I had scoliosis surgery 28 years ago when I was just 15 years old!!! It was such a long time ago, I hadn't ever heard of the condition, felt isolated, scared and received no after care what so ever.
On a positive, the surgery was successful, and I had a very normal, pain free life until I had children. My son was born 18 years ago when I was 25 (10 years post opp) and that was the first time I really experienced pain. However, it soon settled down and again, I had pain free years until my daughter was born 12 years ago. And that's when the pain started. At first, it was in waves, and I always put it down to muscular; it would bother me for a few months, and then it would settle down again.
However, this episode, started in December 2011, and it started in my lower back. A constant lower dull ache that just seemed to get worse. I developed hip pain, neck pain, a click in my shoulder blade on rotation, all in my left side of my body and suffer with constant headaches and Raynaud's phenomenon (blood restriction and pain to my feet which i am convinced is related).
I have battled with my GP for referrals to the hospital and was finally given a spinal injection in Oct 2012 for pain they say is due to a Disc Bulge. This has helped but i feel it is wearing off fast.
I have also seen a shoulder specialist who agrees there are definite problems in my shoulder and again used an injection for pain relief. I am seeing the Hospital Physio but am now getting so depressed and fed up. The pain is constant and I seem to get no rest bite.
I am convinced ALL my conditions (I have terrible stomach pains too) are all related to my scoliosis and my surgery with Harrington Rods.
I would love to hear form anybody who is suffering with similar symptoms to myself many years on from surgery.
Your story sounds so much like mine. I started research on pain years after scolisis surgery just recently. I had surgery in 1979, did great at the time, had 3 children between 22 and 31 years old, and led a "normal" life until about 2-3 years ago. I now have constant and unforgiving pain both above and below the rod. It includes sharp pains, dull ache (constantly), and burning pain. The pain management doctor is wanting to try the rhizotomy ablation now. I'm trying to find more people that have had that done before agreeing to that. I don't want to live on pain medication. It can be very depressing at times, but it helps to know that I'm not crazy and there are others who know how I feel.
Thanks for taking the time to reply Lisa, Its so nice not to feel like you can talk to other people in similar situations :)
I can totally relate to the pain above and below my rods.
I am currently trying to get back in front of a Scoliosis specialist here in the UK which is just such a long, ongoing battle.
Are you in the US? And do you mind telling me how old you are?
I have looked up Rhizotomy on the internet as I hadnt heard of it.
It would be really good to hear form people with scoliosis who have had this treatment.
Yes, I'm in the US. I'm 46 years old now. I have found relief for the upper part of back through Chiropractic treatment, but it is not effective on the lower back. I think I will go ahead with the Rhizotomy treatment and see if that relieves any pain in the lower back.
It can get really depressing at times, but it's just something that we have to deal with the best we can, I guess. Thank you for your reply.
I had scoliois surgery 23 years ago when i was 14. Ive had two children and two natural premature child births. I too have had constant pain and have Raynauds phenomenon. I was told years ago my neck was degenerated from over use due to where my metal rods are. T1-L4. I am a Massage Therapist and that has seemed to help me over the years to reduce pain. Injections unfortunately tend to put a band aid on the situation. I have everything pretty much all your symptoms except the headaches. I have scaitic pain too. Where did you have your surgery and who was your surgeron? Just wondering.