Today Neurosurgeon appt.-pray

[Emme80]

A prayer...as I head into see my Neurosurgeon, whom I am a nervous wreck to see, b/c since my surgery, w/complications of a "Big Squishy" mound to a " Solid Brick", causing great & I mean meltdown great pain and pressure. If scale was 1-10, 10 being 100% intolerable, unable to function enough to move around and start to heal and not managed by 1 pain pill UP to 3x's per day, then I'm by far a 10...plus.( I don't like / hate rating the 1-10 , 10 =worst pain), as we know, a 10 was when we woke from this surgery. But, he has sent me to ER that was a pointless disaster as he said, from CT , to tell ER staff  "send her home, yes, CSF leak & other collected fluids hardening on back of head, any questions, call his office", I did they said "go to ER or call Rheumatologist" (Rheumy has NOTHING to do w/this surgical stuff)
This led to a 100% breakdown.
I've felt abandoned by him. Dismissed. Let down.
And this is my 2nd follow up & I'm beyond anxious. I need help & so afraid I'll walk away from there w/a pat on my back w/an  "All good" and not heard or helped. Pray. I've my mom coming-to vouch and explain my complete situation & how bad it is. She says we won't leave w/o some answers, changes to meds., knowing there's PT in my near future.
But I'm fearing I will walk out again defeated.
Pray. I feel sick & dreading seeing him.
Ugh....

[Emme80]

Thx. Selma & lassel22, Jo2215 , KerriC1 and everybody else!!! <3
Hanging out w/my nephew for the evening/night took more out of me than I thought it would. I didn't even do THAT much. But, it was more than I've done in awhile (he's a hug energy 9 year old who was excited to finally kind of hang out at his rad Aunt's house again! I felt horrible upon waking today-I suppose it will take awhile to get energy, stamina, all that back up! Plus, it was only last week that I started to get a handle on what had been complicating my healing process for....since surgery.
I feel bad that I've not yet given the details, which I think are important to give, on my yet-to-be big "update". I'll try to write it tonight...if not, definitely in the next day or two (tomorrow's my 41st birthday. But, all I want to do is rest and have a treat of Raspberry and Vsnilla frozen yogurt!!!! ;)
But I swear, I'll update with details soon-mornings are prob. the best as towards nighttime, I'm just...sooooo tired! Finallllly catching up on the rest I needed those 1st 4+wks. after surgery!
I will write the actual update soon! I promise, as you all had to hear my cries and worry for so long and I feel it's important for future other Chiarians to know as well!

[lasel22]

Glad to hear your appointment went well.  Pain is a bugger to deal with.  Coming off steroids has definitely been hard for me and I'm needing the pain meds more frequently. I'm sorry you had to deal with discomfort for so long. I'm such a wimp I can't handle the 30 minutes it takes to kick in during the middle of the night when the previous dose wore off. I hope things continue to look up for you.

[Emme80]

hello my friends! I wanted to pop in real quick to tell you that indeed, it was a VERY good, very THUROUGH Dr. Appt. w/my Neurosurgeon. I am doing ALOT better as far a pain,  pressure.....as well as the anxiety,  confusion and emotional stress that being "under treated" and no answers was causing me.
I get to see my sweetest gift God ever gave me, this afternoon for a little bit (finally, as I've been in NO condition in the past 6 weeks to really see him). But, I will certainly get back on here and explain what "Big Squishy" turned "Big Brick" is and where I'm at in this what turned out to be very long initial healing stage process. Thank you all for caring and praying.
I'll be back on in a few hours to give the real scoop...and I hope that someday it helps someone who runs into a "Bug Squishy".
So, I'll give my Dr.'s appt. low-down a little while later today (I'm finally able to have a semi-real person day! While still in pain, it's manages to a point that I don't cry and stress all day...and I'm eating!!!)
:)
Be back soon!

[selmaS]

Glad to hear all went well....look forward to your updates.

[Jo2215]

I'm praying for you, Emme.  I'm so glad your mom is there to help you through this, but you need support from ALL your caretakers.  That is their vocation as healers.  I hope we hear good news from you soon.  Hang in there, and know you have a lot of us wishing you the very best.

[KerriC1]

Hey! I too hope you found some sort of answers as to the cause of your pain and mound. And I know all too well your feeling of abandonment. It's really sad. I'm currently having issues that aren't being addressed and the only advise I'm getting is to wear my rigid collar all day and sleep in a soft collar. Probably have cci and its more noticeable after chiari decompression. But as far as answers to the other issues, it's been totally dismissed and I'm left wondering. I was so hopeful for a better life after and I'm realizing that this is not the case as of yet... Hopefully he answered your questions and gave you some direction

[lasel22]

i'm praying that your appt goes well and everything is addressed. I was told that since I was not on previous pain meds and it was my first surgery  that I would do better than some chiari patients that have been taking meds and already had a previous surgery. I do hope he addresses the mound you have, you should' be in pain like that. Hang in there and if he doesn't help you find someone else. One thing I've learned through this is that there is a HUGE difference among doctors.

[selmaS]

  Hi...I pray your visit went well.....please post an update as to what the Dr finally had to say regarding your big squishy......