Chiari Online Support Group

Surgery 2 days away


#1

Hello Everyone,

My 18 almost 19 year old daugther is having decompression surgery on 04/30/15 at Duke Hospital in Durham, NC. We have spent the last 2 1/2 years going from one specialist to another before finally getting a correct diganosis (we had a great primary care doctor who kept pushing for answers). What I'm most worried about is her recovery from surgery and the amount of pain. She has no peripheral vision at all and only a 50/50 chance of this improving. This has taken her independence from her as she is no longer allowed to drive. She has quit going to classes at the local community college and only does online classes now. She is in a very deep depression and is concerned that she will never be "normal" again. I'm not sure what to tell her or how to help her with her fears. Prayers and any suggestions on how to help her get ready for this surgery are greatly welcomed and appreciated.

Thanks,

Vicky


#2

Prayers for her and speedy recovery


#3

Hi, Vicky.
I will be thinking of you and your daughter through the coming days.
Has she seen a counselor or therapist for the severe depression? I know from experience it can make all the difference and have a profound effect on both outlook and quality of life.

As for experience of pain after surgery, there are many here who have successfully managed their post-op pain with help of their medical care team. It may be helpful to discuss this with them ahead of surgery to help alleviate anxiety also.

I will be sure to check-in on you and your daughter. Please let us know how she is doing after surgery. Best wishes to her to stay strong and for a speedy recovery.
Hugs,
Laurie


#4

Hi Laurie, my name is Robbie. I am 53 years old and had my surgery on Dec 5th. As a mother, I’m sure your worried and scared for your daughter. What I can tell you is the surgery itself is the easy part. The hard work comes after during recovery. Be an advocate for her to keep her pain level down. She will be given pain medication to take when she gets home. I don’t recommend letting her sleep through her medication schedule as it will take that much longer to get her pain level back down again. Also, I took advantage of the occupational and physical therapy that was offered at home. I’m feeling better but still have some residual incision sight pain, difficulty with balance and memory loss. My neurologist made a referral to a neurological pain specialist and that has made a huge difference in quality of life. So no worries Mama, your baby will be fine…tell her to listen to her body after surgery and she will do well. God Bless and good luck.
Robbie


#5

Thanks everyone for the encouraging words and much needed insight! I will also be praying for you and your families.

Vicky


#6

Yes, my prayers go out to your daughter and to you. It will be a tough time to go though. There are a number of concerns and fears that you have outlined in your post. It seems that the most pressing are to get past the surgery itself. I pray that all goes well with that.

For myself, I found that I managed the post-surgery pain very well with practicing on tightening up the wee little muscles that attach themselves to my spine. These are LIGHT isometric contractions with no actual movement taking place. It might help to have a peek at an anatomy book or web page to help visualize. I started from the top and worked my way down my neck - tighten then release - tighten and release. I started as soon as I was relatively conscious. (I actually started before surgery so that I could feel the muscles tighten). At first, it was just imagining the muscles working but I eventually was able to feel the muscles contract. Over time, I worked up to 5 repetitions in an area for 5 seconds each then 10 seconds. I got more complicated too.

**I got this information from a physical therapist. And my understanding is that it helps to keep your neck stabilizer muscles functioning after the shock of surgery. I would also gently contract the back of my neck before I moved it so that everything was stable. Warning - this is not a great strategy to keep forever after surgery. It is kind of like stabilizing your back before you roll over when you have just had a baby.

Good luck in staying calm and being a rock for your daughter. Lots can be done later to help with vision and returning to a full life. First things first


#7

good luck to your kids I just had mine on the 10th on a April I went though a lot after surgery so I keep you in my prays


#8

vblue73- Firstly, I'm very sorry your DD has to go through this medical merry-go-round.

As difficult and stupid as it may sound right now... perhaps the single best thing you

could do for her is stay as positive as possible. Don't allow anyone negative to be around

her especially right now. Our brain is our best healing power, used along with professional

help of course. When it is compressed as her's must be at this point it's very difficult to

stay positive, make rational choices, etc. etc. The real problem with that isn't what you may

think at first; it is the stress that ensues with what we call Chiari Fog. When your mind

can't think normally everything can become a stressor. If no one has enlightened you yet

stress will continue to be her worst enemy. Many will say "oh, yes, I get stressed out all the

time" - they mean well but like Prov 18:13 points out- when someone assumes to know things

about us that they can't possibly understand well... leave it at that. But keep in mind they mean

well, we all NEED friends and just have to find the ones who care enough to try and understand.

As for the surgery, we are all different obviously, but my compression was coupled by multiple

conditions and was extreme. They rushed me in for fear the pressure would cause permanent

damage. But guess what? When I woke from the surgery there was less pain than when they

took me back. I'm dead serious way less pain the pressure that the CSF blockage causes is

extreme. To have it relieved gives a superlative feeling of relief. Of course there is pain afterwards

especially if you try to overdue it to soon but for me the nerve pains and healing where nothing

in comparison. Everyone is different but I sincerely hope your dd surgery goes well.

Positive thoughts

CW


#9

Hi vblue, I am sending lots of positive thoughts your way for your daughter's surgery tomorrow. I am sending you and your family tons of hugs as well.


#10

I am so sorry your daughter has this Chiari problem and surgery so young. I am remembering her in prayer as she has surgery today. My heart goes out to her.


#11

vblue, I wanted to just check in on both you and your daughter. How is she doing in post-op? How are you? Stay strong. We’re thinking of you.
Hugs,
Laurie


#12

My daughter had her surgery on April 30th with no complications and was able to come home on Saturday May 2nd. She has been in alot of pain but she managed to cook breakfast for me today! She says that her vision and hearing are worse but we are hopeful this will get better after all the swelling and irritation have gone. I was very surprised by how well she has done. The one thing no one told us was that when you have brain surgery your best medicine is quite and no stimulation. We had 10 family and friends at the hospital for support and the PACU nurse about had a fit with us for having so many (they were all in the waiting room), after she explained what my daughter needed we had everyone say good bye quickly and her and I settled in for a very long first night. Both nights we were at the hospital we had 2 very great nurses and they explained everything and offered advice. Brain surgery is very different than anything I had ever had done to me or my mom even. We were not as prepared as we could have been but with help and lots of support my daughter did very well. Thanks to everyone who has prayed and checked in.


#13

vblue, It’s wonderful you and your daughter had such tremendous support from family. How’s her recovery going? It’s been several months now…
Hugs,
Laurie