Author Topic: How to approach the retrosigmoid elephant? a single woman's approach  (Read 4298 times)

Enri

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I was diagnosed with a 1.5 cm x 0.8 cm AN in the right ear October 2015.  For whatever reason, I could not get comfortable with the radiation options and decided for surgery which I had November 2nd 2016.  As a single woman of almost 60, the prospect of facing surgery seemed at times scary.  But once I made my decision, I decided to not look back and treat it as a project. These are some of the things that I found useful.

Decide who you want at the hospital and for support after surgery.   This was one of my earliest decisions.  Initially I thought a sibling for hospital time and a friend for help after surgery.  But I was lucky that a good friend offered 5 weeks of her time and was able to support me through the hospital stay for surgery and a few weeks after.  For me this was a good choice as my friend was able to provide the type of support I needed that my sibling would probably would not begin to know.

Make sure that you have any necessary legal papers.  I had my lawyer prepare the papers needed to allow my friend to make medical decisions for me, get access to medical information, etc.  I also had a plan and papers for who could make financial decisions for me in case on incapacity.  We took two sets of legal papers with us.  One we gave to the hospital and the other my friend carried in case needed.

Figure out how your work will be handled while on medical leave.  I kept my employer updated with my planned surgery date so that they could get someone to cover my work while I was on medical leave.  As I was planning to retire in March, what made more sense was for me to transfer my work to the new person.  It has been great to be on medical leave and not be bothered by work-related questions.

Find out what clearances will be needed for surgery and what will be required to obtain those clearances.  In my case, I needed cardiac clearance.  So I made sure to visit with the cardiologist early to find out what will be needed to get the clearance and schedule the tests that he needed done to assess the condition.   You need to be mindful of the timing that they require.  It cannot be too early and it cannot be too late.  So best to find out what is required and make sure that they fit in the appropriate slot in your timeline.

Prepare documents in case of death or incapacity.  Besides the legal documents, I had prepared a binder with all important documents as well as key information, like utilities, etc.  I had also prepared a document with instructions of what to do in case of death and what do to in case I became incapacitated.  This included steps like who to contact at my employer, who to notify among friends and family, how to keep my house going, etc.  It was not needed but I was glad I did it just in case.

Consider how you will handle travel to and from hospital.  I opted to reserve a room in a hotel right across the hospital to avoid having my friend face the Houston traffic.  This worked well and was much appreciated. 

Consider how you will handle the dog or any pets.  At the end opted to keep the dog at home rather than the kennel and have the dog walker come for overnight stays while I was at the hospital.  After I was released, I had the dog walker come twice a day to take care of the dog. 
Give food, change water, etc.  Now that my friend is gone, she also helps me with small items, like taking garbage out or lifting cases of Coke Zero. 

Consider if there are any health related issues that you  may want to have addressed before surgery.  In my case, I had a crown that had a gap, resulting in food accumulation in the gap.  My daily dental routine to prevent gum bleeding or pain from that, included not only flossing but also use of a water pic and a multistep procedure to clean the area.  I decided to eliminate the problem before surgery by having the crown redone. 

Do not forget your neighbors as potential sources of support.  My neighbors have been great in offering to pick up things for me if I needed it. 

Consider if there are any items in your house that you may want to address to make your life easier after surgery.  For me, I decided to have a plastic bench so I could shower sitting down and I had a company install grab bars in the shower and toilet area so that I could have them available if I needed them for balance.  Although I do not get dizzy after surgery, I like the bars and I use them on a regular basis.   You may not want to do too much until you know how your body will react post surgery.


Consider if there are any items that you may want to have home post surgery.  I made sure to have a small notebook, a thermometer and a wrist blood pressure monitor.  This allows me to take my temperature and blood pressure a few times per day.    My friend wanted to have a cheap baby monitor so that she could hear me if I called from my room at night.  After the first night, we decided that I walked fine even in the dark so we stop using it.   My usual pillows were foam based.  I found that after surgery I wanted a fluffy pillow with a low profile. 

For the days that I was wandering the cold halls of the hospital practicing walking, I found it useful to have a cape.  It provides warmth.  it covers some of the fashionable hospital gowns and with the lack of sleeves, it does not interfere with whatever you may be attached  to.

In any case, this was my approach in case it is helpful to anyone.
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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

leapyrtwins

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Re: How to approach the retrosigmoid elephant? a single woman's approach
« Reply #1 on: December 29, 2016, 11:23:12 am »
Thanks for sharing your story, Enri.

I, too, am a single-woman and my twins were almost 11 when I had my surgery.  I was 45 @ the time, and I opted for retrosigmoid.

I didn't go through half the things you did in the way of preparation, just made sure I had people in place to take care of my kids during my surgery and recovery.  I also had someone in place to help me while I recovered - especially until I was able to drive myself to work.

I had a great outcome - my only "issue" is SSD (single-sided deafness) which I've alleviated greatly with a BAHA.  I was back @ work half-days two weeks post op and full-time four weeks post op.

Ten years post op life is good - and it has been for a long time  :)

Best,

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Enri

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Re: How to approach the retrosigmoid elephant? a single woman's approach
« Reply #2 on: January 03, 2017, 02:04:06 pm »
I guess that having a timeline and things to do , kept me distracted from the fact that I was going to have surgery.  I had a complication on week 3 post-op but overall I call my surgery a success.
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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

JLR

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Re: How to approach the retrosigmoid elephant? a single woman's approach
« Reply #3 on: January 03, 2017, 02:32:38 pm »
Hi you are very organized. I had surgery November 1, 2016. It was a radiated large tumor. Cyberknife worked for only 5 years.  I was in hosp 7 weeks had rehab. Continue with out patient PT. I can now walk but not perfectly. I have right sided facial paralysis and lost hearing in right ear. Also right eye is drooped and no blink. Under care of eye specialist. You were very lucky not to have any major complications. I could be worse so I'm grateful I'm ok.  Look forward to feeling better. I went into this surgery very confident and my doctors promised they would avoid the facial nerve which they did. I'm not a happy camper but am progresses slowly. All the best. Joan. Oh I'm also in my 60's.

Enri

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Re: How to approach the retrosigmoid elephant? a single woman's approach
« Reply #4 on: January 06, 2017, 03:12:21 pm »
Thanks for your note, Joan.   I do hope that things get better for you, even if progress may be a bit slower than what you would desire.  Sending you positive thoughts.  E.
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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