Susan's surgery at UCSF with Dr. Hu on 19 and 22 March, 2013

[Irina]

Irina, I'm still using my cane when I walk outside of the house. I still feel a little wobbly so it's nice to have, and my surgeon likes me to use to keep proper posture. It's also kind of nice to have a visual cue - people give me lots so space and are helpful when they see the cane. Not entirely sure when I'll be able to put it away...

In terms of other things to look forward to, I drove for the first time today! It was only 5 mins to the grocery store on a Sunday morning when the streets were quiet and it went fine. I was surprised by how exhausted it made me and how weak my muscles still are, so I will leave the driving to my husband for the time being.

Congrats on the driving, aillens! Yes, it's better to leave the driving to our husbands and take it easy, but it's a good to know that you can drive if need be.

[JenniferG]

Susan! 2.5 inches is amazing! You must feel like you're walking on stilts!

Regarding pain meds at 3 weeks, I was on the full dose, I didn't start weaning until 6 - 7 weeks.

You seem to be doing great, considering your two gruelling surgeries.

[Susie*Bee]

Ditto what Jennifer said, Susan. You are doing amazing!!! And you, too, aileens!

[susancook]

Susan,

You have a good sense of humor. Love your story about the ants!!

Glad to hear you are progressing well. Could the incontinence be related to the diuretic? Hopefully it will go away completely now. Your body also has to flush a lot of fluids post-op. I had bed sweats and my hair would be literally soaked. (And I am not in menopause!)

The fact that you are already walking farther than pre-op sounds very promising to me! Keep up the good work.

Best,
Evelyn

I wake up soaked most of the time, not from hot flashes. My hair is also soaked. Thought that it was just me. Susan

[susancook]

Funny things they I said in the ICU

My daughter has shared some of the funny things that I said when she stayed with me in the ICU. Apparently, I had a British nurse who asked me what I wanted to drink with my pain meds. I told her a beer. She brought me a cranberry juice and I quickly downed it and told her that it was "great beer". Later, the nurse tried to establish whether I was oriented and when she asked me where I was, I told her an "English pub" drinking beer. At least everyone had a great laugh out of it.

I remember the marching ants really well. At first, I told them that the hospital was dirty because I saw bugs. I tried to pick them off of the covers. While they finally convinced me that I was imagining the ants, I could still see them marching around the floor. There were a huge number of black and white ants. I actually find them amusing.

My Son told stories tonight at dinner about visiting me in the ICU. I had just finished 8 hours of surgery and my hemoglobin was 5.4, so they started 2 units of blood. When he arrived, I was sobbing with my hands covering my face. He called the nurse who insisted on asking me my pain level from 1 to 10. I just kept sobbing. She returned with some powerful iv push pain meds, and shortly thereafter, when I relaxed and stopped sobbing and was higher than a kite, she asked me my pain level. After I couldn't figure it out, my son said that it "was not an existential question, and that I could just say small, medium, or large". I continued to say, "I can do this" over and over, but never did. Then I did a Hawaiian hula in bed and sang, "somewhere over the rainbow", then went to sleep. Unsure what the nurse wrote down, but that sounds like a zero pain to me.

Susan

[susancook]

Last night was a bummer. About 6 pm, something said made cry and the dam broke. I don't remember others talking about crying once they got home. I am better today and went out to the gardens in Berekely. I slept well afterwards, and now feel good. Wonder why I had such emotional lability? I think that I might still be anemic.
Susan

[golfnut]

Do not worry. It's definitely the drugs. I am always pretty upbeat by nature. There was one day or more that I just started crying after my surgery and I thought what the heck am I doing? Many people have posted about being extremely emotional after surgery due to the meds.

[Irina]

Karen is right. I remember other people saying that they were crying a lot - it's drugs. And I am sure your husband and son understand it.

[susancook]

My family asks me if I am depressed. I do not think that I am, as I am truly pleased with the surgery, but to get everyone to quit asking me about being depressed, i agreed that i was depressed. Now that I read your comments, I agree that it is a combination of things, mostly the drugs.
Thanks for your support. I feel that there is an awesome group of people going along with me on the journey. I cannot thank everyone enough. T here are 2 things that I have found out: that I am very surprised how pleased I am with the surgery and secondly, how much work recovery really is. While every day is getting a little bit better, it is so slow. And it is blurred by drugs. And I worry every day that I am not taking enough precautions with my movement and that my back will not fuse.
Bye, I am so tired, Susan

[JuliaAnn]

Susan, you are doing just fine. The first two months of recovery seem to crawl by at a snail's pace. I remember thinking I would never get better and it was so frustrating. But during that time, cell by cell the bones were fusing and getting stronger. I finally noticed a difference in recovery during the third month. And then the fourth month had some big changes. From then on, the recovery seems more rapid. It's just the first part of recovery that seems to drag on forever. Hang in there. You're getting through.

[Confusedmom]

Yep, it's the drugs. And more specifically, withdrawal from the drugs. If you are cutting your amounts or extending time between doses, that can bring it on. I am totally paranoid about the withdrawals; that's one reason I weaned super super slowly. If I did it again I'm wondering if it would be better to just be faster and get it over with. Anyway, you sound like you're doing great, and this is all just part of the process.

Evelyn

[aileens]

Susan, I had tons of crying bouts while I was on the narcotics - they are CNS depressants so its not surprising if you seem depressed. My mood improved immensely when I quit OxyContin after 6 weeks and my recovery seemed to take a big leap forward as well. Now I'm just crying watching the news here in Boston after what happened at the marathon - while I still have a fair amount of pain that Tylenol does an ok job of managing (along with lying down), I can't imagine what recovery will be like for the injured.

In any case, it's nice to hear that you're so pleased with your surgery. It wasn't until recently when I realized that I can walk for 2 miles without having any sciatica pain that made me think that this was all for the better. I got quite good cosmetic correction and 2 to 3 inches of height, but oddly enough I actually wasn't straightened out all that much. Then and again I had a very large and stiff curve that should have been fixed 25 years ago, so I trust that my surgeon did the best he could while keeping me safe.

[susancook]

Aileen's, Julie Ann, and Evelyn, thanks for your reassurance. I realize that the Narcotics are needed to get me moving. However, they are super sedating, and decrease my energy and i feel tired. At 3.5 weeks after surgery, I doubt that I could do without them. I took 8 MGM of Dilaudid every 3 hours in the hospital when I left, and now feel ok with 6 MGM most of the time. Sometimes, I go up to 8 again. Drugs are a win-lose situation, but without them, I would be toast.
Thanks again for adding some clarity as my mind is foggy now. It is frustrating that I cannot remember words sometimes.....drugs.......Susan

[loves to skate]

Susan,
I laughed at some of your posts. I heard repetitious music while on drugs. It was rather annoying. I am glad to hear you are getting stronger and better each day. Recovery really is a challenge and at my age, everyday is a challenge. My husband and I celebrated our 50th wedding anniversary last weekend and then our granddaughter and her mother came for a visit, so I didn't get to the computer for several days. However, you have been in my thoughts.
Having lived in the Boston area for 34 years, I feel a real kinship with the suffering and sadness of the people there in the aftermath of the terror bombings. I hope they find the perpetrators and throw the book at them.
B-Strong Boston.
God Bless you Susan.
Sally

[Wish2bstraight]

Here in Boston area

First, I want to say that by now everyone probably knows that the Boston Marathon bombers are known. At this posting one is dead and the other is being sought. They are brothers originally from Russia. Anyway,onto scoliosis talk. Susan, after my surgeries, thanks to the drugs I had very unusual looking people visiting me while I slept. This lasted until all The anesthesia was out of my body.

It took me a while to come off all the meds. The only problem I have is when I sleep, I have pain in my buttocks that wakes me up and I have to change position, every hour. As far as my posture is concerned, I still cannot stand up completely straight up. Pt is working very hard with me. Right now with the way I stand and walk I feel like an 80 year old woman walking with a load in my pants. I am only able to walk a half of a block, and I used to be able to walk an hour before my rib hump would start to hurt. On the good side, I am more even than I have ever been, and my husband is is excited about my new figure.

I am going to the doctor next week, and I am curious to see what he has to say about my restrictions. Every few days I find that I am more flexible and able to do more, except walk.