Author Topic: The Other Shoe?  (Read 13998 times)

CHD63

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Re: The Other Shoe?
« Reply #15 on: March 01, 2009, 03:28:22 pm »
Judy ....

Although I can identify with much of what you have written, I am sad that it is continuing to drag on you.  I went through this circle longer than I want to say.  I am in your age group ..... and although not a widow, I, too, am a grandmother and a musician for nearly all of my life.  I struggle with severe balance issues, (after having retrosigmoid surgeries on both sides) 80% hearing loss on AN side, severe tinnitus, fatigue, etc. after one year out.

Not minimizing the "realness" of your depression, here are some of the things I have done to work on pulling me out of this state:

a) started working with a vestibular therapist (go to see him every two weeks) who put me on a home regimen of very specific exercises ..... at the end of each daily session at home I have incorporated playing the piano for 15-30 minutes (initially this was an extreme struggle because I am hearing two different pitches in my ears!)  Note:  I never want to do the exercises but always feel better after I do!

b) resumed singing in church choir, as well as a community chorus ..... not only for the musical release, but for the inherent support from the friends in the groups

c) focused on doing little things I can for my grandchildren ..... sending them stickers I get in the mail, etc.  ..... anything I can to feel like I am doing something for someone

Although life will never be back to the level it was pre-AN, I am really working on carving out a "new phase" in my life with my new limitations.  I certainly hope and pray that you will be able to see through this dark curtain.

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

nancyann

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Re: The Other Shoe?
« Reply #16 on: March 01, 2009, 03:33:23 pm »
Hi there Marci:
1.  Nope,  I work on not putting negative thoughts into my head.  (actually,  I never think about what else, & look what happens !).
2.  Yes, several, all under control.
3.  no, but I do have asthma & eczema.
4.  I have a new found love of life since this AN journey,  & I take Prozac 20 mg po daily !
     
Always good thoughts,  Nancy
« Last Edit: March 01, 2009, 03:40:52 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

JudyT

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Re: The Other Shoe?
« Reply #17 on: March 02, 2009, 11:23:04 am »
Hi Clarice.....I just can't give in to the thinking...."it's the aging process" No it's not...You don't just wake up "old" I am working from a list of doable things to encourage myself to stretch myself back into areas I can do. Having a painting technique workshop in my studio this week....spent Sunday cooking do ahead and freeze meals for the week (watching NASCAR,Las Vegas) it was a very creative experience for me. I called an old friend in S. California and invited her for a visit...she's wonderful and very funny,Took a drive with a friend on the "Blossom Trail" and had lunch in a small neighboring town,called 2 of my grandchildren and offered to pick them up from school today (Dad on way home from Las Vegas race) at 17 &14.....they are really fun and offered to help Nanny with some things. So there is a path before me....a good one....going to try hard to stay on it! Each day is an opportunity to "overcome" negative issues that exist and will continue to....It's up to me to make the effort for change. I am very grateful for this site and the positive responses of everyone.....it's so encouraging!
Judy

Darlene

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Re: The Other Shoe?
« Reply #18 on: March 03, 2009, 12:42:06 am »



I vote that having an An qualifies you from being exempt from all other health issues...  where do I register my request? :) 

It certainly doesn't seem fair.  I must admit to kind of hoping that when I finally figure out what I am going to do about my An and get it done, that I would be finished with any major issues for a very long time.  It really does kind of seem that an inordinate amount of people that have AN have alot of other things going on with their health.  Before my AN diagnosis, I rarely got sick or even went to the doctor but since I was diagnosed in Dec 2008 for 1.5cm AN I feel like it has been one thing after another... So in some ways I am waiting for the other shoe to drop. 

I went for a physical the day of my meeting with a surgeon-  Primary Dr. found lumps on my thyroid sent me for further testing- found out I have Hashimoto's disease- auto immune. It can be treated with medicine.  Ultrasound of thyroid found nodules and enlarged thyroid- biospsy showed benign although Doc says if thyroid continues to get enlarged will need to be removed because these biopsy aren't always conclusive. 

Blood test from physical showed anemia- sent to a gastrenterologist - tested negative for celiac disease but have a profound iron deficiency.  If the iron supplements don't improve levels I get to go for endoscopy & colonoscopy. 
 
Thyroid doctor sent me to dermatologist for possible skin cancer- currently awaiting biopsy results. 

Just visited the doctor today and have a wicked ear infection.  Of course it is in my non AN ear so now I hear even worse.   (luckily only temporary)

Friday I go for an MRI to see if the AN has grown and my claustrophobia has me more anxious than worrying about the test result.

Although all of these things have been causing me anxiety, everything so far has turned out ok and so I decided that 2009 is going to be a good year.

  It certainly doesn't hurt to have 4 kids, two dogs, 1 lizard a great husband, work, a recently widowed mom with health issues and lots of commitments to keep me from having time to think about what can happen and worrying about it.  I think ultimately although I worry about the shoe dropping, I try to look at what is good today.. my family is healthy and safe and I am lucky to be here sharing their lives.

Wishes of good health and peace to all! ;D
Darlene 

DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

lori67

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Re: The Other Shoe?
« Reply #19 on: March 03, 2009, 11:09:29 am »
Darlene - I'll second that request!  These medical issues should be more spread out among the population instead of a small group having to have it all!

I was healthy too - before the whole AN thing.  At least I thought I was anyway!  Now I am on a first name basis with every doctor, nurse, receptionist and pharmacist in the Nashville area!  Well, on the bright side, it's all things that can be dealt with, so that I'm thankful for.

And it sounds like we have a lot in common - 4 kids, 2 dogs, a husband and a recently widowed mother.  No lizard though - I have 2 goldfish instead.   :D

Hang in there everyone.  We're obviously all in good company!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

amymeri

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Re: The Other Shoe?
« Reply #20 on: March 03, 2009, 04:11:32 pm »
I can distinctly remember doing research when I had my first sx.  It was a toss-up...did I have a brain tumor or auto immune?  I read in some journal that people with autoimmune disorders rarely got brain tumors.  Whew...I knew I had an elevated ANA so I thought I was free and clear with the tumor dx.  WRONG! 

Seems like a double whammy...I wish it had been true!
Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

Soundy

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Re: The Other Shoe?
« Reply #21 on: March 03, 2009, 04:23:19 pm »
Something that I do that many don't understand , and I have had to learn to regulate , is my
busy-ness ... I have to keep going ...I have started subbing occasionally ...mostly half days ...money
sucks but I need interaction with people more than money ... I am still volunteering to do aide work
at school which pays nothing at all but keeps me busy ...then there is Girl Scouts , Cub Scouts , school
work with the girls , 4-H , light farm work and the list goes on

I have to keep moving or I will think about stuff and dwell on it or go to sleep...neither very productive
states ... and it sounds real busy and is but only moderately so... I don't volunteer on days I have Scout
meetings... if the girls have something going on that I need to help them with I don't do a full day of anything
else like aide work or subbing the day they need my extra attention ...only a half a day or nothing so I can
be rested focus on them...

pre-surgery I was working and all the other stuff too and managed ... so now I basically do the same things
I did before surgery just not as much ... and as time goes on I figure I can do more...even a year ago I wouldn't
have subbed to save my life ... and I still avoid any grade over 5th like the plague


We have talked about the new you on other threads ... finding your new self and liking them is key I think to
not stressing out over every little thing... something I have been guilty of and have learned from people
here coping skills that keep me sane most days

I joke about it but truth be know my kids are probably my biggest stressers and at same time what keeps me from
stressing out too much...stressful just because it is hard to have pre-teen girls in this day and age ... things have
changed so much since my boys were this age ...and just keeping up with them and being involved in their lives
keeps me balanced ... hectic but they do balance me and keep me sane  ( when they aren't driving me nuts)
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

JulieE

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Re: The Other Shoe?
« Reply #22 on: March 03, 2009, 11:02:01 pm »
Well, here's what's been going through my head last few days:  I read Linda's post and started researching the crohn's angle and it sounds a bit like the symptoms I've been having.  Infact, a gentleman at church stopped me after worship and said I had an ulcer, and then did a healing right then and there.  He said I had to go off all sugar and start flax oil.  I'm already a flax freak, but giving up sugar (that would include alchohol) was not in my game plan, and my husband dismissed it with a "he just heard your belly rumbling after that bowl of chili you ate last night - ha-ha!"  The symptoms did get worse (diarea, hives) prompting me to start this thread.  See, I always blamed it on a friend's unpasturized goat cheese I ate which gave me flu like syptoms (cramping, diarea) last year even b4 surgery, the episode from which I have never felt 100% since.  I even had to call my friends and delicately warn them of my concern, as a public service, and they confided in me about similar reactions to this cheese.  I'm thinking this was the introduction of the bacteria and the the autoimmune caused the imflamation to my intestine.  But interestingly enough, with the onset of Lent, I gave up the sugar and my beloved wine (and became pretty militant about food), and behold:  hives go away and stomach upset lessened until I overate pizza with the kids tonight: Hives popping out, stomach in turmoil.  Forced diet.
So now I am occilating on giving up the rhuemitologists apt. because this appears to be controllable with diligence.  Also, panels have been run on me in 12/07, turning up negative, even though I have been diagnosed with Raynaud's Syndromeas a child, and these syptoms - seems if you are not having a flare up, the tests are inconclusive.
But I have been heartened by Judy and Clarice' exchange about aging.  I had always felt not a day over 25, then woke from surgery and this year has made me realize I am indeed 44, What happened to the in between?!  Although I can wait to be a Grandmother  ;) (my kids are young), I am looking forward to it, and you both set good examples of how to do it.  I do give PT BIG credit, too.
Well, Lori and Darlene, I have only half the kids; nearly twice the dogs ( we have only three, but the kids continually hounding me for a lizard should count as 4), but feel a kinship with you guys anyway.  (we window shop at Herpeton)
Soundy, I too like to stay busy with the kids at school/activities, but haven't gained the wisdom not to do it all in one day yet - and I pay dearly the next day for it with fatigue:  will try to get better paced and come to peace with the "new" me.
In conclusion, like Amy, I think I'm not going to persue this right now.  I just got my life insurance renewal, which we had bought in a 10 year block and is due this month.  I already have to anti-up about the brain tumor, so I figure another diagnosis would not sit well with them.  I just won't have anything for a couple calendar years!
Goodnight,
Jules

Cheryl R

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Re: The Other Shoe?
« Reply #23 on: March 04, 2009, 08:40:54 am »
Hi Jules,         I haven't read back your other posts but have you been thru GI tests?       I am wondering if you have just irritable bowel.        I do unfortunately and do have an anti spasmodic I take at times.       I think I am some lactose intolerant also.          Some foods can bother me some of the time and under certain good conditions don't other times.                  One can be also fructose intolerant but the description of what you had problems after eating,don't sound right.   
Crohns would make you have diarrhea whcih would not stop and not be food induced.        Any chance of food allergies?                    Many years ago I  was allergy tested since my dr was wondering.   
                   Good luck with it all.     Makes life not fun,           Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Darlene

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Re: The Other Shoe?
« Reply #24 on: March 13, 2009, 08:38:11 pm »
Julie,

Maybe the shoe doesn't have to drop!

My MRI showed my An remaining stable.  Skin cancer biopsy came back benign.  So aside from having some more hearing loss, that I really noticied during the MRI (Last time I heard the technician talking very clearly this time it was a mumbled jumble) things seem ok. 

Now if I could just make a decision about what to do!!!  Well, I have heard that inaction is action itself. :D

I recommend a lizard except for having to feed it those darn crickets!  Although it does bring alot of laughter into our home, every time I try to get one from the cricket cage to the lizard cage the darn thing escapes and my kids are rolling on the floor laughing at the specatacle of me trying to "wrangle" this tiny cricket into a cage.  It doesn't hurt that my 100lb labrador is petrified of these tiny crickets and jumps and runs away barking from it.   The insanity of my life is what keeps me sane.  :D

Lori,
It is amazing how similiar our lives are ! How is your Mom doing? My prays and thoughts are with you both.

Take care,
Darlene

 


DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

lori67

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Re: The Other Shoe?
« Reply #25 on: March 13, 2009, 09:15:27 pm »
Good Darlene - I'm glad that shoe stayed put!   ;D 

It would probably make your kids laugh even more if I happened to be there when a cricket got loose - I'd be hiding behind your dog because I'm afraid of them too!  I can't even walk past the thing they keep them in at the pet store - never know when they might get out!   :o

And my mom is doing remarkably well, thank you for asking.  My dad had Alzheimer's, so in a way, we'd been losing him for a few years and had some time to get used to the idea of his passing.  In the end, he was suffering and it was harder to deal with seeing that than it was to actually lose him.  I know he's good now though.  Does your mom have a hard time during holidays or birthdays?  That seems to be when my mom has it the hardest.

Anyway, glad the recent tests all went well!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Darlene

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Re: The Other Shoe?
« Reply #26 on: March 13, 2009, 09:58:42 pm »
Lori,

Sorry to hear about your  father's alzheimer's-my husbands 93 yr old grammy is suffering from that and it is truly heartbreaking.  My Dad had cancer and in the end I was grateful for an end to his suffering.  My mom has a tough time at the holidays, his birthday as well as their anniversary but she still  very much misses him being part of her daily life. Living alone after almost 50 years of marriage is a tough adjustment. The good news is the spring is coming and that cheers her up and once she can get out and tend to her flowers, I know her days will be much better.

I know I felt like I was personally beginning to recover from the ordeal of his illness and passing then a " shoe dropped"  and now I have the stress and worry of  possible Brain surgery/ radiation.  This whole decision/worry thiing is wearing me out.  Throughout my dad's illness I was the "stong" one and now I find it difficult to share my real thoughts and fears with anyone.  That is why I come to this site, it gives me a great release, alot of hope and even some funny laughs along with great advice.  It still amazes me how strong the human spirit is no matter how devastated you can be, the sun can shine another day.   

thanks for being there,
Take care,
Darlene

DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

GeorgiaMei

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Re: The Other Shoe?
« Reply #27 on: March 14, 2009, 01:22:32 pm »
Hey Jules.  How are you feeling?  Sorry to jump onto the thread so late, but I just read it and Yes! I have autoimmune issues.  As a child I had severe Juvenile Rheumatoid Arthritis (I am very lucky-they thought it was Lupus, but it turned out not to be!)  and another undefined immune issue as an infant related to a milk allergy.  Post-op I had some seizures and several sigmoid sinus clots in my brain.  I insisted that my neurologist do a rheumatoid/immune work-up b/c I thought it must be related to all of the swelling (since the surgeon thought I may have had a reaction to the sponges they used in surgery).  They never found a connection, but I am really interested to hear if you find one for yourself. 

I am a year out, and am also a positive person for the most part, but the AN recovery has been challenging.  I have chronic daily headaches and frequent migraines and feel like the pain makes it hard to stay positive.  I find a lot of comfort in this website and in hearing others stories.  I love to go for walks outside with my partner--it really perks me up when I am feeling blue.

I hope you find relief and a fun way to stay positive.  Know that you are not alone!

Take care and feel better!
Karen


3.3cm x 2.6cm : Translab resect 3/08
Post-op epilepsy , multiple clots in brain sinuses
Chronic H/A, Facial paralysis, Imbalance, Vertigo
CN VIII removed-deaf in R ear
Received amazing care from Drs. Roberson and Colen at CEI/Stanford (www.californiaearinstitute.com)

Julie E

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Re: The Other Shoe?
« Reply #28 on: April 14, 2010, 09:54:49 am »
Well Guys, I decided to come back and see how every one was doing, and give you an update on my inflammation.  Turns out, after going to the Rheumatologist. there are no autoimmune issues - Thank God; he sent me to the allergist: Not wheat (tested for) and it was his opinion it was not food related.  Swelling continued until after an episode causing me to study a jar of (organic) pasta sauce, and I noticed it had soybean oil in it.  After cutting out all soy, (its in everything) my inflammation almost entirely subsided. The occasional episodes remaining finally got traced to the Belgian Beers (with yeast sediment) I occasionally shared with my husband.  Woe is me, I gave up beer, but I have no more swelling!
So, in like an MSNBC storyline I subsequently heard, there seems to be a link with Anesthesia and people developing food allergies.  Anyone else notice this?  The yeast one is old, though.  I can make the association clearly now: almost a decade ago during pregnancy and nursing I didn't consume any beer, 1st episode came on after I started enjoying beers with my husband again.  All I can say is I should have adopted a food diary a long time ago; and don't necessarily accept an allergists dismissal of food allergies.
A related, or unrelated finding (depending on how you look at it) was revealed by a Dr I visited during my desperate search for what was going on.  He maintained that a book called "The China Study" pointed to our culture getting way to much dairy.  He agreed with the hypothesis that people who are prone to tumors should stay away from too much animal proteins, especially dairy.  He suggested I go completely off dairy for 100 days (which I did, except for butter: I don't have time to make ghee, which is boiled and strained so that the milk solids are removed).  I bought into this in part, because I had an organic farmer neighbor, who made the most delicious goat cheese, die from breast cancer.  She was vegetarian, and I was considering it, so I recall asking her about how she got enough protein and I recall her answer was from legumes and such, but stated "also, obviously, a lot of cheese...".  My results were that I lost the last 5 lbs I ever wanted to loose; hopefully my cholesterol is down; and two benign tumors I had on my skin diminished in size.  It can't hurt to cut back was my conclusion.  I've since returned to moderate consumption...I can't give up beer AND cheese!
Take Care,
Julie
2.7cm translab surgery 3/28/08 Austin, Texas.  Drs. James Kemper and Craig Kemper

CHD63

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Re: The Other Shoe?
« Reply #29 on: April 14, 2010, 11:29:37 am »
Julie .....

Good to see you back again.  ..... and interesting developments on your food intolerances.

I know I felt better when I was consuming mostly what we had grown ourselves in a big garden.  Now that I can no longer do that, I am very, very careful what I buy and where I buy it.  I read labels constantly and buy as much locally grown produce as possible.  Giving up all dairy would be very difficult for me ..... I love cheese.  We have cut way back on our meat consumption, especially beef, but I cannot quite make the break to being a vegetarian.

I think the effects of food on a person is very individual.  In other words, I don't think we all have the same intolerances.  I am so glad you have discovered some trigger points for your symptoms so you can avoid them, as much as possible.

Keep posting to let us know how this continues for you.  It may very well help someone else.

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