Author Topic: I know I need help...  (Read 17514 times)

opp2

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Re: I know I need help...
« Reply #15 on: December 01, 2009, 07:09:50 am »
Hi Rhonda! Enjoy your day at home. We all need time off, and we all need to admit we need help. I'm so glad you're boyfriend and your friend are there for you.

And, did you see that Ottawa may be getting a Cyberknife? How cool is that? something to strive for. I left you my number on your phone. Call me anytime! I wish you peace.
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

SML

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Re: I know I need help...
« Reply #16 on: December 01, 2009, 07:21:49 am »
Rhonda,

I wish I could take all your problems (and everyone else’s on this forum) and make them disappear. This whole brain tumor thing is a lot for anyone to take, and if running would make it go away, I’d say RUN! You need to give your mind a break from all of this madness as much as you can, and definitely talk to your loved ones (and the doctors) about it and let them help you. Maybe a vacation with your boyfriend would be a great idea. Go someplace new, see new things, and give you mind a rest from all the bad things going on.

I have also been thinking about you and wondering how you made out with the doctors you were waiting to hear from.

I hope you keep posting here and let us help in whatever way we can. We are sending good thoughts and prayers your way.

Remember…You are strong, and you can do this!

Scarlett and Rich
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.

pjb

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Re: I know I need help...
« Reply #17 on: December 01, 2009, 07:36:03 am »
My prayers and thoughts are with you also, please talk to your doctor about your medication you might have to try several before one is right for you.  You definitely need to speak to someone other then family or friends you are going through so much. I know I have been depressed after my surgery and my AN was only 1cm., I am taking xanax and a pain killer vicodin because of the surgery and other medical issues then an ambien at night.  I am getting more depressed with taking all this medication I stare at the clock waiting for my next dosage..... It sounds nice to run away but please try a different medication to help you somewhat cope at least you are not alone here there are so many of us out there that you can talk to at anytime as needed...
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Nickittynic

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Re: I know I need help...
« Reply #18 on: December 01, 2009, 08:35:38 am »
*hugs*
Just wanted to tell you you are not alone. I consider, almost daily, running off to a commune somewhere with my kids.  :P I do see a therapist, and it seems to be helping, so maybe you could try that?
I'm already post-op, but facing going back to a job I don't like in this new post-op condition where I'm not sure if I even *can* do it. My therapist thinks it's not so much that my executive functioning is messed up that's leading to these "irrational" thoughts, but more of a sense of desperation.  ???
Whether that applies to you or not, you have every right to feel angry and sad and scared and I hope you find something that helps you!
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

petgroomer

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Re: I know I need help...
« Reply #19 on: December 01, 2009, 09:44:58 pm »
It has been so wonderful reading all these responses.  In them I see me.  In them I see self healing for others reading them also.
I am usually a positive person.  YESTERDAY I was not.  Today, I am on top of the world again.  I just took the one pill yesterday and within 40 mins, I felt a change.  I resumed back to the job I was doing on the grooming.  (yup, I actually left the house half way through the job in a crying mess and yes, she actually let me back in to finish the other dog.. good thing she is a close client of mine who let out her feelings of depression a month before to me!)
I am infact thinking a Crisis Councellor would be good.  I don't believe much in marriage councellors but a crisis one would have a different approach (so Rhonda, what 3 things can you do for yourself to make you happy.. lol lol)  As you can see, I have my humour back. 
I am not interested in taking pills daily.  I'm thinking my PRN will suffice, but my boyfriend says I should have a first aid kit in my car.. light the flare and take that pill as soon as I feel it coming on.  He is just so funny AND understanding.  I'm telling you,, yesterday he was the object of my anger and the one person I wanted to get as far away as possible from and let him know just that!  Yet, I'll tell you, he totally understands and promises to stand behind me all the way.  He just said he has learned to listen, no matter how unreasonable I sound, he knows it will only last so long.  He said all he can do is reassure me he loves me and will never let me go :P  Man, during my "freak out", I was DEFINATELY leaving and nothing was stopping me. 
I will say,, the FIRST thing I thought of for help and ran to... was HERE on this forum.  To people who I just KNEW would know what I am/was feeling and going through.  I immediately logged on and typed away.  I swear, if I ever can repay back (pay it forward) and help you as you help me... , if I can ever save a crash of an emotional day as you have done for me... I WILL BE THERE!
As for my surgery, I am awaiting the costs from Dr. Chang at Stanford so I can remit them to Ontario Health Ins. Plan to see if they will cover me out of country.  I am aware of the new machines coming to Ontario but am hopeful Dr. Chang will be able to do it for me.  He has already told me he will do the surgery and I have already filled out all the necessary paperwork at their facility.
Well, everyone, THANK YOU so much!!!!  Love you all!  xo
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

CHD63

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Re: I know I need help...
« Reply #20 on: December 02, 2009, 07:09:59 am »
Rhonda .....

So glad you are feeling better now!  You are on that emotional rollercoaster many of us know so well.  Your boyfriend sounds like a jewel ..... hang on to him!   :D  My husband has been my rock and patiently listens when I go down the hill before coming up again.

This Forum has been such a comfort for many of us and I am so glad you have found us.  No one else really knows what we have been or are going through ..... not family members, not even doctors!

Thoughts and prayers that the medical red-tape will be processed smoothly.

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

Jim Scott

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Re: I know I need help...
« Reply #21 on: December 02, 2009, 05:30:33 pm »
Hi, Rhonda ~

The huge improvement in both your attitude and outlook is very welcome news.  Your exultation at the change you've experienced is quite poignant to read about and of course, your appreciation of the folks that post on these ANA forums is most welcome.  From your account, your boyfriend seems to be mature and compassionate in his reactions to your mood swings.  I think he's a keeper.  I concur with both your assessment that some sort of counseling may be beneficial for you and your aversion to medication as a solution to your anxiety issues.  

Whatever path you chose for both your AN treatment and your occasional anxiety meltdowns (that many AN patients experience) I know you'll do well and of course, you can count on your AN family to support you all the way.  :)

Jim
« Last Edit: December 07, 2009, 03:50:23 pm 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.

Rc Moser

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Re: I know I need help...
« Reply #22 on: December 03, 2009, 09:12:29 pm »
I can relate some with your feelings, but mine wasn't that drastic. I think most all of us go through some sort of depression a few weeks/months and maybe years after our AN removal. I don't know what to tell you, nor your history, and you had a very large tumor which IMO quantifies you problems.  I don't think running away going to solve anything,  IMO it surely will make  it worse or worse yet fall victim of a vollent crime. I think you need to see you MD and he can recommend a physicist.  I do know running will only make a bad situation worse with no support, no job, probably no insurance, and no one to talk to but strangers. I have to ask how is that going to help? sorry you had to go through this.  Please seek some help.
9/17/03, 4.5CM, Translab, OU Medical Center, Dr. (the ear man) Saunders and Dr. B. (the BrainMAN) Wilson  along with about 4 other Doctors that keep me going for 18 hours.

petgroomer

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Re: I know I need help...
« Reply #23 on: December 03, 2009, 10:02:14 pm »
Update,, STILL smiling and having a great day :)
Honestly tho, I have much more pressure in my ear lately and a clogged/muffled feeling in it along with some on and off pings of pain in my eye temple area (I know you all can relate), but this is new to me,, so I think that can coincide with the dramatic fluctuation of emotions I felt/feel.
Got a call from Stanford Medical Center and I'm getting the costs tomorrow emailed to me.  Then it's all up hill from there.. I HOPE!  lol
Thanking you all for your kind words and support!  Anyone need a dog groomed??  Would love to help you out.. NO COST!  Just drop on by.. lol lol 
 ;)
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

CHD63

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Re: I know I need help...
« Reply #24 on: December 04, 2009, 09:11:34 am »
Alas, I do not have a dog!   :(  ..... but I'd love to drop on by just to meet you in person ..... you seem like such a neat person!

Hang in there ...... you will be OK!

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

pjb

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Re: I know I need help...
« Reply #25 on: December 04, 2009, 09:48:34 am »
Thank you for the offer but I have a Yorkshire Terrier and we call him the Yorkshire Terror all the groomers we have brought him to calls us to come get him they cannot handle the little guy.....it is so funny.  We have had the vet sedating him after problems with groomers but now he is getting too old for that and now we have to give him benadryl.

Remember it is uphill now,

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

NancyMc

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Re: I know I need help...
« Reply #26 on: December 04, 2009, 10:46:02 am »
I have one!  A golden similar to your photo buddy.  He's pictured in my spa day lipo face lift thread when I received the magic scarf pre-op.  He's 9 1/2 but still acts like a two-year old.  He was bred for coat, and if I'd known what that means . . .  I groom him myself as best I can, but mostly I vacuum a lot.
You sound a lot better.  I hope the team at Stanford can help you pronto so you can put this behind you and get on with your wonderful life with that fabulous man of yours.  (I have one, too.)
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

Joey

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Re: I know I need help...
« Reply #27 on: December 04, 2009, 02:34:14 pm »
Wow, I had to read thru all of these posts - and I'm teary eyed writing this.  It is helpful to know that we're not alone on the journey.  I completely related to so much of what was described - mine happens to be a long, dark, lonely tunnel that I walk in which no one can see or hear me.  These feelings started a few years ago after having to have a hysterectomy following a series of miscarriages.  We married late (I was 37) and the window of opportunity for children just seemed to be lost.  My husband and I then embarked on a closed adoption, which ultimately failed.  I recovered some - and moved on - then the AN was discovered.  I've been lucky as far as that part of my life and I'm doing well with that at least, but the depression seems to return when I start thinking about things and just wish for what NORMAL people are able to have.  You know, kids, being able to hear normally, and so on.  Sometimes I really do think I'm being punished for some reason and that is just so sad.  I know I need to get my butt back to church too, but even the effort required there seems like too much and maybe I'm not even worth it.  I haven't consulted anyone about this on a professional level for the same reasons.

You sound better now, and I'm glad you have someone special in your life to hold your hand along the way and not judge, just listen and be there and not be too shocked by anything you say or have to make everything fixed.  It's important to get everything in the open. 

On the lighter side (yes there is one) I have twin, black Standard Poodles, Max and Josef.  I would be proud to have you groom them!  They are the only things that keep me here and somewhat sane.  My husband is gone alot for his job, so they are a huge source of comfort.  I know that they need me and I can tell that they know when things are bad, too.     Just wanted to say I'm sorry for what you are going through and you are in my thoughts and prayers.

~~Joey





Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

petgroomer

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Re: I know I need help...
« Reply #28 on: December 04, 2009, 07:07:55 pm »
Joey:
I am so thankful you found the post and were able to relay your feelings.  That I feel is part of the healing.  It helped me Tremendously!!!  There are many life experiences out there that make mine a little ant hill and for that I feel shameful for ever letting myself get so upset.  I am here for you Joey!  We all are!  You will never be alone.  
See, this is also self healing when one can reach out to others.  (I think that is why councellors become councellors,, to heal themselves through others problems  :P )
You have been through alot!  Some things cannot be changed, however I do know how you feel as my first pregnancy was an ectopic and I lost my right tube and ovary and part of my left ovary.  I felt SO angry at the world.  SO angry at abortion.  So angry at mothers who treated their children with anything but love.  So angry at mothers who would abandon their children on the streets.  After 6 miscarriages I did eventually get into a fertility clinic and was able to have children.  My anger Instantly disappeared.  I know you were not able to heal in that way.  But Joey, God (I do beleive in God here, so I'm using him here :) ) does have his reasons and there are no "NORMAL" people in this world.  We all have our issues and problems.  I DO feel very fortunate for my life and situation.  I help people everyday because of my schwannoma.  (it's cute to see people look at me and try to figure out where it is in my neck.. lol.. they shift their eyes side to side... haha)
I am told over and over again that I don't look sick.  That I always have a smile on my face (they didnt see me MONDAY!!!  lol).  That I inspire others because no matter how down they are, I can always make them happy.  
You know you have a purpose too Joey, that inspires others no matter how YOU feel inside.  You ARE NORMAL.  Your life is normal Joey, I can go on and on,,, and if you wish, I can email you with other thoughts, but I will stop here because just reading your history and knowing you are able to reach out to others for help, lets me know you will be ok.  You WILL be ok :)
p.s. regarding the "being punished", I used to think the same way because my mom used to tell me "Rhonda, what ever you wish on someone, will come back to you 10 Fold (she passed away before my diagnosis from cancer)... well, I have wished LOTS of angry thoughts on people during my life,, and the first thing I thought of when I got the news of my Schwannoma was,, MOM WAS RIGHT!   
But Joey, we were picked because we can handle it.  You are definately worth going back to church,, infact, you will find a friend there who will NEVER let you down.. give it a try this Sunday and let me know!
« Last Edit: December 04, 2009, 07:12:49 pm by petgroomer »
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

Tricia (horsekayak)

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Re: I know I need help...
« Reply #29 on: December 07, 2009, 12:52:31 am »
We all might be like little snowflakes, each different, but boy, there are a lot of very similar snowflakes on this forum.

Talk about hitting a nerve with this post...i hope that you have found some comfort, things to consider, alternatives to try, etc. in all these great posts..

i didnt realize until reading this post just how sad i've been through all this drama with my AN diagnosis, research, decision, and treatment (which was radiosurgery 6 days ago)...i've tried so hard to be funny and supportive of my friends and family, and brave, and yet through most every day i've felt exactly like you've described...

i have recently been honest about my increased anxiety and depression (finally)  and asked for help...friends, a trusted counselor, a family physician (for an anti anxiety med), so at least now i dont feel like i'll go "postal" at any minute (apologies to any postal service employees)...but my AN situation has definitely made my lifelong issues with depression much worse...

i find comfort in things i've always loved: time with friends, family, time outdoors, time with pets, and time with my horses.  I'm sure that you know exactly what i mean when i talk about the healiing that comes from the unconditional love of an animal (even a big old peppermint-treat-greedy draft horse!!)

i actually cried while i read some of your posts...tears of compassion, sorrow, and of joy that you've found the forum, just like i did.

I'm sending you comfort and support...

tricia (horsekayak)
Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

"Excellence is to do a common thing in an uncommon way"...BT Washington