Originally posted by aileens
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Susan's surgery at UCSF with Dr. Hu on 19 and 22 March, 2013
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I am stronger than scoliosis, and won't let it rule my life!
45 years old - diagnosed at age 7
A/P surgery on March 5/7, 2013 - UCSF
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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.Surgery March 3, 2009 at almost 58, now 63.
Dr. Askin, Brisbane, Australia
T4-Pelvis, Posterior only
Osteotomies and Laminectomies
Was 68 degrees, now 22 and pain free
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Ditto what Jennifer said, Susan. You are doing amazing!!! And you, too, aileens!71 and plugging along... but having some problems
2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago
Corrected to 15°
CMT (type 2) DX in 2014, progressing
10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring
Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me
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Originally posted by Confusedmom View PostSusan,
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,
EvelynAdult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis
2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
2018: Removal L4,5 screw
2021: Removal T1 screw & rod
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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.
SusanLast edited by susancook; 06-25-2014, 12:12 AM.Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis
2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
2018: Removal L4,5 screw
2021: Removal T1 screw & rod
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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.
SusanAdult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis
2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
2018: Removal L4,5 screw
2021: Removal T1 screw & rod
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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.Karen
Surgery-Jan. 5, 2011-Dr. Lenke
Fusion T-4-sacrum-2 cages/5 osteotomies
70 degree thoracolumbar corrected to 25
Rib Hump-GONE!
Age-60 at the time of surgery
Now 66
Avid Golfer & Tap Dancer
Retired Kdgn. Teacher
See photobucket link for:
Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
Before and After Picture of back 1/7/11
tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
http://s1119.photobucket.com/albums/k630/pottoff2/
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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.I am stronger than scoliosis, and won't let it rule my life!
45 years old - diagnosed at age 7
A/P surgery on March 5/7, 2013 - UCSF
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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, SusanAdult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis
2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
2018: Removal L4,5 screw
2021: Removal T1 screw & rod
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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.1973 Age 15 diagnosed with scoliosis but told too old for surgery.
2001 age 43 told too old for surgery, did physical therapy & traction.
2001 to 2008 Intermittent use of home traction machine and TENS unit.
2009 traction no longer effective - physical therapy.
2011 More physical therapy. 2012 Collapsing scoliosis - MRI before surgery
At age 53, surgery on October 2nd, 2012 with Dr Hey
Fusion with titanium rods and bolts from T1 to pelvis.
Post op x-ray
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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.
Evelynage 48
80* thoracolumbar; 40* thoracic
Reduced to ~16* thoracolumbar; ~0* thoracic
Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
Not "confused" anymore, but don't know how to change my username.
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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.
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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.......SusanAdult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis
2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
2018: Removal L4,5 screw
2021: Removal T1 screw & rod
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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.
SallyDiagnosed with severe lumbar scoliosis at age 65.
Posterior Fusion L2-S1 on 12/4/2007. age 67
Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
New England Baptist Hospital, Boston, MA
Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/
"In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.
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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.
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