how do u prepare a teen for decompression surg

Question

How can I help my dd(14) prepare for decompresion surgery? She has been through so much.& I dont want to push her to far.Now that we finally have some answers & a surg.date,  I often find her in tears  & I ask whats wrong? & assure her it will be ok, the only thing she says is Mom,I'm so scared.I tell her I no honey its ok &normal to be afraid,,&she says NO mom,sorry but  you dont really no how it feels . I have tried to get her to join a support group like this one so she can talk to other people who have been through it but she says mom I just cant rite now.Maybe I just worry to much? but i think she needs to be prepared?

linnielou232 · Accepted Answer

So great to hear every thing is going so well.  Tell your DD I'm really proud of her.  Keep up the good work.  It is a long, but rewarding journey.

selmaS · Answer

U just made me cry...thank u for sharing that and tell ur DD I was thinking of her the whole time too....and I am so glad that sign was there....

  I always suggest that we have a special or secret message for kids when dealing with surgery, and here one was in place and I did not have to place it...the wonders and miracles that surround us <3

kelly1432 · Answer

The Lazy Boy is where she has slept the past 2 nights & spends most of her time there now. My dd  happen to see"Selma" on the wall in the hosp. & asked me if it was you? It was some how comforting to her & she told me it made her feel like you were there w/her & u understood how she was really feeling. She would often say to me mom it hurts, I woud tell her I know honey,her reply,no;sorry, u don't,not really.She would push herself to walk to where it was and say Selma understands don't u Selma? So again I have to thank you,u gave my dd strenght & hope when u didnt even know it.

selmaS · Answer

My "normal" temp was always low too as was my BP....so, I agree it was a brain stem issue as is much of what we deal with.

  Do u have a recliner?....that was much better for me post op for the first few weeks....lying flat in a bed was not comfy.

kelly1432 · Answer

Thanks Selma,
    She is taking it easy,had a hard time getting comfy in her own bed. Most impressive symptom gone for me is the fact she is now able to regulate her body temp. I found myself taking her temp frequently due to the fact she looked so flush, when in fact it was normal 98.6 EVERY time. I guess after C-ing her w/such a low temp for yrs 95.1 - 97.3 i was not able recognize what her norm really was.Have you heard of this being a symptom before? Dr. B said it was from the amount of compression on her brain stem.

selmaS · Answer

So glad to get an update on Mace....and keep in mind, she may feel great immediately post op as she is still on meds...and as she heals some symptoms may return, but should be short lived, but it is normal and some see it as a set back, when it is "normal" healing.....

  So be prepared for some ups and downs and make sure she does not over do it even tho she is feeling good...walking is great, neck exercises too....but, she needs to still be mindful of certain activities.

 Bending ,lifting...and in general just over doing it.

   Praying her recovery continues to move forward smoothly : )

kelly1432 · Answer

Mace's surg. went well(.6hrs )we are home and she is recovering well. The most difficult part of her recovery was transitioning from self medicating herself by pushing her button when ever she needed it to the pill form of pain meds. I am MOST happy to say that as of now ALL her pre op Chiari symptoms are gone with the exception of shakey hands,She also is still sensitive to light & certain sounds. Dr.Bologenese is a wonderful Doctor! He has given my daughter her life back! Mace' has such determination that she was walking with in 24hrs of surg. She is already a new kid! It is an Honor to be her Mother!  Thank You EVERYONE for all your support.

selmaS · Answer

I just got word from the friend of the person I am trying to reach for u that the person in charge of that NJ chiari support group just had a family emergency and may not be available for a while.

 I am trying to locate someone else in that area.....will let u know when I do.

linnielou232 · Answer

My heart goes out to you and your family. As you said this affect's the hole family and it will be a healing process for all of you. For me my kid's were 33 and 29, but I also have 2 grandkid's 11 and 7 that were scared to death that something would go wrong. I explained to them about the surgery and the need this way. "Grandma linnie is so smart that my brain doesn't fit in my head". They were quiet for a minute and replied. "You are smart G. Ma." LOL... We also had a hair shaving party the night before my surgery. I let them take turn's to shave the back of my head so it made it a little easier on them. I know how your feeling on saying that goodbye to your DD before surgery. It's hard to be strong sometimes. but I feel it is o.k. to them them see your emotion's. You are all going through this together and this will alter all of your lives. Please let your daughter as she head's into surgery that every thing will be so much more pain free after she has this surgery done. You sound like a strong mom. We are here for you in support, love, and understanding. This journey will get better I can say that. Your DD is young and she should bounce back really well. Just stay strong, I know how hard this can be..Your in my Chiarian prayer's. I wish I had the answer's to make this process easier for your younger one, but having her paticiapate in the process might help her to understand. One more thing I would like to mention. I know for me at the hospital they wouldn't let little one's in ICU, but if they do let your younger one in there please prepare her that your daughter might be a little swollen and a little pale. This is due to being on annasesia and being put on your stomach. It's nothing to worry about it is normal, but some people are not prepared for this. I let my family know this before hand so it wouldn't scare them. Wish you the best. We are here for you.

kelly1432 · Answer

The pas 3yrs the begining of our Chiari journey has affected my family on a daily basis.There were times even questioned myself,if I was doing the right thing. My youngest dd(9) emitionally affected the wost. She some how feels as if I love her sis more. I do understand y she has theese feelings,& have made an x-tra effort to have OUR time but she was so very young when this first started,& part of her childhood was taken from her.I was constantly takin Mace to doc after doc so desprate for some one to help her. I always was open & honest with my girls I thought it may help them understand what was going on,it was so very hard cuz I didnt understand it myself? Brianna has been my saving grace,when times were really tough, & I reminded her her daily how she was MY hero,cuz she was helping me save her sisters life. since we found Dr. B,it is getting better but I fear the day of surg.I wont be strong enough for Bri, I Dread that very moment I Kiss Mace' goodbye & tell her I"ll b rite here waiting for u,and somehow find THAT mother strenght NOT showing her my fear&not cry for her sake,But I NO very sec shes out of site,I will brake down,and how is that going to affect Brianna? I no I should be strong for her also,but I dont think I can.Last nite,after Mace had a seizure again,Bri told me she cant wait for Dr.B to fix her sister, cuz she is scared sister will die when that happens &she that needs her Mommy too,and hates that mace need me more,.I replied once again baby girl,mommys rite here,and rubbed her back as she laid on my chest & I promised her Mace wont die. She than said well Mace is really luckly u found Dr.B to fix her,I wish he could fix me, I told her she was perfect & asked what she meant,she replied with tears,Mommy I have a broken heart& anger issues,I Hate Mace'sometimes when shes sick.  I almost lost it! How very sad.I told her I understand her feelings & that she was normal for having them & Dr. B is helping to fix her heart as well & that by helping Mace',is how he was helping her. I promised her I would help her fix it also,one day at a time,and she held me tighter till she eventually fell asleep. So while I am so very grateful I did finally get on the rite path for one of my children & got the her rite doc &help she so desprately need,I created an unstable,emotional mess for another. I have tried to get both girls into counceling they both refused due to the fact,they have lost faith in doctors helping them after going through all of this.I dont blame them,and feel like I have just now began my REAL journey. The journey to put my family back toghther one day at a time. I thank God every day for helping me find this site. The fact of knowing I am not alone and I have made the rite decisions in believing in my daughter when no one else did, gives me great comfort& the strength to put that smile on my face,the second they awake and to be the Mom they BOTH need me to be.  
Thank You for you support,
   Kelly

kelly1432 · Answer

Surg. was moved up a day,now the 25th,if your able to find someone in my area plz give them my personal cell,********* due to the fact I can not always "get" lol the lab top from my children. Mace writes alot of stories online with her best friend,& I think its helpfull for her rite now. 
Thanks again,

Kelly

kelly1432 · Answer

Jan 25,this coming wed. Thanks for your support,this has been so very hard.

kelly1432 · Answer

Thnk You I think she woulk like that.

linnielou232 · Answer

My heart goes out to you and your family.  I can't inmagine being 14 and having to deal with this, I was 48 when I had my surgeries.  I did find that having surgery it wasn't all about me.  It has an affect on everyone who lives with someone with Chairi.  Having surgery is scary.  I never had to have surgery until I found out about Chairi.  I just wanted to let you and your DD know your not alone.  We are here for you and my heart goes out to you and the journey that you have to go through.  You might not be going in and having the surgery, but you and your family will feel the pain your DD is going through.  It was difficult for my family to watch me go through this, that is why I say I know it is just as hard for you.  Your in my Chirain prayer's.  Just let your daughter know that in the long run she will be happy she had the surgery.  She will be up and around in no time.  Kid's bounce back so much easier.  Just remind her to take it really really easy afterward and no lifting and bending.

irislita · Answer

P.s. and like rylanesmom said distraction helps for a while.

irislita · Answer

I am not a mum,but only can talk from my experience.the only thing people could do before surgery was letting me cry,letting me be afraid.no one can really ease it.i think also the fact that she is having the result of an illness is a schock.but it helps talk to others who went through this.me myself i stopped looking up stories in the internet about decompression as u can also find  videos or pics showing parts of the operation.if u can prevent dont let her see this...its too hard in my opinion

Rylanesmom · Answer

As Selma said it is overwhelming as an adult too.
Just the fact that you are trying to find resources and comfort her shows the type of Mom you are.  I am 37 and I find myself crying because I an scared too...it's scary! Lots if hugs, hats, maybe some purple ribbons painted on the toes, funny movies.....I am sure you are stressed too.  When is her date?

selmaS · Answer

I will check with someone I know in that area and see if I can get someone to meet her...that may be better then posting....

 Buy some hats....and let her know it does grow back : )

 I had my surgery at TCI and all my hair was back to shoulder length evenly....in a YR and a half.....but was hidden by the new hair growth in no time....I left my hair long and it was that amount of time for it to catch up....

  It was overwhelming for me as an adult...so, I can only imagine what it was like for someone her age to get the news....

  I will get info from the other person and get back to u....

     "selma"

kelly1432 · Answer

She (we) has talked to Dr.B b4 we left the hosp.in NY. She really didnt say to much.She listened intensely & sat on my lap as he explained in detail with pics,what was he was going to do.He was very good with her & spoke directly to her.  She asked a few questions like do u have to shave my hair?How much?  but not many.She did cry a little,but he has such a soothing way he got her laughing in no time. I think it was a bit overwhelming 4 her at the time,& still is,that someone actually listened to her and what was about to happen. We live in south jersey not far from a.c.

selmaS · Answer

She may do better with a local support group....I know there is one in NJ...I am not sure where in NJ u r  and if the group meets near u....mayb a one on  one visit may help her more then typing to someone intangible.....

 She needs to see and feel...to be comforted.....

 There r many ways u can prepare her and one is  just be there and listen when she wants to talk...and give her a "in"...say look, I know u r afraid and in talking to many of the members of the chiari forum, they were too...and when u want to talk, I am here...and wait.....let her come to u when she is ready....and she will...and give her a few things that can offer her some solace....

 She needs to be positive....as I always tell the members it is like when driving and she  may not be of driving age but may understand this analogy....when sliding on rain slicked roads or ice, look to where u want to go, not where u fear the car may go...other wise u will end up in the ditch.
Be positive and take control!
 
 Has ur DD talked to her Dr?.....has she had a chance to ask questions?

    "selma"