Following left decompression with Hepworth I’ve been in a state of low pressure that no amount of caffeine can help. What’s nuts is I have terrible foot and leg pain (already know I’m retethered but Hepworth thinks something is going on higher to cause this). He wants me to do a lumbar puncture which makes me nervous. I’m going to Colorado for him to do it. If I’m indeed in low pressure, can he do a blood patch? Who could do that? Fear is always these things are going to make me worse. Can’t even imagine. Thank you kind people 
1 Like
I don’t blame you for being concerned, @JSwing, lumbar punctures are invasive, and I’m sorry you may have a CSF leak. I know TC surgery is also a tough surgical recovery & am sorry it didn’t keep you untethered. Can that surgery be redone? Does TC cause leg & foot pain? I have trouble w/ that but it’s coming from spinal nerves that are getting pinched between L5 & S1 but I expect there can be other causes.
If Dr. Hepworth doesn’t do the blood patch himself, he will work together w/ a vascular surgeon who may be the doctor to actually do that procedure.
You have a tough decision to make. I will pray for you to have wisdom to know what will give you the best end results. 
1 Like
I’m so sorry that you’re still feeling so rough, and may need more tests/ surgery. I wouldn’t know enough about the situation you’re in to comment, although you’re wise to give it proper consideration…presumably a lumbar puncture & dye is the best way to determine where a possible leak would be? Dr Hepworth is so knowledgeable & I’m sure he wouldn’t be suggesting anything you didn’t need…
Maybe @Mod_support could give you some info, Merl has been through some tough situations…
1 Like
Hey @JSwing ,
My name is Merl I’m a member of the modsupport team here on Ben’s Friends and although I do not have Eagles, I’ve had some experiences with csf leaks and pressure issues. If Hepworth is indeed intending a lumber puncture, he or his associates maybe able to do a blood patch but you’d certainly need to confirm that prior. Often a neuroradiologist is involved with the exact location and positioning for the patch. But if the exact location is already known, this may not be required. If the leak location is unknown a larger volume of blood is often added to the csf. Often for an unknown location it can take 5-6 treatments for the patch to work. Some surgeons may have the experience and knowledge to deal with it all.
According to some opinions, the lower the CSF pressure, the better the adhesion of the patch. ie It gives more time for the blood to stick to the hole 
I have had the ‘joy’ of dealing with both high and low pressure symptoms, due to issues with a VP shunt, and neither is nice. So I don’t think your fears are unwarranted. I’d strongly suggest you need to be having the discussion with Hepworth or at the very least his office, to have some of your questions answered directly.
For some people they can have these procedures with no issues whatsoever, but what if…? And I can assure you 100%, you are NOT the only to person to ask "But, what If…? " and who better to ask than the man recommending it, the surgeon. Why can I assure you 100%? Because I question EVERYTHING too. My ‘What if…?’ list is HUGE and some medicos don’t appreciate my questioning, but this is about me and my health, not them and their egos. I need the answers to slow my mind down. to find my own level of peace. You have every right to ask.
Please do let us know how it all goes.
Hope it helps
Merl from the Modsupport Team
2 Likes
Thanks for your advice Merl 
1 Like
I especially liked this part of your comments, Merl, but all of what you said is great!
2 Likes
I have had CT Meylogram and Blood patch for suspected CSF leak.
Please makenyour own decision as every csse is different!!!
However, i was made muchbworse by both procedures. MAYBE, or it may have been that Ibwould have gotten worse anyway.
I am leaving in one week gor MAYO for evaluation for CSF leak again.
Dr. Hepworth will most likely recommend dr. CALLEN in aurora if he thinksnyou truly have a leak, but I dont know.
All I can tell you is Dr. Hepworth is very knowledgeable, but I would make sure there is a plan for a bloodpatch after the LP.
Blessings and prayers my friend 
2 Likes
@harrisonboy , I’m so sorry that you’re still having CSF leaks, I hope that if you need treatment it will be successful, praying for you still
2 Likes