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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Adults with Spina Bifida..
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I'm a 36 yr old woman who has Spina Bifida. I had quite a few surgerys when I was young but was healthy and active for many years after I turned 18 and was discharged from a "peds patient" Now that I am "adult" I have in the last 3 yrs had some major difficulties Orthopeadic wise. I had a total knee replacement in June 2006..try convincing a Ortho doc who doesn't know anything about spina bifida that the pain isn't just in your head! After going thru 3 dif Ortho docs I finally found one who would agree that I needed a replacement. I have since had another knee surgery on the same knee a yr later. It looks like I am going to end up in a full leg AFO. Not that I want to..but I need to stay mobile. I am also just finding out that my back pain is Tethered Cord..so that is next on my surgery list.I go to see a new Neurosurgeon in the next couple weeks. Does anyone else have this frustration as to where do Adults with Spina Bifida go..or what are their choices. Peds have an over abundence of help...once we turn 18..we're on our own. I'm so frustrated. I was lucky to be healthy for many years but now as I get closer to 40 things are "falling apart" and trying to find medical help is next to impossible. Are there no docs that specialize in Adult Spina Bifida?
Posted on 02/16/08, 01:02 pm |
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I am two years closer to 40 than you are. I use a wheel chair to be mobile. You are so right. It is like when we turn 18 we are suppose prepare for the grave the next day. I have several doctors tell I was in the first generation that survived Spina Bifida ( I know there are older peple that did but we are the 1st generation that the best survival rate. ) so maybe the doctor just aren't prepared. To which I say get ready because we are here. I have been blessed because my GP loves a challenges so when I have a problem he works until he find a solution. They might work for anyone but me but I am his concern right then. The most recent problem I have had is bladder stone removal surgery I wanted to stay in my home town ( which is in a rural part of AR)but I was afraid I cold not and that would make harder on my family. Once again I was blessed because my GP sent me to a great specialists. You know not only did they deal with the surgery but they helped over my fear of doctors. I hope soon you find the same type of doctors I have. 
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I find it extremely frustrating too! I'm only 19, so I'm very used to going to a clinic for SB. I used to go to an excellent clinic at Children's Mercy Hospital in Kansas City (which is a 3 hour drive, but well worth it) but now that I'm 19, they won't take me.
I'm also a military dependent which furthers my frustration. It's my opinion that generally speaking, military doctors know NOTHING about spina bifida. One doctor I had even asked me if I was over my spina bifida, like it's the flu or something. Another thing that's annoying about military hospitals is that you rarely see the same doctor twice, and they only look at the one issue you're having at the time, instead of piecing together all the symptoms you're having, which generally leads to a bigger issue.
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They asked if you were "OVER" your spina bifida, danielle? I wouldve asked if they were "OVER" their ego trip. Jeeesh...thats horrible. I went for years without a good neurosurgeon, mostly because I was luckily quite healthy without complication. Luckily, when I started having Tethered Cord Symptoms about 6 months ago, my Neurosurgeon from about 15 years ago was still able to help me. I just had the surgery on Feb 7th and am now in the recovery stage at age 31. It does get harder with the doctors the older you get, and it is amazing the amount of doctors who dont know much about what is considered the most common birth defect.
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Yea it was infuriating.
Ah well, I seem to be doing ok for now at least.
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I feel your frustration. I was find for many years and didnt go to any doctors for my spina bifda, but now that I older it is really frustrating trying to find a doctor who knows what there talking about. I went to one nerurosurgeon that told me he couldn't do anything for me until I start to lose conrol of my bladder and bowels. I never went back to him. I'm still look for a Neurosurgeon.
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One of the biggest problems for adults with SB is finding a doc who will take care of them. There are more living adults with SB than ever and the medical society is not prepared to care for them. I threw a fit at our hosptial and now they are accepting adults in the specialty clinic. Fortunately for our daughter born with SB the doc she goes to oversees the resident program and he listens to my complaints about not having the appropriate care for adults. He has been seeing our daughter for 18 yrs now. I recommed him to many of the adults that I know who have SB. IF enough adults lobbyied about their health concerns something would be done. IT is the squeaky wheel that gets oiled. My hearts go out to you and I will be praying for you. I would encourage you to talk to your state Representative or your senator and relate the health problems and the lack of care. That is really the only way that you will get the care you need. BLessings, Angelunaware
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I am 48 and still going strong. My level is low and i have a few deficites. I understand the doctors not knowing what to do. I have a few experiences with that. The Uro's are ok but the general MD's have it tougher.
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Hi
I'm 39 and I've had major trouble finding the help I need. My doctor cares but she isn't really up on Spina Bifida. Good Luck to you! CathyM
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were do u live? i live in maryland and there is an adult spina bifida clinic at john hopkins! I know a few others around the country as well!
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Docs that ive been to have been great. Ive just come out of hospital 2day after havin a below knee amputaion. I was fit until about 5 years ago. Im 29 now. Look at my journal if that will help. x
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