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September Update

Posted 09-10-2021 at 06:23 PM by Butterfly

The last week I have been experiencing headache symptoms again. After a call with my neurologist, it was determined that it is very likely that I again have a (new or recurring?) spinal leak. Next week I will be going through another procedure to repair the leak.

I'm ...... Not ok.

A bit of information about what a spinal leak is ....
Our brains are suspended in final fluid. When there is a tear or hole in your spinal cord, when you sit or stand, the fluid will leak out and your brain stops floating and starts to "sag" causing low pressure in your head which causes terrible pain. When you lay back down, the fluid is able to replenish back in your head and therefore the pain goes away.

This is typically caused by a lumbar puncture or epidural but for 4% of people this can be caused spontaneously or by an unknown cause. I am one of the lucky 4%. We don't know why I have a leak or what is causing it.

Furthermore, these leaks are typically in the lower portion of the back. However mine is in the upper back/neck area which makes it a lot more difficult to repair.

How do we repair this?

For some people bed rest is enough. For a lot of people you need a blood patch. A blood patch is when you take blood from the person's arm and then insert it into their spine, hoping that it will clot and plug the hole in spinal lining while it repairs itself.

You then have to be very careful for awhile afterwards so as not to "pop" the patch. Sneezing, coughing, a rough bowel movement or lifting something can all dislodge it. 9 days after my second patch, I laughed and that's all that was needed to "pop" it.

I thought I was in the clear. My last repair was on May 11. But now I'm right back at square one ....

I know I'm strong. I know I'm resilient. I know I'm brave. But I don't want to be anymore. I want to give up. I'm so over this.

This will be my 15th hospital visit this year. My 5th hospital admission since February My 4th repair procedure. Im tired of being in pain. I'm tired of being scared. I'm just tired.
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Comments

  1. Old Comment
    Jaro's Avatar
    I'm so so sorry that you have to go through all this again. I'm hoping for the best, that the patch on Friday is instantly successful!

    I know it sucks to always have to be strong. I understand you're tired and you'd want to cry. But I'm always here for you to support you Miss.


    I care about you soo much!
    Posted 09-10-2021 at 08:34 PM by Jaro Jaro is offline
  2. Old Comment
    Butterfly's Avatar
    Quote:
    Originally Posted by Jaro View Comment
    I'm so so sorry that you have to go through all this again. I'm hoping for the best, that the patch on Friday is instantly successful!

    I know it sucks to always have to be strong. I understand you're tired and you'd want to cry. But I'm always here for you to support you Miss.


    I care about you soo much!
    Thank you my worm. ❤️
    Posted 09-10-2021 at 08:44 PM by Butterfly Butterfly is offline
  3. Old Comment
    Cstelle's Avatar
    I'm so sorry for your on-going troubles! All I can do is send you virtual hugs and good thoughts. If there are magical squirrels in the world (and I know for a fact that there are), they will surely notice that you are in trouble, and will come rushing to help you! (You need to be a little patient with the squirrels: they are very kind - but they have very small brains and aren't very good at focussing.)

    Seriously, loads and loads of good thoughts!
    Posted 09-11-2021 at 03:29 AM by Cstelle Cstelle is offline
  4. Old Comment
    starbaby13's Avatar
    Sending positive thoughts your way.
    Posted 09-11-2021 at 04:59 AM by starbaby13 starbaby13 is offline
  5. Old Comment
    b69's Avatar

    Sorry

    Sorry you're going through this again. Prayers for strength for you, knowledge for those caring for you, and comfort for your pain, both emotional and physical. Sorry again. I know you're a strong woman, but it's OK to allow those around you to help carry some of your burden as well.
    Posted 09-11-2021 at 05:06 AM by b69 b69 is offline
  6. Old Comment
    Chephren's Avatar
    I'm just hoping you will get better, please take my best wishes!
    Posted 09-11-2021 at 06:39 AM by Chephren Chephren is online now
  7. Old Comment
    Cassandra's Avatar
    Wish you the best to find a more final solution for this problem. Sounds very exhausting.
    Posted 09-11-2021 at 07:30 AM by Cassandra Cassandra is offline
  8. Old Comment
    Butterfly's Avatar
    Thank you all for the love and support. I'm still struggling but it feels good to know that I have so many people in my corner.
    Posted 09-11-2021 at 06:14 PM by Butterfly Butterfly is offline
  9. Old Comment
    owlart's Avatar
    I hope you're feeling better soon, Butterfly!
    Sending you lots of love and best wishes xXx
    Posted 09-12-2021 at 02:11 AM by owlart owlart is offline
 

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