12.11.2011

Pablo's upcoming surgeries/medical issues

We still have no word on when Pablo's surgery is to remove the pilonidal cyst on his lower back. The surgeon was out of town for a bit and his office reopens on Monday so maybe they'll be able to tell us whether it will happen before Christmas or not.

Next is Pablo's urology issues. I'll summarize a bit of what's been going on lately and hopefully I get the details right. Pablo has been having difficulties in the peeing department. There are times when he feels he needs to relieve himself and he'll go to the bathroom but he'll sit there for 20 minutes (sitting due to length of time) before anything comes out. Too much detail? It gets better... In the middle of the night, Pablo has been known to fall asleep while sitting on the toilet because it would take so long.

Pablo has lichens sclerosis which I've mentioned before. This causes a build up of scar tissue down the urethra. Pablo has had this for years, even before the brain tumour discovery. He has had quite a few minor surgeries to remove scar tissue and aid in him being able to pee more freely and easily. But he is still having problems and his urologist now thinks the current problems are not caused by the lichens sclerosis. His urologist has a couple of interesting theories.

Theory #1 is that the large brain tumour Pablo had last year has caused some sort of disconnect between the brain and Pablo's bladder, etc. For example, the brain is telling Pablo that he needs to pee but the bladder is not full and he shouldn't feel the need to go.

Theory #2 is that there is a disconnect between the parts of the bladder, etc. I can't remember the exact details here but there is a process whereby the bladder fills up and then passes urine down and then you pee. The urologist says that there could be some kinks in the sequence of steps where step #1 happens and then step #2 should take over but isn't synced up to. There is some extensive video testing for this and the wait is long. Pablo is scheduled to have this testing at the end of March.

I asked Pablo's urologist how can the disconnect in theory #2 be fixed. He said that there is a urologist in Toronto who, as of only last month, came up with this new solution to the problem - a pacemaker for the bladder.

Until Pablo has the testing done in March, his urologist wants him to catheterize himself on a daily basis (EEK!). There are a few reasons for this. First, Pablo will no longer have to spend so much time every day in the bathroom waiting to get relief. Pablo figures he spends about 2 hours a day, if not more, trying to pee. Second, Pablo can learn alot from the results of catheterizing himself, e.g. if he feels like he has to pee and catheterizes himself and very little comes out, then that confirms that his brain is telling him that he has to go but there is really nothing there. Also, he'll be able to figure out by the amount that comes out, how often he should go every day.

On Friday, Pablo went to the hospital for a teaching session on how to catheterize himself. As you can imagine, it's not pleasant. The urologist there who helped him, told him that he should do it around 4 times a day. This urologist is convinced that a pacemaker would solve Pablo's problem.

In conclusion, Pablo should catheterize himself 4 times a day till March when he has this video testing of his bladder and they conclude that he'll need to go to Toronto for this pacemaker surgery for his bladder.

12 comments:

  1. Gosh that doesn't sound pleasant. I hope it all works itself out and gets fixed!!

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  2. Thanks for sharing, I am so sorry and this sounds so frustrating and difficult. Praying for answers and solutions.

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  3. I wish for you a lot by virtue of in this difficult and a quickness, the best solution for pablos problems. dear ones greets from the others ends to the world.

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  4. I wish him (and you all) well. I understand the drama that comes with having to self-catheterize as I unfortunately had to learn it after baby no 2 caused some 'issues' - not a very pleasant thing. Ask your doc about a 'super pubic catheter' - a very painful initial procedure but then it is alot easier (especially long term). I can give you details about what it is and how it works (but thought it a bit TMI for a blog comment).

    Good luck - thinking of you guys always (-:

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  5. Thanks everybody!!! Linda, feel free to email me any details and thanks so much.

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  6. Sure hope that they figure it out soon for all of you. How difficult for both of you.

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  7. Thank you STO. It really has been difficult and frustrating. Not knowing can make you go crazy.

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  8. EEK is right! Poor Pablo. Tough stuff all around. Hang in there, sweetie.

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  9. Thanks Collette. We're doing our best not to go crazy but the catheters and back cyst and vomiting numerous days a week is really hard on Pablo (and the kids and I). I just hope that in a few months once the surgeries are done, he'll feel better.

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  10. Me too. I'm keeping fingers, etc. crossed.

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  11. Not sure if I posted this already but cyst surgery is scheduled for January 19th (give or take a day since my memory is the pits). Pablo really does not want to wait that long.

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  12. Yeah, I don't blame him at all. I hate stuff hanging over my head. I'm good at anxiety!

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