Post op hope and hauntings

My 14 year old daughter is 5 days post decompression surgery. She's rockin the recovery and complaining only of pain at the surgical site. So far, no talk of headache. I am being cautiously optimistic here but can't help but have a little glimmer of hope. She had that headache 24/7 for 2 solid years and now...seems to be gone.

Lynn is spending more time awake though, and reality has finally set in. She was trying to go about her normal business and keep it all together prior to the operation. What good would freaking out have done? The more and more her friends and teachers freaked out, the calmer she seemed to get. Soothing them was almost self soothing.

Now though, it's all come back. The overwhelming fear she felt when it was time to walk away from her parents and march down a hallway towards what she feared may be her last moments on earth...it's haunting her.

She felt like she didn't hug us long enough then, although we're still here and have not left her side in 5 days. We've been hugging non-stop since. Those highly vivid, frightening moments before she went under have started replaying in her head.

She's here, alive and wondering sometimes if it's all real. So hard to imagine it all happened and she's now at home, sipping Odwallas, watching Hunger Games and getting non-stop texts. Life is so bizarrely normal with her brother and friends coming and going and the dog hiding her toys under the bed...but it's not at all normal because it can't be.

Prior to the operation, we planned and talked endlessly. I read post after post, trying to learn what to expect after the procedure was done and learned to expect ANYTHING. Including a haunted sort of feeling.

Hi There,

1st off..how wonderful that Lynn is free thus far of those awful head aches....Great indication that her surgery was a success..IMHO

As far as the haunting feelings..I can understand her feeling that was, as I had similar thoughts after my operation 4 yrs back...and I am an adult..must be tougher on kids, I would think.

I went into the pre op waiting area without any major anxiety..I had complete faith in God and my surgical team...My family however, were a mess....They sat in the waiting room...anxiously watching this monitor screen that posts exactly when the doctor makes the opening incision and so on...

Once I was up in the ICU..though in pain, my family felt so releived, naturally. But for me, once I got home...It all hit me..BAMMMMMMMMMMM..What the heck just happened to me...I had my head cracked open.....Holy sh*t...went through my head! Funny how our minds work. Thankfully these feelings of , what I call...'what if's" faded fairly quickly. You see, once home, I began thinking.."what if this, what if that, ect"

So, just my 2 cents..think Lynn is experiencing the same as I did..Kinda like when you are in a crisis situation, you are all calm and cool..then , say a few days later you fall to pieces with such emotion.

You as her mom, must be totally exhausted. Please be sure to take time for you..easier said than done..I am a mom too!!!

Seriously though, you have gone through this too...obviously not the operation..but you have experienced Chiari via Lynn..and your love for her, your fear for her health, ect....does a job on a parent...Are you sleeping well? eating? So important to take time for yourself..that is NOT selfish.

Hugs to Lynn and a hug to GOOD 'OLE MOM!!!!!

Lori

Is Lynn a memember here too??

It's probably just hitting her for the first time how serious her procedure was. She probably became aware of her own mortality. Most kids think they are invincible and this surgery has taken feeling that from her.

I understand her fears that she didn't give enough hugs! I'm 34 years old and due to poor planning and bad cell service I was unable to see my parents the morning of the surgery. They were in the wrong waiting room and I couldn't reach them due to no signal in the hospital. I kept thinking how terrible it would be if I died and didn't get to hug them and tell them goodbye. I was so relieved when I woke up in recovery and got to see them again!

My daughter is not a member here but when I hear these stories, I fill her in. SOOOO comforting for her to know she's not alone when she feels these things. THANK YOU for sharing!!!!!!!

I hate to suggest medication right off the bat but i know the feeling you're talking about. I would highly recommend talking to your doctor about getting her on some anti-anxiety meds. They would probably be very low doses anyways so it's not a big deal, but it would be extremely helpful. I used to take Xanax, but now I take Klonopin. Not thrilled about either of them but they work :) good luck and much love<3

Wow! What a great strain of responses! Thank you everyone who replied. This is such a great question. First, I am sooo happy that your daughter's surgery went so well. Thank God! Second, I had a very similar experience. Part of it is the pain medication. Not that it masks the pain of the headaches. Rather, opiates work on the pleasure part of the brain. Hence, for me, once I started weaning off the dilodid and then the vicodan, all the emotions hit. And yes, Beeba is absolutely correct; this surgery is a very, very traumatic experience. Hence, part of it is facing the post-traumatic stress - which it sounds like you and your daughter are doing in a very, very healthy way! Yet another sign of her resilience! You might want to just look over some of the dynamics of post-trauma experiences at this website to familiarize yourself and have a frame of reference for how people respond psychologically to trauma: http://www.ptsd.va.gov/professional/pages/dsm-iv-tr-ptsd.asp The difference is: your daughter does not have a "disorder" ... she is simply experiencing the stress after a very, very traumatic experience.

For me, it was hard because everyone around me was so happy that the headaches were gone and I "looked great" and "hadn't been so good in years." Then, all of a sudden, I was an emotional train wreck. I went through periods of elation followed by feeling like a beaten dog from an animal shelter waiting for the next swat (or headache and unrelenting fatigue in this case). All the feelings of helplessness from the surgery came flooding in too.

At this point, I am feeling a lot of grief resulting from the past four and a half years of illness, being dismissed and devalued by the medical community, family, and friends who (with good intentions) constantly told me to suck it up and get over it. And, the grief over the loss of at least the last two years of my professional life and four years of my personal life. Now, the emotional responses of your daughter will be different, like maybe the loss of having "normal" teenage years, but the losses are real none-the-less. This is called ambiguous grief. These are losses that are hard to quantify and name but they are very, very real. Remember the stages of grief: denial, anger, depression, bargaining, and acceptance. These do not happen in a linear fashion. But you have already seen the denial pre-op and the depressive download of crying, if she gets angry at some point ... help her channel it into healthy outlets and not point it at you (we tend to dump our anger in the safest places – the ones that we love the most). So, all of the emotions are completely “normal” and that she is expressing them, sharing them, and processing them, texting them, is absolutely real and healthy. All you can really do is be present, let her dump her bucket, and, MOST IMPORTANTLY EMPATHIZE WITH HER.

If the onslaught of feelings seems like "too much, too fast" emotionally, valium happens to be a great muscle relaxant and might help her manage the anxiety and process all of the emotion a little more incrementally. However, you might want to ride it out a little before making that choice. Also, taking short walks, outside if possible with the weather, will help her brain chemistry get back on keel. Most of all, since she just has surgical pain, maybe this is a blessing because if she was still amped up, it might be hard for her take it slow and let the physical healing continue. Wishing you deep peace and your daughter continued healing, Fr. D


100% on the money. As you said, there've been so many losses along the way...pride, friends, all of middle school, family...but she was fighting the fight so she had an "oh well" mentality. She had to move on. Now suddenly, there's this new chapter and A LOT of time to think during recovery. It could all be far worse though! SO great to know though that others can relate. She LOVES the replies. Good luck to you and all CM sufferers. Geeze, I'm getting a little emotional myself just writing this. Such a mess this can all be!

HI!!

Just wanted to tell you that you and Lynn are thought and being prayed for..How are you all doing today???

Lori