Translab Allegheny General, 12/3, Dr. Chen and Aziz updates

[Slab]

large (3.5-3.7 cm) acoustic neuroma, left ear. diagnosed by MRI October 30th. Operated upon by Pittsburgh Ear Associates at Allegheny General Hospital in Pittsburgh, PA on December 3rd.

12/3- arrive in Pittsburgh at 5 AM for surgery, after 11 1/2 hours of surgery, wake up (if you can call it that). drs. (and wife) thrilled with results of surgery- no complications, 100% removal. My facial nerve is a 1 on the Brackman scale, no more weakness than when I went in. Spend the night in ICU, get moved to a regular bed in the Neurosection and then get released from the hospital on Thursday 12/6. Up and walking next day (albeit like a thousand year old man).

12/10- wake up at home with fairly significant facial droop (look like I've been to the dentist and can't blink left eye). Called Dr. Chen and am scheduled for an appointment tomorrow morning. Likely they will fit me with an eye patch and "this too shall pass".

Comments/questions-
1. it took a long time to get my appetite back, my first time feeling hungry in over a week was last night at 3AM.
2. stool softener is a blessing from the gods and to be taken early.
3. One thing that showed up almost a week after surgery was a very achy tightness in the buttocks and down the back of both legs, almost like I'd pulled both hammies.... Anyone else experience and/or know why?
4. Anyone know a medical reason for all the tiredness? The chemicals should just about be out of the body by now, right? I'm really not in much pain.
5. First couple days out of surgery, I could barely close my eyes without experiencing crazy dreams. Anyone else? Any explanation? Sometimes it seemed as though I was dreaming before I actually fell asleep.

Anyway, that's my story to date. I'm so thrilled to be post op and no major complications. So far I have nothing but the very best things to say about Chen, Aziz and the rest of the folks at Allegheny General.

[ewchisek]

glad to hear you are recovering. do you live in Pittsburgh or did you travel for surgery? How many doctors did you consult before the surgery?  I have only been a week diagnosed, so it is extremely comforting to hear your story.

[Slab]

glad to hear you are recovering. do you live in Pittsburgh or did you travel for surgery? How many doctors did you consult before the surgery?  I have only been a week diagnosed, so it is extremely comforting to hear your story.

I live about 2 hours south of Pittsburgh in WV. I consulted with 5 different doctor teams, although most weren't face to face- I sent them my MRI and then consulted on the phone. Likely any of them would have done a great job, but I wanted to make sure I was getting the best combination of experience, bedside manner, and ease of logistics that I could.

[LizAN]

Hi, Slab,

Where was your tumor, exactly, and what kind of surgery did you have?

I came out of translab surgery with my face working perfectly.  Some time in the next 12 hours, while I was still in ICU, my face went from a 1 to a 3.  The docs said it was due to swelling of the facial nerve, from irritation.  They didn't actually cut it one bit, but they may have stretched it.  Immediately, they started me on steroids, and within a day it was back to almost normal.  (I would definitely inquire about that option.)  They told me "What you came out with, you end up with,"  meaning that in time my face would be completely back to normal.  I hope they are right about that, but I really can't complain about the state of my facial function even now.  Considering how bad it could be, I feel pretty lucky.  Five months post-op, my left eye is still a bit larger than my right  (partner says it kind of stares at times and my expression is hard to read, but it is nothing a stranger would notice).  I still have a slightly bitter taste in my mouth from time to time, but it continues to get better.  When I'm tired it gets worse, as does my tinnitus and my balance, but overall everything is improving with time.

I had the crazy dreams, too.  I think for me, it was the pain meds, but maybe it was the steroids or an after effect of the anesthesia.

Liz

[millie]

Hey Slab and Liz-I had intense dreams too-or maybe it was just ruminating-after waking up from anasthesia...and I think my thoughts were manipulated by the painkillers too those first days. I vaguely remember writing complicated lists of what I was going to say and do when I was better, right down to the exact and perfect words for each action.  I don't remeber that well now.
Only that I swore I'd never complain again if I got better.
  I was off the steroids in a week.  On the House Brackman scale I went to a 3 after surgery,and left the hospital with a facial droop I was told would improve.   Liz, I believe I too was told they stretched my facial nerve quite a bit.  I went to the ENT DEc 6 and he said I am now a 2 and I am getting better should get even better.  I notice my left eye (AN side) is like your-rounder, bigger, now (unlike the really droopy eyelid pf several weeks ago)  Has anyone noticed the eyelashes on the affected eye are much thinner after the surgery?
Slab, I am glad your surgery went so well.  Like yours, my doctors and spouse were  also really happy with my surgery results -but I felt like I  had collided with a freight train.
Liz, can you elaborate on "What you came out with you end up with..."   When I was able to get up and look in the mirror twelve hours had passed and with the bandage on my forehead it was hard to tell if it was the bandage or the muscles/nerves causing the droop but I guess now it was the reaction of the nerve.
Thanks...Mil

[LizAN]

"What you came out with, you end up with" translates to - if your face was fine when you first came out of the OR, it will be fine again, eventually.

I remember someone in the ICU putting a mirror up to my face and seeing that it was quite droopy.  I'd have been terribly scared and upset, but I was too doped up to care at that point.

I have not noticed that my lashes are thinner on the affected side.  I have been having some bouts of dry eye lately.  I'm guessing it is the dry winter air.  They didn't actually say they stretched my nerve, they said they "irritated" it.  I think Dr. Schwartz was disappointed.  He had 80 patients in a row leading up to my surgery who had no facial nerve impact at all.  At least that's how I remember what he said.  That whole time period is a bit blurry now.  It impressed me that he cared that much about the results of his work and that his record was that good.

I got off the steroids a day or so after I got home, but it was too soon.  My face didn't get much worse, but I got a massive headache.  It was so bad and persistent that Dr. Slattery recommended I go to the ER to get a CT scan and a lumbar punch (OUCH!!!) to make sure I didn't have a CSF leak or meningitis. The CT scan was normal, so he put me back on a short round of steroids and the headaches stopped.  That was a very scary time, as I didn't know whether I was going to end up having chronic, debilitating headaches.  Even after five months, my head does still hurt a bit around the incision, and I do still get all-over headaches, but they are so mild I don't even need to take anything for them.

Millie, how long since your surgery?  If it says in your sig, I can't tell as none of the sigs show in Post Reply mode.

Liz

[millie]

Liz, my surgery was October 17th translab at NYU with Doctors Roland and Golfinos.  They said my facial motion would come back, and it has gotten better.  The last couple days, I felt a spasm and a twitch in my upper left lip and in my lower left cheek.  My eye looks better but it still needs drops and I wolud never put makeup on it-not yet.
Because it is the holiday, I have to go the the store once in a while, but my husband drives and it seems like an effort to be in a store-all the lights, people...I guess it will take a while for our stamina to rebuild.
As for the headches, I have not had bad ones, but they had told me in the hospital extra strength tylenol shoild do it for me.  Right now I'm doing Advil cold and sinus because I seem to have something of that nature going on.
We are still blessed compared to the innocents in Connecticut.  We remember them all in prayer.

[LizAN]

Yes, Millie, we are blessed.

I remember feeling completely overwhelmed in stores in the beginning.  Too much stimulation!  It gets easier.  I still have some bad days but the overall trend is definitely toward improvement.

I am doing most of my shopping online and only going to small stores this year.  Can't take the crowds.  Maybe next year, but it's not that important to me.  I'm happy to have survived this ordeal and to be moving on with my life.

Keep us posted, Millie.  You, too, slab!

Happy Holidays!

Liz

[chance1212]

My eye lashes on both eyes seems thinner, but more so on the AN side. I also lost hair the first couple of weeks. I didn't have any crazy dreams. I have notices at a month post-op that I am having headaches. They're not really bad and may be from just doint too much stuff.

[millie]

I think the headaches could very well be due to a need for brain rest. Didn't we read somewhere the brain is working hard to rewire and reroute?  On leaving the hospital I was told extra strength tylenol could be taken for headaches- however,I really have never had  headaches from the surgery. Hope you feel better, Chances...

[Slab]

Just to keep my story updated.....

Follow up appt. with Chen and Aziz yesterday, no issues to report. They were both still happy with my progress. The left side of my face is down to a 3 or 4 on the House-Brackman scale (it went from a 1 post-op to a 6 the week after surgery) and they both were confident it would soon be a 1 or 2. The incision site is healing nicely, my balance is fine. Only issue other than the facial nerve still recovering is deafness on the left side (which was going to be automatic with translab). Dr. Chen asked if I had questions about hearing aids and presented my options but since it doesn't really bother me at this point, I'm going to put that on the back burner. I'm scheduled to go back in 6 months with a new MRI and assuming the new MRI shows the tumor to be gone, I won't need another for 5 years.

My words of advice would be- do your homework so that you can understand what the docs are saying, talk to several doctor teams, go with the ones you are most comfortable with after doing that homework, and then stop worrying about it since it's out of your hands. This forum is a great resource, but it likely has a higher percentage of people that had issues than the actual nationwide numbers (afterall, those without issues don't scour the internet looking for answers....) So don't get too stressed out by all the post-op horror stories. Chances are your surgery will go fine and you'll shortly be moving on with your life.

Thanks to everyone on here for the help and encouragement!

[go4sherri]

Slab, thanks for your wise words. You are quite right, at this point it's out of my hands and chances are everything will be just fine.
Wonderful insight.

[Slab]

In case it's helpful to anyone and to continue the story....

It's now almost 3 months post-op. leading a normal life other than SSD in left ear, scar behind ear and some facial weakness still. I think I'm still a bit more tired than pre-surgery and have noticed that every couple weeks I will have a 3 or 4 day spell of being exhausted followed by improved facial function. I'm assuming this is the body healing. Those days I take naps and go to bed early rather than push it. Other than that, no complaints.

[Slab]

A final followup post. 1 year ago today I had my surgery. Other than the loss of hearing in my left ear and the left side of my face feeling slightly different, I have no side effects. At my six month MRI/followup the doctors patted themselves on the back and said "see you in 5 years". I have no complaints. Water skied this past summer about 6 months post op, have done lots of work around the house and played with the kids. I don't anticipate doing anything about my deafness in one ear- "I'm married with 2 kids under 4, I can make good use of a deaf ear". Anyway, just wanted to complete my story so that it can be added to the success stories.

[clere]

Yeah!! Thanks for the update, very encouraging.  I am scheduled for surgery January 16, 2014.  Love to hear the success stories.