All - I spent the day today at the Mayo Clinic and was given a date for surgery. I will be having VP shunt surgery Wednesday April 18th.
Regards
Mark

This is great new, Mark. I am sure that the Mayo doea a fantastic job at installing shunts, so try not to worry. Be sure to gets lots of rest, eat well, exercise, you know the routine.......try to be in as healthy a state you can. Your body will . :well done
Time will fly and it will be time for the surgery before you know it. Think of it as a chance to regain a much more normal life. That should bring a big sigh and a smile to you/
Please do keep us informed.

Wylee



Thanks for your support. As I am replying my pain is almost unbearable. In
the past I have had numerous surgeries and never had any real fear. Having a
date now makes it seem more real than it did prior. I have never been so scared
in all of my life. I know that once I take this step my life will forever be
changed (hopefully for the better). I was also caught off guard yesterday when
the surgeon insists that I have another LP (this Friday) even though he has my
opening pressures from my neurologist at UF Shands. I am so depressed.



I know that I should be cheerful now that there may be an end to my misery
and logically I know that I'm in good hands at Mayo but until I wake after
surgery I will probably be petrified. Sounds more like a kid than a grown 50
year old man. IIH makes me feel a lot older than 50 although I don't think that
I look 50. I just want to feel as young as I look.



Regards
Mark

Mark, I think that your responses and reactions are completely normal, to be expected, and I for being a big enough man to admit his fear of such an unknown. I think what bothers all of us the most is the idea of having surgery done in your brain!! That is why I dragged my feet until the ns relented and said we could do a lp shunt. But lp shunts do have a short life expectancy and higher failure rate. I myself may end up eventually going for the vp shunt. I just took the coward's way out this time.

Yes, thus starts a new and hopefully better chapter of your life! Keep that chin up. We'll be sending you healing thoughts

All - I had my latest LP at the Mayo
Clinic today and am confused leading up to my surgery. Below is the body of my
email to my neurologist at UF Shands. Kindly provide any insight you may have.
For context Dr. Hanel is the neurosurgeon scheduled to do my shunt surgery.



"Dr.
Silliman



I had the LP today and am a bit confused. I am hoping that you
can help me sort it out. Today’s LP was certainly done in a much different
nature and setting. It was done by a doctor accompanied by a team of
technicians and another doctor. They used radiologic guidance during the
procedure (no telling how much that costs). Originally they planned to have me
on my stomach but changed for some reason to my side (similar to when you do
the LP). The only difference that I could see besides the radiologic guidance
is that they did not have me curl up my legs.







I’m not certain of what the opening pressure was but it didn’t
sound like it was in the range that I normally have when done historically by
you. I think that I heard a number like 14 or 16 and a closing pressure of 9.
During the LP they also had me take a deep breath then exhale on command a
couple of times. Once they pulled the needle out and were cleaning my back I
spoke with what I believed to be another doctor (maybe the radiologist) and
left under the impression that the opening pressure was in the normal range.
This seems so strange especially as I have been in so much pain daily.







I don’t know if it will affect my scheduled shunt surgery or if
it should or should not. I have resisted this option until it seemed that there
was no other remaining options other to live as I have been. I trust your
ability to care for me above all others and am not implying that I have lost
any trust in your care. I am just asking for you to help eliminate my confusion
from today’s LP. I wonder if it would be helpful if you were to speak with Dr.
Hanel."







Regards



Mark

Excellent letter Mark. It certainly deserves a reply and I hope you get one quickly!

In the future, any time that you have any done, medically, ask the docs what they are doing and what the readings/results are. Be an advocate for your own health care. And if you don't understand something, ask them to explain it to you. You are paying for their services, so they owe you the time you need.

Please let us know what the docs say! Especially about the big difference in the lp's!

Mark I completely agree with Linda. You're attitude to this has been admirable and very courageous. Keep doing what you're doing because it will make a big difference in terms of mentally, physically and emotionally. The more informed you are the better, so always ask questions and get the answers you need. Please keep us updated.

Heidi

One good sign is that I immediately had less pain initially after the LP on Fridsy. Since then I have been feeling OK of and on (like all previous LP's).

Mark, getting relief post lp is a good sign for surgery. Has anyone suggested doing a lumbar drain test or ICP bolt test?

Wylee - I don't know what those are nor do I feel up to more poking and prodding so I hope the Mayo surgeon doesn't order anymore.

Mark,

If you found relief once some fluid was drained off, you're probably on the right track. I would make sure the surgeon knows you had relief following the LP. The numbers are subjective and really just a guide, so you'll find many stories of members with symptoms and low numbers..every person has a different "norm".


I hope you find relief soon..good luck with your surgery!!
Take care, and do keep us posted.
Julie

Thanks Julie. I spoke with my neorologist from UF Shands and he feels the same. He will be talking with the surgeon prior to my surgery. I have been suffering low pressure symptoms all this week.

It's that "fine line", Mark, between too low and too high. But, once they can find the sweet spot inbetween, heaven!!

Can't wait! Hopefully not too far off. I want off of this train.

Please see new post "Limbo hell"