Author Topic: post CK plus new hydro....what and when to tell your child  (Read 7792 times)

flier58

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post CK plus new hydro....what and when to tell your child
« on: November 15, 2010, 02:46:00 pm »
Hi,
I will have a retrosigmoid surgery Nov. 30th.  I'm very depressed mostly due to unknown future (job, income etc.) but as of now my biggest issue is my 7yo son. What to tell him, when what words to use so I don't scare him.   I lost faith in good outcomes since docs told me that my CK and hydrocephalus will negatively impact recovery (yes, they told me it may not be that bad but by now I'm convinced it will be).  I just need actual words to address my kid's fears!!!!  He desn't know much what's going on but how do I prepare him that I may be a very changed person after I return from hospital. How did the  parents of young kids dealt with this issue.
Flier 

CHD63

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Re: post CK plus new hydro....what and when to tell your child
« Reply #1 on: November 15, 2010, 03:22:45 pm »
Flier .....

I did not have small children when I had my AN surgery ..... my three kids are all grown ..... my oldest grandchild is almost 6.  In my opinion I would tell him the truth ..... that you have a growth inside your head that did not do what you hoped it would with the radiation treatment so now the doctor is going to remove it ..... then wait for him to ask questions (you might have to prompt him to ask or say what he is thinking).  I would not go in to the gory details of how they are going to remove it, unless he asks how they are going to do it.  Even then, less is better with the scary details ..... they will make a small incision in the back of my head and get it that way.  If you are calm and matter-of-fact about it, that is the way he will take it.  If necessary, choose your time to discuss this when you are feeling up to it.

Kids are very resilient as long as they do not pick up on our fears so that is very important.

My granddaughter was 3 1/2 when she and her mother came to stay with me for a few days after my surgery.  Her mom just told her Grandma has something growing in her head that did not belong there and the doctor was going to take it out.  Her reply was "Well then, can we plant it in the garden then?"  Point is:  kids understand at their own level (not our adult fear-driven levels).

Hopefully others will be along on this soon.

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: post CK plus new hydro....what and when to tell your child
« Reply #2 on: November 15, 2010, 04:54:57 pm »
Yvonne ~

My son was 27 when I received my AN diagnosis, underwent surgery followed (as a plan) by FSR, so I can't offer any personal experience.  However, I'm a parent and at one time, my son was seven years old - and I recall that time quite vividly.  It was the year he asked me, with all the skeptical innocence of that tender age, if Santa Claus was real.  I had not prepared for this (we were alone at the time) and had to improvise.  I asked him what he thought (to find where he was on this issue).  He was learning logic and he couldn't understand how Santa Claus could be all over the world delivering toys within a few hours.  It just didn't make sense to him (but I could tell he was dismayed by his own skepticism).  I asked him if he understood what a 'symbol' was (I used 'Uncle Sam' representing our country as an example).  He did understand the concept (clever boy).  So, I gently explained that Santa Claus was a symbol of the spirit of Christmas.  He seemed kind of relieved.  We're Christians, so I went on to (briefly) explain the correlation between the sacrifice of Jesus a (a gift) and the custom of exchanging gifts at Christmas.  I added that Santa Claus is for the 'little kids' (remember, my son was seven years old at the time) that are too young to really understand the meaning of Christmas.  It went well.  Even my wife was satisfied with how I handled this parental minefield.  My son enjoyed Christmas just as much as he ever did, even without the illusion of a magical man delivering his gifts.  

I relate all this to make the point that, as the cliché goes: kids are resilient.  You can be honest but keep it simple (your son is only 7) and don't offer too many details...he really doesn't care. He just wants to know that (a) you'll be O.K. and (b) that this won't happen to him.  I wouldn't discuss how you'll be afterward, because you can't really know exactly how you'll be post-op and there is no need to burden a little boy with scary warnings about Mommy being 'different' after her operation.  That will only frighten him.  Kids need stability in their lives.  If you have problems post-op, deal with those then.  It's fine to be realistic but don't 'buy trouble' and don't put unnecessary ideas into a young boy's mind that Mommy won't be 'normal'.  If that turns out to be the case, deal with it, then, as needed.  I would also strongly suggest that you be very aware of your attitude/body language when you talk about this with your son.  Kids are very perceptive and if you tear up, your voice cracks or you basically act depressed and a bit frightened, he'll very likely pick up on all that, no matter how soothing your words.  Fake some confidence if you have to - for his sake.  No need to lie and say it's 'nothing' but there is also no need to act as if you're going to the gallows on Surgery Day, at least when discussing this with your boy.  I would be as 'matter-of-fact' as possible and tell him he has to 'help daddy' and that you'll probably be sleepy a lot when you return home from the hospital - and leave the post-op explanations at that.

Finally, the reality is that you know your son a lot better than anyone else does and that should be a guide for discussing this with him.  The important thing to remember is that, at seven, a boy looks up to his mom and despite what may happen with the surgery or after, he'll still love you.  That is what matters most - so don't ever lose sight of that fact.  I wish you the best with your surgery and want you to know that you'll be in the thoughts and prayers of many as you approach this challenge.

Jim
« Last Edit: November 19, 2010, 02:26:20 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.

flier58

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Re: post CK plus new hydro....what and when to tell your child
« Reply #3 on: November 15, 2010, 05:32:37 pm »
Hi Clarice and Jim,
Thank you for our responses.  I think I have to change my signature...because I'm Andy's (overprotective?) mom.  Thank you for your input - this growth and hydro completely robbed me of confidence.  I don't care about my smile but feeling lousy or being in pain for long period of time really scares me.  Saying that I want my kid to be OK with my disabilities.  I just don't want him to suffer because I don't look like his friends' moms.
Anyways thanks for your replays.
Yvonne

Yvonne ~

I fixed the gender error in my post.  Thanks for the correction.  J.S.

« Last Edit: November 16, 2010, 02:45:57 pm by Jim Scott »

CHD63

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Re: post CK plus new hydro....what and when to tell your child
« Reply #4 on: November 15, 2010, 05:44:13 pm »
Yvonne .....

First of all, please do not jump to the conclusion that you will have disabilities.  With all of the ANs being removed by experts these days, facial paralysis is certainly not the normal outcome.

I had retrosigmoid surgery for the removal of my AN almost three years ago and I certainly do not consider that I have any disabilities.  That is not to say that some people do ..... but it is not the usual outcome.  I have no facial paralysis, no headaches, no swallowing problems ..... never did.  I initially had double vision (gone within two weeks!).  I retained 20% of my hearing and it is boosted very adequately with a hearing aid.  I do have tinnitus, but I can tune it out except when I am in a very noisy environment or overly tired or overly stressed.  Because this was my second brain surgery, I lost the function of both of my vestibular nerves so I have had to learn many compensating techniques to maintain my balance.  In no way could I consider it a disability because I can drive the car and I can do everything I ever wanted to do.  I am a retired school teacher, but if I really feel like I could manage a classroom if I were still employed.  I do much volunteer work now.

You may have to change some things from your normal routine ...... especially during the healing months following surgery ...... but in a no-complication recovery you should be back to what you want/need to do.  Keep a positive attitude.  You may have some mountains to climb, but the view from the top is worth the trek.

Best thoughts.  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

Kathleen_Mc

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Re: post CK plus new hydro....what and when to tell your child
« Reply #5 on: November 16, 2010, 02:43:56 am »
My first AN was removed before I had children. The children in my life at that time were my sister's children, she choose to lie to them and told them I cracked my head open!.....they soon learned the truth from their cousins who had been told the truth by their parents. I don't know how that all went over but I'm sure my niece and newfew had their anxiety goin' finding out they hadn't been told the truth from other kids!
Because of my "disabilities" MY children were raised knowing I am hearing impaired....I always told them which ear didn't work, they have always seen me imbalanced and have always been told I'm dizzy, suffer headaches and all that business because I had "a bump" in my ear removed. I found out about the regrowth when my son was only 2 months old therefor they were raised I had another bump that would have to be taken out.....the regrowth was removed surgically  when they were around 2 and 5 and they didn't show any fear (no changes in sleep, eat etc).
In my opinion children can handle the truth, presented at an age appropriate level, much better than they can handle finding you in a lie.....
be truthful with them about the issue, answer their questions as able, provided them lots of reassurance and they'll be fine.
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Kaybo

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Re: post CK plus new hydro....what and when to tell your child
« Reply #6 on: November 16, 2010, 08:20:39 am »
Yvonne~
I had no children of my own when I intially had surgery, but was a 1st grade teacher so I had 22 6 & 7 year olds!!  I was and have been very open about what has happened to me (I still get questions all the time since I do have facial paralysis) - I try to answer the questions as detailed as possible - SUITABLE TO THEIR AGE.  I don't think I knew ahead of time that I might have a "funny face" but their was certainly time after to let them know.  I just reassured them over and over that even though I might LOOK different, I was still the same person on the inside.  Apparently this really worked with them because I had parents tell me that that is what their child told them.

I TOTALLY understand your fears, but lets not borrow trouble!  Maybe you are just like me and like to hope for the best, but be PREPARED for the worst!  I do worry more NOW at how other children react to my face as my girls are getting older.  As they have aged and some kids have said things, I have told them to tell the other kids that I may look a little different, but if I hadn't had this surgery, I wouldn't be here and they are glad that I am their Mommy!  My oldest daughter is in Middle School (such a hard time anyway!) and she has felt it a little more.  Last year we experienced a situation where we were with all new people (now we have moved cities & experience that every day!), some of the girls talked & whispered - I didn't even get it at first and then it finally hit me (many hours later)that they were talking about my face!  I'm not saying that was easy for either of us, but I did chose to use that as a learning experience - and I hope that MY children are more tolerant and loving of differences in others as they grow up because of it!!

It will all work out...take a deep breath - you can do this!!

K   ;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!

mk

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Re: post CK plus new hydro....what and when to tell your child
« Reply #7 on: November 16, 2010, 10:59:12 am »
 I lost faith in good outcomes since docs told me that my CK and hydrocephalus will negatively impact recovery (yes, they told me it may not be that bad but by now I'm convinced it will be). 

Hi Yvonne,

Sorry you are dealing with this. I can totally relate, as I think I may find myself in a similar situation, post GK (although I don't have hydrocephalus or other adverse reactions - just minor growth). I also have an almost 8 year old daughter and a 4 year old son.
I am just wondering, who told you that CK will negatively impact recovery. Have you consulted with Dr. Chang about this? I remember at least two or three forumites who underwent surgery after failed CK (or GK) and did  very well. Kathleen5306 comes to my mind, and maybe others could help with other names. I am not sure about hydrocephalus, how it is expected to affect the outcome?
I guess we will have to play whatever cards we are dealt with. I think that especially in tricky situations like these, having access to the best medical teams is of outmost importance.
Good luck and keep us posted.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

flier58

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Re: post CK plus new hydro....what and when to tell your child
« Reply #8 on: November 16, 2010, 02:10:51 pm »
Hi
I sent my last disc to Chang.  Got a letter stating that there is no hydrocephalus but 5 drs in Chicago found it and showed it to me on the scans.  Previously radiated tumors are often (not always) more difficult to resect.  If you look at hydrocephalus info on the net it doesn't help with anything and is most of the time it is a chronic condition with it's own attractions.   And with my luck and now almost 3 cm tumor I lost confidence that it will be OK.   But it has to be because of Andy.  Keep me in your prayers.
Yvonne

PaulW

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Re: post CK plus new hydro....what and when to tell your child
« Reply #9 on: November 16, 2010, 03:36:37 pm »
I am pretty sure water on the brain (hydrocephelus) can be fixed with a tap on the head... ;D
Seriously they can put in a shunt if its a problem.
(I am not a doctor)

I have two young children 7 and 10.

Children more than anything pick up on your vibe. So the delivery is very important.
If you don't look worried, they won't worry.
I told my children I had a growth, (a bit like a wart) inside my head that was affecting my hearing.
and that I was going to get it treated with x-rays. After my treatment the wart would be dead, and my hearing will hopefully be OK too.
I left my family at home while I had Cyberknife, and did not disrupt their daily routine.

If you look like you don't care and that its just a mild inconvenience, they won't care too much either.
Words like wart, growth on nerve, sound much better than Brain Tumour. Try X-Ray therapy instead of Radiation or Cyberknife Radiosurgery.

My kids really don't give a rats about my AN and thats the way I like it.
 
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

opp2

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Re: post CK plus new hydro....what and when to tell your child
« Reply #10 on: November 18, 2010, 08:40:24 pm »
Hi,
I will have a retrosigmoid surgery Nov. 30th.  I'm very depressed mostly due to unknown future (job, income etc.) but as of now my biggest issue is my 7yo son. What to tell him, when what words to use so I don't scare him.   I lost faith in good outcomes since docs told me that my CK and hydrocephalus will negatively impact recovery (yes, they told me it may not be that bad but by now I'm convinced it will be).  I just need actual words to address my kid's fears!!!!  He desn't know much what's going on but how do I prepare him that I may be a very changed person after I return from hospital. How did the  parents of young kids dealt with this issue.
Flier 

I haven't read anyone else's responses but I can tell you how I told my kids. (5 and 8 years old -- 4 and 7 at the time.) We sat them down and told them that Mom had to have an operation on my head because there was a tumour (and explained what a tumour was) pushing on stuff it shouldn't and causing Mom lots of trouble. They took it really well, but truly they do not get the big picture at that age.

They do however understand that things won't be the same. They will want to know that you love them and will still love them. They will still love you no matter what happens. At this point in their lives, YOU are the center of their universe. If you behave like the world is coming to an end, they will think it is. If you behave like you will survive and life will go on, they will believe it. Your child will believe what you believe. Believe in yourself. Believe that you will adapt and overcome what ever happens during this surgery. The alternative, quite frankly is, that you won't get better and this tumour, unless removed, will one day cause more grief that you are feeling now.

I told my kids that my face might be paralyzed and that I may look different, but I was still Mom and even with difficulties I may face, I was going to come home and be their Mom. I just might need their help. There aren't any special words to tell him. Just tell him the truth. It's going to be tough, but you are going to make it.

All the best to you. All the best.
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.

flier58

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Re: post CK plus new hydro....what and when to tell your child
« Reply #11 on: November 19, 2010, 09:00:55 am »
Hi guys,
I don't whine and whimper when Andy is around.  We will have to sit him down and tell him what's going on in terms that won't scare him (too much).  I am a very private person and have difficulty asking for help, I'm always trying to overcome difficulties without outside help as it backfired too many times.  Now I worry about income, bills etc.  I cannot even keep my house in order...I cannot find anything, I forget where I put the stuff the minute I put it away.  I feel like I'm loosing grip on my life...  I'm in awe how some of the posters handle themselves despite all kind of difficulties and hope that I will be able to arrive to some peace of mind,
Yvonne

You guys are the best

mk

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Re: post CK plus new hydro....what and when to tell your child
« Reply #12 on: November 19, 2010, 09:03:17 am »
Nikki, thank you for the very insightful advice on how to tell kids. I will certainly keep this in my mind if I need it (my kids are exactly the same age as yours).

Yvonne, sorry you are having such a hard time with all this. Going back to the hydrocephalus situation, are your Chicago doctors saying that the ventricles are compressed (which shows obviously on the scan), therefore potentially causing the risk of hydrocephalus?(this is my situation). Or is there actual hydrocephalus. If it is, then usually the symptoms are unbearable. A shunt is recommended in this case, to help alleviate the pressure - no matter if you have surgery or not afterwards. You may want to discuss this with your doctors.

Take care,
Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

flier58

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Re: post CK plus new hydro....what and when to tell your child
« Reply #13 on: November 19, 2010, 09:48:07 am »
Hi mk,
the drs cannot determine whether my hydro was caused  by the growing tumor or something else. There is a compression of the ventricles but CSF seems to circulate.  They feel that removal of tumor may alieviate the pressure and restore normal circulation/absorbtion of CSF.   So I'm sort of guinea pig.   The syptoms of hydro in adults are weird - sometimes it feels that I lost the ability to move my legs or that my butt is too heavy to move.   My gait looks like Parkinson's and I get very confused with the simplest tasks...
Anyways this is the card I was dealt....Hopefully I will manage to overcome these issues.
Yvonne