Here we go again

Lizzie has been slowly losing ground neurologically over the past couple of months. It started with her ataxia increasing and some nausea. Then we started noticing that her speech was becoming less clear, and talking was fatiguing her more. Her headaches started getting worse and Tylenol and ibuprofen weren’t doing the trick for her. Her neurologist tried her on a couple of new pain relievers and migraine specific meds but they didn’t help. At this point she is taking hydrocodone every four-five hours to cut the excruciating pain. She’s also been getting hot flashes, and they’ve been getting much more frequent and sweaty. A few weeks ago she lost her balance while transferring from a chair into her wheelchair and did a face-plant into the wood floor in our family room. Luckily there was no head injury but she did fracture her left foot, as it got caught in the front wheel of her chair when she fell. That’s been making her physical therapy more difficult, needless to say. The list of problems goes on but I’ll skip those details.

She’s had two CT scans taken in the last 4 weeks. We saw the doctor on Monday to discuss her latest CT scan findings. Her fourth ventricle, near the brainstem, has been slowly dilating, causing pressure against her brain stem, and it’s now to the point that she will need a permanent shunt to regulate the fluid drainage. Her surgery is next Wednesday, August 26th. They will bore a hole into her skull low on the back, left side, and run the shunt catheter through the cerebellum into the fourth ventricle It’s a completely separate shunt from the one she already has in her top right ventricle (although Dr. Kim will attach the drain tube with a Y connector to her other drain tube so that he won’t have to cut into her abdomen on the left side for a new tube to be inserted.) This is a much less common type of shunt, with a more complicated procedure, so she will have two top-notch surgeons working together: Dr. Kim and his partner Dr. Patel. A bit scary for us but the docs seem pretty darn confident and we know she will be in good hands. While she’s there, already on the table, etc., Dr. Kim is also going to make a small incision on the right side of Lizzie’s head where the current mesh plate is attached to her skull. The screw has been causing Lizzie a lot of head pain; Lizzie describes the pain as “it feels as if the corner of the mesh plate has detached and is pushing on my head.” Doctor Kim will insert a new screw (along with some other details) in hopes of alleviating that pain. If all goes well Lizzie will only be in the hospital for a few days. It would be really nice if this was the last surgery Lizzie ever needed in her brain. She’s already had 10 invasive brain surgeries (3 were craniotomies) plus 3 cyber-knife procedures, and I-don’t-remember-how-many cerebral angiograms. The poor kid never seems to get a break. But HOPEFULLY this will be the last of her setbacks and she will just keep on recovering from here on out.

But wait…that’s not all…

Don, my husband and Lizzie’s dad, is going to have surgery on August 28th, 2 days after Lizzie’s, to remove a small section (10-15 cm) of his colon. During his Age 50 screening colonoscopy, the doctor found a large (3 cm) polyp. He said it is NOT cancerous…yet, but could (would) become cancerous if not removed soon. Don has already had to reschedule it once due to an unmissable business meeting in Little Rock, so Lizzie wanted to wait to have her surgery until after Don has his. We both told her no way, we are not going to let her get sicker, and that even if they are both in the hospital at the same time it will be ok…we will manage. Different hospitals, but only 5 minutes away from each other.

Sometimes life just sucks! Keep us in your prayers?

my prayers are with you guys for a successful surgery for both lizzie and dad…stay strong …keep positive and have faith …fingers crossed this will be lizzies last ever surgery…love and best wishes to all xxxx

Wow! Next week is sure going to be busy and stressful for you guys. I hope BOTH surgeries go well and that the patients have quick recoveries! Do you guys have someone to help take care of “Nurse Mom” while this is all happening? Or at least a “Nurse sidekick?” I hope so!!!

Will be thinking of you all and hoping for good news all around.
:slight_smile: Shalon

Kati , you , Lizzie and Don are in my prayers .
May you all have the smoothest possible sailings through these stormy waters . You have your back covered , yes ?

Thanks y’all (haha, I’m goin’ all Texas on ya.) My oldest daughter, Victoria has W-Sat off from her job so that she can be with Lizzie and her dad…and Nurse Mom! Also, my mother is coming in from Los Angeles on Thursday, the day in between the 2 surgeries, and is staying for a week so I will have lots of backup. I think we’ve got it all worked out for Friday. Vic is going to stay with Lizzie in the hospital and they will watch a movie together, while I stay with Don in the pre-op, and wait there so I can be with him when he wakes up and gets moved to a room (don’t know if he’ll have to do the icu thing or not…I’m guessing not. After all, it’s not brain surgery! ha ha, i’m just hilarious today!) I’ll call the girls after he wakes up and I’ve gotten all the good news from his surgeon. Amazingly enough, as if we haven’t already used up everybody’s good wishes, prayers, and favors, our friends are already asking us what they can do to help. And you KNOW I will let them help! :slight_smile:

Thanks for all the good thoughts and prayers (and virtual hugs!) I will always be happy to return the favour!

Prayers and best wishes for a speedy recovery for Lizzie and Don. Take care of yourself too

Hi Kati,

Just reading all of this is overwhelming. My prayers go out to your family, my hope that everything will go well, and that everything will be better for all of you after the surgeries.


Good grief! You’ve got to be one helluva strong woman to endure all of this! Good luck with everything next week and please let us know the good news on Lizzy when you get it. Your hubby will do great, my mom had the same surgery, but to a larger extent. Anyway, I’ll be thinking of y’all! (I went NC on ya!)

My prayers that all comes out well. I’m glad to hear that Lizzie will be in expert hands, I’m looking forward to checking up later and hearing from you with great news. Thank God for your great support system, sounds like a real team effort! Best wishes!! btw, i love the humor. I think it’s the best medicine at times! keep strong :slight_smile:

HELLO?!?!?! oh my gosh. I just can’t stop shaking my head (and crying of course) reading this because honestly, this is insane. I say, “enough” for you guys and for Lizzie. That is enough now big guy up there!!! and i will pray like crazy for her that this is her last surgery for a long long time and that both of them stay strong.
I do not understand what shunts do at all but will do some reading on that.
Kati, I don’t know how you do all of this, I really don’t. You are a blessing to your family and to our group here and I’m so glad you found us.

My prayers are with you and your family. STAY STRONG

Ouch Kati. When it rains it pours. You and your family are in my thoughts and prayers:) Hang in there, and don;t forget to take care of yourself during this time;)