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Started by Bettercalldarthmaul on 07/25/2019 5:15am

First time posting. Diagnosed with scoliosis last year. Had a whole bunch of issues breathing and movement, turned out I had 5 bulged discs with one narrowing my spine. I am a 28 year old male with a 2 year old son. Being a first time parent hasn't helped. It's been 5 months waiting on a referal for a physio therapist. I got okay for a couple weeks, tried exercising more but now it's flared up really bad again. I changed clinics out of frustration, got a new DR, and what it took months for the last DR to do, this one has organized to occur within days. I guess I am a little too nice or easy going, but with the way this last DR at the clinic has behaved I feel neglected. I am glad I can move on now.

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Sorry for all you went thru. My age is 54, diagnosed at age 10. First surgery 1996. I suffered through 14 surgeries that did nothing to solve my crooked spine. (I suspect due to the fact that I had incredible medical insurance☹) A nurse at the hospital that was doing yet another set of pre admission testing for me recommended a new surgeon, specialist in spine deformities. I got an appt. with him in a week. At my first visit they took several full length spine films that no other Dr had done. I was in shock when I saw my 2 curves, one was 54 degrees, I knew I finally had the answer to why I was in so much pain!
He took a full set of films on me after that, which unfortunately had me bent like a pretzel, that literally made me cry. The Dr. said I needed surgery right away because if not, I would soon be in a wheelchair. He made me feel so comfortable, gave me all the facts, then did my pre-OP bloodwork and before I knew it I was on the operating table within 2 weeks!!

It was a very extensive surgery lasting 14 hours followed by 2 days in ICU under deep sedation. I went home in a brace from my neck to my thighs, plus 30 lbs of excess fluid. Thankfully I had a husband that could watch over me, as I could do nothing. I had visiting nurses coming 3 times a week, and had a PIC line placed to give myself IV antibiotics for a few months, and they followed me to be sure the recovery went well. I won't lie, it was a difficult, lengthy recovery, but after 6 months I was out of my brace and taking a few steps in my driveway.
I ended up fused all the way from C1 down to my pelvis with with 2 full length rods with 45 long screws. I considered myself extremely lucky that the nurse had sent me to him, since not 1 other Dr even bothered to take full length spine films. Fast forward to now, 3 years later, and I had to undergo 2 more surgeries with that Dr. due to a few complications. This week he told me I needed yet 1 more surgery since slowly over the past 2 months I could no longer stand up straight. Along with quite a severe amount of pain and daily headaches and low back issues, I had flatback syndrome. I will be having my 4th surgery with this Surgeon next month. (Total of 19 surgeries). Am I nervous? Not much really, as I have extreme confidence in my Surgeon and his helpful staff. So, facing yet another long procedure to cut through my rods, remove a wedge of bone from several vertebrae, and replace the fixation rods, I should be able to again stand straight, and hopefully walk a little better. I have been on several different opioids to control my around the clock pain, and most likely will be for the rest of my life. Despite all this, I am grateful to my orthopedic surgeon for finally after many, many years giving me back some quality of life again.
Why am I telling you all this? To give you hope and faith that you will also find an incredible surgeon as I did. Yes, it has been a very long, painful road back to semi-normal living, but so very worth it. I have been on S.S. Disability since 2007, unable to continue my career as a surgical assistant standing for hours in the operating room, but I managed to work 25 years so my monthly income is a very fair amount. I am blessed with a wonderful husband that does everything in his power to help me have a rewarding, comfortable life. (I ended up disabled just a few months after we married in 2006) He has stood by my bedside through every single surgery, and nursed me back to health.

Please do not give up! I know it's difficult and frustrating waiting to find the best surgeon for your condition,but it is so worth it in the end. I trusted that God would eventually help me along the way. My faith kept me hopeful, and got me thru many painful days. I was taught that The Lord never gives us more than we are capable of dealing with, His strength has always kept me optimistic, and believing I would survive anything He sent my way.
I pray that you too will find a miracle working surgeon as I did. My faith, and my supportive friends have kept me looking forward, and I appreciate my good pain days that allow me to live my life happily.
I would be happy to answer any questions you may have, and I encourage you to never give up hope. Please feel free to respond to my story if you think i could be of any help, I know that eventually you will receive an answer to your prayers, and once again enjoying your day to day life, especially with your son.
(I suggest you consider adopting a shelter animal that desperately needs a forever home. My Maltese Rocky is such a comfort, as he lays at my side sleeping, and gives me so much love and appreciation constantly. There is nothing like the unconditional love of an animal and he is truly my sidekick and best friend every single day)
I wish you hope, happiness, and a peaceful quality of life, and PLEASE NEVER GIVE UP!!