Author Topic: SML (Scarlett's) updates  (Read 54541 times)

Rich56

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Re: SML (Scarlett's) updates
« Reply #135 on: April 02, 2009, 07:23:34 pm »
Nancy, Scarlett (who is taking a nap) didn't drive in Worcester.  I pulled over on the side of the highway, and she drove home from Worcester.

To answer a question you asked on Anissa's thread.  I think Scarlett is okay to leave alone now, she just has to be careful (I'm a worry wort), did I tell you we picked up a cane?  It's titanium in color, and just something for her to stablize herself should she get wonky headed, not to use continously.  I go back to work next week.

Thanks for the kind words :)

You will do fine next week, you've got the best, and of course the Magic ;D

Nancy, and Maureen, It's been a great 26 years of marriage (31 together).  Thanks ;D

Rich
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

Keri

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Re: SML (Scarlett's) updates
« Reply #136 on: April 02, 2009, 07:40:17 pm »
Hi,
I don't know how to make quotes in those little gray boxes, but I think the quote of the day would be Rich's when he said something along the lines of, "Maybe you can come up and run the Boston Marathon next year with your husband!" Very nice thought, Rich! However, I've run one marathon and it took me 5:20. I once checked what my qualifying time would need to be (for Boston) if I was 80 years old and it was like 4:30! I'm 48, so i have a ways to go before 80, but I don't think I'll ever have a qualifying time! That's ok; I just wanted to make it through a marathon standing and I did.
But that's one of the reasons I want to come up to see my hubby run - it took him 2 yrs to finally qualify for Boston (and 6 or so marathons - he always missed by a few minutes).

Then i want to go to the luncheon in Worcester; want to meet you all and meet Laura who is also running Boston.
I'm trying to work the details out here (I'm in the DC area). I think I have childcare arranged for my autistic daughter. I don't have to play piano in church sunday the 19th. If I could just drive from here to MA things would be easier, but there's no way - I'd be too tired.

So for all you Boston-ites (Jim, Nancy, Rich and Scarlett and anyone else) - I"m looking at flying into Providence (good southwest fare) so I can drive to Worcester. Spending night with a friend Sunday I think in Whitensville? (may come up Sat and stay in Worcester?); after marathon maybe drive to Logan and fly out of there back home. Now, I'm just a little concerned about the line 'You mean Scarlett drove in Worcester??" I don't love driving, esp post surgery. Will I go nuts driving up in your neck of the woods? DC is no piece of cake so I'm used to traffic and all that.

Sorry to hijack the Scarlett thread! I'd love to meet you all and hope this works out. I'm used to doing crazy things I just don't know if post surgery I SHOULD be doing crazy things. I think I'll be ok though. I will make a decision by tomorrow (friday).

Thank you,
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

Rich56

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Re: SML (Scarlett's) updates
« Reply #137 on: April 02, 2009, 08:51:57 pm »
Hi Keri,

The fact that you ran the half marathon makes you a winner in our eyes :) :) And that you did it being just under 2 months post-op is simply amazing.

We're sure your husband would love for you too watch him run the marathon, and it would be nice to meet you, but if your body is telling you this is too crazy, too soon, than so be it.  We would hate for something to happen to you because you pushed yourself too far.

Rich & Scarlett

   
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

NancyMc

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Re: SML (Scarlett's) updates
« Reply #138 on: April 03, 2009, 01:53:34 am »
Keri,
Driving in Worcester is not bad.  I just can't imagine doing highways two weeks post-op.  I'll be sticking to the country roads of NH for as long as possible.
I hope you can make it.  Flying out of Logan on Marathon Monday, now that's a challenge, brain surgery or not!
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Keri

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Re: SML (Scarlett's) updates
« Reply #139 on: April 03, 2009, 08:49:40 am »
Thank you, Rich, Scarlett and Nancy,
I'm still looking into the 'how i'd do it details' of planning this trip. Seems to be about as time consuming as researching an AN. I can't stay with my husband because he's staying with running buddies in Boston at a hotel near the finish (these are booked way in advance, as you might imagine). I don't know whether to stay out of town and go to one of those 'little towns' to watch the runners go by. When I get the final answer about my daughter's care (she's 19, but is autistic) I'll know more definitively if I can go. I'm learning that saying "Gee, I'll think I'll go watch the Boston Marathon" is about the equivalent of saying "It's New Year's eve; I think I'll head to Time Square!"

I do want to meet you all and having the luncheon one day and the marathon the next is just too coincidental to pass up!

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

Keri

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Re: SML (Scarlett's) updates
« Reply #140 on: April 03, 2009, 10:35:28 am »
Hi,
I get to meet you all at the luncheon! I got childcare, flying into Manchester, staying in Concord. Glad I own a GPS thing for my car. Going to try to park myself somewhere in Boston on Monday and cheer for my husband and Laura (allegro). I fly out 9:00pmish Monday night. Arrive home at midnight. After getting the kids off to school Tuesday I hope to SLEEEEP.

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

Rich56

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Re: SML (Scarlett's) updates
« Reply #141 on: April 03, 2009, 09:18:55 pm »
Hi Keri,

That's great news :)

Are you coming by yourself, and going to driving by yourself?

Rich & Scarlett
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

NancyMc

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Re: SML (Scarlett's) updates
« Reply #142 on: April 04, 2009, 08:18:26 am »
Yeah, so we should like park really far from the entrance if we don't want our cars to be all dented up when we come out of Maxwell's?  ;D

Now, Scarlett, I need an update.  I would just like to know, since you sound all perfect, what is different about your life now as compared to before surgery.
That goes for anyone who is recently post-op and seems to be doing just fine from the posts.  Be honest.  I want to know exactly what to expect.  My yard is emerging from the snow cover, and I will need to get out there and work on it in a matter of weeks, not months.  So, is there even the slightest possibility I will be back in business by the end of the month like the young man who skied three weeks post-op?  How long before one can bend over?  How long before one can pick up heavy loads?  How long before I can walk without my poles?  This is just the optimistic time frame, not if there are any major roadblocks.
Thanks.  Hope you're doing well.
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

EJTampa

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Re: SML (Scarlett's) updates
« Reply #143 on: April 04, 2009, 09:53:50 am »
I'm not sure if this is a hijack or not, but I'll answer from my perspective.
 
By 2 weeks, I could do simple gardening things.  My orders were:  No lifting, bending, stooping, pushing, pulling for 2 weeks.  After 2 weeks, ok to lift up to 10 pounds.  After 6 weeks and up to 12 weeks, no lifting over 30 pounds.  Assuming everything goes well, I think you can get into the yard in weeks as opposed to months.  You may need extra breaks, and will certainly want to protect the surgical area from dirt/dust.
 
This goes for you too Scarlett! :)  Actually, I'm ready for another update from you too, Scarlett :).  How are you feeling?  Are you still taking any prescription meds for anything?
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

NancyMc

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Re: SML (Scarlett's) updates
« Reply #144 on: April 04, 2009, 10:49:19 am »
Thanks, Ernie. 
Quote
That goes for anyone who is recently post-op
  You meet the guidelines.   ;D
That sounds great!  I can hardly wait!
Scarlett must be having too much fun to post!
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

SML

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Re: SML (Scarlett's) updates
« Reply #145 on: April 04, 2009, 12:21:32 pm »
Hi Nancy and Ernie,

Been out on the town all night … just got in!  ;D

No really, I have to say my post op symptoms have been pretty minimal:

I had the “wonky head� syndrome before I even went into surgery, so that feeling I would say is somewhat worse than I had going in. I have experienced what Ernie had said about people moving towards you making you feel more off balance. In these situations I found having my handy dandy cane comes in very handy.

I have had pretty severe headaches (mostly during the night) where there is no comfortable position to place my head. Usually within an hour after getting up and taking some meds, It’s much better. The last two nights in a row, have actually been headache free-ish (only tiny ones).

I am taking Tylenol every 4 to 6 hours for the pain in the daytime and have cut the Percocet to ½ pill for during the night as needed. I am still taking Valium before going to bed. It helps relax my neck.

I have had a shooting pain in my AN ear from time to time (Dr. Barker didn’t seem to think it was anything to worry about ) I got to ask him that before I left the hospital.

Restrictions given before leaving the hospital… Well let’s just say they were pretty vague.

(Exactly as it is written)
·   Do not operate any motorized vehicle for two weeks.
·   No heavy lifting or bending for one month.
·   Slowly increase your activity at your own pace.
·   Do not operate any motorized vehicle nor drink alcohol while on pain medications.

As you can see, no weight limitations were given.

I am just using common sense for everything else. If it doesn’t feel good, I don’t do it! ;)

Scarlett

P.S. Ernie, hijacking, not to worry. Everyones input is always welcome.
SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

NancyMc

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Re: SML (Scarlett's) updates
« Reply #146 on: April 04, 2009, 01:28:14 pm »
Scarlett,
Valium for neck, percocet and tylenol for surgery site pain, and what for headache?
Sorry, just curious.  I imagine I will have at least the same symptoms as yours if not additional.  I don't have wonky head at present, only SSD, tinnitus, and balance if I close my eyes or fumble in the darkness.
I can't believe it's only four days away.
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Jim Scott

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Re: SML (Scarlett's) updates
« Reply #147 on: April 04, 2009, 02:16:25 pm »


That goes for anyone who is recently post-op and seems to be doing just fine from the posts.  Be honest.  I want to know exactly what to expect.  My yard is emerging from the snow cover, and I will need to get out there and work on it in a matter of weeks, not months.  So, is there even the slightest possibility I will be back in business by the end of the month like the young man who skied three weeks post-op?  How long before one can bend over?  How long before one can pick up heavy loads?  How long before I can walk without my poles?  This is just the optimistic time frame, not if there are any major roadblocks.  Thanks.

Nancy ~

I'm almost 3 years post-op and don't fit the parameter you set with your question which is focused on the short-term but I thought it might be helpful to mention that I was given permission to drive (by my neurosurgeon) 2 weeks after my surgery.  I immediately drove on the interstate and never looked back (except when changing lanes, of course).  :)  I was playing miniature golf about 3 weeks after my surgery, with little problem, although my balance was not 100%.  Actually, it still isn't, but 90% is acceptable.  Bending over wasn't much of a challenge but I refrained from lifting anything heavy for quite some time, especially if my wife was watching.  ;)  I was walking about 2 miles daily (in a nearby park) just a week or so after my hospital discharge because the PT (who signed off on me after 3 visits) recommended walking as much as possible.  I don't ski or do anything really strenuous or athletic and my condo association pays a professional service to keep up our lawns and such, so I can't offer any comments on that aspect but for what it's worth as a long-term view following a successful surgery, last year (2 years post-op) we visited Disneyworld® and I easily navigated the Space Mountain roller coaster ride as well as other fast rides ('Test Track' was fun) and probably walked about 5 miles or more per day, for 5 full days.  I was tired - but not exhausted - and had a great time.

Forgive me for stating the obvious, but you know that every AN patient is unique and while I fully sympathize with your desire to know what to expect, post-op, just as I did, there will always be an unknown factor in this kind of surgery when it comes to post-op recovery.  I had a tripod cane ready for my use when I was discharged - but never needed it.  By the time I began my FSR treatments 3 months after my surgery, I was driving myself (accompanied by my wife) to and from the hospital, a 64-mile round-trip, five days per week for 5 weeks.  No problem.  My observation, based on my own immediate post-op experience, is that it takes a few weeks to get up to speed and you'll definitely notice a few deficits but if one is motivated and doesn't give in to minor set-backs, I believe AN surgery recovery (assuming no real complications, of course) can be relatively quick, although it probably takes a a full year to completely recover.  Your mileage may vary but I'm guessing that you'll be doing some of that yard work by the end of the month.  Perhaps not as much or for as long as you might wish - but you'll be out there.  The drive to regain normalcy is a powerful motivator.  It was for me - and I suspect it will be for you.

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.

joebloggs

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Re: SML (Scarlett's) updates
« Reply #148 on: April 04, 2009, 06:29:58 pm »
Hi Scarlett - I just thought I'd chime in to say I got the shooting pains in my ear too - but they've stopped now just over three weeks post op.  The docs didn't seem to think it was a big deal either, just everything settling around the nerves in I think.  Also I get the weird feeling when people walk towards me too... I thought maybe I was going crazy!  When I'm in the supermarket and someone is walking towards me with a trolley I hold onto the shelf so I don't get too wobbly!  People must think I'm some kind of weirdo!  Hope all going well there!

JB
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

SML

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Re: SML (Scarlett's) updates
« Reply #149 on: April 04, 2009, 08:34:05 pm »
Nancy,
The incision site doesn’t cause a lot of pain for me. It’s uncomfortable sometimes to lay too long on that side, but even that is not that bad. It actually hurts worse above the incision. Dr. Barker told me eventually that area would get just a “numbness� about it. I’m sure you’ll be poking around the yard in no time. You can always hire a gardener to do the heavy stuff. ;)

Hi Jim,
It’s good to hear from you. From all I have read on this web site, I agree with you that all AN Patients have unique symptoms and all kinds of different outcomes from their surgeries. I feel blessed that mine have to this point been minimal. That is why I try not to say too much about the little aches and pains that I may be having.

Hey JB,
You know, I hadn’t really noticed the people coming toward me thing till I went back into MGH to have my stitches out. There were just so many people coming from every which way it was unreal! I will be one happy camper if that clears up one of these days. At one point I had to just stop and stand still till most of them went by me. I live in a relatively small town and supermarkets aren’t usually too busy at the times I go there, so it hadn’t been too bad till Boston.
I’m sorry you’re feeling that way too, but glad to have company! We can be weirdoes together. ;D

Scarlett
SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.