Author Topic: Post Op Assistance  (Read 4650 times)

Pamm659

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Post Op Assistance
« on: November 27, 2013, 09:20:31 pm »
I was diagnosed with a left 1.4 cm AN last May after years of tinnitus and one day, sudden deafness.  Fortunately, I got in to see a doctor right away,  had a hearing test which showed I have lost 87% of hearing, was referred to and saw Kaiser San Diego doctors last June. I have spent MANY hours here and on You Tube learning all that I could about Acoustic Neuromas. Since starting out on my AN education, the emotional rollercoaster is still overwhelming but I realize it's all part of the process. Coming to terms with many different things at the same time is necessary to make critical decisions that will affect me for the rest of my life.

Currently, I am Watch and Wait with constant tinnitus/clicking, some days I have horrible fatigue, some days I have headaches and feel isolated in group conversations due to hearing loss. I have had a Vestibular Evaluation which shows I have some minor deficits (thankfully) and occasionally I do have some dizziness but not much at this time. The left side of my face has a funny sensation with frequent twitching of left lower eye lid, left side of my nose and below my left lower lip/chin area although, but not at the same time. The new symptom I have, which may be the AN or not, is pain behind my left ear/lower skull mostly an achy, burning feeling.

I have not scheduled surgery yet as my tumor is small and my second MRI will be in May 2014. My husband is a teacher and will be off for the summer but some days, I don't want to wait until next June and then when I really think about it, I don't want to do surgery that soon either. I know most of you know what I am talking about. It's a constant conflict. I will have Translab as there is no chance of saving my hearing.

Last July, I attended the ANA National Symposium and was exactly where I needed to be at exactly the right time in my AN Journey. The House doctors have all assured me that the specialists at Kaiser San Diego are all very competent and said I will be in good hands. House and San Diego doctors all recommend Translab approach will be the best for me due to not being able to salvage my hearing.

I know my complications and outcomes cannot be predicted however, I am interested in hearing from everyone about their time in the weeks after surgery, when could you be left safely alone and what would you change if you had to do it over. How long before you were able to get around without being dizzy, tired and ready to get back to work, drive and facing your new normal?

Thank You in advance for your time and advice.

Jim Scott

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Re: Post Op Assistance
« Reply #1 on: November 28, 2013, 12:10:52 pm »
Hi, Pamela ~

You appear to have 'done your homework' and are well-prepared for eventual AN surgery.  Yes, we can all understand your conflict with 'put it off' and 'get it over with'.  I can only trust that once you have a surgery date you'll be able to surmount your very natural concerns about the outcome of the surgery.

As your research has probably made clear, outcomes range from somewhere between splendid and terrible with the average being that there is always something to deal with but time does help heal and there are procedures and various other ways of alleviating whatever post-op issues may arise - if any.

In my case, at age 63 I was diagnosed with a large 4.5 cm AN and the neurosurgeon I consulted (with 30 years of AN removal experience) recommended a 'debulking' of the tumor, effectively peeling off layers to render it vulnerable to the effects of the radiation which would come 90 days later.  While debulking the AN, he also severed it's blood supply, further weakening the tumor's chance of survival.  The 9-hour surgery went as planned with no complications. 

Immediately upon awakening from the anesthesia, I regained my sense of taste, which I had lost months earlier due to the tumor's growth.  I was in ICU for four days only because there were no 'regular' rooms available.  I slept most of the first 36 hours post-op, was sitting in a recliner by Day Three and walking the halls - a lot - by Day Four.  By Day Five I was bored and anxious to go home.  I passed a balance test administered by the hospital PT nurse and was discharged on the morning of my fifth day in the hospital.

I was a bit weak and dozed a lot at home but that passed within about five days and I began taking walks (with my wife) in a nearby park (it was early summer in New England and very pleasant weather).  I trained myself to regain my balance and was mostly successful although even today, seven years later, my balance is not 100% - but it is quite adequate. 

I was blessed not to suffer any real post-op complications other than a tiny 'numb' spot on the side of my tongue that is not a problem and occasional 'dry eye' on the 'AN side' (my left) that I can usually blink away when it occurs.

Ninty days post-op I underwent 26 FSR sessions to destroy the remaining tumor's ability to re-grow.  The sessions were uneventful and subsequent MRI scans indicated they were successful and the tumor showed necrosis.  Today, I feel great, am doing well and pleased to offer my support and wishes that your AN surgery be as successful and uncomplicated as mine.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Pamm659

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Re: Post Op Assistance
« Reply #2 on: November 28, 2013, 08:18:32 pm »
Thank You, Jim. Your words of encouragement and support means so much. As the New Year approaches, I find myself PLANNING things like I have never planned before. I will seek more advice here on the ANA site as summer nears and I have to turn a face the Alien in my head.

TexasSprinter

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Re: Post Op Assistance
« Reply #3 on: November 28, 2013, 10:47:23 pm »
Hi Pamela.  Sorry to hear about your diagnosis--you will find the AN Forum great resource to help you through your journey.  I had AN surgery (middle fossa) last December 20.  I lost my right-side hearing during the surgery and the balance nerve was sacrificed.  The first few days were not a lot of fun (nausea, balance issues, facial paralysis for 12 hours but amazingly "snapped back" to normal).  I was walking (slowly) without assistance after about 2 days.  It took me about 3 weeks before I felt comfortable driving because even though my balance was good enough to walk during weeks 1-3, I felt "weird" when walking and looking at the horizon, or moving my head from left to right.  Needed a chair/stool in the shower for a few weeks because of wobbliness (especially when eyes closed).  Back to work after about a month, starting with partial days.  I've struggled with single-sided deafness--still seems strange even after 1 year.  My balance felt pretty normal after about 2 months.  Unfortunately, they only got a small bit of the tumor during surgery because of unfavorable anatomy (splayed facial nerve impeded access to tumor given the angle of approach).  I tried watch and wait for the last year (tumor hasn't grown since first surgery) but constantly thinking about it drove me bananas so I'm scheduled for trans-lab on Dec. 5.  I can't say I would have done anything differently, except perhaps that I took a one-day business trip (by plane) shortly after I got back to work.  My body wasn't ready for that strain and I felt pretty crappy when I got back.  Take it easy for 1-2 months.  Best of luck to you.  Your decision will be the right one no matter what you choose.

Pamm659

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Re: Post Op Assistance
« Reply #4 on: November 29, 2013, 05:26:08 pm »
TexasSprinter,

Thank You for your advice. I know there is a good chance of facial paralysis (temporary or permanent) and balance issues post op and am psyching myself up for it. My husband and I are planning to stay in our RV in San Diego so I can be near the hospital several days post op. We live almost 3 hours away and we feel that is important just in case. I do Home Health Physical Therapy and will FIRMLY request a few Nursing Home Health visits to our RV once discharged from the hospital. That way, I will feel more comfortable as my husband is not a Medical Professional and may miss some problems.

Driving will be a huge component to my returning to work after surgery. My employer was having me drive 1 1/2 hours ONE WAY to treat patients in a VERY remote areas and I found I was having severe eye fatigue and headaches rendering me non-functional once home. In order for me to not have to go, my employer requested a note from my MD. Thankfully, I was able to obtain one from my Neurosurgeon limiting my driving to local areas only. That still includes a 40 mile radius. I plan to keep working as long as I can but I also made a promise to myself that when working, I need  to pull over in my car, take a short rest and that seems to help. Naps in the evening are just a "New Normal" and my husband totally understands.

Having to face this was not in our plan but I know, it could be worse. I treat patients with more debilitating issues and sometimes, I feel embarrassed complaining about my symptoms because they are insignificant when I compare them to someone with MS, ALS or a person who just suffered a huge stroke.  I'll take whatever happens to me and deal with it as it comes and work hard to come out on the other side of this as best I can. The hard part is not knowing what the other side looks like and it is very unsettling for me as I am sure everyone feels that.

You and your family will be in my thoughts next week as you venture off into another surgery. I hope you wake up with a BIG even smile on your face and you can dance your way to the bathroom without any help.  Please post when you can and let us know how you are.

Pamm

hruss

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Re: Post Op Assistance
« Reply #5 on: November 29, 2013, 11:55:16 pm »
Hi Pamela,

It is so good that you spend so much time to educate yourself on the topic of ANs. It makes you feel more comfortable with the decisions you take, I hope (at least this the way I feel).

Taking plenty of walks as soon as you are allowed to stand up from your hospital bed is crucial. That will help you with the spatial orientation and balance. I still find it difficult to drive a car, esp at night, due to balance issues - checking my blind spots on the right and left and keeping the car in a straight line is challenging. Mind you, I took my driver's license after my surgeries. In moments like this I understand why it is useful to get a driver's license at the age of 16 and not at 28. I wish I knew how to drive before my balance issues so I could have years of practice behind the wheel and adjust easily to the post surgery new world.

Best,
Hrissy

 
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

TexasSprinter

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Re: Post Op Assistance
« Reply #6 on: December 09, 2013, 11:21:01 am »
Hi Pamela. Surgery on Thursday lasted 8 hours but went very well. No facial nerve damage or any weakness at this point. They were able to get most all of the tumor this time. They left a tiny bit of tumor in because it was stuck to or near scar tissue from surgery last December and they didn't want to risk facial nerve. I'm very thankful for my excellent surgeons and for the caring nurses and all staff here at UTSW in Dallas. Might go home today or tomorrow. Please keep us posted on your situation.

Pamm659

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Re: Post Op Assistance
« Reply #7 on: December 15, 2013, 01:03:29 pm »
TexasSprinter,

Congrats on the outcome of surgery and may you continue on a speedy recovery. It must feel good to have it all behind you now and moving forward will ease emotional struggle we all have working up to surgery or treatment. 

I started back to the gym, training with a trainer 2 times a week and will work out on my own the other days. I feel empowered with determination to kick my AN's A$$ instead of it kicking mine. My first MRI was May 2013 and I will say these past  7 months have been more difficult than I'd like to admit but it's time to do all I can to improve my outcomes.

Happy Holidays and may this Season bring you and your family Peace of mind to know you came out on the other side intact and ready for life.

Pamm