Author Topic: Just out of hospital - retrosigmoid in Houston  (Read 3924 times)

Enri

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Just out of hospital - retrosigmoid in Houston
« on: November 08, 2016, 02:21:00 pm »
Since I  was diagnosed with a right vestibular schawnomma, I found reading postings about the experiences of others useful.  Knowing always that we are all different and that in the AN world we are a universe to  ourselves.  So here is my story or at least part of it in case it is helpful to anyone.

Me:  Well I am two months short of being 60 years old and I know describe myself as a fat ugly couch potato latina and proud of it.   I have some of the usual health risks of being overweight:  high cholesterol, high blood pressure, slow thyroid.. of course controlled by meds.  I am not into running marathons.   Walking a mile in a day is probably more like it.

Diagnosis:  I was diagnosed October 2015 with a 1.5cm x 0.8 cm AN in right side.  I went through the usual research of options.  For some reason, I could not get comfortable with the radiation options and tended more to favor the surgical options.  I had some hearing loss in the right side and tinnitus.  No real dizziness, but a bit unstable coming downstairs.  From diagnosis to surgery, there was a bit more hearing loss but no major change in symptoms.  No significant growth of the tumor either.  But as I was not getting any younger I decided to act rather than wait. 

Doctors:  I chose Dr. Britz, neurosurgeon, a Methodist Hospital Houston Medical Center and Dr. Vrabec, Otolaryngology, at Baylor College of Medicine.  And I totally adore them.  Wow.  I think I have elevated them to magician status.

Approach:  Because I still had useful hearing the affected ear and I wanted if possible to preserve hearing, we opted for a retrosigmoid approach.

Worries going in:  I had had an outpatient procedure for some other condition, cut short in 2013, due to some PVCs, (premature ventricular contractions).  So one of my worries in considering surgery was is my heart healthy enough for this party.  Rather than to go back to the cardiologist that had seen me in 2013, I asked Dr Vrabec for a recommendation at Methodist.  He recommended Dr. Buergler and I had a full battery of tests done to make sure that I could be clear for surgery.  EKG, stress test, echo..etc  and the reassurance that if something were to happen my cardiologist was just in the same place. 

Surgery was wednesday November 2nd and it lasted approximately 6 hours.  Connie, the tumor, has now been evicted from my head and is gone.  I woke in recovery room.  Shivering but with all my marbles, alert, knew where I was etc.  Great smile when doctors told me that there had been no impact to facial nerve.  Face was functioning as expected, eyes opening and closing as expected.  We have not retested hearing yet but to me it seems that I have preserved whatever hearing I had in the right ear.  I do not think it is better or worst.  Tinnitus still there but not better or worst.

I spent Wed night in the thoracic ICU as there was no room at the neuro ICU.  Lumbar drain was on.  I had a some pain that night and got the shot of morphine.

thursday morning I was awake.  head felt heavy.   I did head moving exercises.  I was able to retain the liquid diet.  I never knew I could like cherry ice.  Biggest accomplishment was to sit on a chair for a while.  Pain was manageable with Tylenol 3.  threw up a bit that evening.

Friday morning Physical therapy came to try to get me to walk but my blood pressure kept spiking up.  Pain was still controlled with Tylenol 3.  I was not happy with my blood pressure all of that day and night.  In the middle of the night, the monitor walk me and I raised the head rest a bit and ended up with the worst headache I had had up to that point.  some morphine brought it down and I went back to sleep.

Saturday morning I was comfortable but not doing much.  on solid food but I chose to eat only the tasteless stuff.  About noon they finally took the lumbar drain off and my blood pressure and headache started to get better.

They moved me out of ICU and into the main floor on saturday late afternoon.  I had two Tylenol 3 that night but have been off pain meds since then. 

My doctors were ready to release me sunday but I asked to wait until monday.  I felt that i had not done yet enough walking to feel comfortable that I could manage walking and control headaches and my blood pressure.  Doctors agreed.  I spent sunday walking down the aisles and getting comfortable.  by monday morning I was ready to get out of there and rock and roll. 

For someone that did not have major balance problems going in, I was worried about what kind of balance problems I would have after surgery.  Luckily from the moment I first sat up or got up, I have not had any episodes of head spinning.  I am able to stand and walk almost as before.  I have to be careful not to let my head get ahead of my body.  I have to careful not to turn suddenly or to suddenly lean forward but I otherwise can walk down the hallway without feeling that I am walking like a drunk or needing a rail.  I did not get dizzy during the one hour drive home either. 

Today life is great.  Although they gave me a prescription for Tylenol 3 for pain, I have not needed any not even plain-vanilla Tylenol.  I had no problem walking around my house last night even in dim light to go to the loo.  My blood pressure today is under control. 

I am taking it easy.  I have a friend helping me.  Napping as needed.

Life is great and I am thankful.





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Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz

ANSydney

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Re: Just out of hospital - retrosigmoid in Houston
« Reply #1 on: November 08, 2016, 04:31:57 pm »
Congratulations Enri. Sounds like the retrosigmoid surgery was successful and that you're back on your feet. I'd be interested in the hearing outcome. The worst is over ... relax.

stacey4574

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Re: Just out of hospital - retrosigmoid in Houston
« Reply #2 on: November 09, 2016, 01:33:01 pm »
Congratulations!!I am 8 weeks post op today and each day I have a bit more energy and am doing everything as before.
Keep taking it easy until your next DR follow up.
Be well and smooth recovery to you :)
2.5cm AN diagnosed 7-14-16
Currently meeting neurosurgeons to decide on surgery date

Enri

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Re: Just out of hospital - retrosigmoid in Houston
« Reply #3 on: November 11, 2016, 04:30:31 pm »
I find that I am not walking like a drunk as I had expected.  Instead I am walking like a mouse in a National Geographic show.  Stick my nose from behind the bushes, walk a few steps in a straight line, slow down, sniff, check surroundings and continue going.   During my first week home, I have been to the mall, a restaurant, the grocery store and the nail salon.  I am quite happy taking cues from the dog and inserting naps during the day. 
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Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz

mandihester

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Re: Just out of hospital - retrosigmoid in Houston
« Reply #4 on: November 13, 2016, 09:00:22 pm »
I had retrosig surgery on Oct 31 and just had my first outing today to the grocery store and it was awful for me.  I have such fullness in my tumor side and my hearing is greatly diminished although not completely deaf.  I do look like a drunk walking most of the time right now.  I am discouraged from my trip to the grocery store today.  :(
I am looking forward to Tuesday when I get my stitches out and can finally wash my hair though. 
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

Enri

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Re: Just out of hospital - retrosigmoid in Houston
« Reply #5 on: January 03, 2017, 02:21:40 pm »
Sorry for not replying earlier. 

On week 3 post-op I had a CSF leak from the stitch were the lumbar drain had been.  I went back to the hospital and upon testing they discovered that I also had a bit of meningitis.  So I was in the hospital for an additional 9 days with lumbar drain (not one of my favorite things to do) and IV antibiotics.  When I was released I still  had to administer IV antibiotics via PICC line for an additional 14 or so days. 

I definitely can relate to mandihester looking forward to get hair washed.  Each one of those things become like major milestones to be rejoiced:  wash full head, get rid of another IV line, get rid off glue from bandages, get rid off PICC line....

After my additional hospital stay, I thing the results are still the same as after surgery:  no headaches, no dizziness, no problems walking, no additional hearing loss.

I did have a hearing test on the affected side sometimes early december.  The test proved what I suspected.  hearing in the right ear was essentially the same as prior to the surgery.  So essentially about same hearing and same tinnitus.

I am going back to work this week.  I now can get through the day without napping, although I think the dog is going to miss its nap companion.
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Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz