Author Topic: Under the Knife - Six Day and Counting  (Read 4656 times)

darrenpalmet

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Under the Knife - Six Day and Counting
« on: April 01, 2015, 01:29:56 am »
My story: after living in New York my whole life (almost 44 years), my family and I decided to move to Sydney, Australia in Jan. 2015.  I quit my job in New York in Dec. and was looking forward to the move and a leisurely job search in January while my wife paid the bills.  We have three children who keep us busy, and my job in New York was so crazy, I never had time to see a doctor or dentist.  After months of unexplained hearing issues on the left side, I decided in mid-December that I had the time, so I might as well get this pesky hearing issue checked out.  Here is the crazy thing -- I work in brand management, and one of the products I managed at the time was Debrox, an at-home ear wax removal brand.  For months before I saw the doctor, I would kid with work colleagues that I was having trouble hearing because I hadn't tried my own product yet.  And so it goes... 2cm tumor diagnosed on the left side.  Beyond the hearing loss and tinnitus, I have had no facial numbness, headaches or balance issues whatsoever. 

I consulted with two surgical teams: Roland/Golfinos from NYU, and Selesnick/Gutin from Memorial Sloan Kettering/Weill-Cornell.  The NYU team recommended translab.  Their rationale was that my hearing was pretty well shot anyway, and translab is a lower-risk procedure vs. retrosigmoid that will allow them a better chance at removing the entire tumor.  The MSKCC team recommended retrosigmoid.  They disagreed with the NYU team on inherent risk of complication of retro vs. trans, that retro offers just as high a likelihood of complete tumor resection, and there is an outside chance my hearing can be saved (though they were very quick to say that I should expect SSD when I wake up from surgery).  Both teams do a lot of these procedures and are considered top of their field.  I went with the MSKCC team because I want to have the possibility, however small, of preserving some hearing; despite the lousy hearing test numbers, I still consider my hearing "serviceable" (e.g. can have a mobile phone convo on that side). [Side note: I'm still surprised how much disagreement there is among these doctors on course of treatment, potential outcomes... though perhaps this is expected for a relatively rare disease with low sample sizes in which to draw conclusions.]

I was fortunate enough to find a great job right away in Sydney, and the family has adjusted well.  Now I fly back on Saturday for surgery.  I had plans to really "train" for this surgery -- get extra sleep before, get exercise, keep a positive attitude.  I haven't had a lot of time to get extra exercise, but I'm in good physical condition, so not concerned there.  I've tried to get extra rest, but the pre-op anxiety keeps me awake more times than not.  The people at my new job have been wonderful.  I've kept the timetable for return at 4-6 weeks.  I'm in excellent health otherwise, but I know recovery can take a long time, and there is no possible way to predict how my body will respond. I know there is the possibility that I could be in for many months of recovery, and there are no guarantees.

Anyway, I don't have a question, per se.  It feels good to write this and have those empathetic to my issue read it.  It's been equal parts helpful, inspiring and scary to read some of these posts.  I am gratified in knowing my friends and family have been instrumental in getting me here, and will continue to support me over the coming months.  I am planning to post once I'm on the other side of the operation to let you all know how it goes.  I'm also open to any last-minute advice!
44yo male diagnosed 1/9/15
2cm left-side touching brainstem
Pre-treat: Constant low-level tinnitus, no facial/balance issues, serviceable hearing (PTA=28.3; SD=52%)
Retrosig with Selesnick/Gutin at MSKCC on 4/7/15
Post: Facial nerve perfect, retained hearing (test results TBD). Great results so far!

Jimquoctran

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Re: Under the Knife - Six Day and Counting
« Reply #1 on: April 04, 2015, 12:38:22 pm »
Hi Darren,

I hope your operation went well, and hope that you have a speedy recovery. 

I wanted to reply to your post, because I've had a similar time line of events,i.e. moving away from home for a new job, setting up an ENT appointment that I've been procrastinating to to, and the tumor diagnosis...  Things just happened so fast. 

October 20 2014- started new job in NYC area
January 30 - ENT visit
February 10 - MRI order
February 11 - AN diagnosis
March 24 2015 - Operation! 

I too just underwent the resection and am on my 2nd week post OP after undergoing the resection with the MSKCC team of Drs. Selesnick / Gutin.  Suffice to say, I think my recovery has been surprisingly good considering my balance nerve was cut.  However, although the Dr's indicated that I will most likely lose my left side hearing completely due to the location/size of the tumor, my functional hearing that I had pre-op is still intact and functional.   

I was in the hospital from March 24 thru March 29.  They kept me there for further monitoring because of the extreme nausea I was suffering from, and the "incoherent" behavior I was experiencing (I thought I was fine :) ). 

The 1st week was very tough for me, as the nausea kept on coming back, preventing me from doing much sitting or snail pace walking.  I would say a few days later, the nausea subsided, but I started to develop other complications from the general anesthesia effects (no BM's, constipation, etc.) which made the recovery process that much more painful.  My GI had to be somewhat evacuated, but I understand this is one of those things no one told you about ahead of time!!  Let me know if you need help with this as I can share with you what issues I was having and ways around it.

Once I was home, it was more relaxing since I wasn't tied to a hospital bed in an uncomfortable position.  I think being around family/friends has made it that much more easy to adjust to your surroundings.  The worse part of the hospital stay was having to wake up (just as soon as you fell asleep) to get your vitals tested and take meds.  Since my hospital stay was for 5 nights, it seemed long! 

Again, during my first 2 weeks, I'm still taking it very slowly with the expectation that during my 1st follow-up visit on April 9th, my sutures will be removed, and I hope that I can start to do other things besides walking around the house. I would tell you to take your time as there is really no reason to over exert yourself during 1st couple of weeks post-OP.  I feel that when I start to get confident in my abilities, my left side starts to get a little uncomfortable and irritated, and then I back off a bit.  I have young children, and have been able to avoid picking them up!  I would sit on floor with them, while being extremely sensitive to any swinging arms/hands that might want to poke my incision area, as it happened already! 

After being discharged, they provided me with a walker but they were adamant that I wouldn't use it.  I wanted one anyway just to be safe, but at the end, the PT team was right.  I didn't need it and don't expect to use it, other than maybe to keep at my bed-side in case I need something to grasp when standing up in the middle of the night.  After all, the balance issues becomes more of a nuisance in the dark.  Fortunately, our hallways are short/narrow and it naturally provides we with some structural guides to follow with my hands. 

I'm starting to turn my head more confidently as I slowly walk from one point to another with minimal issues.  The bending down to pick up something seems to need practice, and I avoid doing those movements as much as possible.  My head turning is still very slow.  Even when I try to pick up speed, something inside my head feels like its weighing it down and causing some viscous friction of some sort. 

The showering/bathing has been a lot better from 3 days ago. I have a shower chair that I've been sitting on which has been extremely helpful.  I can just sit there with my hands on the shower walls.  I feel that if I don't put my hands against the walls, I have some sensation to lose balance.  I think the toughest part was having the showers wet your head, since it felt like my head was being poked at hundreds time an hour.  That caused some balance/headaches a bit, so I stopped doing that for a few days.  Now, I only have my wife help me shampoo my head especially around the incision.  After 5 days of practice, I can safely bathe myself now (except for shampooing). 

Starting the week of April 6th, 2015, I will start a rehab program with an NYC clinic that specializes in Vestibular balance issues.  I'm really looking forward to that. So far, I've been trying to walk side ways while rotating which foot is in front, as well as walking forward with each feet being in front of the other (while rotating).  I've been doing it very slow and methodically just to do something with my coordination.  I've also been practicing going up and down the stairs at a snails pace. 

Prior to surgery, I rode my bike now and then, ran now and then, and most recently joined a Cross-Fit program.  I was running on tread mill leading up to the surgery.  The main reason for keeping up with some exercise was preparing for the general anesthesia.  The Dr's indicated that my balance nerve was already compromised given the 2.6Cm size, and that my right side has been stepping in to help compensate the loss of the left.  Maybe that is true, but I'm hopeful I can ride a bike in a few months with my kids again. :)  Just to be clear, I'm far from being a fit guy.  I just tried to eat healthy and picked up some exercising prior to surgery.  (only had about a month to prepare my body). 

Well, I'm looking forward to hearing from you, and wish you well during the recovery period.

Take care,

Jim
2.6 cm left side AN.  Diagnosed on Feb 11, 2015. Translab approach perf'med on Mar 24, 2015 at Memorial Sloan Kettering Cancer Center in New York City by Drs. Samuel Selesnick and Philip Gutin.  95% Resection, with pre-surgery hearing intact at 60%.  Bal. nerve cut

jaylogs

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Re: Under the Knife - Six Day and Counting
« Reply #2 on: April 08, 2015, 11:39:47 am »
Hey Darren, welcome to the forum!! I know how it feels to just get things out there in writing, and we truly appreciate this as it will undoubtedly help those others who will come in behind you for the very first time and be able to see what you went through yourself.  If you have any questions before your surgery (do a search and find what people bring with them to their surgeries, it'll help!) and afterwards as you recover.  There's no finite timeline to the recovery process with these things so if it seems like it's going longer than expected, that's normal! :)  Good luck and let us know how it goes!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

darrenpalmet

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Re: Under the Knife - Six Day and Counting
« Reply #3 on: April 12, 2015, 05:29:19 am »
All,

It's been almost five days since the surgery, and I wanted to provide an update.  I've been home since Friday in rest/recuperation mode, and have good news to share.  First, thanks to Jim, Jay, Clare and others for your thoughtful replies.  I've drawn much support from this forum, and will continue to do so.

The almost 8-hour retrosigmoid procedure under Gutin and Selesnick went extremely well.  I was under general anesthesia by 7:30 AM, and vaguely remember waking up in recovery sometime after 2:30 or 3:00 PM.  Selesnick was very pleased with the post-surgical MRI.  He estimated that they removed about 95% of the tumor.  Their general tendency is to leave a little if they believe the facial nerve will be compromised in any way.  And the good news on that front -- I have little to no facial deficit.  I can feel a very slight numbness on the left side of my tongue, but you can imagine my smile that afternoon took up half the room.  I'm highly confident I'll get back to where I was.

I was also able to hear right after the operation, although the level was about half of what I had before.  And then the swelling and fluid build-up rushed in, knocking almost all the hearing out.  I guess I should have expected this, but I was unprepared for how severe it would be.  It's difficult to ascertain what my hearing will be once things calm down, but I am grateful for whatever I have left.  As the swelling recedes, I seem to get more hearing back.  I can hear a dial-tone this morning, and it seems to be a bit louder than yesterday.  I'm hoping this is a good sign for the long-term.

I was prepared for the other side effects, including some nausea that first day, and the ever-present balance issues.  I walked with my wife two blocks to a park yesterday (morbidly slow, with frequent breaks) and considered that a major victory.  Again, I know this will all only continue to improve in the coming weeks.  I will start vestibular therapy soon enough.

Regarding pain management, I had a bit of percocet in the hospital, and since then have tried to manage with Tylenol (weening myself off that slowly, given what my liver has been through).  As I type this now, the swelling and fluid build-up are severe but manageable.  It's true what others say -- every day gets a bit better. 

One side effect I was not prepared for was the insomnia.  Given the location of the incision, it's been difficult to find a comfortable, all-night sleeping position.  I have also read that the dexamethasone (steroid) medication they've prescribed for inflammation can also cause insomnia.  Only three hours sleep last night -- not good for someone trying to recover from a brain operation.  And I have tried to catch up with naps during the day.  Any thoughts or suggestions on dealing with insomnia?

In all, great results so far.  I can't say enough wonderful things about Gutin/Selesnick and MSKCC.  Every caregiver involved was caring, compassionate and completely on top of everything.  I will keep you all posted in the coming weeks, and thanks again for your support.
44yo male diagnosed 1/9/15
2cm left-side touching brainstem
Pre-treat: Constant low-level tinnitus, no facial/balance issues, serviceable hearing (PTA=28.3; SD=52%)
Retrosig with Selesnick/Gutin at MSKCC on 4/7/15
Post: Facial nerve perfect, retained hearing (test results TBD). Great results so far!

jaylogs

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Re: Under the Knife - Six Day and Counting
« Reply #4 on: April 12, 2015, 08:37:37 pm »
Hey there, and welcome to postie land! :)  Yeah, I do remember the sleepless nights.  Once you get off the steroids and everything else settles down you should be able to get back into the swing of things.  So just grab a nap whenever you feel you need to.  So get your rest, listen to your body and take care! Congrats again!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

darrenpalmet

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Re: Under the Knife - Six Day and Counting
« Reply #5 on: April 23, 2015, 07:40:56 pm »
All,

An update for those following along... I took what I thought would be my last does of Decadron (steroid) this past Sunday morning.  After walking 7-9 miles every day last week and driving a short distance Sunday, I had every reason to believe my accelerated recovery would continue.

And then Monday hit.  After almost two weeks with no complications, I spent most of the day with a debilitating headache and a lot of pressure and swelling.  I happened to have a follow-up with the neurosurgeon that afternoon.  He put me right back on Decadron, which I will now be on through May 7.  Since Monday, I've mostly kept the pain at bay with Tylenol, Tramadol and Nyquil at night for a cough I've developed (it's fun to cough and sneeze after brain surgery).  The doctor thinks I have aseptic meningitis, but that it will run its course in a couple of weeks. 

I'm concerned about chronic headaches in the long-term, but again, just looking to take it one day at at a time for now.  Will keep you all posted.

Darren
44yo male diagnosed 1/9/15
2cm left-side touching brainstem
Pre-treat: Constant low-level tinnitus, no facial/balance issues, serviceable hearing (PTA=28.3; SD=52%)
Retrosig with Selesnick/Gutin at MSKCC on 4/7/15
Post: Facial nerve perfect, retained hearing (test results TBD). Great results so far!

CHD63

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Re: Under the Knife - Six Day and Counting
« Reply #6 on: April 24, 2015, 05:11:45 am »
Hi Darren .....

So sorry for this bit of a set-back.  Glad you are back on the steroids to help with the swelling.

I might add that most of our recoveries were not a steady progress upward, but rather a series of great days, followed by a really rotten day(s), followed by blah days, followed by great days, etc.  It really is important to listen to your body and if you need to rest, do not feel guilty about resting and taking that nap.

Many prayers for an end to the headaches and quick recovery from this set-back .....

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

jaylogs

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Re: Under the Knife - Six Day and Counting
« Reply #7 on: April 24, 2015, 05:51:58 pm »
Hey Darren!  Sorry to hear about the setback but as we all have said, everyone's recovery is unique!  Unfortunately these things don't follow the script that we laid out for it (lol).  But Clarice said it best, just hang in there and hope things will get better.  Take care and keep us updated!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston