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Thread: Hello I'm on the other side.

  1. #1
    Join Date
    Jun 2009
    Location
    Los angeles
    Posts
    122

    Hello I'm on the other side.

    Hi EVERYONE,
    Well my surgeries were December 6th and 10 th and I came back home yesterday. to tell you the truth I am in a lot of pain and nothing seems to calm me down. Meds, etc. I can't really get in a confortable position and I am runing aout of air very easily.
    I hate this. I don't know if this is worth it at all. My back hurts and it is an an odd position, so it its my brace. I f I want to lay down everynght presses to my chest. My back in general is very tied and presses up into my diaprham. I don't know what to do
    I call Dr. Pashman yesterday and he said that I was having a panick attack...
    He barely saw me when I was in the hospital and everytime I told him thta this feels wrong, he said ahhh you look great!
    I am having really bad thoughts right now, and I am fully regretting this.
    Pilar

  2. #2
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Hi Pilar. After waiting so long for this surgery and having to jump through so many hoops, I am wondering if the excitement of finally getting the surgery means you didn't think much about the pain and discomfort associated with the early days after surgery. I hear what you're saying but this discomfort is probably normal this early out - you had a huge surgery. Everything inside your back is in a different position. It's scary if things don't feel normal. It sounds like your pain meds aren't doing the trick. Perhaps if they were reducing the pain a lot better, you wouldn't feel quite so awkward/uncomfortable/in the wrong position because you wouldn't be aware of it.

    Are you recuperating at home on your own? Do you have people around you to take care of you? I would hope you're not going through this on your own, because I feel all these worries would seem much bigger and more worrisome on your own. It's very early days for you, but if you still feel something's not quite right in another few weeks, I would certainly get back to Dr. Pashman and not be brushed off. When is your first follow up appt with him? X-rays might put your mind at ease.

    These first few weeks are not pleasant and all sorts of worries go through your mind. At the point you're at, I was still in hospital and I only had the one surgery.

    My suggestion is to see your GP and see if you can increase your meds just for the next week or two, to get over this difficult time.
    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

  3. #3
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265
    Hang in there, Pilar! Yes, it IS very early, and you will only get better as time goes by. Keep looking forward to where you will be after this is all done. Someday this will be a memory and you will probably be so glad you went through with it, like most of our friends here on the forum are. Keep writing and venting, and we will keep cheering you on!!
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

  4. #4
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416
    Pilar
    It is very hard to stay calm when your pain is out of control. Call your surgeon and let him know that your pain medicine is not doing the trick. The first weeks of recovery are sometimes rough but you will get through it. Your brace can be filed down if it is pressing on your chin or armpits. I had to have mine cut a little off of the top because every time I sat down it would press up under my chin and I felt choked. My brace guy did it. (for free). But your first step is to get that pain under control! Good luck Pilar and Merry Christmas ;-)))
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  5. #5
    Join Date
    Jan 2010
    Location
    Georgia
    Posts
    241
    Hang in there Pilar. Those first few weeks are really tough and I think we all wonder if we've done the right thing at some point during that time. Things do get better.
    Glenda
    Age 66 Georgia (63 at time of surgery)
    Bi-lateral laminectomy 2006
    Kyphoscoliosis, approx 38* lumbar scoliosis, stenosis, disk herniations, lower back and hip pain, w/radiating pain, stinging and numbness in legs.
    A/P fusion (T10-S2) 5/17/10 and 5/20/10
    Dr Yoon, Emory Orthopaedic and Spine Hospital, Atlanta, GA
    Pleased with outcome

  6. #6
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,158
    Pilar

    I knew this one was coming. You had very complicated surgeries. I was regretting it also, but knew I had to get through it and eventually it all turned out great.

    Everything will be ok, you just have to hang through this, itís the hardest part. Itís the ďsurvival modeĒ part of major surgeries. You can do this!

    The first few days are total hell. I was on Oxycodone and was switched to Percoset 7.5ís. and couldnít sleep more than 1 hour a day....The foam topper will help with sleep.... I paced quite a bit since sitting was so difficult. Walking is important....

    I hope you have someone there helping out....you need to eat.....Can you get in the shower? The heat feels good.

    Does Dr Pashman have nurses coming over every day? If not, ask to have them come over, they will do that. They came to my place everyday.
    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #7
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi Pilar,

    I am so sorry to hear you are having a difficult time. I completely empathize with you though, as I could have written your post when I was 10 days post-op. The first 2-3 weeks are complete hell. (I am almost 10 weeks post-op now so it is all fresh in my mind).

    I experienced all of the things you mentioned in the first 2 weeks: severe pain not well controlled, severe constipation which makes you miserable in so many ways, anxiety that would crop up at night especially, when I would think OMG what did I do to my back, etc. I went from having essentially no lumbar lordosis to having 90 degrees of lordosis, and it felt extremely unnatural at first. I am now getting used to it (at 9 weeks post-op), but it is a huge adjustment, and it is really easy to feel anxious and upset about how your back feels.

    I wonder if you are anemic, since you mention getting out of breath so easily. Might be something to ask about.

    Your back muscles have a huge adjustment to make, and I'm sure you have lots of internal swelling all through your back (I did, everybody does). All of this contributes to your back feeling so incredibly tight and stiff. This improves with time. Your doctor may allow you to lay on a heating pad, I still do this every afternoon.

    You got great advice from Ed, take hot showers if you can. They do help! And try to get outside even for 5 minutes a couple of times per day. Have someone go with you so you don't feel so vulnerable at first. Try to drink plenty of fluids, and see if you can increase your pain meds. A few days of visiting nurses would be helpful too I'm sure. Don't be afraid to keep calling Dr Pashman's office until you get your pain under control. Once your pain improves and your swelling goes down, you will be able to stand better, and this might improve the weird feelings in your back.

    I felt like absolute shit for the first 12 days, in pain and throwing up all day long too. I went back to the ER on night 10 and truly was afraid I could die, because I had such uncontrolled back and abdominal pain and uncontrolled vomitting. Amazingly though, by day 14 I had turned the first corner and things have improved tremendously each week since then. They will for you, too.

    Until then, please know we are all here pulling for you. Please post again soon and let us know how you are doing.
    Last edited by leahdragonfly; 12-19-2010 at 11:10 AM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  8. #8
    Join Date
    Mar 2009
    Location
    Sacramento, CA area
    Posts
    189
    Welcome home Pilar. I'm so sorry that you are having so much pain. Like others have said, you should get in touch with Dr Pashman and try some other pain meds. Yes, the first few weeks home are HELL. When you are so miserable its normal to question your decision to have this surgery. People ask me all the time if the surgery was woth it, and at 11 weeks postop I still can't say Yes or No because of my frustration of not being "normal" yet. I tell people to ask me at 6 months.

    I hope you have support at home, and like Ed said, a memory foam mattress topper. We all hope that you find pain relief soon!
    Laurie
    Age 57
    Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
    Thoracic curve corrected from 61* to 16*
    Lumbar curve, unknown measurement
    Disfiguring back hump GONE!!
    Dr Munish Gupta
    UC Davis Medical Center, Sacramento, CA

  9. #9
    Join Date
    Jun 2009
    Location
    Los angeles
    Posts
    122
    Thanks everyone! you truly understand me...
    I feel like every day gets worse for me instead of getting better...
    Today I woke up with a crhonic chest pain due to my ribs. They are pressing through the chest wall at the sternum... It really hurts. I am in Hell!
    This was a really bad idea and timing to do this... It's affecting my relationship with people and partner.
    I think I trade no pain and deformity for lots of pain. The correction was suppouse to be great. Dr. Pashman told me that I went from 100 degrees to 40 degrees approx. I am afraid that he focuses to much on the degree of correction and his achievement that In the pain and discomfort that I am. I am really out of breath with a lot of tietness and pressure on my right chest/breast. Really going out of my mind in here... It has only been a week and the pain and discomfort is getting worst. I don't understand. How did it get better for all of you guys. Ah, and nurses coming home are not an option for me...
    In hated that he discharged me only for 4 days post-op and me saying I don't feel well. who does that?

  10. #10
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    Pilar, I'm sorry you are going through this. I can't imagine why you weren't sent to rehab, where pain management is usually fine-tuned, after that big of a surgery. If I were you, I would make a very insistent call to Dr. Pashman to make adjustments to your pain medication, or even to the ER for more aggressive pain relief. Yes, the immediate post-op period is very hard, but it's not supposed to be unbearable!!
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  11. #11
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Discharged at 4 days post op? After such a huge surgery? I'm sorry, I know this sounds very emotional, but that's inhuman. I'm horrified. It takes longer than that just to fine tune your medication without anything else. To send you home to be cared for by lay people....it's just not right.
    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

  12. #12
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Quote Originally Posted by pilar View Post
    Thanks everyone! you truly understand me...
    I feel like every day gets worse for me instead of getting better...
    Today I woke up with a crhonic chest pain due to my ribs. They are pressing through the chest wall at the sternum... It really hurts. I am in Hell!
    This was a really bad idea and timing to do this... It's affecting my relationship with people and partner.
    I think I trade no pain and deformity for lots of pain. The correction was suppouse to be great. Dr. Pashman told me that I went from 100 degrees to 40 degrees approx. I am afraid that he focuses to much on the degree of correction and his achievement that In the pain and discomfort that I am. I am really out of breath with a lot of tietness and pressure on my right chest/breast. Really going out of my mind in here... It has only been a week and the pain and discomfort is getting worst. I don't understand. How did it get better for all of you guys. Ah, and nurses coming home are not an option for me...
    In hated that he discharged me only for 4 days post-op and me saying I don't feel well. who does that?
    Pilar,
    So sorry you are in so much pain. Is this because of your insurance that you were sent home in 4 days and can't have a visiting nurse, or is this the Doctor? I know some insurances won't cover rehab hospitals. It is unconscionable that your Doctor didn't get your pain under control before he released you from the hospital. I couldn't even figure our how to use my cell phone, much less use a computer on day 4. You definitely need more pain medication in my opinion. Call your Doctor now and if he isn't available, call his on call person. Don't wait. Sending you love and gentle hugs!
    Sally
    Diagnosed 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.

  13. #13
    Join Date
    Aug 2008
    Location
    Indianapolis, IN
    Posts
    416

    Angry

    Pilar,
    If you are having chest pain and shortness of breath, you should call your doctor right away. These are not normal symptoms in my opinion.
    May 2008 Fusion T4 - S1, Pre-op Curves T45, L70 (age 48). Unsuccessful surgery.

    March 18, 2010 (age 50). Revision with L3 Osteotomy, Replacement of hardware T11 - S1 , addition of bilateral pelvic fixation. Correction of sagittal imbalance and kyphosis.

    January 24, 2012 (age 52) Revision to repair pseudoarthrosis and 2 broken rods at L3/L4.

  14. #14
    Join Date
    May 2009
    Posts
    3,745
    so very sorry to hear how you are suffering, Pilar...
    most doctors/surgeons respond when a patient says they cant breathe!
    maybe if you call and emphasize that...sometimes you have to make a lot of noise to get the right attention...
    doesn't sound as if your pain meds are helping much...
    i am so sorry you weren't sent to a rehab!

    thoughts and prayers are with you for the worst to be over, and the healing to get easier...

    jess

  15. #15
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,158
    Pilar
    It was 7 days after your posterior....12/10-12/17 which was the same time I spent, and I ran out of the hospital as soon as I could,(my decision) and WAS rough when I got home....I went on orals when I got home and had a really hard time with the pain ...anteriors, especially if they remove bone hurt like heck. My ileus didnít help...Breathing is difficult, as moving everything is so delicate. Try to maintain, if you cant hang, go to the emergency room. Distress will get you in very quickly.

    Once again, the one thing that helped my bone and nerve pain was the hot 106 degree bath water. You have to watch your incisionís close as an incisional infection is something you donít want. I used an anti-bacterial soap after getting out of the tub each time in a shower, and changed my dressings daily. You should be getting your staples out soon, ask about this.

    The people in your life need to know that you just had a 10 level ďextremeĒ surgery. They need to understand that recoveries from these long A/Pís are tougher than anything they can possibly imagine.....and patience and a little understanding is needed. You deserve a little pampering right now. If I were in LA, I would be over there right now.

    Show them my x-ray, yours will look just like mine, as we are the same levels. It will help them understand the magnitude... everything has been moved, cut, and bone has been ground away. Your body is in overtime trying to heal, it hurts, and its tiring because it takes so much energy.

    This wasnít a bad idea, it was something that had to happen and no time is a good time. I know it is overwhelming, and feels so strange, but believe me, your going to get through this. Say this to yourself often, ďIím strong, Iím going to make itĒ. Your going to do this and everything is going to be just fine. I did.

    If you want to talk, PM your phone # to me. Iím here.
    Ed
    Attached Images Attached Images
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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