Your Questions Answered: Adults Living with Spina Bifida

Your Questions Answered: Adults Living with Spina Bifida - Dr. Brad Dicianno

Рет қаралды 7,473

3 жыл бұрын

Join Dr. Brad Dicianno as he answers your questions on adults living with Spina Bifida for our next installment of our Ask the Expert Series. Captions are available in English and Spanish.
Sus Preguntas Contestadas: Adultos con Espina Bífida - Dr. Brad Dicianno
Live ask the expert for adults with Spina Bifida with SBA Associate Medical Director, Dr. Brad Dicianno (www.rehabmedicine.pitt.edu/pe...)
Listen to this podcast by Brenton Kirschner for a great interview with Dr. Dicianno on multidisciplinary care for treating Spina Bifida! bit.ly/31B8ROS
RESOURCES MENTIONED:
Share guidelines with docs:
www.spinabifidaassociation.or...
Find a PMNR Doc (Like Dr. Dicianno):
members.aapmr.org/AAPMR/AAPMR...
Free Mobile App for People with SB:
www.spinabifidaassociation.or...
Shunt Malfunction Cards:
www.spinabifidaassociation.or...
Sleep Apnea Blog:
www.spinabifidaassociation.or...
UPMC Adult Newsletters:
www.upmc.com/.../physical.../...

Пікірлер: 52

@ashleycole1010 Жыл бұрын

I am a 61 yr old with myelomeningicele. I had repair surgery in Pittsburgh Childrens in 1961. I was very very lucky to have the best care ever there. I happened to be the first spina bifida repair surgery at PCH. Over the urs I have had shunt revision multiple spine surgeries and an artificial bladder surgery. I am still able to walk but as i get older i have bad balance and short distance issues. I am truly grateful to the Drs. At Childrens Pittsburgh and Hershey Medical Center and Riverside Methodist in Columbus Ohio for the great care given to allow me a life.

@bhagyasanga2575 Жыл бұрын

@ashleycole1010 2 жыл бұрын

Being a SB patient, Pittsburgh Drs.have saved me many many times from becoming paralyzed. From 1961 Dr. Susen Dr Sheptak and Dr Johnson at Hershey Medical Center. To the present time. From Ohio and Tawain travel to Pittsburgh to this day to see the best SB Drs. In the Country

@armanionguru6298 2 жыл бұрын

I'm a 32 years old with spina bifida mine isn't bad. As some but I'll tell you it dose get painful when you are sleeping and when you wake up your on your back that kills me each morning

@Bhagsus 2 жыл бұрын

Which one do you have?

@nancystrandmark1964 2 жыл бұрын

I was born with spina bifida. At age 70 I still know little about it or even what variant I have. I do know that I have a tethered spinal cord and there is a place where my spinal cord splits and then goes back together again -- it has a long, complicated word that I can never remember! Anyway, I don't know if anything had to be done for me at birth. I did spend a period of months in a Shriner's Hospital when I was under age one. The main repercussions of my birth defect(s) is that I have very severe scoliosis. As a teen I underwent two spinal surgeries, so that my entire thoracic and lumbar spine is fused. As an adult, how can I find out more of the specifics? I can read books and articles, but knowing of the possibilities tells me nothing about which pieces of information apply to me.

@MrEllya25 Жыл бұрын

Love this

@vickishirra-gibb1768 Жыл бұрын

I got diagnosed with Spina Bifida Occulta in 2020. I get regular back, neck, hip and leg pain. If it wasn't for regular chiropractor trips I would be in so much pain

@anaveragemuppet 10 ай бұрын

I found out today (at the age of 41) that I have spina bifida. I’ve come to this video as I’ve no idea what to do now. I’m in England

@modgrip805 3 жыл бұрын

I just found out I have Spina Bifida Oculta. No particular hardships in life except for I have always found it hard to organise myself. Not just that I am bad at it but that it makes me dizzy, panicked, confused. Much how people describe dyslexia makes one feel. Could be a confirmation bias but would be interested to know if there was some pathology to this curse! Many thanks and stay well all 👍

@alphaairsoftstudio 2 жыл бұрын

how old are you? Is it congenital? I just had an occasional Xray of the pelvic S1 S2 and it said "spina bifida larga" and I am 31 years old.

@triptwo425 11 ай бұрын

I definitely have learning difficulties, short attention span, poor memory. It seems like almost ADHD type symptoms. I get easily overwhelmed when communicating with more than one person at a time. Does any of that resonate? There's an Australian Dr that thinks all children with spina bifida should be screened for ADHD.

@fishbone08070 9 ай бұрын

I'm 60 and just found out that i have spina bifida. My surgeon that fused my neck, is unwilling to even see me because he believes that it should have been discovered before I was born. I really don't believe that my mother had an ultrasound in 1963. I have had lower back pain issues since I was 17. I need some relief!! I have had my neck fused from C3- thru C7. I still have severe stiffness and soreness from that surgery, but at least it doesn't feel like I have an elephant standing on my neck anymore. But I've been cut off the pain meds again and i like to know if anyone is dealing with the same situation, and how they are dealing with the pain.

@robertwilliams5618 3 ай бұрын

I have the same symptoms

@modgrip805 3 ай бұрын

@@alphaairsoftstudio 42 years old 👍

@alisacrawford2173 2 жыл бұрын

I have a 38 year old son has stage4 kidney failure and very bad adatude what to do been in and out of hospital last 2 months

@mandywhitton 11 ай бұрын

I Been under three Hospital and not one believe ME my whole Spine is So SORE you have Crying 😢 I am 70 this Pain is unbearable what can I do

@user-dd7ru9rg8i 4 ай бұрын

Sir Can the hairs on the lower lumber region be removed parmanently for lifetime?

@RobinDonnelly1208 2 жыл бұрын

How come I don't see any of the links that were said would be in the comments.

@SBAOrg 2 жыл бұрын

Hi Robin, sorry for the delay. All the links are now uploaded. This video was originally streamed on Facebook and housed all the original content there but not here. Thanks for your comment.

@letstalkdisabilities7549 2 жыл бұрын

Are people with Spina Bifida discouraged from seeing a chiropractor?

@ashleycole1010 2 жыл бұрын

Yes

@danielnisley3647 Жыл бұрын

No I have Spina bifida myelingacele and I see a chiropractor on a regular basis just tell him about your defect and I would advise going to a chiropractor that does x-rays and talk to them about it best of luck my friend by the way I'm 36

@khushiagrawal4378 2 жыл бұрын

I have spina bifida and severe scoliosis but i feel lot of pain in whole body and because of that i couldn’t do basic daily chores it makes me to be on bed rest for 5-6 years I want to ask a patient with spina bifida feels current in back and pain in whole body like me

@ghumkumar547 5 ай бұрын

Mere ki bhi puri body mi pain rhta h burning sensation hoti h headache rhta h

@odin-fr9et 2 жыл бұрын

Is there a chance with independent adult living with myelomenigecele?

@ashleycole1010 2 жыл бұрын

I have lived 60 yrs with it. Proudly independent

@ashleycole1010 2 жыл бұрын

Lived 60 years independently

@mandywhitton 11 ай бұрын

Do we have Doctors for Spine bifilar

@mandywhitton 11 ай бұрын

In the UK if so could you give me a name😢😢😢😢😢😢😢😢😢😢😢😢😢😢 please

@trollinpaw 2 жыл бұрын

my birth mother had spina bifida. she is no longer with us. she passed may 2013. i am 36 years old and healthy

@trollinpaw 2 жыл бұрын

it was never corrected. she was confined to a wheel chair. her occupation was house wife after she left her job of some years. i live off her disability record

@RaquelNavas 2 жыл бұрын

I have myelomeningocele

@ashleycole1010 2 жыл бұрын

Me too

@bhagyasanga2575 Жыл бұрын

@@ashleycole1010 , could you help us with details

@ashleycole1010 Жыл бұрын

Yes

@kanchansoni8470 11 ай бұрын

Hello sir can I get your number... Just because my niece suffering with Spina bifida occulta.... Please help

@birdlovespaint Жыл бұрын

I was diagnosed in my late 20s w spina bifida occulta, scoliosis and one leg longer. I have had 3 spine surgeries from lifting, or other injuries. I have a boney mass and star shaped vertebrea instead of fatty tissue. I never see this mentioned with SBO, is it common? I am 54 and active. I suffer from cronic pain.

@devank09 11 ай бұрын

sir you still go to the gym? with sb

@birdlovespaint 11 ай бұрын

@@devank09 I hike and do yoga and have a gym in my house now. Treadmill, etc. The lateral Helix machine , has made walking possible. It has saved me .

@birdlovespaint 11 ай бұрын

Also the Scout by Rogue Fitness, or westside barbell, reverse hyper extension machine. Game changer.

@devank09 11 ай бұрын

@@birdlovespaint that's a lot of progress 💪🏽

@birdlovespaint 11 ай бұрын

@@devank09 just want to walk as long as possible.

@Boyza.hadebe 2 жыл бұрын

Can a man with spine bifida have a problem with erection and how to overcome that?

@Swan234 Жыл бұрын

Assuming this is a serious question... It would depend on the severity of the spina bifida... and if its severe enough to cause erection problems then I doubt you'll overcome it

@mandywhitton 11 ай бұрын

NO DRS BELIEVE ME so PLEASE ANY ONE HELP ME I BEEN I REAL PAIN worsted pain ever and NO BELIEVE ME one Disc has collapsed and done nothing I went numb from waist down Drs just ignored me when I said I fell in garden