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Casie Cox
@casieann

Posts: 2
Joined: Apr 06, 2015

Looking for Doctors specializing in Bertolotti's Syndrome

Posted by @casieann, Apr 6, 2015

Wondering if There are any Doctors that specialize in Bertolotti’s Syndrome. I am moving to Florida and I desperately need to find someone who can relieve me of this pain.

REPLY

Hi Casie. We’d recommend that you reach out to our appointment office at the Mayo Clinic Hospital in Florida. You can reach the team there at (904) 853-2000.

ok Thank you

Hi Casie- my daughter also has BErtolotti’s and we are looking for doctors with surgical expertise in this rare condition in the Washington DC or New York City area. Thanks in advance for your help

Hi @jaes and welcome to Connect.

I'm also going to tag @happytrails123 and @reneep to bring them into this discussion.
How is your daughter's care being handled now? Is surgery being recommended?

@casieann Did you see this post by @reneep where she talks about the care she got at Mayo in Florida? https://connect.mayoclinic.org/discussion/sacroiliitis/?pg=1#post-16027

@anonymous-90348

Hi @jaes and welcome to Connect.

I'm also going to tag @happytrails123 and @reneep to bring them into this discussion.
How is your daughter's care being handled now? Is surgery being recommended?

@casieann Did you see this post by @reneep where she talks about the care she got at Mayo in Florida? https://connect.mayoclinic.org/discussion/sacroiliitis/?pg=1#post-16027

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Hi
My daughter is currently under the care of her pop but we hare planning to see several spine specialists. She has failed conservative therapy- PT & pilates
She has a standing desk and special chair at work. The steroid injection only provided temporary relief. So, I think surgery is the next step. From my research I learned it is very important to be sure which parent of the back is the etiology of the pain,that with Bertolotti’s there can be aberrant neuro and vascular anatomy – so it seems choice of surgeon is paramount to successful outcome. Since the condition is not very prevalent and there is no consensus as to best management or surgical approach I am looking for a surgeon who has done LOTS of cases of Bertolotti’s and would be grateful if anyone knows such a surgeon. Am willing to go anywhere in US
Thanks

@anonymous-90348

Hi @jaes and welcome to Connect.

I'm also going to tag @happytrails123 and @reneep to bring them into this discussion.
How is your daughter's care being handled now? Is surgery being recommended?

@casieann Did you see this post by @reneep where she talks about the care she got at Mayo in Florida? https://connect.mayoclinic.org/discussion/sacroiliitis/?pg=1#post-16027

Jump to this post

Hi @jaes,
At Mayo, we have specialists in the Spine Centers at all 3 locations Rochester MN, Phoenix AZ and Jacksonville FL. I recommend contacting your preferred location and asking for an appointment at the Spine Center there. You can also inquire which location has more experience with Bertolotti’s. Here’s the page with all the contact info http://www.mayoclinic.org/appointments

Hello, Can anyone advise me of Doctors in Pittsburgh ,PA that specialize in Bertolotti’s Syndrome? Thank You.

@towersnow13

Hello, Can anyone advise me of Doctors in Pittsburgh ,PA that specialize in Bertolotti’s Syndrome? Thank You.

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Hello Towersnow13, welcome to Connect.

Thank you for asking about Bertolotti’s Syndrome. I moved your discussion and combined it with a previous discussion regarding the same topic of other members searching for physicians that specialize in Bertolotti’s Syndrome. While no one here specifically discussed Pittsburgh, @jaes discussed looking for doctors in the NY area.

In the meantime, would you mind sharing with other members a bit more about yourself? Have you been diagnosed with Bertolotti’s Syndrome?

@towersnow13

Hello, Can anyone advise me of Doctors in Pittsburgh ,PA that specialize in Bertolotti’s Syndrome? Thank You.

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Are there any doctors in the Louisville KY area specializing in Bertolotti’s syndrome?

Please.help i live in ohio and have been seen by micheal steinmetz he said i do have bertolotti’s syndrome but its infused and he cant help me…..i m willing to travel to get help for this please ive been dealing with this pain for over 7 yrs and when it first started no one would believe me finally even though it showed on my mri from 7 yrs ago but the reader never stated it.
Sincerley tonia

I am also in Ohio and in need of a doctor to manage the pain and/or treat my daughter’s bertolloti syndrome. We need someone with experience as well.

I’m currently suffering from bi-lateral Bertolotti Syndrome. I’ve gone through all treatments besides surgery. Looking for a specialist around Dallas, TX but will travel.

I’m 28 and just found out a few months ago that the lower back pain I have been suffering from my whole life is because I have bertolotti syndrome. I did physical therapy before finding out what was wrong. And just started the injections in my back. I’m hoping they work but if not I’m looking for a surgeon that would at least think about surgery for me and know more about what I have my current doctor has given the excuse he won’t do surgery because I’m young and that I have a young child

@courtney28

I’m 28 and just found out a few months ago that the lower back pain I have been suffering from my whole life is because I have bertolotti syndrome. I did physical therapy before finding out what was wrong. And just started the injections in my back. I’m hoping they work but if not I’m looking for a surgeon that would at least think about surgery for me and know more about what I have my current doctor has given the excuse he won’t do surgery because I’m young and that I have a young child

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Also I live in western Pennsylvania

Hello @courtney28, @nicoletorres, @kendrakrumpe, and @toniab. I understand that Bertolotti’s Syndrome is rare and that you are all looking for places near you to get treatment. I wanted to introduce all of you so that you could share your experiences with one-another, how you are coping with your symptoms and updates on your quest for finding treatment. Should you choose to contact Mayo Clinic about an appointment, here is the link, mayocl.in/1mtmR63. I cannot speak personally about the expertise or availability of appointments regarding Bertolotti’s Syndome however.

@courtney28, @nicoletorres, @kendrakrumpe, and @toniab, if you don’t mind sharing, what treatments have you tried and what ways do you each cope with the pain and manage the symptoms currently?

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