scheduled for surgery - any information is welcome!

[scoliosisstory]

Hello everyone! I am a 47 yo female who was diagnosed at age 12. The first doctor I saw recommended surgery (I have no idea what degree curve I had then), but my parents took me for a second opinion and I ended up wearing a "Boston Bucket" brace for a year. I recall follow-up visits and rechecks over the years, the latter three being 5 years apart. After the last one, approximately 7 years ago, my orthopedic surgeon said my scoliosis wasn't getting better but it wasn't getting worse, so I was officially discharged. I don't recall many scoliosis treatment recommendations over the years, and wish now that the doctors would have suggested more. I received Chiropractic and Physical Therapy treatments off and on.

After I was rear-ended in a car accident 5 years ago, things started to change and progress. Not only do I have scoliosis, but I also have bulging discs from the accident and my spine is twisted, causing a "back bump" or hump. scoliosis x-ray 2021.jpgMy most recent diagnosis is "collapsing spine" and I have a lumbar curve of 60 degrees and a thoracic curve of 39 degrees. L1 and L2 are bone-on-bone and I have lost at least 1.5 inches in height. I had consultations with two orthopedic spine surgeons this year - the first instantly recommended surgery with fusion from T2-pelvis and the second suggested I try another round of PT. I opted for the latter, and after a few months, I saw the second surgeon again who now recommends surgery from T9-L5 with screws and rods being connected to the pelvis.

I am scheduled for surgery on November 30th and had my last visits with the surgeon and nurse this week - a 2.5 hour long video call with the nurse and a 2.5 hour visit with the surgeon at his office. I am looking forward to being able to complete everyday tasks (like laundry and washing dishes without having to lean on the sink) with little to no pain; but am nervous about such a major surgery.

I would appreciate any tips for surgery/recovery preparation, words of encouragement, and prayers as I navigate this process. Attached is one photo, and I will add more later.

Jen

scoliosis x-ray 2021.jpg

[jackieg412]

It looks like you have a plan. It also sounds like you have been prepared over the years for treatment. Keep reading from the forum and preparing yourself by staying as strong as you can. It will be a challenge and something always goes wrong. Hope for minor problem only.
From my experience at this time, many hospitals are short staffed and rushed in care. Check to see if someone can stay with you at first.

[Pooka1]

Hi Jen.

As I said before, I think you have done a stellar job preparing and understanding your case.

I agree with having someone stay with you as much as possible. Things like keeping track of pain meds, getting ice chips, etc. are things that the nurses generally can't do when you need them. Little things like that matter in recovery.

I stayed with both my daughters during their hospital stays, going home only a few hours a day to shower and see my other daughter. The surgeons expect parents to stay and so the pediatric rooms expect have sofa beds. Even when my mother and I stayed several days as my father died, I was able to stay in his room. My mother stayed on the sofa and I slept on the floor under his bed. He was in a double room and the other patient's daughter stayed with him. We had several people in that room for a few days!

You are young compared to many adult patients and that will matter in recovery. You will be a star. :-)

Sharon

[titaniumed]

Jen, I don't think you have much choice, I agree, you have to get this done....

They gave me Ensure drinks in the hospital, you might pick up 2 six packs now. The Magnesium Citrate Oral Soultion is important, pick up a bottle. It's a powerful laxative and will help prevent an unnecessary trip to the hospital should you get constipated from the Opioids.

Are you doing this solo? If so, you want to have somebody around at home. I did mine solo and hired a CNA. Since I had no problems with the toilet or showering, there wasn't too much she could do other than getting the things I needed, like a foam topper for the bed, going food shopping and driving me to visit my surgeon. I had her over for about 2 hours each morning. My surgeon had all the nursing and PT staff come to my home for 4 weeks everyday.

You will need your medications at home before you go to the hospital. You want to get those now. Keep those out of reach and hidden from everyone. For example: Percoset 7.5/325 100 pills per bottle @$45 is $4500 per bottle. I had a bunch of bottles over a few surgeries. Big bucks....I also took Oxycodone and other antibiotics. Buy a pill cutter from the Pharmacy...Do not precut pills, cut when taking them, and always get permission from your doctor before cutting any pill. Keep notes every day in a notebook with the times.

I got the walker, grabber and sock installer from the hospital through my insurance.

An electric blanket is a good idea. If I had to do it again, I would buy one.

I don't know if Linda has posted the UCSF Preparing For Surgery form, see attachment below...

You will do fine.....

Ed

[scoliosisstory]

It will be a challenge and something always goes wrong. Hope for minor problem only. Check to see if someone can stay with you at first.

Thank you, Jackie. I am praying for the best possible outcome and trying to mentally prepare myself for a possible issue. I would love it if my husband can stay with me! I was told that I will be in the ICU the first night (day of surgery) and in my own room after that (assuming all goes well) for a total of 5-7days in the hospital. I should be discharged to go home after that, but if I need more PT or pain management, I would be sent to an inpatient rehab facility. I'll hope that the worst that happens is that I have to go to rehab. One thing that will be tough is that I am having surgery approximately 1.5 hours from home in Austin, TX.

[scoliosisstory]

Hi Jen. As I said before, I think you have done a stellar job preparing and understanding your case. I agree with having someone stay with you as much as possible. Even when my mother and I stayed several days as my father died, I was able to stay in his room. You are young compared to many adult patients and that will matter in recovery. You will be a star. :-) Sharon

I'm sorry about your father's passing. I bet it was a blessing all around that you and your mother were able to be there with him!

Thank you so much, Sharon! I believe in taking an active role in my health and treatment. We're going to request that my husband be allowed to stay with me, at least the first couple of nights, then he will need to go from hospital to home and back probably daily. My surgeon and his staff said the same thing about my age...he said I am young and have good muscle tone, so I should do well. I think he might need glasses Seriously though, I was told that having surgery now as opposed to waiting another 10 years will help with healing due to the above reasons, and because it is also easier on the surgeon to correct at this point.

Jen

[scoliosisstory]

Jen, I don't think you have much choice, I agree, you have to get this done....My surgeon had all the nursing and PT staff come to my home for 4 weeks everyday. I don't know if Linda has posted the UCSF Preparing For Surgery form, see attachment below...You will do fine.....Ed

Thanks so much for the information and the form! That is all very helpful, I appreciate it!

I currently drink protein drinks/shakes because my protein level was low, but I had not considered Ensure drinks. I'll look into Ensure and maybe get some of that as well. Thanks for mentioning Mag Cit! I have used that in the past, and it's been invaluable! I'll definitely have to get a couple of bottles. I'm nervous about that part right after surgery...about getting the medication I need to be able to go, and to be able to get out of bed in time without having excruciating back pain.

My amazing husband will be with me as much as possible. He has been great about helping me get items that I may need at home to aide with recovery. He got a mini-fridge and grabber, and we are looking at getting a toilet seat raiser. We borrowed a transporter (sort of a smaller wheelchair that can be used as a walker and seat) and a walker from family; and will check into a shower seat, sock installer, and anything else I may need from/through the hospital. I'm glad you mentioned an electric blanket, too. I already have one (despite living in south Texas, I get quite chilly in the winter months), but I need to move it into the bedroom so that I can easily access it when I need it.

I was told that we will be given prescriptions while at the hospital that my husband can fill so that we will have them upon discharge, and prior to going home. Lucky for me, my husband is great about setting an alarm for when it's time to take medication (he did this for a previous, unrelated surgery) and staying ahead of the pain. You are right, it's a good idea to keep that kind of medication put up so that it is not accessible by anyone but my husband and I.

Did you have to go to rehab after surgery, or were the nurses and PT at home the alternative?

Jen

[titaniumed]

I was scheduled for rehab but I just wanted to go home.... return to normality, get on with healing. I was a bull in a China closet.... It was a lot of surgery over 2 days. My arm and shoulder were also broken. Only I do these crazy things...Ha ha The shoulder and arm had to wait....My humeral head was shattered like glass and it also had to fuse. It was kind of like when you break a rib and they can't do anything.

The nurses and PT people came out to my home which was great. Never the same person.....never the same nurse. Kinda like Hospice....Talk about cross training! I left the door unlocked and everyone showed up. "Ed, are you awake?" I never went to bed! I was warned about being a couch potato by my surgeon, as they want you moving a LOT. Move everything. I was an Energizer bunny in pain....walking constantly. Moving blood and nutrients into healing zones.

My surgeon wanted me walking outdoors and NO treadmills. This was printed in 1/2" black bold letters. There are a lot of particulates indoors.... dust, radon, chemicals, pesticides (If you use them) moisture, organic compounds, carbon monoxide, bacteria...viruses Etc. Just something to think about ...Google "indoor chemistry".

Walking sticks or ski poles are extremely helpful when walking. If a friendly dog approaches you on a walk, you have no defense should he jump up. The extra support with poles is worth it and it moves the arms.

Nutrition is super important after these surgeries. Dr Hu did a paper on this many years ago, and it's really hard to eat on opoids....and we need protein for healing. The nurses told me that sliced roast beef is the easiest way to get protein, and did that, but it was the whey protein smoothies that I used after opoid termination that really helped out. I lost 40# in 40 days and whey will put weight on... Anyway,

1/4 cup Whey Protein Powder
1 Yogurt
1 Banana
10 strawberries
30 blueberries
10 raspberries
10 Almonds
Blend and serve. Re-blend when needed. Small sips through the day. Buy fruit frozen its easier.

Sip on high quality water "all day long".....water dilutes.... It also promotes peristalysis in the intestines to keep things moving. It's the magnesium in Mag Citrate that draws the water out that's how it works.

The most important thing is attitude.....and patience. Knowing that you will get through this and that it's going to take a really long time....You will become your own master at pain, feeling out and understanding why pain happens. Using pain meds to counter surgical pains and the whole weaning process.... We trade our old scoliosis pains for new surgical pains and then we heal.

Never think back, always think forward....You do a reset and work with what you have one day at a time.

Ed

[scoliosisstory]

I was scheduled for rehab but I just wanted to go home. Nutrition is super important after these surgeries. The most important thing is attitude.....and patience. Never think back, always think forward....You do a reset and work with what you have one day at a time. Ed

I am so thankful for this forum and for all of you who have replied! You have provided lots of useful information; and I find it helpful to know what types of things to expect before, during, and after surgery.

I imagine you were ready to go home! I'm anxious about one surgery, much less two days' worth...ad with a broken arm and shoulder. That is a lot to handle at once and I imagine it was difficult to get up from a laying position in that shape. Since I will be 1.5 hours from home while in the hospital, I am going to want to get home as soon as possible!

I have had some intestinal issues lately where my stomach doesn't seem to be too fond of a lot of meat, and I can only eat small meals before I feel completely full. I have had to find ways to supplement my protein, such as protein shakes. I hope the hospital has good food, and I may need to meet with their nutritionist/dietitian to be sure that I am getting what I need nutritionally. I could stand to lose a few pounds, but as you said, nutrition is important when healing so I need to keep my calories/protein/etc. up.

Thanks for the tips. I am trying to mentally prepare myself for surgery and trying to think of things to have in the hospital and at home to help keep me motivated and thinking positively.

Jen

[titaniumed]

Since I will be 1.5 hours from home while in the hospital, I am going to want to get home as soon as possible!

Well....If they want you to go to rehab, do that. I lost my ability for pain injections when I left which was a painful mistake. Do not leave if you are not weaned down to orals. There is a big difference between injectables and orals.

It would also be a good idea to go to the dentist before you go in to scoliosis surgery.....You don't want to have a dental problem during your scoliosis recovery. Tell the dentist you are going into scoliosis surgery and they will fit you in.

I had several stool softeners along with Colace....it would also be a good idea to have some Pedialyte. This is good for re-establishing electrolytes after vomiting. Sip on it, it puts the fire out....One bottle is probably ok. You want to handle dehydration with water....you want to sip on water often. Sip all day long....If one has antibiotic associated diarrhea, you lose your water and you have to replace it.

Yogurt is good for re-establishing probiotics....the diarrhea and vomiting is hard on the digestive system and if your digestive system is not functioning properly, it's a struggle. It has to be maintained.
https://en.wikipedia.org/wiki/Probiotic

My scoliosis recovery had more to do with lower GI tract management than spine.

Eat wrong and you will find out. For example, my neighbor brought over some homemade chicken soup, (It was excellent) but it had pepper in it and that triggered off coughing. Coughing and sneezing can be scary in recovery especially in the thoracic. It's something we get used to in time when tissues heal.

If you take opioids, you will need an acid reducer. I took the regular Zantac.....Today, I use baking soda, 1/2 teaspoon in 6 Oz of water, stir well. It works instantly at neutralizing acids and its cheap.....

Ed

[jackieg412]

You may be able to go to rehab closer to your home. You can begin to search that out so that you are knowledgeable before hand. If you don't need it or choose not to go that is okay. You will need help and maybe you can line that up..
It is scary and difficult but doable.
Like baby steps but then ok.

[scoliosisstory]

I lost my ability for pain injections when I left which was a painful mistake. Do not leave if you are not weaned down to orals. Ed

You bring up a great point about the pain injections! I'll follow doctor's orders/recommendations but I am praying for discharge to go home from the hospital.

Actually my surgeon told me no dental appointments either 2 or 1 month prior to surgery (I don't recall which one), even a teeth cleaning. They said it could introduce bacteria and result in infection, which would cause the surgery to be rescheduled. I had to reschedule for March. I'm used to getting a cleaning every six months so I didn't really want to reschedule, but I would definitely rather reschedule than risk postponing surgery.

Are diarrhea and vomiting common after surgery? I typically have constipation while on pain medication, in addition to my usual constipation that I take prescription medication for. I also take Omeprazole for heartburn. I do typically eat yogurt (Greek yogurt) a few times a week so that should help with some of it and I'll keep that on my list and keep Pedialyte in mind should I experience diarrhea and vomiting. I love the idea of the baking soda remedy! Instant is definitely preferred over minutes to an hour. I am a bit anxious about getting my GI system back on track

As usual, you are a wealth of knowledge! I appreciate all of your responses!

[titaniumed]

Are diarrhea and vomiting common after surgery?

This is a tough question because there are so many factors. Opioids usually cause constipation. In my case, since I was completely stopped up down low, nothing stayed in my stomach and I would vomit. Usually it was water, or dry heaving.

I did a 4 day rapid wean and I had to hug the toilet for 24 hours vomiting after termination. Freezing and sweating. After I terminated opioids, the pain rose and about a day or two and then re-started on Percoset. Another 4 days later I tried quitting again, 24 hours of vomiting, then the pain rose again for about 36 hours and then dropped off quickly. I used to think this was cold turkey, I guess it's best to say it was a 4 day rapid wean. A very steep drop-off.

One doctor at UCSF stated that "any" medication can be weaned without "Hollywood" withdrawal effects in 5 weeks. Thats would be 20% per week. I am not sure which movie he was referring to. (smiley face) Maybe it was the movie "Ray" the movie about Ray Charles. Spacing out times is the easiest way to reduce....keep notes on all medications with times.

I don't know if Diarrhea is predictable. If it happens, you get dehydrated and that causes all sorts of problems. Drink water.

Keep your arsenal of stool softeners handy, and drink a lot of water. Water and walking help keep things moving in the intestines. Many ladies here like prune juice....

Keep in mind that I had a serious open abdominal procedure. If they TLIF your upper lumbar levels which is from the back, and ALIF the lowest lumbar, odds are going to be much better that you won't have to deal with all this stuff I had to do. But it helps to be prepared.

Eat very small meals throughout the day.

Ed

[scoliosisstory]

Keep in mind that I had a serious open abdominal procedure. Ed

Oh ok, I'm sure that makes a huge difference in how things begin working again. I'm having PLIF only (thank God!). It sounds like you went through a lot in surgery and had a long recovery. If you could go back, would you do it again?

I am hopeful that most of my pain will be gone and that I will be able to perform typical daily chores pain-free. Heck, even being able to sit in a chair at a restaurant through dinner without pain would be a huge improvement!

Jen

[titaniumed]

If you could go back, would you do it again?

Yes....I had NO choice, the pain was out of control at the end....When you think about going into a hospital and begging to be knocked out for a pain break, its time.

Even though a lot of adults wait with big curves, waiting too long is not a great idea with degenerative conditions. It makes the surgeries more complicated. I was lucky I got my foot in the door....If I had to do it all over again, I would do it at age 40.

On the other thread "I'm sorry I made the decision to have surgery", you should delete that post as it's a testimonial thread only, not for conversation. You can PM Pam and see if she replies, or read through all her threads.

This is not a great idea right now as you are focused on your surgeries next Tuesday.....With complications better to put the horse blinders on and stare straight ahead ignoring what could go wrong....Think positive, not negative, and get the job done. After waiting all the years for our surgeries, it becomes time. You made your decision.

After all the years of pain, backing out was not an option for me. There was a release in the last days, like a fish being reeled in that gives up. I walked in and paid my co-pay. An hour later I was wheeled up to the operating room. I had complete and total trust in my surgeons and all the people that do these things everyday.....

Trust and have faith and you will be ok....

Ed