Still with the brick...late updat!

[Emme80]

Hello again!!!! I'm sorry for such a delay in responding to my ongoing "brick" situation. My NS did say that the "brick" was perhaps related to the "big squishy" (collected fluids) from where he harvested the tissue for dura patch. He's unsure if it actually gravitated to base of skull (where "brick" is) or if that a whole different "collected fluids" reaction.
Although this, hence the name, is hard & heavy. It's just as painful as it was from day 1. I'm getting CTscan's every 3wks. The most recent one shows simply NO changes. It's really becoming a weight (perfect pun, unintended). NS said that if it's still there in a couple months (despite this whole "it willlll re-absorb, it willll dissipate" watch and wait methods which I've been told this whole time) we may visit other approaches-surgical. Ugh. It's at a hard 8/10 pain. I've gone w/o the meds every once in awhile to see what the "baseline" pain is & it's as strong as it was from the beginning. It *****. I finally got the clearance to start Physical Therapy this month. Everything was still swollen & as he said "acute" to start before this. The muscles on the right side of neck(right side of incision) have become so.... flat. Literally. That worries me, but I've the "brick" to deal with, so I'm just believing that the muscles will work out in the end, through PT.
My NS just recently sent me to Pain a Management where he said they would take over the meds., have other means to help with the pain-he mentioned a TEN's unit(I've SOOO badly wanted a TEN's unit), accupuncture, eye. So, he filled my meds until I saw PM. I went in for a 45min. appt. w/PM. It turned out to be less than 15min., no physical exam of any sorts, (didn't even ask me to move my head, look at the neck..,nothing at all). They didn't ask me more than one question about the pain. In the end, they basically spoke to each other-treatment plan was injections. When I asked about accupuncture etc., as well as about the medication,  they said I wouldn't benefit from accupuncture at this point & that tgey don't rx pain medication. They also said the at my "age", I shouldn't be experiencing this kind of pain. I didn't understand that. Still don't know what my age (41) has to do w/the "brick". I'm thinking I was sent to interventional PM...not PM that (I thought) was integrative....!?!? Left confused and frustrated. I know I can't just stop the meds. (I also know the level of pain...I don't want to hit the wall I did a bit back). So, it wasn't what my NS described. So, I'm lost there.
Basically, I'm still where I was. It's wearing in me.
I'm still getting dizzy, (falls), memory (short-term, loss of words) still off-but improving, stuttering is improving at times. Unfortunately though, the tinnitus in left ear returned the morning after Christmas. I woke up to that sound and just cried. It's not stopped since that morning. It makes me feel bombarded.
I do have a pressure thing that's been going on-along the base of skull -in soft tissues-like a water balloon ready to pop.
Ugh. Chiari. That's my update. Still on this "brick" road.
I hope all is well with you guys!!!

[Emme80]

Hey Kerri... you had your surgery in the summer, yes? I read about your recent numbness episode-that's scary! Is that what made you switch to another NS? When is that appt? I think I read In January...is the dent still there?
It's a relief to know (but I'm not saying at your expense!)  that others are still facing post-op issues. This has been the biggest struggle of my life. The point of the surgery was to hopefully find relief. I'm hopeful that SOMEDAY this brick will go away...and I'll be able to step back & see some of the benefits. My NS is thinking about approaching it surgically. Which in one hand-great-if it'll get rid of it, hurt from a week or two from being cut again, BUT, I really dread thought of a knife again! I'm dreaming of getting off meds. one day- sooner than later- but, as the most very recent CT shows, it's still very there. (I don't need a CT to tell me though, I can feel it..) And it's as painful as it was since day 1, this mound on the back of my head is NOT a pain I anticipated.
Now, I'm just so completely lost between NS and PM. I know right now, taking me off the meds. (And w/in 2wks.  for which the PM Dr. didn't even leave a script for the "2week taper" before he left for a week. So, that leaves me short) is going to send me straight up to crushing pain. Besides that, I thinks it's strange that I'm being taken off the meds-having nothing to do w/the pain- but b/c this PM Dr. doesn't work that way (pain meds). So, he is taking me off...b/c of the way HE works=no pain meds....NOT b/c of what pain I have. That's actually not even a factor. Yet last month, my NS said I needed to stay on this dose for awhile...while we waited a good few months to see if brick would blow that we reached an not over medicated & not under medicated dose. I'm confused.
I don't know what to do /think about this immediate situation .And then I'm also still hoping & praying I'll wake up one day & this brick will have just broken-up & will resolve itself!
So...
This darn brick!

[KerriC1]

Yeah surgery was in July. I had about 5 days where I felt alright (except for the miserable surgical pain), and then things started going a little crazy. Severe migraines, more intense visual disturbances. Numbness and tingling. Every time I tried to speak to the NS regarding these issues I was kinda blown off. Told it was CCI, and to wear an aspen vista collar. I would email and they went unanswered. I just gave up trying and decided to seek someone else out who may actually listen to me and not blow me off. The numbness thing started growing and now I've had episodes where my thighs feel like they are literally on fire. Seeing halos in vision and blind spots. It's just crazy, and I feel like I'm going mad! The dent is still there and it's quite uncomfortable to say the least.

Do they think surgery will help rid this brick? I think if they do it would be worth a shot. It sounds awful and if you would get some relief, it's something to consider. Although the thought of another surgery is scary. I hope they come up with a game plan for your pain to get it under control. If they had to walk in our shoes, it would be a different outcome I'm sure!

[selmaS]

  So sorry to hear you keep getting the nurse and the "royal Chairi runaround"
.....It does seem like she is not understanding what you are trying to convey.

if the office is close enuff I would go over and try to explain in person...as it may be helpful for the nurse.....?? Maybe the Dr will over hear and ask what the issue is??? worth a shot

[Emme80]

Woah...that burning bit sounds horrible! I'm glad that you're seeking a new NS. I will decide if I should stick w/this NS when I see him in the 14th(my next, monthly f/u with him). Based on how he's going to handle this weird situation (really, if he never truly GOT the msgs. regarding the confusion over the PM (what he described to me)   what HE said, if this wasn't the right one & this nurse never got him the msg., I find that wrong wrong wrong. He's said before there's issues w/him getting msgs. about issues. It seems like the nurse kind of screens what gets to him & what doesn't. In this case, on paper, I was sent to PM, but not what he described-it's conflicting. He said I needed to stay in this med. for awhile while we "watch" the brick, as he well knows this has been THE biggest source of pain...
So, I'll see how he is w/me on next appt. (until then, I don't know what to do for meds. as what they put me on to taper is falling way off from "managing" the pain. And there's the little fact that the PM Dr. didn't even leave a script for me for the "2week taper off meds. altogether" plan they have (leaving me 6days short, by the time he comes back). Even the PM nurse seemed confused by this. So, the "answer" from her is go to ER when I run out :/
As my NS has mentioned surgery, I'm at a point that is take it if it meant no more brick. I just hope I wouldn't develop another "collected fluids" mound , round 2!!! That'd be my luck.
Feeling a little shoved off by both Dr's, like the msg.(s) haven't actually gotten to my NS (she hasn't said that "he said" at all).  And frustrated...I hope your new NS appt. is a positive one-that he listens to you & will help you sort out the cause of these very problematic issues for you!!! Please do keep me/us updated.
(I found it strange and funny, but not..that the PM said that I shouldn't be experiencing pain like this at my "age". I did say today, that I know my age was mentioned at my appt., but I want it on record that I don't know that post-surgical collected fluid buildup causing pain, nor does Chiari, care one bit about age... unfortunate as that is. :/

[Emme80]

Indeed Selma...I just talked with my mom about it & as I'm still unable to drive, she's going to take me there on Wednesday. He has clinic on Mon., We'd., & Fri. He does surgeries on Tues . & Thurs. (he's on call for the university medical center neoro. surgery team on Tuesdays...schedules the bigger surgeries, like mine, on Thursdays.) so, I'm going to give that a shot. I'm going to call 1st tomorrow morning to see if there's any cancellations for Wednesday as well. I just... I know that going off the med. at this point will undoubtably bring me to the floor pain again. Thespian has not chslanged-just more effectively managed. And I recall (as does my mom) that when I was put on this med. that when taken off, it would be done gradually over about two months he said. 2weeks seems quick (not speaking of the pain that I know would land me in the hospital kind of pain). I'm struggling with this different & decreased med. even now. I was at a "comfortable 4...flares of 5. It bothers me that me being taken off of this med. has nothing to do w/my pain, it has to do with the fact that this PM dr. doesn't work w/pain meds. & that's why he's taking me off. Nothing to do with the pain/regardless of the pain. Ugh. We'll see.
When I see him I want a plan in action though. I want to leave w/some kind of 2nd plan/Plan B in place.
(In regards ton"brick" or...if there's really nothing to do, is there anyone else to consult with? I don't have a clue, but what field does "brick" fall into? These are things I need to ask & get more of a...stressed put on it. The brick is title ing me out. That I know. Quicker the brick is gone, the quicker I can find out if that's what's causing the dizziness, return of tinnitus, vertigo (it's different than dizziness, the vertigo), stuttering, etc.) So, I just wish I could focus on brick next week vs. being all flustered by the medication situation. :/  

[KerriC1]

good luck in finding out what in the world is going on!  It stinks when you're trying to get through to the NS and receptionists or nurses don't give the message. Another reason I switched....

[Emme80]

Indeed. It's is & has been SO very frustrating! I'm not getting through, at all. I just heard back from the PM office today...turns out the reason there was no script left for me before the PM dr. left, is because he is NOT prescribing another medication. The only reason he wrote the script, last week, for one week, was so that I could get into my NS or my PCP this week and THEY would take care of meds. I've left yet another msg. w/my NS office today to inform them of this. I also asked the  PM clinic to contact my NS office to inform them of this-as I am obviously not being heard/"getting through/believed. So, I've yet to hear anything. But I do know that my NS does surgeries on Tuesdays & is not in clinic today. So-I don't know that I'll hear anything today-just leaving me stressed another day and night. The PM nurse said that if it comes down to it, I'll need to go to the ER. I dread that. And I'm unsure if the ER would even rx meds.,  just because of the situation in in... I don't know how this works-I've never been in a position like such. The pain right now has me unable to put the back right side of head on my pillow again, I barely slept, it was a "breathe through it" all night...and still is today. Hurts to cry. It's at a strong 7-8. Just trying to hold still.  
I wish I had an e-mail or some kind of more direct line of reaching my MS, because this is just nuts- the lack of communication & understanding. I do certainly hope PM contacts my NS office today , as he IS in clinic tomorrow & maybe this can be sorted out-so I can be a 1/2 normal person, who can move around & continue pushing my body to regain strength, stamina, PT, go to the grocery store & walk around...function at a "managed" level. Then, I can focus on what I want to come of my next appt. w/NS, what I need to ask-regarding the brick- the culprit at the bottom of this mess.
I so dread the idea of going to the ER....the last time I was at an ER was a fully traumatic experience. A nightmare for sure. Even the head Dr. apologized-he knew it was baaaddd. Ugh. I'm tired of the brick.