Hi..welcome back stranger...lol....
Sorry u r still dealing with this letter situation....sorry I can not help u there, but I think we have a member that said she did this type of work and may be able to offer insight.
Good luck and do let us know what happens : )
It's one of those things that's like bugging me because I can't figure it out...
Its just an annoyance really, but to me, I'm retarded and OCD about it. Lol
I know just how u feel....it is very frustrating as we know what needs to be done, but those that need to do it just can not figure out how....if only we could do it for them....write the letter and get them to sign it,....lol.....that would make things sooooooooooo much better.
so what was the outcome of the Arnold Chiari diagnosis?
Hi everyone, I am 7mo. post op PFD for those who are new.
After my surgery, I was taking oxycodone; my only complaint was constipation. In a false sense of security!--& knowing that it's a controlled substance--I requested Tramadol for pain management. In retrospect, I began having problems with it right away, but was distracted & stressed by something else for 2 months.
I had severe insomnia, at which point a Chiari patient told me not to take it at night. But I became increasingly agitated, so I took a SSRI to counter what was perceived as "anxiety".
Tramadol + antidepressants is NOT ADVISED (drugs *******, NIH, etc.). I was already intolerant of tramadol; adding a SSRI "most likely" (according to my PCP) caused Serotonin Syndrome, which could even be fatal.
There is even a minor warning against taking St. John's wort + tramadol.
I have been reading a LOT about this interaction, as how did I fall through 3 (THREE) cracks, including--& especially--the pharmacist!?
So, consumer beware. Just because this syndrome is "rare", it can & does occur.
(a study of UK drs. showed that 85% weren't aware of Serotonin Syndrome).
I'm on hydrocodone as of today.
That's where I've been lately (coping!); thanks for missing me. :)
I hope everyone has a pleasant day!
For some reason, my post was placed here instead of a new post!
Hi...sorry u r going thru so much and that ur Drs and pharmacist did not catch this med interation situation....goodness I always rely on my pharmacist to double check all meds I am on, so this is very scary....
I just found out a med is not good for those with EDS vascular....and posted it in the EDS group here on MedHelp as her Drs gave the med and now that poor woman has earned her angle wings...
So it is very important that we as patients some with multiple conditions read up on all possible med interations and side effects.
I had already talked to the (young) pharmacist who filled it, about it giving me insomnia. He suggested Benadryl. I think a more experienced pharmacist would've recognized that I wasn't tolerating it very well.
When I talked to him again, when I realized what was going on, he said he WAS aware of the contraindication, but didn't mention it, because "it's rare". Well, it wasn't rare to me!
The drug interaction--nor even insomnia-- was not on the handout. The FDA wants the warning right on the label.
I'm OK now, just PO'd that this happened.
Refresh my memory, do u have EDS?...If so, it could account for ur issues with meds...we handle or react to meds far differently then the general populace.
I am actually a medical coder for a hospital -the ICD-10 code would be G93.5. The ICD-9 code is 384.4. Since ICD-9 is not very specific they may have put a I after to show it is a Chiari Malformation type 1. In ICD-10 it is more specific - G93.5 states Chiari Malformation 1. So I am assuming since the ICD-9 code of 384.4 just states compression of brain they had to add a 1 so it was more specific for their notes.
I only found out about having CM1 on 13 Dec. The more I read on this forum the more I realize how much more I need to learn. I requested and got an appointment with a NS through my PCP scheduled for 25 Feb. Althoguh I am only between 2-3 mm I am experiencing a litany of symptoms which I understand is not unusual. One question I have is how debilitating does this have to become before surgery is warranted (if it is feasible)? Not looking forward to being operated on but if not surgery do I just need to figure out how to not only to cope but continue trying to live as full a life as possible? There are so many other folks out there like me that just keep on keeping on and my end goal is to "settle in" with the diagnosis whatever that may turn out to mean and live my life. The toughest piece of this so far has been getting/waiting for answers and sounds like something we must all go through unfortunate as that is.
I really appreciate everyone on this forum; what a difference it makes knowing there are others in the world that get it. Such rich treasures that I know will become more important to me as my journey continues. Thank you all.
What u want to do in the meantime b4 u get to a Chiari specialist is get a Dr to look at ur symptoms and do testing to rule out other conditions with similar symptoms...MS,.Lymes,Lupus....and then conditions related to chiari..sleep apnea, POTS, ICP, Syringomyelia,tethered cord,ehlers-danlos .....a CINE MRI to see if u have a CSF obstruction...over crowding , these all should be done b4 u think about surgery as there r many reasons u feel the way u do and many Drs will not agree it is chiari until there is nothing left to blame, then u do not want that Dr u want one that would have agreed after more testing to see what else in addition to Chiari is going on,
It is not an smooth journey from DX to the right Dr...but u have to keep pushing.
You are so helpful. Always there. Thank you so much and will continue to push ;-)