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lisaplatano
12-05-2009, 04:53 PM
Hi. Iv never posted anything before, but Im desperate and need advice. I had Scoliosis surgery in 1990.My spine was in a backwards S shape, a 36 degree curve on top and a 58 degree curve on the bottom. My parents were terrified because it happened so qickly and advanced severly within a matter of 6 months.My spine was fused from T5 to L5, I have 2 harrington rods on the right and left side. The surgery was done at the Shriners Children Hospital in Tampa Florida. My Pediatric Orthopedic Surgeon was Dr. Kenneth Guidera, And he was amazing they all were, with me my parents, my siblings. The surgery was successful, I walked 24 hours later, left the ICU after 48, and went home 4 days later. Dr Guidrea was the best Doctor ever. I always felt that he truly was concerned, he was very patient and explained everything, and took time for us to understand and be comfortable with everything. I was released from the Shriners care on my 18th birthday. Yet, Dr. Guidera saw me several times after. I got in some car accidents, and while I was pregnant and after my Daughter was born.

I was always fine, I have had aches and pains like anyone, nothing I couldn't tolerate, or just ignore. After I had my son in 2007, something has changed. I have never been in this much pain. And somedays its hard to walk. Some days my left hipbone does not want to function, my tailbone feels broken, it just aches deep inside my tailbone. Sitting hurts, lying down hurts, walking hurts. I cant ignore it, its interfering with daily household chores. I feel the pin in my spine between my shoulders, and the pain radiates from the pin into each shoulder, sometimes into my neck. I feel the ends of the pins or the rods stabbing into my muscles more than ever.

Oh I could go on, but its all worse pain. And Dr. Guidera is in Missouri. I have never really seen anyone else for my back. At first some Orthopedic doctors I called said they did not want to see me because they did not do the surgery. Now the one that I got to accept me as a patient I have not met. Am I crazy for wanting to meet the doc first? I want to decide if Im comfortable with the doctor enough to allow him to treat my back, is that wrong?

Its a frightening feeling, and I am scared. I would like a doctor that cares enough to take time with the patients, not rely on nurses and assistants.

Thanks for letting me rant.

Lisa

JenniferG
12-05-2009, 05:24 PM
Welcome to the forum and I'm so sorry that your pain brings you here. No, you are not crazy for wanting to feel comfortable with your surgeon. Some people get second, third and fourth opinions and more until they feel sure that this person will give them the best result. This is your spine, and your future, so take your time and find the surgeon in whom you'll feel confident.

You don't mention that this current dr. has run any tests. What have you had done in the way of tests? What does he say is causing your pain? What does he intend to do? You need a surgeon who does lots of revision surgery, in other words, a very experienced specialist. Not just an orthopedic surgeon.

There are many on this forum who've had revision surgery who can give you good advice and maybe help you out by recommending a surgeon in your area. Hopefully you won't have long to wait. Best of luck, Lisa.

lisaplatano
12-06-2009, 10:39 AM
I have only been to this new surgeon 2 times, still have not met him. The first visit was to get established as a new patient, the second visit his assistant did an X-ray and ordered an M.R.I. and a Cat-Scan for 2 weeks from now. And I kept asking his assistant questions to which her reply would be, "We have to ask the Doctor." When I scheduled the appointment in October, I told them I was particular about who treated my back and I wanted to meet the Doctor first. I have a list of questions Im concerned about that his assistant cant answer, and I have not seen the doctor.
And they keep pushing pain management. I think Pain management is just saying, "Sorry, we cant help you, take narcotics." Not that Im against pain medications, I do use them. I just want to be the way I was for 17 years after my surgery. I never took anything other than motrin. Same after I had a C-section with both my kids, I didn't take the narcotics because I was breast-feeding. I actually have been relying on that script now to relieve the pain at night mostly.
Thank you for replying. It feels good to know Im not the only person in the world with scoliosis. I really like this web-site.

LindaRacine
12-06-2009, 11:05 AM
Hi Lisa...

You should definitely meet the doctor first. I would like to encourage you to try to find someone who has a lot of experience in treating patients with prior scoliosis fusions. Unfortunately, really experienced surgeons are relatively rare. Where are you located?

You'll find a whole population of people who have had similar problems, in this YahooGroups forum:

http://groups.yahoo.com/group/Flatback_Revised/

Regards,
Linda

lisaplatano
12-06-2009, 01:05 PM
I am in Brevard County Florida, in the city of Palm Bay, on the east coast. I went to Tampa which is on the west coast when I was a child, to the Shriners hospital for Children. Dr.Guidera, who preformed the surgery, met us and talked with us before the first x-ray was ever taken. I know I was a child then but shouldn't all patients and doctors have a similar relationship. My father suffers from COPD I see the time his doctor puts in with him. She is very concerned with his comfort level with her and her medical opinions for him. I want the same treatment.

Thanks

JenniferG
12-06-2009, 01:42 PM
I would be annoyed if I had two appointments and had to wait for a third to see the doctor for the first time. It's not the best way of handling patients, however, you've come this far, and it won't be long before you do see the surgeon and hopefully he can answer some of your questions.

But I'm with Linda, I think tons of experience in revision surgery is what you should be looking for. This dr. may be that person, but if not, don't feel badly about looking further, it's your right.

In my opinion, the skill of the surgeon determines the outcome and you want the very best possible, up to date, experience in a surgeon.

joyfull
12-06-2009, 04:50 PM
Hi Lisa. I also think you should do more research and find out if this surgeon has experience doing revisions. You may have to go to Tampa or Miami. People travel distances to get a very experienced surgeon; it can make a tremendous difference in the outcome. Maybe you can find some people in Florida who have had the same issues.

How about contacting the first sugeon, whom you loved, and who is now in Missouri, and asking for a referral in Florida?

I am having surgery for the first time in June, have gotten two opinions, and may be getting one more. And they are all top surgeons! You deserve the best. Good luck! Joy

lisaplatano
12-07-2009, 10:32 AM
Your right, Dr. Guidera was wonderful, and I know he is still with the Shriners hospital in Missouri. He's the chief os staff of the Orthopedic department there. Also from what I have read about him he travels to Armenia and other countries preforming and teaching about spine surgery. He probably could refer me to some-one.

When I had my surgery it was very emotional for my whole family. And now we are in a way re-living the uncertainty. My Daughter, who I am happy to say has the most beautiful, perfect back I have ever seen, has never seen me popping so many pills, either pacing or lying around with the heating pad. My husband is terrified, its effected us and our alone time together. Then to have so much trouble finding a doctor. And you are all right, My kids, my husband, my parents and I deserve the best treatment from the best doctor.

I will just have to be patient and search outside my area. Thank-you all again