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Archive for the ‘surgery’ Category

A Year Gone By

One year ago today, I told my husband I loved him and tried not to cry as they wheeled me toward the operating room. My thoughts vacillated between the scary “what ifs” involved with brain surgery and the hope of a new, improved life.

The summer had been a whirlwind with the Chiari diagnosis in early July, appointments with neurosurgeons and neurologists and then planning for the surgery we felt was the best path for us.  As much as I tried to cherish the moments leading up to October 2nd it felt as they had slipped so quickly through my fingers.  So much of my memories were veiled in pain and fear of the unknown.

With the help of a fantastic neurosurgeon and the support of an amazing network of family and friends–too many to list right now–I came through surgery with flying colors.  The first few days following the ordeal are very fuzzy, which now mimic the memories of the headaches and pain that used to plague me as well.  As my body healed in the first few weeks after surgery it became evident how successful the procedure had been.

Now, a year later, I’m grateful for the opportunity I’ve been given.  I’m grateful we made the decision to travel to Salt Lake to meet with Dr. Schmidt at the University of Utah instead of relying solely on the opinion of a local neurosurgeon.  I’m grateful that I never had to find out about the scare “what ifs” of the surgery.  I’m grateful to live (mainly) pain and symptom free with an occasional headache peppered into my life to keep me humble.  I’m grateful that I was a positive statistic in this game of what appears to be chance at times.

A year ago, with the help of many, I kicked Chiari’s ass.

I AM A BRAIN SURGERY SURVIVOR!

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6 Months

Today marks the 6-month anniversary of my decompression surgery.  Six months!

Before surgery I hoped that at this point I’d be finding myself getting back to the person I knew before.  I was being optimistic that 6 months of recovery would put me in a good place.  I’d never in my wildest dreams expected to be where I am today.

I’ve come so much further than I ever hoped to.  Well, I hoped to come this far, but was trying to be realistic in my wishes.  I wanted to be able to function again.  I wanted to be able to enjoy my life and family again.

Unfortunately, I can’t say anymore that I’ve been 100% headache free but the couple that I have had were easily treatable and weather-related.  It appears as though my newly decompressed brain likes it’s space and doesn’t appreciate weird weather patterns that cause fluctuations in barometric pressure (all of the headaches coincide with a drastic change in weather, usually storms).  On a whim, we tried a medication dosage that I used to take in High School and it’s done wonders at getting rid of the pain quickly.  And cheaply — $5 for 9 pills, compared to the hefty price tag of $57 for 9 pills of the previous medicine.

So even though I’m not completely headache free, this is a hell of a lot better than I was 6 months and 1 day ago.    I will take it, no questions asked.

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Surgical Follow-up

Tuesday of this week, we made the jaunt back down to the University of Utah for a CT scan and a follow-up appointment with the neurosurgeon.

Thankfully, everything looks fantastic.   The head CT shows that surgery has completely restored the flow of spinal fluid in/out of my brain.   Dr. Schmidt has concluded the to surgery to be “perfectly successful” and was pleased to see me doing so well.   He feels there is no need for physical therapy at this time, just some light stretching and massage to relieve the lingering tenderness and stiffness in my neck.

Personally, I feel really good (especially after fully recovering from the swine flu).   Without a doubt, the most miraculous aspect of all of this is my constant headaches are gone.   My energy is still low, but every day I continue to see improvements.

It’s hard to believe that as of today, it has been 6-weeks since the surgery.   This six weeks has flown by so much more quickly than the six week span between the initial appointment in Salt Lake City and the surgery.

We will be eternally grateful for the friends and family who have volunteered their time to come to Utah/Idaho and help out —  my sister Krystal, my friend Kristin, Cris’ sister Jessica, his Aunt Renee and his Mom — simply saying thank you seems to fall incredibly short in terms of letting them know how much their help has meant to our family.

As I’ve said many times in the last 6 weeks, especially in the last 3 days, we have much to be thankful for this Thanksgiving.

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I had another brief chat with Amanda today and I know she got out to the grocery store and piloted one of those little motorized carts.  I warned her that they place your face at fart level so to be ware, she informed me Cris would be her biggest offender and would stay ahead of him.

She missed the nursing staff so much that she went back in to visit them, desperate times I guess.  It turns out she had a rough day in regards to belly upset so she went in to be looked over.  It appears as though everything is healing well, no signs of infection. They changed some meds around to ease her nausea and put her on some steroids to reduce the swelling.  The nurse told her that they wanted her to stay over night and Amanda had a moment of panic thinking they were re-admitting her.  They just wanted her to stay in Salt Lake City another night.  Phew!  Their plan is to still head back tomorrow after they drop her sister off at the airport.

Calling a head before stopping by is requested…except me.  My awesomeness allows me free access.  No, I’ll be calling too.  I’m a lot of work so she needs to make sure she has the energy.

It sprinkled some non-sticking snow in IF today.  I hope everyone is warm and cozy.  I’m excited my friend is coming home.

Cheers!

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What’s Up?

This is Jess.  I was able to chat with Amanda for a little while on the phone tonight and she asked me to pop in and give a synopsis of the convo minus the dirty jokes and bad words.  I would never…  She is doing pretty good.  She has short bursts of energy where she tries not to push herself too hard because she’s realized that for every 20 minutes of overdoing it, she needs an hour or more to recover.  We all know how hard it is not to try to do more when you finally feel well. She’s finding the balance.

Her phone and computer time is being ‘monitored’ so that she doesn’t over do it there either.  At this point she doesn’t really have the energy to expend in that arena anyway. She will get back to everyone at some point and is very appreciative of everyone’s show of support.  The disconnect is getting more difficult, she’s really jonesing for more contact with her friends and family.

Some of the stiffness and soreness, while improving, is taxing. It’s difficult for her to eat certain foods, she’s thinking it’s the swelling in the back of her neck that is helping create this difficulty.  Apparently we don’t realize how much we move our head forward to take a bite or lift it to drink, she is acutely aware of it.  It’s also frustrating to have to ask people to do what we normally consider simple tasks like getting a book, getting a glass of water or turning on an overhead fan but she realizes it’s short lived.

Overall she is in great spirits, we shared a few laughs and it was good to hear her voice.  They should be heading back this way on Saturday. There’s some concern about how a 200 mile car ride will feel but they are all, dogs included, ready to be in their own space.  To get tea if she wants it, to know the water isn’t in danger of being shut off because the landlord didn’t pay the bill, let the dogs run free in the back yard, get Kate back on a regular schedule, sleep in their own bed on their own sheets and all the little things in between.  I’ll be happy to know that I have the option to stop by on a whim again.

Cheers!

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Late Night Update

Hey, it’s Jess again.  It’s about 11:15pm here in Salt Lake.  We drove down this evening so we could take Kate to the zoo tomorrow and see if I could charm my way into see Amanda sometime tomorrow.  The Magic 8 Ball says “Bwahahahaha! You have a better change of being crowned Miss America!” (have you seen me?  those aren’t good odds), I’m going to try anyway.

I actually had a chance to speak with Cris on the phone this evening, we do need to know where and when to pick up Kate.  He said Kate is doing great! She had her first sleep over and was quite content playing with her new friends.  She is very matter of fact about what is happening with Amanda and is taking it all in stride.   Of course her parents did a great job bringing it to her level which probably made it easier for her.  I’m sure this eases Mandy’s mind some,  we had spoken about her concerns about how all of this would impact Kate many times.

Cris also told me Mandy has had a rough day.  I imagine 6 weeks of anticipation and build up, delays on surgery day with a killer headache, anesthesia and your body readjusting to a more ‘normal’ (that word always cracks me up but anyway…) function would do a number on one’s system.  Not to mention all the little things that pop up on a day to day basis and the thoughts that bounce around inside your mind when you’re looking at brain surgery.   They decided to change her pain meds this evening to see if that will help eleviate some of her discomfort.
He also shared with me that he is reading your emails to her as they come in and saving them in a “surgery” folder so at some future date Mandy can read them for herself.  He expressed their gratitude and appreciation for the outpouring of concern, prayers, best wishes and love several times.  I took it upon myself to tell him that everyone understands that the two of them are unable to respond to every email at this time.

Since we will be in and out all day tomorrow,  I’m not sure when I’ll get to update.  Please continue your prayers, positive thoughts, candle burning or whatever it is you do, that the med change will bring her some comfort and much needed rest.  (And hope the Magic 8 Ball was wrong. 😉 )

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Surgery Schedule

It has been a long day for us, but we are finally settling into our condo to get some rest for the evening.  We’re sorry this is so late in coming.

Here is what we were told to expect the next few days:

9:30am  Check into hospital, the University of Utah Medical Center

10:30 — 11:30  Surgery begins. (The start time is dependent on the case before us in the operating room.)

We were told surgery is planned to be 6 hours long.  Amanda will spend 2-3 hours in recovery after coming out of the operating room; she will then be moved into ICU for 24-48 hours.  With the length of time all of this will take, it could be late in the day before Amanda is moved to ICU and family is allowed to see her.  Only family members will be allowed into ICU to visit and that will be done in short rotations.  The length of time spent in ICU will be dependent on how well she is doing.  If after 24 hours she is making good strides they will move her; if there are any concerns they will keep her another 24 hours.

After the time in ICU Amanda will be moved to a regular room on the neurosurgery floor for 3-5 days.  This too is dependent on how she is feeling and how quickly she is moving/eating on her own.  After being released from the hospital we’ll spend a couple of extra days at the condo we’ve rented to allow her more recovery time before driving back to Idaho Falls.

If you want to visit, Amanda will be able to see visitors (pending her condition at any given time) starting on Monday, barring any unforeseen complications.

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