Scared but scheduled for T4-pelvis Fusion Oct 2015

[susancook]

Mom x 4: it is evening here on the West Coast, so mom, if you are still awake, like golfnut said: you will be absolutely fine. Sure, you will hurt a whole bunch and you will be constipated and the surgery will not go exactly smoothly. But....with time you will find that you feel so much better than you did preoperatively and that surgery wasn't really that scary after all.

But yes, surgery is scary before you actually experience it. I wish that I could come over to your home or hotel and work on progressive relaxation....or we could just share a bottle of good wine together.

I am sending you positive thoughts, healing prayers, a hug.

Susan

[mabeckoff]

Wishing all good things for you

[jackieg412]

Sending calm healing thoughts

[susancook]

Hang in there. It will get better . a gentle hug
Susan

[Mom of 4]

On the other side...

Hi all. This is Nancy's sister posting. She thanks you all for your well wishes. She was discharged from the hospital yesterday and is wondering about pain control. She is on 5 mg oxycodone, valium, baclofen, gabopentin, and Tylenol. We know that every surgeon and patient is different, but does anyone else have a similar experience? She obviously is still struggling with pain.

[titaniumed]

HI Nancy’s sister!

Being released is good news....very good news.

The first few weeks will be hard with every minute spent trying to get comfortable. She should be able to take a hot shower by now, these are very helpful. Turn up the hot water heater in the garage so you don’t run out of hot water. She will also like to keep the house warm, we freeze quite a bit on our meds, even at 84 degrees.

I started on Oxycodone and felt that it wasn’t cutting the mustard. I was switched to Percoset, which is oxy with Tylenol and that helped some.......

The most important thing right now is to keep her moving. Walking often, doing short walks throughout the day help keep blood flowing which transfers nutrients into healing zones. Eating is extremely important since we get run down and our bodies are in a sort of high gear healing mode. Its hard to eat on meds that’s why I mention this. The ensure drinks are not too bad....and good old water keeps the plumbing from backing up.

Keep notes on all medication intake, food, walks, BM’s. This is important.

Congratulations and thanks for posting. Ask any questions you wish.

Ed

[susancook]

Please say hi from Susan!
Ed's advice was wise. My suggestions: pain meds: give around the clock at max allowed, if inadequate call the doctor
Constipation prevention: take Colace three times a day, take Miralax with juice daily, insert suppository if no BM in 2 days, use oral Dulcolax if needed further.
Lots of sleep, short walks 2 times a day, when sleeping on side place pillow between legs, promise: it will get better!
Give a gentle hug.
Susan

[cathydrew]

Pain control

Hi all. This is Nancy's sister posting. She thanks you all for your well wishes. She was discharged from the hospital yesterday and is wondering about pain control. She is on 5 mg oxycodone, valium, baclofen, gabopentin, and Tylenol. We know that every surgeon and patient is different, but does anyone else have a similar experience? She obviously is still struggling with pain.

I was on all that PLUS OxyContin every 6 hours. She needs a long lasting pain control. She has my cell number please call or text me. I am near the city had my surgery almost a year ago, I spoke to Nancy last weekend. Ice and heat alternating helped me too.

[Mojo's Mom]

That's not much for pain!

My husband who doesn't even have scoliosis had just an L3-S1 fusion and was discharged with way more than that. Granted, he was narcotic tolerant already, having been on OxyContin or something similar for many years, but still, a much smaller surgery. At eight weeks postop he is still taking what he was discharged with: 20mg Oxycontin 3 X daily, Percocet 20mg 4x daily, plus Robaxin and Valium.

By the way, shouldn't pain have decreased a lot by 8 weeks?

[Mom of 4]

2 weeks plus 2 days!!!

Hi everyone!! Thank you all so much for the prayers, well-wishes and advice. It means the world to me!!!

I can't believe I'm on the other side! I have been doing quite well. I hate sitting, but laying down and walking are no problem at all!!! I used the walker in the hospital, but haven't since. I was advised to use it at night because I have a tendency to get dizzy...there's a hole in my bathroom door to prove it The first night home, the walker was right next to the bed, but I didn't see it. I headed to the bathroom on my own...BIG MISTAKE. As I was washing my hands, my knees began to knock against the cabinet. Thankfully, my husband heard me yelling for help. I ended up passing out. Fortunately, he grabbed me under my arm pits before I fell to the floor. I have no recollection of how I got from the bathroom to the bed. All I remember was waking up on my knees at the edge of my bed side. I was really, really scared. My husband said I didn't fall, so I don't think I did any damage, thank GOD!!!

My husband bought a Garmin (Fit bit type thing) so that I can track my activity. I've been trying to walk a lot inside. Yesterday was the first day I actually got outside to walk. It was also the first day using my new Garmin. I took three reasonably sized walks. According to my Garmin it says I walked 2.74 miles for the day. If that's accurate, I'm pretty excited! I think the gorgeous Spring weather helped a lot, too!

Pain management was a challenge in the hospital. They tried, but never got it right Once out of the hospital, my sister, who was staying with me (hubby was with the 2 younger kids) set alarms so that I could receive all my meds on time. Boy, did that make a world of difference!!!

Today I have an appointment with my PCP. He's the one who will now manage my meds. I'm a little nervous about it. He's a wonderful doctor, but I don't think he has much experience with a surgery of this type. The pain management Doctor I called had a really long wait time to get an appointment so that's why I went with my PCP. Fingers crossed all goes well this morning!

[jackieg412]

You sound like you are doing really well. Walking is key. It also helps to be outside. Keep up the good work. Sitting is hard. After years it is still hard for me to sit it's all going to get easier from here.

[susancook]

Glad that you are doing well. Keep up the walking, I also suggest outside is best. Garmin is a great idea!
Pain meds are very individual, but make changes slowly. I used a lot of ice bags for pain relief. And....keep ahead of the constipation.
In recovery from surgery, it is difficult to remember the challenges and limitations that we had Preop. Those bad memories fade, but you can hopefully remember them and see that you are going forward....ever so slowly but forward.
Keep a journal of all that you do, meds you take, walking, naps, etc.
Sending healing thoughts your way.
Susan

[titaniumed]

Congratulation’s Nancy! You made it!

Now you will really understand why some of us will say “Hang in there”. Remember that things always get better with time....

I also close many posts with “Deep breaths” which is a good idea. The incentive spirometer has great value. Even if you simply stare at it as a reminder, go outside and breathe in deep and hard. As hard as you can, then exhale.....for the lungs and for the mind. It’s a great stress reducer.

My surgeon insisted on walking outdoors, and no treadmills. On meds, I guess its easy to make a mistake and get thrown down and there are all sorts of indoor air pollutants....

Walking should be done with mild goal setting in mind.....there is no race or distance requirement. It comes slow, and sometimes it hurts, so you turn around and go back home. I would walk to the next house, and turn around. A month later, it was the same thing for me with no distance improvement and if I pushed harder, it would set me back in pain. Eventually, you will get there.

It took me a year to walk a mile....so if you get stuck, you have to learn to smile. If someone asks what wrong, just say “I’m stuck here, there is nothing you can do” and smile. I had to do this a few times since the look of pain transfers across easily and it’s hard to hide sometimes.....Use walking sticks or ski poles, they help quite a bit if the local dogs come around wanting to jump up on you.

Hang in there
Ed

[mabeckoff]

Glad that you are on the other side
Take care of yourself now and Walk but don't over do it
Melissa

[cathydrew]

Yay!

I'm so glad to hear all this Nancy....minus the fall, I fell too once I think I told you. Scary!

Hooray on the walking too, that'll get you feeling better so fast, I definitely did NOT walk that much for the first month, but once I did I noticed a swift improvement.

Congratulations on getting it DONE!

Keep us posted.

💕