What is Spina Bifida
Spina bifida is a Latin term which means "split spine" and describes birth defects caused by an incomplete closure of one or more vertebral arches of the spine, resulting in malfor...
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Spina Bifida Occulta
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Hello I am new here, just wanted to share my story.
I am 28 and have just recently found out I have Spina Bifida Occulta. I have always had a squishy lump at the bottom of my back with hair, but was told by my mum that it was nothing. I have always thought I was a freak, however a few months ago I decided to search the internet to see if there was an explanation what it was. I was suprised to find out it was Spina Bifida Occulta. I was releaved at the time to know that other people had this lump too and I wasn't a freak after all. I read up more on Spina Bifida and was shocked to read that it is likned to bladder problems. I have always had problems with emptying my bladder fully and have constantly suffered with UTI's, as a result I lost my left kidney when I was 12. I decided to go and see my doctor to tell her that I thought I had Spina Bifida Occulta and that I think that is why I have always suffered from UTI's. The doctor looked at my records and said that it was recorded when I was born that I did have Spina Bifida Occulta, however knowone bothered to tell me. The doctor did not seem to think the two were related but sent tme to see a Urologist anyway. I told my mum about going to see the doctor and finding out that I have Spina Bifida Occulta and she said she knew, however a male nurse at the hospital when I was born told her he also had it and told her that it is nothing and has never caused him problems. That is why my mum told me it was nothing. I have had a few appointments with the Urologist and he said that Spina Bifida Occulta is connected to bladder problems. He was shocked that I had not had regular check ups throughout my life to check that I did not incur any kidney problems. I have had a few tests to check my remaining kidney is OK which it is, however my bladder is still not emptying fully. I am having another test in a few weeks called Urodynamics which I am not looking foward to. My Urologist said that even if they find that my bladder is weak because of the Spina Bifida Occulta there is nothing they can do anyway. The only thing is self catherisation, which scares me alittle. Everytime I have had a test which involves putting in a catherter whilst awake it has been quite painfull. I feel like maybe if I had been for these regular Urologist tests when I was younger I might not have lost me left kidney. I was just wondering if anyone has experienced the same problems as me and if you get used to the self catherisation. Thanks, Gemma Posted on 11/02/09, 10:11 am |
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Gemma I have self cathed since I was 6...after awhile you get used to it. I am shocked by the number of people I read about who dont find out til later in life that they have SB....and yes, bladder problems are synonymous with SB. As are stool problems. I am 32 and wear Depends briefs on a daily basis, self cathing myself 6 times a day. I am here for advice if you want to talk. 
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Gemma, I am 38 and was told since I was young that I should or would have to cathetorize to avoid UTI's but I was too stubborn and embarassed to. Well finally after having a urodynamics test because I was getting frequent UTI's, the test revealed that I had paralyzed bladder sooooooo I now have to catheterize. I admit I was devistated and thought OMG @ 37 I am using a catheter how am I going to hide this BUT I promis it gets easier. It's awkward at first but a home care nurse should be sent to your house to show you how and make sure your comfortable with doing it. I use a small catheter and I can carry it around in my purse in a "travel toothbrush holder". I haven't had a UTI since, much better than having a UTI that is painful, makes you have to go more often and along with that comes a higher risk of having accidents. Not sure about you but everytime I went out I prayed I didn't have an accident and I made sure I knew where each and every bathroom was and just generally and constantly worried, now I don't have too.
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