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Old 06-05-2003, 11:58 PM
Kaderina Kaderina is offline
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Default Spina Bifida Occulta

Hello,

I hope someone can answer some questions that I have.* I have just been diagnosed with Spina Bifida Occulta.* I was in a car accident on January 6th.* I*T-boned a truck*that failed to stop at a red light.* I went through the physio and my neck and mid back felt better but I still had a nagging problem with my pelvic area.* The doctor sent me for sacro-iliac X-rays (because the physio therapist said at one point I had one leg longer than the other and had a luxation of the joint) and I just got the diagnosis of SB Occulta.* I will now be going to a specialist for his opinion because I have pain down my sciatic nerve of one leg.

Can anyone tell me if there is any resources such as physio programs that are covered by OHIP?* With this being a medical condition, the accident insurance will not cover this.*

What resources are out there that can help me?* If this is going to be a life long condition, I would like to know what to ask for.

Any information is greatly appreciated.

Kaderina

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  #2  
Old 06-08-2003, 01:45 PM
tinemom tinemom is offline
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Default Spina Bifida Occulta

As you probably know this condition will be with you for life..and you're right it is important to have resourses that you can fall back on. My Othro Dr just retired this year and I am now scrambling to find someone to take his place. He was a wonderful Dr.<br> <br> Whenever I have needed physio...I have gone through reference of a doctor...however a few of the really good ones I have dealt with haven't been covered by OHIP. I actually went through the yellow pages once after an operation and found a few. Some even have it listed if they are OHIP covered but then you have to call them to see if they have any knowledge of Spina Bifida. You can find good theapists but you will likely be on somewhat of a waiting list if you want the OHIP covered ones. Often you can go through hospitals to find one. <br> <br> It is often trial and error cause there aren't many set services for with adults with Spina bifida...Do you live in the Toronto area? Have you a Spina Bifida Assoc. in your city, they may have contacts of Doctors or Physio that have experience with this condition. If you're near Toronto and can, you should call the SBHAO office they may be able to give you some names over the phone to get you started.***The Phone number is listed on this sight I believe?<br> <br> Anyway, good luck finding the help you need take care.<br> <br> Tinemom<br>
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Old 06-09-2003, 11:34 AM
Kaderina Kaderina is offline
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Default Spina Bifida Occulta

Hi Tinemom,

Thank you for the information.* I will look into the options that you have mentioned.* I live in Oakville and I know that the Oakville hospital has some programs but I don't know if they are covered by OHIP.*

As I have just been diagnosed, I don't yet know the severity of my condition.* I will be going for more spinal X-rays today and to the specialist next month.* From what I have read, this is not a progressive disease.* I may be wrong.* I am hoping that if I can get into a program and*I can stop any further damage by strengthening the pelvic muscles.

If anyone out there has SB Occulta, I would love to hear your opinion on this.* Have you found that your condition got worse over time?* Did therapy help to get you back to 100%. (Or close to it?)* Tell me your stories.* There doesn't seem to be much information out there other than this is the mildest form of spina bifida and is usually found to cause no problems.

Thanks again Tinemom

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Old 06-23-2003, 05:50 PM
elena36
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Default Spina Bifida Occulta

Hi Kaderina, I have just read your message posting.<br> My name is Elena, and I also have SB occulta. I was diagnosed with it in 1997. By that time I had already had 2 children and they were 2 and 5 yrs old. I was having very acute lower back pain and severe siatic pain down both legs. I could hardly walk some days. I was able to get the name of an orthopedic surgeon at Toronto Western Hospital through the SB organization. I went to see him in late 1997, and he sent me for an MRI. The MRI showed that I also had a tethered cord. (Compression within the spinal cord). He then referred me to a Neurosurgeon at the same hospital who advised me very strongly to have surgery to repair my spinal cord.<br> <br> After 8 or 9 months, in August of 1998 I had the de-tethering operation. I still experience moderate lower back pain and weakness in my legs and ankles. But I do not experience much siatic pain down my legs at all now.<br> I still can not walk very far without tiring very easily, and I use a cane to help me.***<br> <br> If there is anything that I could help you with, please reply on this web site.<br> <br> Take care.
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