You can have Spina Bifida *and* be normal|
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Below are the 20 most recent journal entries recorded in
People living with Spina Bifida's LiveJournal:
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|Thursday, July 22nd, 2010|
Hi. I'm 22 and live in Toronto, Ontario. I've always had back pain, and had been seeing a chiropractor/massage therapist for a good 6 years every 3 weeks because it was so severe.
It finally got to the point where I was finally irritated enough to really get on my doctors case. He had x-rays done, and we discovered I was born with spina bifida. I've just found this out a few months back. It made sence as to why I was in and out of hospital for 2 years every month for a severe kidney infection. [and if I could see my old doctor who blamed it on 'drinking and sex' i'd slap her stupid fucking face right off. she did NOTHING to try and help me.]
i went for an mri in april and discovered i have a grade 4 [there are 5 grades of severity] shift in my s1 and l5 bones. they move between 75% and 100% out of place. i have constant lower back pain, pinching down my legs and numbness in my toes. i'm on antiinflammatory and pain killers. i can't sleep.
i'm not paralyzed and i still have function of my bladder. i am in physio 4 times a week. i've lost the reflexes in my ankles and in one knee.
two months back i was rear ended and my pain in my lower back went from unbearable to excruchiatingly unbearable. i had to quit my job due to the pain.
I'm waiting out surgery, and due to the severity of my problems I've been placed on the "fast track" of surgery lists. this could take six months. the typical waiting list for this one particular surgeon is 4 years. i guess i can concider myself lucky.
now that we all know my sob story. i went from exercising three times a week vigorously, to not exercising at all.what types of exercises do you do? since my accident i've gained at least ten pounds. i have a very short body and i feel and look terrible, plus the weight can't be good on already stressed out bones. Current Mood: sad
|Thursday, July 1st, 2010|
I was wondering if I could find out from as many of you as possible if you ever have any warning as to when you have a UTI/bladder/kidney infection if you get them regularly please?
I've found that the only way I can tell if there is something abnormal in that area is when I get up in the morning and pretty much promptly pass out or feel very ill (ill enough to basically crawl back into bed because there's no way I'm going to make it to work that day). Is this the same for the rest of you or do you have some kind of advanced warning which you can tell when something like that is happening and can pick something up from the doctor before it interferes with your life like that?
I'm not on a permanent course of antibiotics and I really don't want to be if I can help it because I don't like the thought of my body getting immune to all of them until I can't take anything else and end up with worse problems because of it.
Basically I'm worried. In my previous job I was put on report for having so many sick days per year and a good majority of those were UTI's that had laid me low for a couple of days at a time. I'm now in a job I really love and I don't want the same thing to happen again and have it put my job at risk.
Does anyone have any tips or tricks I can look out for please? Current Mood: anxious
|Sunday, April 11th, 2010|
Hello my fellow Spina Bifida patients,
My name is Kayla, I am twenty-one and a half and live close to Portland, Oregon. I was born with Myelomeningocele and Hydrocephalus. My twin brother was born with Spina Bifida Occulta, but he's never had any symptoms except for pain in his back before he had a spinal untethering at eighteen. My oldest brother has no symptoms at all, but he does have a dark spot at the base of his spine that doctors say must have closed before he was born.
I have had 40+ surgeries (I honestly lost count) on my feet (I have been able to walk fine without aid but they twist every now and then and need to be straightened out), back (spinal cord untethers, mostly), neck (Charai malformation) and shunt (I had the connector buried into my ventricle in February because my skin was thinning and it was coming out through my head. I'm going in for another next week, my shunt is broken in two places, it was replaced once before in 2002), and I had a neo-bladder created for me at eight years old that has been revised several times since then because of malfunctions. There have also been a number of non-related Spina Bifida surgeries, but I need not go into those.
The major concern right now is that the neo-bladder that was created for me has started to reflux my urine back into my kidneys, and I get a nasty infection called Pyelonephritis (it's really obnoxious that LJ recognizes these terms as misspellings, haha). I am on constant courses of Cipro and because of my overuse of it I am starting to become resistant to it. I've found that Levaquin also helps somewhat before it reaches Pyelo status, but it's an antibiotic that cannot be given on a constant basis since you can become resistant to it so quickly. Basically, my kidneys and bladder are really bad and I'm running out of options. Does anyone have experience with this? Have you found an antibiotic that you can take for prevention that works as well as Cipro? Other options? My urologist considered revising the neo-bladder so it drains all the time in a urostomy bag, but if possible I'd really like to avoid that.
So, I just wanted to introduce myself and say hello. In all my years of using the internet and LJ I have never been a part of a Spina Bifida community. I have never talked about it much and honestly, I think I just wanted to escape it because it's such a big part of my life that I figured why talk about it online too? But it gets lonely to have no one that really understands, even when you have supportive family and friends. So I hope to meet some people and make some friendships with the only people who can truly understand what it's like. So, please leave comments and introduce yourselves.
xoxoxo Current Mood: curious
|Thursday, December 17th, 2009|
Living with Spina Bifida
I just found this awesome community and decided after joining to introduce myself.
My name is Stacey. I was born with Spina Bifida and have what I've been told by doctors, a mild form of it. I had a back surgery when I was first born and one other surgery when I was eight to fix some muscle placement in my legs to help me walk better. I wear leg braces but can walk really well without them and have never used a wheelchair for mobility.
I'm 28 and have been married for two years now. I have a job that requires me to stand on my feet a lot, which does tire me out a great deal but so far I haven't had any major issues with it.
My husband and I are starting to think about having a baby and naturally I have so many questions. I've searched the internet a million times and have found nothing about women with Spina Bifida and pregnancy. Does anyone have any websites or blogs to share? So far this community is the first place I've seen it discussed anywhere and I'm so grateful! Current Mood: curious
|Wednesday, February 11th, 2009|
Targeted Muscle Reinnervation
Because of the number of amputees created by the Iraq war, and the fact that a lot of those injured soldiers would like to continue serving on active duty but can't, the government has written a blank check, essentially, to a researcher (IIRC he's at Johns Hopkins) to create an actual, workable, prosthetic arm.
There has never really been one.
We have actual, workable prosthetic legs, but the arms, not so much. For one thing, they attach poorly -- someone with a prosthetic arm can't really lift more than about 8 pounds with their prosthesis, so any type of heavy work is right out. For another, you have to learn to operate them by operating different muscles -- you squeeze a muscle in your back to flex your elbow, you shrug a muscle in your shoulder to turn your wrist, etc.
Well, Mr. Researcher guy was told to take whatever resources he needed, but the government wanted a functional prosthetic arm in eight years.
What he has done is called "Targeted Muscle Reinnervation" -- he attaches the motors in the prosthetic directly to nerves elsewhere, in a way that enables the arm to be controlled without having to actually work muscles elsewhere. You just *think* "Open my hand" and your prosthetic hand opens.
He has expanded the possible range of motions and commands available to arm prosthesis wearers hugely.
The attachment problem, I don't really know about. I haven't seen much on that.
But here's a piece on the latest research on TMR, and how well it's working: http://www.nytimes.com/2009/02/11/health/research/11arm.html?_r=2&ref=health
There's that doctor in China, , who has successfully taken the nerves from a patient's thigh and attached them to the bladder, such that these patients achieve more-or-less normal control of their bladders. They scratch their thigh, and their bladders empty. It's revolutionary, but comes with a cost: some loss of voluntary control of the muscle of the thigh.
Here is MY question.
Can the TMR method, which does not seem to involve any loss of function in the nerves used to re-innervate the arm, be used to re-innervate the bladder and bowel of people with spinal cord damage, without any loss of function in whatever nerve you're going to hook the bladder up to?
I think this guy at Johns Hopkins needs to talk to the guys who are working on the Chinese bladder reinnervation method. I really, really think those folks need to be comparing notes.
|Saturday, March 22nd, 2008|
Copied from my journal
I'm posting this here because my other 2 on-line places are full of people I know IRL, and I don't want anyone worried and calling all the time. I am just a little concerned. Gage's head seems to be full (he still has an open fontanel) . I am afraid his shunt isn't working right. I am a little extra paranoid because last time I didn't suspect anything and it ended up being 3 surgeries and a 2 week hospital stay. It was bad enough last time when he was only 2 months old. If he had to have another external drain it would be nearly impossible to keep him happy since he is so busy. I am really hoping that his head is just a little full now and it just hasn't reached that magic pressure yet. Hopefully it will drain on its own and we won't have to do anything. For a while there, his little head was sunken in, and while I hated how that looked, it let me know that his shunt was doing its job and I didn't have to worry about it. Now his head is nice and round, but that scares me. They say the risk of needing a shunt revision drops drastically after you've had one for 6 months. We've had this one for almost 5, so we're nearly to that point. I will update if anything happens...if nothing happens by Monday, I may call the spina bifida clinic at Children's and take him in to see. I was so excited last Thurs that the neuro didn't want him to have a CT because things looked so go. Now I am wishing he had had one! Current Mood: worried
|Friday, March 7th, 2008|
Request for study participants.
Study Title: Body Esteem of Women with Physical Disabilities
Investigator: Laura Glowacki
You are being asked to participate in a research project conducted by a student in the Social Work Department at Western Illinois University. Please
read the information below and ask questions about anything you don’t understand before deciding whether or not to take part in the questionnaire.
This research questionnaire will explore attitudes of women with physical disabilities about their body esteem. Subjects who choose to participate should
be female and aged eighteen years or older who have a physical disability. The researcher respectfully requests that anyone not meeting those criteria
refrain from continuing to answer the survey. ( Read more...Collapse )
This information has been X-posted to the following communities: spina_bifida, weknowdisabled, cerebral_palsy, all_disability, musc_dystrophy,
ever_perceived, no_pity, and gimpgirl.
|Tuesday, February 12th, 2008|
Site for Job Seekers
There's a new site for disabled job seekers -- only employers posting jobs pay a fee. http://www.accessibleemployment.org/
From their press release: "Trenton, NJ (December 4, 2007) – Today marks the launch of a new national job board dedicated to including disabled employees in today’s workforce. AccessibleEmployment.org is designed to provide employers with one central place to post employment positions and search resumes of qualified disabled candidates. In addition, AccessibleEmployment.org also allows potential job candidates to post their resumes for review by prospective employers who have made a commitment to include people with disabilities in their workforce"
|Wednesday, January 30th, 2008|
Okay. . So I think they've finally made their minds up. . . The surgeons PA called this morning and said the culture of the spinal fluid showed some staph infection. . . Soooo they've decided to go ahead and replace the shunt. . It won't be until later this afternoon, they called about 9:30am and said they had to wait atleast 6 hours since he just had a bottle, and they have to squeeze him in. . So, hopefully they stick with this decision, not that I want my little man to have surgery, but I am tired of being told one thing and they change their minds. . I'll let you all know how things go!
Well, they didn't do the shunt replacement yet. They brought Noah down to prep for surgery and the surgeon decided to wait until they got results back from the spinal fluid to see if it is infected, which it is, but the doctor decided to treat him with antibiotics for 3 days and see if that may do the trick, if not then they will proceed with the shunt replacement.
Once we got back to the hospital last night his temp was still high, at one point it was 103 and they just gave him Tylenol, but I thought it was a bit silly that his temp was that high and they had him wrapped in a thick blanket. . He was also grumpy because he couldn't have any formula or anything, after they sent him back to the room to wait for the results they let him have pedialyte, so that satisfied him, and a few hours later he was able to have formula.
Noah is doing much better now, his temp is still a little up there, but he's acting like he is feeling better and he is actually getting some sleep. . Hopefully the antibiotics work and he can avoid surgery this time. . Again, I will keep everyone updated and thanks for all the love :)
|Tuesday, January 29th, 2008|
Noah is in the hospital. He has been really fussy for the last few days and today the shunt area was swollen and he had a temp of 100.5, 101.something when he got to the ER. . . They think the shunt is infected, so they're talking about taking it out and replacing it. . But, I'm not positive, thats what the neurosurgeon said when I talked to him on the phone. . But they're also going to tap the shunt to get spinal fluid and see how that looks. I'm sure everything will be fine, he is a little trooper. I'll update you all later!
x-posted here there and everywhere. . .
|Saturday, January 26th, 2008|
Hey everyone, thought I would do a quick update. .
Noah will be 2 months on Feb 11, thats so nuts!
He had a MRI & met with the neurosurgeon a few weeks ago, and he said everything looked great, the incisions have healed wonderfully, and his ventricles are at the size he would expect them to be right now.
Next month we go to the spina bifida clinic and all the docs will get to check him out. I am looking forward to finally meeting with the orthopedic doc, I want to know how his legs seem to be. He moves them well, and they seem to have good tension, but I am not a professional, so I don't know. Also the urologist will probably set up a date to do the bladder test he was going to do when Noah was still in the NICU, but couldn't because the cath was too small.
Everything is going great, for all the surgeries, procedures and poking and proding they did for his first two weeks of life, he has to be the most calm and relaxed baby I've ever seen!
I was wondering, a few people have mentioned to me that Noah would probably be eligible for disability for having the shunt. When I asked the social worker at the hospital about it she didn't really give me a answer, but I plan on asking again when we meet with her at the clinic. So, the wondering part is, for those of you who have a shunt, do you receive disability just because of the shunt? I'm not really sure how Social Security would work for that, since it the shunt would make in incapable of working, and not knowing what may happen down the road, I would think it would be hard to claim disability. *shrugs* J/W! Thanks & sorry for the long post!
|Monday, December 17th, 2007|
Noah will be coming home within the next couple of days, the neurosurgeon said he is doing excellent and he can now lay on hi back!
My Mom brought up a good question. Where he has the shunt, is it possible that he will be likely to have seizure or be epileptic?
|Sunday, December 16th, 2007|
My son Noah was born 12-11-07 at 1:06 pm, 6lbs 6ozs, 19.69 inches. . The lesion on his back was smaller than they had expected, they surgery to close it went very well as did the surgery to put the shunt in, the doctor said it was the easiest one he has done on a baby. His legs move and they're strong! Everything has gone so much better than I had imagined.
I had a question. Do any of you have a shunt? If any of you do, have you ever had a problem with it? And are there any precautions you have, or had when younger? Thanks for the input :) Current Mood: peaceful
|Tuesday, November 13th, 2007|
Just wanted to mention (belatedly . . .) a book that might interest folks here:A Cup of Comfort for Mothers to Be
The first essay in the book is called "A Perfect Baby," and it's about being pregnant with my younger daughter, who was born with spina bifida. She's four now, and she's great (that's her in my icon).
The essay was the grand prize winner for the book. That's why it's first.
Edit: If you just want to read the essay without buying the book, you can click 'search inside' and read the excerpt, which is all but the last page. To get the last page, search for "perfect" and then read page 7.
|Sunday, November 11th, 2007|
Pregnancy & Giving Birth
It's quite exciting to find a forum like this where people can chat about SB. There are lots of factsheets on the internet but very few lifestyle aspects. I was born with SB and had my hole closed shortly after birth but have been very lucky and have lived an extremely normal life except for intermittent catheterisation and a few ops on my feet when I was little. I can also walk very well and without aids but have little sensation below my waist beyond that required to walk.
Just got married and am now looking to have a baby, but I have no idea about the practicalities of pregnancy and giving birth bearing in mind my own SB - obviously I have researched as much as I can and I am aware of needing to take lots of folic acid each day to try to prevent it in the baby and Im aware of tests during pregnancy etc, but it's a bit scary thinking of actually being pregnant and trying to give birth, bearing in mind my weak lower back and risks to bladder function as well as the fact that
I have had a DVT in my leg previously so am concerned about thrombosis.
Does anyone have any idea about these things? Im assuming that a planned c-section would be the most likely way of giving birth and GPs have mentioned it in the past, but how does that work - anyone know if I can still have an epidural or can they give a general anaesthetic in these circumstances?
Im concerned that I will get answers to these questions once Im pregnant, but it feels a bit late to me to already be pregnant, I'd like to know in advance so that I can plan carefully and know what Im letting us all in for!
Pregancy and giving birth
I was born with SB and I have some questions. Just joined this community and never done anything like this before so just seeing if it works before I post anything personal!
:) Current Mood: cheerful
|Wednesday, September 19th, 2007|
I had an appointment today w/ Maternal & Fetal Medicine. we talked to a genetics counselor & they did ultrasounds *alot* and got the heart, brain, legs & back. They talked to me more about the Spinia Bifida. They said it is low, however its rather big - so C-Section is going to be the best option. The doctor DID see the legs move, they were questioning paralysis, but they see function - which I knew he had *he has antsy legs like his Mom!* both me & Chris were saying how he kicked all the time & during the last ultrasound he was kicking up a storm. So it was nice to have the medical confirmation. And I was fially able to get some questions answered. I still don't have many at this time, but once I absorb everything from today I will probably have some. Everything else with him his fine. So far they see no clubbing of the feet, which is a relief, less surgery he will have to have.
I got a ton of 3-D pics, I will try to post some later, they came out awesome. I was a little scared to get 3-D because I've seen some that are scary! But the ones I got came out clear and unscary! When I get around to it today I will try and post a few of the ultrasound pics!
x-posted to Pregnant Community Current Mood: tired