So scared I’m having Nightmares! On 10/19 & 20th in 2010 I had a double 80-degree curve (1 was a little bigger than the other) straightened down to 15 and 20 degrees (bones did not want to budge) with 38 screws, 16 fusions, many laminectomies, Harrington rods, & 2 cross links holding rods. This was from T4 down to S1. Surgery was with a good talking Dr. who I originally saw for a pain pump, but he talked me into this huge surgery saying he could fix my falling down, pain, and hump instead! This doctor no longer is allowed to practice in CA.
I almost died 4x with infection (wound vac for a month sucking it out) and I am still on antibiotics. My rods are now bent to about 50 degree+ curving out my back so that some of the hardware pushes the skin out into “bumps”, partly due to loose screws. I had to stop using the hard shell brace as it bled where each screw pressed out. X-rays and a CT locally were sent to UCSF (SAN FRAN) a DR. HU (anyone here of her?). She told me she will have to take all the hardware out and put new in plus add 2 more levels to Thoracic, plus a bolt (because one hole is too big for a screw) in front (through hysterectomy scar into Sacrum). I have up to 10 loose screws, 4 on top could hit a disc soon. I was also told the CT shows a couple of screws were changed during the initial surgery. I don’t know how that could be seen on the films. I may still, after 15 months, have the infection, although I’m on antibiotics as precaution, but she will have it checked out.
UCSF is over 8 hrs. from me & I don’t know if we can make the drive. We’re also loosing our home; had to pay for caregivers & my husband has no place to stay in San Francisco plus he needs a couple of surgeries himself, so he won’t be able to care for me this time as he did after the first surgery. 1st surgery was a horror and the people we got to help were pretty expensive and lazy. I fell several times thinking I could walk. I have no idea what we are going to do this time since we don’t even know if we’ll have a home. There also is no family either. We were debating on possibly moving to another state like Florida before surgery to get established in a small condo. If we go up to UCSF now our house may be sold to foreclosure before we could get back in a few months (operation plus rehab facility until I can travel), husband renting a room or something.
QUESTION: We were considering a move to FL but know of any great doctors for revision surgery even after searching this forum. Also I heard FL does not give out pain meds. Is this true? Many doctors told me that I have to be on pain meds the rest of my life. I am currently on, Opana long term & Hydromorphone HCL, or Oxymorphone HCL as breakthrough daily, Xanax or valium, and liquid morphine by mouth at night along with a sleeping pill if needed. I also found out that I now might have Rheumatoid Arthritis. I need suggestions; can people write directly to me? I hope everyone gets better.
ALSO: What questions should I ask the doctor for a revision surgery?
ReneeTina
I almost died 4x with infection (wound vac for a month sucking it out) and I am still on antibiotics. My rods are now bent to about 50 degree+ curving out my back so that some of the hardware pushes the skin out into “bumps”, partly due to loose screws. I had to stop using the hard shell brace as it bled where each screw pressed out. X-rays and a CT locally were sent to UCSF (SAN FRAN) a DR. HU (anyone here of her?). She told me she will have to take all the hardware out and put new in plus add 2 more levels to Thoracic, plus a bolt (because one hole is too big for a screw) in front (through hysterectomy scar into Sacrum). I have up to 10 loose screws, 4 on top could hit a disc soon. I was also told the CT shows a couple of screws were changed during the initial surgery. I don’t know how that could be seen on the films. I may still, after 15 months, have the infection, although I’m on antibiotics as precaution, but she will have it checked out.
UCSF is over 8 hrs. from me & I don’t know if we can make the drive. We’re also loosing our home; had to pay for caregivers & my husband has no place to stay in San Francisco plus he needs a couple of surgeries himself, so he won’t be able to care for me this time as he did after the first surgery. 1st surgery was a horror and the people we got to help were pretty expensive and lazy. I fell several times thinking I could walk. I have no idea what we are going to do this time since we don’t even know if we’ll have a home. There also is no family either. We were debating on possibly moving to another state like Florida before surgery to get established in a small condo. If we go up to UCSF now our house may be sold to foreclosure before we could get back in a few months (operation plus rehab facility until I can travel), husband renting a room or something.
QUESTION: We were considering a move to FL but know of any great doctors for revision surgery even after searching this forum. Also I heard FL does not give out pain meds. Is this true? Many doctors told me that I have to be on pain meds the rest of my life. I am currently on, Opana long term & Hydromorphone HCL, or Oxymorphone HCL as breakthrough daily, Xanax or valium, and liquid morphine by mouth at night along with a sleeping pill if needed. I also found out that I now might have Rheumatoid Arthritis. I need suggestions; can people write directly to me? I hope everyone gets better.
ALSO: What questions should I ask the doctor for a revision surgery?
ReneeTina
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