

Hi again,, I am back on after short break to regain my composure.. Hope I did not "scare" anyone with my previous rants,, I am feeling much better today than even a few days ago. It does get better, especially after getting ALL those meds ,,pain and anesthesia,, out of your body!!!! Also after some time to reflect on the "new" me and how it is not always going to be this bad.. I am able to see things more clearly,, I even went out to eat over the weekend at a "real" restaurant,, wow,, things are getting there!!
Jockieau, I hope I did not say anything to give you second thoughts about your situation.. but just stay on top of your tumor as I am sure you will from your post.. w&w is a valid "treatment" for those with no symptoms as I was for several years,, so hang in there,, just keep in mind that at some point, I believe ,, from NON medical standpoint,, that most ANs do have to be treated as they do not go away... but I believe you are right too in thinking as long as you don't have symptoms,, stay away from the surgery as it is intense,, and will change your life regardless of how it "goes"....
Judsell,, I know you know where I am at right now as you are so new to it too.. hard isn't it.. especially to lose the facial nerve when as you say we did not sign up for that !!!! But it will get better for both of us I firmly believe! My Dr says about 6 mo.s and I should see some considerable improvement.. sounds like long time, but it has been 1 month already!! The shock after the surgery is one of the hardest parts to get over I believe..I still can't feel my right ear and numbness on right side of face,, but with swelling down,, I ALMOST look the same... I feel so much better now that my body is getting back to normal.. walking each day really helps especially with depression, which I am trying my best to stay on top of.. hang in there and believe you will be much better before long!!
Chances3,, thanks for your continued support and good wishes,, I am looking only ahead,, what is behind me is done,, I must go on with life and make the best of it as it will only get better from here,, I do believe I have hit bottom with this journey,, at least I hope so!!!
Thanks for all the wishes and I return them to you all! Happy Thanksgiving to all ,,even if we are a little sloppy when eating this year!!!