In my 40s with questions!

[Kudzu]

Hi Alice,

My story is similar. Was diagnosed with congenital scoliosis when I was 11 yo. Had surgery almost immediately, a fusion at two levels with bone from my hip & no hardware. Had no back pain before surgery nor any after recovery. At 42 yo found I was shrinking & within two months the pain started. Have no records from my surgery, no idea what my curves were, didn't even remember what levels the fusion was done on. Hospital employee actually laughed when I called to ask if they still had my records from my 1975 surgery. One thing Mom & I both remembered was that at a follow up visit when I was around age 13 yo the surgeon said he thought I may need a second fusion because of the possibility one of my vertebrae may slide sideways off the one below it & that could damage my spinal cord. Over the years I'd convinced myself I had totally misremembered that.

So at age 42 yo I had my first xrays in over 25 years & to my utter shock I saw quite clearly that one vertebrae actually had slipped sideways quite a bit. Because of radiculopathy that did not respond to physical therapy I had an MRI. I've got disc degeneration, facet hypertrophy, lateral listhesis of 1.5 cm, & stenosis at L3-L4. What is amazing is that I don't hurt more than I do & that I actually made it this long without pain. I have been truly blessed.

Good luck with your appointment!

[AliceL]

Hi Kudzu,

Thanks so much for writing me! I did a search using "fusion" and "1977", and found so many many people with fusion surgeries done in their teens and now in their 40s, I'm so very glad that I finally post on this site!!

So many things that they talked about have been feelings, both emotional and physical, I've been having for soooooo long, I sure wish I had come back onto this site a lot sooner!! It's amazing to learn that there are so many with our conditions out there! I feel like I have found so many new friends who truly understand! ^-^

I have asked my primary physician to see if I could get a MRI done before seeing the scoliosis specialist.

Thank you for wishing me luck with the appointment!
Alice

[rainbow2010]

I had an MRI done, but they couldn't do it where my rod was. The steel rods cause distortion. If that area needs to be checked, I have to have a CT scan. You might be better off getting a CT scan before trying an MRI.

[AliceL]

Further degeneration... causing paralysis??

Hi Rainbow, nice to hear from you again!

I actually did not have a rod put in, only fusion was done. That was what the doctor told me when I had my x-rays back in 1995 and 1997 at Kaiser. I did read in the forum that having a rod will distort the images.

I was talking to a co-worker yesterday who's had many many spinal problems in the past few years that have been giving him great pain. In fact, he might be going into surgery very soon. He doesn't have scoliosis, but the information he told me, about disc, stenosis, etc., was helpful in my continued understanding of my condition. He mentioned two doctors he's seeing that are actually listed in the scoliosis specialist listing that Linda sent to me!

Though from reading the postings, I know at this point mine has not progressed to the point where I would need further surgery, but it's always good to have more info.

One question I've been wondering though... and I haven't seen it mentioned, yet. Have there been cases you (others?) know of that, with further degeneration of the spine as we age.. caused paralysis? Bad as it was, that was the first question that popped into my head, when I started having my pain/discomfort last week...

Thanks, Alice