Quix...Bethesda

[monotreme]

Thank you once again Quix.  I think the doctors are alarmed at my level of leg weakness.  My wife asked the attending today how much fluid they would plan to drain and the answer is 40cc, twice the normal for a LP (I remember how you said 20cc is the normal amount).   She (my wife)  also said that the actual study we came here for is undiagnosed neurologic disorders in the presence of endocrine problems...that they went down the NPH route when they saw the MRI films.

The attending said yes, that they would try to find out what is wrong and if I do not want the LP that would be ok.   Also, last night I gave the neuro resident some MRI cd's from my brain and a thoracic MRI that was done last week which was ordered by the neurologist at Jefferson Hospital in Phila (the one that said I am not in a wheelchair yet so what is the hurry to diagnose).

Well, the attending came in and said that last night the resident thought he saw a spine fistula on the MRI (this was not on the MRI report though).  Now  they are having a neurosurgeon see me today about that and a possible shunt for the fluid.  Now when the neurosurgeon comes in I will remind him again that NPH isn't diagnosed so please lighten up on the shunt talk.

I am concerned about the fistula though.  When I popped the cd into my home computer Saturday night, I saw a kink in the spine at around T10 to L1.  That is where I have also had throbbing pulsing pain for the past year.  However, I have gone to three neurosurgeons (one of them twice) and the "expert" CCF spine doctors looked at my whole spine MRI in July (I have had 7 MRI's this year) and they called me and said I have nothing wrong with my spine and do not bother coming to CCF spine institute and go to neurology instead.

Now someone sees a fistula??!!!

I will keep you "posted".  I see an endocrinologist and a neuro psych and a neurosurgeon  this morning and a spine and chest x-ray.  They are doing a 24 hour urine for heavy metals too.  They want another EMG but since I had a normal one in May and June 2007 and a normal one in Mayo in 2006 I think I am going to refuse the EMG.  They have all three reports and I don't want to be a pincushion again.

This is so hard for a scientist Quix.  When I used to do  lab experiments and before going down the patent law route, I  could reason through my results and come to a conclusion and accept or reject my hypothesis.  Now I feel like everywhere I go a doctor sees something else even though they are all looking at the same films!!

Thank you for your research.  And for explaining about the leg weakness versus the leg heaviness.  It is such a comfort to have you to talk to.  You could  easiy fit right in with these doctors.  You are doing the same thing they are doing...just from your computer!!!

I am having throbbing thoracic pain today. Maybe mental...they keep asking me if I have pain...

Talk to you later....Craig

p.s.   the nicest person I have met so far is the chaplain    very nice man.....Craig

[6-paq]

Try "waiting in Bethesda".  I bumped it for ya!  :)

[Quixotic1]

What happened????  

I can't find "Disappointed in Bethesda."

I'll keep looking.  Q

[Quixotic1]

There are good indicators here.  The docs are willing to work you up as a "zebra."  The expression comes from the constant admonition to medical students to "stop looking for zebras in a herd of horses."  And that "Common things are common."  All of these are good pearls for everyday practice, but the "zebras" in life really throw us for a loop.  That little suspicion always has to be in the back of our minds.  Yes, the hot appendix will appear in the middle of 100 cases of tummy flu.

Engineering and Law are so fact-decision-result oriented, that being in the varying shades of gray of medicine is extremely frustrating and difficult to understand.  

I think they sound willing to look at ALL the possibilities.  This is wonderful!   But, you are right to be aware that somewhere on your chart it states (apparently) NPH.  Certain people who see you may not be clued in to the idea that NPH is not a foregone conclusion.  So continue to speak up to people about not being railroaded down the NPH path.  It may still be your path, but it should be discovered, explored and determined - not rushed down headlong.

A fistula is a persistent opening that inappropriately drains fluid from one place to another.  I don't see that this would cause NPH, rather it would cause (I would think) the symptoms of unstable CSF pressure ( ecasue of on-going loss) and the ensuing headaches.  Generally you "close" fistulas, not shunt them.  (Remember this is not my "field")

Funny story about chaplains and medicine.  The day I started medical school, as part of all the paperwork we had to fill out they included all the info we needed should we need to be admitted to the hospital (????? whatever)  But included in this was a "Request for Last Rites."  I was stunned!  I knew medical school was going to be hard, but I did not know it was going to be a fatal proposition!

I hope it doesn't sound macabre for me to say what you are going through is fascinating.  I don't mean to enjoy your agony.  Please keep me posted and I will keep looking up things - unless I'm being counterproductive for you.  If that is the case then I won't offer the little tidbits.  What I hope to do is arm you with the questions and inconsistencies when I see them and info so you can take your questions to a more informative level.

I'm thinking about you.  Hugs to you and your wife.  She is a Godsend!

I still want to know what casued the "black holes" deep withn the brain tissue.  Lynn had these and they were old, resorbed dropout lesions from progressive MS.  Your exam as you reported it last night still sounds like progressive MS.  And we know that the first MRI sign of MS can be atrophy with black holes!!  I would love to be there an pose that question to the attending.  Yes, it is rare, but obviously you have a rare disorder OR a more common disorder with a very rare presentation.

Did you get to read the Mayo Clinic Proceedings article?

Quix

[monotreme]

Thank you so much for your prayers and words of encouragement..  I am having a rough day. If you want, read my post titled "disappointed in Bethesda".....Craig

[T-lynn]

Your in my prayers today I hope you get the answers you deserve.

You spoke of a neurosurgeon that you seen at the CCF,was it Dr.Benzel?

Let them run all the test they need to,they may have the resourses and the proper educated Drs that know how to treat a patient.

Again prayers to you and your wife

T

[Momzilla]

I am off to work, but wanted to say 'good luck' today.  Hang in there.  Tell your wife she's doing a great job!  What a partner!   A helpmeet!  You guys hang tough and know you're in my prayers,

Zilla*