Author Topic: Angry  (Read 19748 times)

Nani

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Angry
« on: September 24, 2009, 08:29:10 am »
  I am so mad and scared right now.  I have been through hell.  My mother diagnosed with breast cancer, having to put my childhood dog down, having the blasted tumor and surgery and losing my Independence.  Feeling alone through recovery.  Now my 17 month old son is having tremors and I have to take him to get EEGs next week and see a neurologist to test for seizure activity.  

  I am angry at life.  Why?  Did I really have to get AN now?  23 years old, finally getting on with life, active and a new mom.  My husband tries, but he doesn't know how to help.  A Dr. put me on Lexapro but really?  Is a little pill supposed to make it all better?  

  Speaking of Dr.s, I have seen an ER Dr, a neurologist, a neurosurgeon, a cranial specialist, an ENT, another neurosurgeon, an opthamologist, plus my family Dr.  Aside from 1 of the neurosurgeons and the cranial specialist, the Dr.s ask me questions.  I have been so scared and in such a state of shock, I never remember the questions I want to ask around the right people.

  To top it off, my baby has to go see a neurologist.  He is displaying no signs of AN.  Just epilepsy.  Plus, you will have to excuse me if I don't associate good things with neurologists.

  Right now I feel as if everyday of my life has been an uphill battle lately.  


EDIT:  The tumor grew rapidly to a 1.5 by 2cm size.  I started showing symptoms late in my pregnancy.  The specialist suspects pregnancy hormones as the culprit for causing the tumor to grow like that.  Therefore he strongly advises against me getting pregnant again.  His thing on that is "we'll see".  I told the people closest to me and they said "at least you have one wonderful baby boy" all cheerful.  As if that will stop me from crying at night thinking of the family my husband and I wanted, but will never have.  Yes, there is adoption.  It's just not the same.  I am so sick of people telling me it's not that bad.  My single, childless friends.  I get it, they don't get it.  But my mom and mil?  It still tears me up inside everyday.  I still look at Gabriel's newborn pictures and cry because I will never hear a first cry again.  Never get another fist look into innocent eyes.  I will never get the special feeling of bringing a life into this world again.  Never feel the closeness and bonding of pregnancy.
 
« Last Edit: September 24, 2009, 08:43:22 am by Nani »
- AN surgery 3-17-09. 3.8 x 5.1cm tumor.  1 month in the hospital and a couple in ST, OT and PT.

*People are always going to be behind you telling you you can't.  The important thing is to turn around and say 'watch me'.

opp2

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Re: Angry
« Reply #1 on: September 24, 2009, 08:51:24 am »
I'm with you today Nani. I don't have the answers and every time I make a decision lately it seems to backfire right in my face. I'm having a good cry this morning, first once since finding out about this blessed tumour. I really would just like to go back to bed. For a week.

But...


I'm going to put on my running shoes and head out. Maybe a little exercise will help the day go by faster.

I can't change anything for you Nani, but I can tell you that you are definitely not alone in your frustrations.

Come for a virtual walk with me. I heard exercise releases good endorphins.

Nikki
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.

Nani

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Re: Angry
« Reply #2 on: September 24, 2009, 09:02:36 am »
I am right there with you.  I feel like I am close to being able to handle walks again.  As soon as I can I am going to stick DS in the stroller for daily walks.  For now, I'll join you on virtual walks.
- AN surgery 3-17-09. 3.8 x 5.1cm tumor.  1 month in the hospital and a couple in ST, OT and PT.

*People are always going to be behind you telling you you can't.  The important thing is to turn around and say 'watch me'.

sgerrard

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Re: Angry
« Reply #3 on: September 24, 2009, 09:32:12 am »
Nani,

I'm no doctor, but unless you have NF2, the chance of getting another AN is really tiny. There have been several members on the forum who had an AN removed, and then went on to have children. Kay had surgery in her twenties and then had 3 girls (all with curly hair); Trish just had twins a few months ago, after surgery last year. You may need to wait a year or two, but I think you should be optimistic that you can have more children in the future. If you get some opinions from other doctors who are experts in acoustic neuromas, I think you would find they say "go ahead."

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

opp2

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Re: Angry
« Reply #4 on: September 24, 2009, 09:49:24 am »
I'm back Nani. You?

I can't say it's solved my dilemmas, but I'm not bawling my eyes out anymore.  ;)

Come out again tomorrow...one day at a time, we'll lick this!
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.

4cm in Pacific Northwest

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Re: Angry
« Reply #5 on: September 24, 2009, 10:16:38 am »
Nani,

Ok I have now read through all 4 of your posts. I replied to the “hi” post before reading this one.

You have a lot on your plate right now… HUGE hug. Ok Ok you have WAY too much on you plate for someone so young. Mothering HUG here…

There is evidence that possibly meningiomas can grow with pregnancy… and possibly acoustic neuroma. But there is no know cause of acoustic neuroma and as far as I know a pregnancy is NOT going to “cause” another one to grow.

I know of a world renown Neurtologist who is based out of Pittsburg but also sees patients down there in Louisiana. He may be worth talking to… and can hopefully also answer questions – yes even future pregnancies and new tumors. (NOTE "If" there is still residual tumor left behind, to preserve the facial nerve, this may be why you are having MRI’s every 3 months in case there is re-growth. As mentioned in the “hi” post you need to get a copy of the radiology reports AND also the surgical notes. If there is residual tumor left behind- this MAY be why pregnancy is not adviced.  :-\)

If you have the insurance to cover him- I suggest you see him .Gee I wish you had seen him before surgery. Nevertheless here he is
Dr. Moisés A. Arriaga
http://moisesarriagamd.com/home

What ever you do – do not go there with anger. I have heard from many sources that he is an absolute sweet heart of a man with much compassion- and expertise. This comes from my ENT … and other patients who had him. One was a young as you and is now doing well… busy and active in life and no longer posting on the forum.

I have a sister-in -law who is in leadership on faculty at Baton Rouge community college- in the counseling dept. Gee maybe it would help just to have someone to talk to. You have way too much on your shoulders. Anger is not going to help. You need to clarify all that is happening and to set some goals… and talk this through with a good listener.

Also here are the support group contacts
http://www.anausa.org/support_groups_by_state.shtml

Sadly there is not one for Louisiana (yet) … perhaps see if you can make a day trip and go to a meeting in a neighboring state and make a fun field trip out of it. WE just had a handful of people from Washington State come to our support group meeting – in Oregon. We were glad to have them and we welcomed them with open arms.

One thing I tell people is what the Stewarts and stewardess tell people on airplanes. You must put you oxygen mask on first- before your child’s. As if you are not functioning – you cannot help your child. Know that epilepsy is very treatable. If you are not comfortable with your neurologist than see if you can find a neurologist that also offers pediatric care- so you feel better about your care for both you and your child.

Hang in there… until you have someone there to talk to. Know that you have us and it is totally ok to vent your frustrations. Know that you are not alone. Instead of crying alone at night- log on and talk to us. We do not care if you are having a bad hair day or that you are still in PJ’s.

Another cyber HUG

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Nani

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Re: Angry
« Reply #6 on: September 24, 2009, 10:34:24 am »
  They were only able to remove 80% of the tumor. 

  The more I read, the more cheated I feel.  I know so little about my own condition.  I feel like none of my doctors have really talked to me about it.  If I am still not happy after my Dec check-up, I think we'll contact that other doctor.
- AN surgery 3-17-09. 3.8 x 5.1cm tumor.  1 month in the hospital and a couple in ST, OT and PT.

*People are always going to be behind you telling you you can't.  The important thing is to turn around and say 'watch me'.

Nani

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Re: Angry
« Reply #7 on: September 24, 2009, 11:20:49 am »
Opp2:

Thanks for the walk.  I'm looking forward to tomorrow.  I could actually imagine the fresh air and feel of freedom.
- AN surgery 3-17-09. 3.8 x 5.1cm tumor.  1 month in the hospital and a couple in ST, OT and PT.

*People are always going to be behind you telling you you can't.  The important thing is to turn around and say 'watch me'.

ppearl214

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Re: Angry
« Reply #8 on: September 24, 2009, 12:09:49 pm »
Hi Nani and welcome. Well, I see you have been getting terrific support from the gang here, including our very own Dazy Hazy Mazy (DHM)  :-*  :-*  :-*

Nothing I say will be of help.  Many of us here, young and older alike, are dealing with a vast array of issues... some medical, some financial, some emotional, far too many to name.  Many here that have met me face to face (far too many for me to count) will share that even though I am older than you, I definately have a host of issues as well.  So, for me... I live by my mantra (which many here have heard far too many times).... "day by day, inch by inch.....".   We have to take each day as it comes, whether its a good day or a not-so-good day. In my case, "not so good" tend to outweigh the "good" in my world, but I try to take each step, even baby steps, as they come.  I came, I conquer as best as possible and I try to forge forward.  Sometimes it works, sometimes it doesn't, but I can look at myself in the mirror and know I tried my best (as no one can ask any further of that... to at least try my best).

I am not a mom so I cannot understand the mom's anquish when a child is not well.  But, know that I send healing hugglez to your son and send wishes that the dr's get things under control for him soon.  For you..... I can see and "hear" the difficulties you endure post AN treatment, but know that all of us are here with shoulders, good ears and hearts to try to help you along. 

Know that many of us endure daily struggles that we try our best to get through.  Although everyone's struggles may be different in nature, the one thing we all (collectively) have learned.... regardless of what is going on in each one's life.... we are certainly here for each other. Please remember that.

So, with that said.... again, welcome to you.... please hang in there... and all the bad jokes and commentaries are in the "AN Community" forum. :)  Yes, we all try to laugh as well. :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kaybo

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Re: Angry
« Reply #9 on: September 24, 2009, 03:07:16 pm »
Hi Nani~
Sounds like we have gone thru a lot of the same things and I am here to tell you that it WILL get better.  I had a "Huge" tumor when I was 25 and a stroke on the table.  I had to relearn how to walk, write, talk - everything.  I didn't even start therapy until after 3 months - when i had gone back to work.  Can you imagine working everyday right now?  I didn't have any choice so I just had to do the best I could - I taught 1st grade - kind of physically demanding...like having to care for a baby!!  I also had my eye sewn shut for 3 months - not because it was some archaic method to protect the cornea but b/c the cornea was so incredibly scratched that they didn't have any choice if they were to save the eye.  Of course, I don't see very well out of that eye and am SSD on the right side along with residual balance problems and exhaustion, but i have a great life now!  Check out our blog or PM me your # - I'd love to chat with you!  Must run to basketball, soccer x 2 and then another basketball practice!

;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Jim Scott

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Re: Angry
« Reply #10 on: September 24, 2009, 04:22:45 pm »
Hi, Nani ~

No wonder you feel angry at 'life'.  However, you've certainly received some useful and truly caring replies to your heartrending post.  I just wanted to offer you my 'welcome' and express my sorrow in learning about your troubles.  Admittedly, I'm not a doctor but I must state that I have my doubts concerning your doctor's claim that you can't ever consider another pregnancy, based on the possibility that your previous pregnancy-induced hormone release 'triggered' growth of the AN.  That's an interesting theory but hardly a fact.  Although it's not scientific, I think Kay's experience ('Kaybo'), including 3 very successful post-op pregnancies is most informative. You might want to consider giving her a call.  

I'm not a woman and so I won't pretend to fully understand your feelings about being denied having more children, but, as a parent, I can understand your anger at family and friends who fail to grasp the depth of your sorrow and sense of loss when dealing with this possibility.   Unfortunately, as we've discussed in this forum numerous times, that lack of sensitivity from friends and family is extremely common.  I believe that, while their support is wonderful and helpful, in many instances, we have to learn to emotionally support ourselves.  Others won't - or are simply unable.  As I often point out, everybody has their own set of issues they're dealing with - sometimes its things we know nothing about because they refuse to talk about them - and as individuals, we have only so much empathy and emotional support to give to others while dealing with our own problems.  In biblical terms, each of us carries his/her own 'cross'.  

Your baby's tremor's are certainly upsetting.  I recall my son being an infant and developing Pyloric stenosis (projectile vomiting) at just 3 weeks of age.  My wife and I were very worried but we had an excellent pediatrician and the problem was surgically repaired with no further issues.  I can only hope and pray that your son, Gabriel, will not be found to have a serious problem and that he can be easily treated.  Considering your experiences, I can sympathize with your wariness about dealing with neurologists.  I wouldn't be hostile toward  the neurologist.  I might suggest that before visiting the doctor, you write down the questions you wish to ask.  That way, you won't have to depend on your memory and can answer the doctor's questions but still have your questions answered, thus making the consultation more useful for both of you.  

If you have a spiritual faith, this would be a good time to call on it.  If not, you would probably do well to turn your anger into a steely determination to overcome the obstacles you face; your own recovery, the threat of not being able to bear more children, your baby's tremors, your mother's breast cancer diagnosis and even the death of your pet, which can all add up to a daunting array of obstacles to conquer.  Take them one at a time, especially your own recovery.  You're already dealing with your son's problem and will be consulting other doctors about the possibility of another pregnancy relating to a tumor re-growth.  You can support your mother and certainly mourn the loss of your dog.  

At 23, you have your youth to help you cope as well as a very young child to raise, which is a serious task in itself but one that is a joy, as many can tell you.  I hope your husband will continue to try to help you.  I'm sure he wants to but if you tell him or infer that as a man, he simply can't understand what you're going through, you've basically shut him out and said that he can't help. This isn't the best way to deal with your frustration and sorrow.  I think you realize that and I hope you'll be able to work with your husband as a 'team', as you fight the battles you face, both physical and emotional.  My wife and I have been married for 39 years and have always worked that way.  She was my 'rock' during my AN surgery and subsequent recovery.  I tried to be there for her during back surgeries she endured a few years earlier.  We've both lost our parents and we both went through the usual stresses of raising our son.  We've weathered job losses, financial problems, health problems - and more.  It's all part of living and we always worked as a team to get through it all.  Not to pretend that that we didn't have our times of angry, raised voices and slammed doors - because we did.  But we never gave up on each other, no matter what.  We also enjoyed and intend to enjoy lots of good times, too, just as you and your husband will.   I always remind folks struggling with problems that it won't always be this way.  Nothing stays the same, forever. You'll eventually recover, you'll deal with your son's medical issues and I bet you have another baby some day.  That isn't to pretend that the way it is right now doesn't suck.  It does.  No sugar coatings here, Nani.  I'm just making the point that you should consider trying to focus on the future and not allow yourself to be mired in anger and resentment, which can cloud your judgment. However, venting is good for the psyche and this forum is a great place to do it, so feel free.  We understand and support you and we hope you'll be able to feel better, soon - and that maybe we've helped just a little bit.

Jim  
« Last Edit: September 26, 2009, 02:39:29 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.

leapyrtwins

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Re: Angry
« Reply #11 on: September 25, 2009, 10:20:16 pm »
Nani -

I'm sorry things are so hard right now, but you will get through this - and we'll help you in any way we can. 

Do you know if there is a local ANA support group in your area?  You can check the link on the main page of the ANA's website.

You can also contact the ANA about their WTT (willing to talk) list - there might be another AN patient in your area who could give you some one-on-one support.

As others have said, there are several patients on this forum who have had children after an AN - so don't give up hope just yet in that area. 

Have faith.  We are here for you.

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

imnocleaver

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Re: Angry
« Reply #12 on: September 26, 2009, 08:29:05 pm »
Hi Nani,

I read your other posts, including your first "hi" thread, and quite honestly, took a while to jump in since I didn't even know where to begin.  My heart goes out to you, and I certainly don't want to pretend that I have even an inkling of what it's like to be in your shoes right now.  To have all that on your plate at once would be enough to drive anyone batty.

Please know that we are here for you, and between all of us, I'm sure we can piece together enough life experiences to at least relate to some of what you are going through, and although your crises seem to have piled up on you all at once, we can try to help you muddle through...even if it's only one crisis or even one day at a time.

As for myself, I have not yet been through treatment for my AN, and have not recently suffered the loss of a loved one such as your grandmother or had a troubling diagnosis of a parent, such as with your mother, so the most I can offer are kind words, and might completely miss the mark on being helpful.  However, I know all too well the frustrations of loss of insurance, frustrating and inadequate doctors, the loss of a dear pet and, as recently as last year, had my world temporarily turn upside-down as we went through a life-threatening and life-changing diagnosis with my oldest son, now 12.  With my AN diagnosis, I was fine after a few hours of research.  With my son's diagnosis...I cried off and on for days.  Still get a little choked up sometimes.  Darn kids.

Please hang in there.  You have every right to be sad, mad, scared, overwhelmed, and any other emotion you can conjure up.  Wallow in it, for a liitle bit, if need be.  Just make sure you take a deep breath, dust yourself off, and start again tomorrow.  (and repeat as necessary ;))

we're pulling for you --
 Michelle
5mm left IAC AN dx 7/13/09
January 2010 MRI showed no measurable growth
W&W!

CHD63

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Re: Angry
« Reply #13 on: September 26, 2009, 09:03:09 pm »
Nani .....

Want to add my welcome and say how sorry I am that you are having to deal with all of these issues.

Regarding the no further pregnancies, I would certainly obtain a second opinion, and third or more, if necessary.  To my admittedly limited knowledge, meningiomas or acoustic neuromas are not hormone related tumors, like malignant ones can be.  I had a rare rapidly growing AN and at my tender age, I definitely was not pregnant (my youngest child is 35!).  No one knows why some ANs can grow fast, while most grow very slowly.  Even some ANs can grow slowly and then have a sudden growth spurt and then go back to slow growing again.

Thoughts and prayers.

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

arkansasfarmgirl

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Re: Angry
« Reply #14 on: September 28, 2009, 02:22:05 pm »
I'm so sorry you're having to go through this all at once.  My kids were 3 1/2 years and 6 weeks old when I was diagnosed with a "ginormous" AN needing surgery asap.  Through it all, I held on to the thought that at least my kids were healthy.  I'm a big girl and can handle whatever comes my way (some days better than others!), but if it was one of my kids it would have broken my heart.  BTW, my mom had breast cancer when I was 20 years old and is now a 15 year survivor.  Hugs to you...

On the subject of having more kids.  I started showing AN symptoms halfway through my first pregnancy and lost a lot of my hearing when my son was about 10 weeks old.  I avoided going to the dr until things got really bad right after the birth of my daughter.  Although I regret not going to the dr when my tumor was smaller and would have been easier to deal with, I can't regret the set of circumstances that led to Lilly happening.  If I had done what I should have, she might not be here (the timing would most likely have been different).  At 23, I don't think you should completely write off having another child in the future.  I can understand not wanting to get pregnant until after the tumor has been dealt with, but I don't see why you couldn't later on.  I had my kids when I was 30 and 34--nothing wrong with being an "older" parent!!!  ;-)

Vonda