Eroding Dura

[SharonD]

My son Robbie has been diagnosed with a CSF Leak due to his lymphangioma (which he was born with and is not operable) eroding the dura.

He will have his first blood patch next week which will be difficult due to the lymphangioma near the spine. So of course my questions are:

How many times do we do the blood patch before starting other procedures?
How do we know if the dura will erode in other spots?
His blood patch will be done at the T3/T4 area, there is a sign of another leak at the C8...is my son in for years of treatment?

If anyone has experience with an eroding dura please let me know. Thanks!

One other thing...how does a Mom keep a 14 year old boy flat on his back for 5 days?

[Robbysmom5]

Oh Sharon - I only have a suggestion for your last question, sorry about not having answers to your others.
We put a matress on the floor of our den so our Rob could comfortably see a TV without having to bend his neck w/ pillows. Rob loves video games and his XBOX 360 was installed on this TV. (I do think he can play video games forever if we let him) We also watched lots of movies together - mostly comedies. Books are good too - even joke books or Far Side comic books, etc.
I hope the patch works and some scar tissue toughens his dura so the eroding will stop. Will be thinking of you next week!

[LauraL840]

I sent you a PM.

[SharonD]

Thanks I love the idea of bringing the mattress into the den. Our NS is going to keep Rob in the hospital for 3-5 days. He will be under anesthesia for the EBP and they will use a fluroscopy. So day one should be ok but who knows after that. We are hoping he can tolerate this better than the myleography, that was an awful expereince for him. Pain, severe headaches, nausea and fainting. We had to keep him down then as well its difficult when they start feeling better.

Thank you for the support, I hope you dont mind me checking back in as we move forward.

[Leaky Christy]

Hi Sharon,
I would suggest that you ask your doctor what his/her plan is possible get a second opinion. I would also ask your doctor how many cases like this they have worked with. Because it is rare it is hard to find a doctor with experience but it is possible!

The EBP and myelograms have A LOT to do with the doctor performing them! I learned that the hard way. If the neuro isn't the one performing the EBP ask the doc that it is about their experience (# performed and # successes).

Best wishes,
Christy

[Robbysmom5]

Hi Sharon - Thinking of you and Robbie and hoping all went as well as can be expected this last week!

[fuzzy101]

Hi Sharon, i will be interested to see how much blood they put in. MY story is here. for you to read if you like. I have only had one blood patch with about 22ml of blood which seemed to work for me. Some Dr's tend to put a lot less and it makes hardly any difference thats why most patients go for several patches.

http://brain.hastypastry.net/forums/showpost.php?p=392206&postcount=32

Best of luck