Author Topic: 1 year anniversary  (Read 11991 times)

Nickittynic

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1 year anniversary
« on: August 11, 2010, 12:50:23 pm »
Tell me about your experiences around your one year anniversary mark.

The way last summer went, was something like this:
In spring my father-in-law (who had glioblastoma) went into the hospital and started deteriorating really quickly. In july, he got word he would come home for in-home hospice. My husband and I packed up the kids and set up camp over there, to help out my mother-in-law. Five weeks later, in early August, he died. About 10 days after that I went to the ER with "the flu" (headache, nausea, fever, just feeling 'crappy'), and came out with the diagnosis of a brain tumor. One quick month (and a lot of family drama) later, and I was in surgery.

As this summer has been rushing past, I've been getting more and more anxious. A couple weeks ago I started to get chest pains that were getting more frequent until I did an EKG on myself (one of the benefits of being a nurse  :P) and saw it was okay, and they pretty much went away, so I'm assuming it was the anxiety. I know I should have gotten it checked out properly, but I was desperate to not go to the ER, especially not "this time of the year".
Last night, I had an episode similar to what sent me to the ER with "the flu" last year. I was repeatedly woken from sleep with a headache and nausea, until I couldn't go back to sleep again without a percocet. No fever or racing heart this time, though.

I'm thinking this is all psychosomatic. Is it really possible that exactly one year after my diagnosis I could have another tumor causing pretty much same symptoms?

Has anyone else gotten "nutty" around their anniversary(ies)?

25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

Jim Scott

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Re: 1 year anniversary
« Reply #1 on: August 11, 2010, 01:26:19 pm »
Hi, Nicole ~

I'm sorry to learn of your problems with headaches and nausea.  Ugh, no fun at all.  As a nurse, I assume you're well aware of somatization and how often various stresses/anxieties can manifest themselves as physical symptoms.  Obviously, I can't offer you a definitive answer for the exact cause of your unpleasant symptoms but I suspect they could well be, as you stated, psychosomatic.  Perhaps you could use a brief vacation or at least something pleasant to distract you from the negative stresses you've described in your post.  In any case, I'm sure you'll get through this.

For what it's worth: although I don't make a big deal about my AN 'anniversary', I do think about 'where I was ____years ago' every June 7th, the day of my AN surgery back in 2006.  Because I had an excellent surgical outcome (no complications/rapid recovery) I'm usually feeling pretty good on that date.  Because some folks think I'm a little bit weird anyway, I doubt anyone would notice if I acted 'nutty'.  ;)

Jim  
« Last Edit: August 13, 2010, 11:52:16 am by Jim Scott »
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.

suz

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Re: 1 year anniversary
« Reply #2 on: August 12, 2010, 05:10:35 pm »
Hello!
I just had to reply because I am also an OB/GYN nurse, wife, and mother of two, but I am more than twice your age.
I want to tell you that I think what you are feeling is completely normal. I myself experienced this after my cancer surgery - every year for years as I approached October 22nd I thought of nothing else; when I went to my doc for annual visits I had anxiety as well. My cancer was also found under unusual circumstances - someone accidentally checked off the wrong box when sending some labs - that led to more tests...Anyway,  now I can't remember whether it really was Oct 22nd! TIme heals all wounds. You have been through alot with you father-in-law and your own surgery, so give yourself some slack. If you need to make an appointment to see your doc to check out your sysmptoms then do so. No one could call you a hypochondriac!
Suz
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

jerseygirl

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Re: 1 year anniversary
« Reply #3 on: August 12, 2010, 06:29:11 pm »
Nikki,

Time certainly flies. I can't believe it has been a year already! One year MRI will ease your worries about tumor recurrence but besides that, I also think it is normal. Headache and nausea in the middle of the night are a sign of CSF build-up, which can be caused by any mass in the skull (it already sent you to an emergency room) or post-op period where the body is healing and CSF is re-routed after tumor removal (chances are overwhelming that this one is the case).  Interestingly, those early morning headaches reach their peak a few months after surgery and are really bad at one year post-op.

 I think my first surgery in 1988 was more like yours. I cannot begin to tell you how many those early morning headaches I had for 10 years post-op. They were all accompanied by nausea and, very often, vomiting. Since I could not keep down any of the pills I took, I learned that suppositories did the trick. I kept some on my night table and when early morning headache struck, I did not even have to get out of bed to take my painkiller. I took Indocin suppositories. The company used to manufacture them along with pills but they discontinued them so now you would have to compound them.

Another thing that might be helpful for this is to sleep at elevation. This  encourages CSF to drain and prevents its build-up in the skull that gives you headache. MRi, by the way, will also show if the CSF build-up is affecting you during the day by looking at the size of your ventricles. CSF build-up will widen them and compress the brain. I know all this because I have been through the mill with this. I even have a shunt implanted to drain CSF after my body refused to heal for months.

Good luck, keep us posted and let us know what works.

                Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

moe

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Re: 1 year anniversary
« Reply #4 on: August 12, 2010, 06:41:06 pm »


Has anyone else gotten "nutty" around their anniversary(ies)?



No, I have just been nutty ever SINCE my brain surgery! :D
Sorry I couldn't resist.....

I also can't believe it's been a year for you Nikki! You have had quite the year, and what you are experiencing does sound like stress. Nursing is NOT an easy profession, and you've got the kiddos.  Life is crazy I'm sure. If you are not against pills, I would ask your doctor for anti anxiety or antidepressants.Could be good ole panic attack. Don't know if you have a history of this, but definitely the one year anniversary could be triggering this.

 This whole AN journey is  just that- a journey! And requires a little extra help for some folks. Hope your headaches are under control. You really do need a vacation to just do NOTHING. Is that even possible????
Hang in there, let us know how you are doing.

Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

moe

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Re: 1 year anniversary
« Reply #5 on: August 12, 2010, 06:47:47 pm »
One more thing, Nikki
My year post surgery was a roller coaster, and I kind of blanked out the actual day of my surgery if you can believe that!

I had the surgery in WA where husband was stationed at the time, then went BACK to TX  to finish up the single mom thing  with the junior high schooler, high schooler/new college student. So by the one year mark, I was scrambling to sell the house, get TWO kids off to college, and move to WA (military moved us, whew..) I didn't even have time to think about my surgery! Very strange. I still to this day to not think of my AN anniversary, and I had a complicated one. Just weird how our brains differ in how they cope.

Hope you can do something fun for your anniversary. :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Soundy

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Re: 1 year anniversary
« Reply #6 on: September 07, 2010, 01:20:11 pm »
my first anniversary I kinda flipped out ... second anniversary I began to flip and decided to make it a celebration of living ...had cake , ice cream
and got tattoo of the drawing that is my avatar ..just passed 3rd and got another tattoo and had no flipping but had a party
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

ombrerose4

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Re: 1 year anniversary
« Reply #7 on: September 07, 2010, 05:08:17 pm »
Hi Nicki,

My one year anniversary is approaching in 21/2 weeks and I too feel anxious. I have these morbid thoughts like that I'm going to be diagnosed with cancer and other crazy things. I am also in my last semester of nursing school, so am also quite stressed. My headaches that were tapering down to one time a day have gotten more frequent these last few days-2-3 times a day. I am sure its just stress and thinking about being diagnosed last year with the AN, but I will feel better once I have my MRI. Or at least I hope I will feel better. For some reason I just get these feelings like something else is going to pop up. Hopefully it's just my overactive imagination coupled with my 1 year AN anniversary. 
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

iluuvpups

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Re: 1 year anniversary
« Reply #8 on: September 07, 2010, 05:15:58 pm »
I'm nowhere near my one year anniversary, but I too have the anxiety about something else popping up at any time.  Perhaps that's 'normal' after having a major health issue.
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

leapyrtwins

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Re: 1 year anniversary
« Reply #9 on: September 07, 2010, 07:30:16 pm »
I found my first annual MRI (done one year post op) to be very difficult.  I was freaked out, anxious, needed some serious hand-holding from my doc, etc.

The second and third years were much easier.  I think as time goes on, the AN Journey gets more tolerable.

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

Soundy

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Re: 1 year anniversary
« Reply #10 on: September 07, 2010, 10:07:17 pm »
I had my then 5 year old in surgery on Monday , then got AN diagnosis on Wednesday and Lupus diagnosis on Friday... then we moved from trailer we lived in while building the house into the house on Saturday ...then nearly  24 hours of no electricity while the line was disconnected from trailer and re-run under ground to the house... 

so after surgery I think I had a little of the wonder what was gonna happen next going through my head

but I have learned that as time goes on each anniversary gets a little better ... but don't tell my family ... it makes a good excuse for a party  ;D
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

LisaP

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Re: 1 year anniversary
« Reply #11 on: September 08, 2010, 01:52:02 pm »
Hi,

I go for my next MRI in Oct., I am nervous due to I have had a terrible Summer, my dad was very sick and passed away on August 28th, so I need to receive good news in Oct so I can go another year with W&W.

Let's see how my AN journey has gone so far, dx in March of 08, W&W, my brother passed away at age 49 with a gliloblastoma in Oct of 08 so two and a half years later I still deal with my AN but I also now deal with the loss of my dad and continue to care for my mom, soooo I really need good news in Oct., please say some prayers for me.

LisaP  :'(
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

pjb

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Re: 1 year anniversary
« Reply #12 on: September 08, 2010, 02:01:20 pm »
You definitely have my prayers I am hoping all goes well you deserve it you have gone through so much.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

pjb

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Re: 1 year anniversary
« Reply #13 on: September 08, 2010, 02:04:50 pm »
Hi,

I go for my next MRI in Oct., I am nervous due to I have had a terrible Summer, my dad was very sick and passed away on August 28th, so I need to receive good news in Oct so I can go another year with W&W.

Let's see how my AN journey has gone so far, dx in March of 08, W&W, my brother passed away at age 49 with a gliloblastoma in Oct of 08 so two and a half years later I still deal with my AN but I also now deal with the loss of my dad and continue to care for my mom, soooo I really need good news in Oct., please say some prayers for me.

LisaP  :'(

My prayers to you too you have been through so much hoping all goes well.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

LisaP

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Re: 1 year anniversary
« Reply #14 on: September 10, 2010, 05:29:49 am »
thanks for the well wishes,

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W