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Frustrated.. any suggestions?

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Old 02-22-2007, 03:22 PM   #1
Join Date: Jan 2007
Location: Ontario, Canada
Posts: 85
define_truth HB User
Frustrated.. any suggestions?

I've searched for the right board to post this on and am still not sure I'm in the right place but hopefully someone knows what I'm talking about.

I have a fairly long and complicated medical history. I have spina bifida and severe scoliosis. I had a fusion with instrumentation for the first time when I was 12, but one of the screws holding the rods in place shifted and started to cause me pain. My doctor was convinced that the bone was fused solid and so he felt confident taking the rods out, leaving me with nothing in my back. Fast forward to just before my 16th birthday, and I started to have extreme pain and felt as though the scoliosis was getting worse. It took over 6 months for them to figure it out, but right in the middle of where the bone was fused it had broken in half, causing swelling that made me unable to even sit up without assistance. After 8 surgeries, I ended up with 3 more rods in my back and I lost much of my ability to walk (I could walk perfectly fine before; now I can't walk with a walker).

The reason I'm here, however, is because of a leak of CSF at the bottom of my back. It was first discovered about 2 years ago and I had an operation to fix it, but it came back. Once again I had surgery to try to repair it again, but it happened again. The third, and most recent surgery (February 2nd, as in like 3 weeks ago) was supposed to help. My neurosurgeon even put a shunt into my head (something I was very, very hesitant to do) to try and keep pressure off of the base of my back. Everything was great for about a week, but once again the leak has reoccurred.

I'm only 19 years old and all of my medical issues and surgeries have kept me in high school 2 years longer than I should have been. I'm supposed to be graduating in June but that's going to be very difficult to do if I'm at home sick throwing up with a migraine every single day.

I'm just wondering if anyone has had problems with a reoccurring leak of CSF fluid and if so, what was done to finally resolve it? I'm getting to a point where I don't think I can handle any more problems. I was very healthy (even given my medical conditions) 3 years ago and I feel like my health and my life were ripped away from me. I would just like to get on with life, graduate high school, go to university and get a job.

Any replies are very, very appreciated. I don't know what else to do. Sorry this was so long, it was a lot to explain.

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Old 02-22-2007, 04:08 PM   #2
Senior Veteran
Join Date: Aug 2006
Location: Virginia
Posts: 3,306
BlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB User
Re: Frustrated.. any suggestions?

Dear Define_truth,
I wish I had some good answers for you. I've had my share of problems (and you've had way more than your share), but that's not one of them. Hopefully, soneone on here will have some suggestions for you, but you might find more help on the spinal cord problems section of the boards.

I'm so sorry you've been through so much at such a young age. I was a teenager when my problems started, too. I'm now 48, and I can tell you that as hard as it's been, and as much pain as I've endured everyday of my life, there's still much to live for and much to look forward to. You express yourself very well! Even with all your problems, you've managed to get a good education! Never give up! You never know what might happen later in life or the people you'll meet that your experiences can touch in a way no one else's can.

I wish you the best, and I do hope you can get some answers and help with your CSF problem.

Take care,

Old 02-22-2007, 10:28 PM   #3
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Join Date: May 2006
Location: Berryville, Virginia
Posts: 2,381
Justoneofus HB User
Re: Frustrated.. any suggestions?

Outside if the spine issues for the moment. If you aren't already, coordinate with your school counselor and let them know what's going on. Have you considered doing distance learning to complete your studies. These can be done online from the comfort of your home. Big thing is does your school allow for this.

My daughter did this for her senior year. She was an exceptionally bright child that decided her social scene was more important and the school was actually glad to get her out of their hair. Then if she failed, it was entirely on her. She graduated her classes with a proud "A", but did so by completing 3/4 of the year of schooling in two weeks time. (Jaw dropped). Yep.. as I said.. exceptionally bright.

So check into this the sooner the better.

I personally have no experience with CF leaks to date, but I know there are some on here that have, but not sure to the extent that you have. Hmm... if they can do a shunt.. maybe they could put a stint in the area that keeps leaking. Just thinking out loud here. Dunno.

Life is not over for you and you will get this resolved soon and things will normalize somewhat so you can achieve those goals you stated. All the best to you. Tammy
"believe in the beauty of your dreams"- E. Roosevelt

L5/S1 bulging @ 18, now 46; still there (but no pain)
Fusion at L4/L5 Apr -2006
Solidly Fused Nov-2006
A Success, but still improving!

Old 02-22-2007, 10:35 PM   #4
Join Date: Feb 2007
Location: Calgary
Posts: 1
Chatou HB User
Smile Re: Frustrated.. any suggestions?

Dear Frustrated:

Your story saddened me. I admire your strength and tenacity. Just wanted to let you know that God is there for you. We do not know why he allows this to happen, but let me tell you that He is there with you suffering also.

Please trust in Him, I will pray for you.

Keep your chin up


Old 02-23-2007, 12:55 PM   #5
Join Date: Jan 2007
Location: Ontario, Canada
Posts: 85
define_truth HB User
Re: Frustrated.. any suggestions?

BlueAtlas: Thank you so much for the reply. One of the things that I love most about these boards is being able to find people who have been through similar problems and understand. It's more difficult to find that in real life. As far as there being so much to still live for and look forward to, I couldn't agree more. As frustrated as I get sometimes, I can honestly say that I wouldn't change anything that's happened over the past couple of years because a lot of good has come from it. If none of this had ever happened, I never would have met my boyfriend who I am completely in love with. I never lose sight of what's good in life and how lucky I am, I just get so frustrated sometimes and feel ready to give up, even though I know full well that I never would.

Justoneofus: I have been in constant contact with my school. Before this year, they were actually very difficult about my missing some classes and helping me out even though I tried so hard. This year, however, we got a new vice principal who has been fantastic and extremely helpful. All of my teachers, my guidance counselor and my VP know what is going on and they've been helpful. I missed many classes last semester and still managed to get an A average because they were so flexible and helpful. As far as doing courses online or through distance learning, I have done that in the past and am continuing to do it now. The problem is that I can only take one course online at a time and if I do any distance learning, it has to be done through an adult learning centre at which point they would want me out of high school. As of now, I'm taking 4 courses at school plus a course online.
As far as putting a shunt right where the leak is, that was considered. When the leak reoccurred this time, I was given two surgical options; one was to try to fix the leak and put the shunt in my head, and the other was to try to fix the leak and put the shunt at the base of my back. My doctor recommended the first and so that's what I did. The problem with the second one is that I have a Chiari Malformation as well and putting the shunt in the bottom of my back would have made that worse and would have led to another surgery to fix that as well. Looking back now though, I can't help but wonder if perhaps that would have been the right decision after all.

Chatou: Thank you for the kind words. I have a theory that God only gives people as much heartache and problems as He knows that they can deal with, so I trust that anything that is thrown at me is something that I can get through and overcome. Thank you for your prayers.

Old 02-23-2007, 01:23 PM   #6
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Join Date: Oct 2006
Location: KC, MO
Posts: 2,209
yvette777 HB User
Re: Frustrated.. any suggestions?

You are truly inspirational your courage and your faith as well. I believe that all the things that happen in our life even if not desired do teach us things....I think I am suppose to be learning patience right now...

I also thought maybe you could check out the spinal disorders part otn this board, maybe other help could be possible there as well.

I hope you get to feeling better and find answers to it all.

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