Looking for physician recommendation, SoCal

[Megan B]

Hi everyone, I'm new to this group but wish I had found it a long time ago, what a great community and resource for those with scoliosis! I had Harrington rods put in 20 years ago at age 15, fused from approximately T1-L2 (don't know the exact numbers, this is my best guess/memory).

I've always dealt with pain and injury at both ends of the fusion but have learned over the years how to treat those spots carefully to avoid significant problems. However 6-9 months ago I started experiencing persistent ongoing pain throughout my entire back, sometimes extending through to my shoulders, upper neck, and hips. It's almost like every muscle connected to my spine is suddenly ridiculously prone to injury. All it takes is quickly looking over my shoulder while driving or carelessly leaning over to pick up a shirt off the ground or (heaven forbid) picking up one of my kids, and I'm in pain for days while the "injury" slowly recovers.

The speed with which I started experiencing all of this, and the wide range of muscles involved, makes me wonder if it's possible something has shifted with the metal in my back. I've had no back surgeries since the original one in 1994 so I would assume everything is pretty much locked in place by now, but just in case maybe a consultation with a specialist (and my first spine xray in 15 years) might not be a bad idea. Can anyone recommend a very good adult scoliosis Harrington rod specialist in southern California? San Diego preferred but I can travel to somewhere within driving distance.

Would appreciate any advice, thanks in advance!

[LindaRacine]

Hi everyone, I'm new to this group but wish I had found it a long time ago, what a great community and resource for those with scoliosis! I had Harrington rods put in 20 years ago at age 15, fused from approximately T1-L2 (don't know the exact numbers, this is my best guess/memory).

I've always dealt with pain and injury at both ends of the fusion but have learned over the years how to treat those spots carefully to avoid significant problems. However 6-9 months ago I started experiencing persistent ongoing pain throughout my entire back, sometimes extending through to my shoulders, upper neck, and hips. It's almost like every muscle connected to my spine is suddenly ridiculously prone to injury. All it takes is quickly looking over my shoulder while driving or carelessly leaning over to pick up a shirt off the ground or (heaven forbid) picking up one of my kids, and I'm in pain for days while the "injury" slowly recovers.

The speed with which I started experiencing all of this, and the wide range of muscles involved, makes me wonder if it's possible something has shifted with the metal in my back. I've had no back surgeries since the original one in 1994 so I would assume everything is pretty much locked in place by now, but just in case maybe a consultation with a specialist (and my first spine xray in 15 years) might not be a bad idea. Can anyone recommend a very good adult scoliosis Harrington rod specialist in southern California? San Diego preferred but I can travel to somewhere within driving distance.

Would appreciate any advice, thanks in advance!

Try Sam Bederman at UC Irvine.

[titaniumed]

Hi Meagan

Welcome to the forum!

Just wondering where you were done in 1994? Was that in San Diego?

Ed

[Megan B]

Try Sam Bederman at UC Irvine.

Thank you Linda! Another member emailed me with the same recommendation so Dr. Bederman is definitely my go-to choice at this point. Appreciate the advice!

[Megan B]

Hi Meagan

Welcome to the forum!

Just wondering where you were done in 1994? Was that in San Diego?

Ed

Hi Ed,

Yes my 1994 surgery was in San Diego, done by Dr. Browning at Kaiser. Although I don't have much to compare to the surgery seemed to be a good success, I had a nice normal recovery and limited problems until now.

I was looking through the links below your name and the rib hump link caught my eye. I realize this isn't the right sub-forum for this question but do I understand correctly that you used to have a more significant hump, but it was somehow altered later? Just curious because I have a very significant rib hump. Thank you! =)

[golfnut]

Surgery took care of my rib hump. I had been extremely self conscious of it, especially when bending over for golf. I love that it is gone!

[titaniumed]

Most of us have some sort of rib hump since that comes with the rotation that happens with scoliosis. With todays modern hardware, they do have the ability to reduce our humps through de-rotating or uncorking our spines. This is apparent not only through rib humps but through CT scans...My post CT scans still reveal a large amount of rotation, and I did feel the positive effects of the correction after my surgeries....My EMG’s had to be going haywire!....almost like a lightning storm in Florida! If you lock up your doctors laptop, and he pulls the battery to reset it, you know its bad. (scoliosis forum humor)

I had an upper right hump and a lower left hump in my lumbar with my “S” curve. The lower hump is completely gone,(lower spine) and my thoracic hump reduced quite a bit. I don’t really look back there much, so it doesn’t matter much. Major pain forced me into surgery....and I was very lucky.

If its been 15 years, it would be a good idea to visit and shoot some x-rays to take a peek. If you made it 20 years, you have done well....

You know that revision surgery is serious surgery.....and of course your rib hump situation can only be answered by a scoliosis surgeon that does revision’s. Your current pain will need to be addressed and looked for along with all of the diagnostics, and all the co-pays.... Check your insurance 1st to address the financials....the insurance teams that surgeons have working with and for them are usually pretty good....I selected the PPO option beforehand so I could select my docs. I also changed my PCP to my scoli surgeon after the fact, that way he was calling the shots rather than a PA through an MD I never met. This avoids the doubling up of excessive tests, and multiple invoices and co-pays.

You know about scoliosis surgery recovery.....if a revision is warranted, prepare for a long recovery period. I am not a believer in returning back to work to pay bills, and jeopardizing it by enduring WORK RELATED STRESS....If you can work now and save so you can take a year off, your probably better off. I took 18 months off before returning to the office. Co-workers just don’t understand what we go through and some of them you cant teach, and they have no compassion. I have given up and have started growling now.....I need a bear suit for work. Should I go with the black bear suit or the grizzly suit?

Ed

[leahdragonfly]

You know about scoliosis surgery recovery.....if a revision is warranted, prepare for a long recovery period. I am not a believer in returning back to work to pay bills, and jeopardizing it by enduring WORK RELATED STRESS....If you can work now and save so you can take a year off, your probably better off. I took 18 months off before returning to the office. Co-workers just don’t understand what we go through and some of them you cant teach, and they have no compassion. I have given up and have started growling now.....I need a bear suit for work. Should I go with the black bear suit or the grizzly suit?

Ed

Dear Ed,

You are quite right about trying to avoid being pressured back to work in order to pay the bills. This happened to me, although I could have tried to hold out longer strictly for the bills (and racked up more debt). Unfortunately for me my hospital was downsizing at the time, and I felt that I would be very vulnerable if I extended my leave outside of the FMLA job protection, not to mention insurance coverage. My cost for self-pay COBRA insurance for my family would have been over $2200/month, and nobody can afford to lose their insurance when they are only weeks out from scoliosis surgery. Planning ahead if possible for an extended period off work is ideal if it can be managed.

My vote is for the grizzly suit, definitely...

[titaniumed]

Wow Gail,

$2200 is nuts. I didn’t realize that a bunch of years has passed, and insurance rates have pretty much doubled under Obamacare. I guess “we” all have to make damn well sure the insurance companies don’t go broke again.....Its more of a reason to growl in a bear suit.

Sorry Meagan, sometimes we do get a little sidetracked with the thread subject matters around here, but insurance issues play an important part of the whole package.

Be sure to fill us in on what transpires.....Dr Bederman has been invaluable to Melissa’s case.....

I hope you can maintain with your pain....

I lived in El Cajon 34 years ago, but didn’t explore the scoliosis scene at that point....it was the dark ages of scoliosis, and I was hanging in there....

Ed