8 mo post op ACDF C-3-C-6

[PepsiDoodles]

Hi, been a while, not been doing well under any circumstances, still looking for answers...

I had ACDF in Sept 19th 2014 C-3 through C-6 with a sryinx at C-6 through T-2 complicating things,,,,, and the surgeon guarenteed me he was an "expert in the sryinx " ok found out he isn't just a few weeks ago,, this is getting very complicated,, any input is welcome looking for help.

Pre Op prep, nurse ask's me if am allergic to the prep stuff chlorhexadine, told her most likely look at my chart am highly allergic to everything including tape, so she precedes to show me how to use this pre op stuff, ok use it get to my privates it is burning like acid I am grabbing the nearest towel and trying to wash it off, nurse comes back I am in tears call her a fuking bitch she shoves something into my IV, I am "out"

surgery is over, dr and friend in front of me, dr is saying I don't know why she is so drugged up, it is from nothing I gave her, I am screaming from the catheter, the nurse dipped it in the chlorhexadine also, told the nurse if it was not removed I would do it myself, ok got it out,,, years ago my uncle did a 13 hr surgery on my leg, said I processed meds faster than anyone he ever did surgery on, maybe I saved my own sorry ass??

ok, the rest of the chemical was never washed off, dr leaves for the rest of the 4 days I sit in the hospital and the chemical eats at me like acid, 4th degree burns going on, bad ones, not one dr had them treated, I asked them to please do something anything, I had to get the ice 24/7 to keep on them, then they brought another gal into my room with some antibiotic resistant open huge leg infection whole leg open, for real, I go to nurses station, umm humm, hello,,,, the gal in my room, they all look at me an say oh we can't talk about her because of HIPPA< i said I know HIPPA very well all fine and dandy, but there is a thing in this country that still works called FREEDOM OF SPEECH and you have 30 min to get her out of my room or move me I will be in the observatory thank you! They were wheeling her out before I got half way down the hall.....


ok get better,,,,,,post op pain continues, I get sent home with a shopping bag full of do it yourself crap for the burns, had to go to GP for care...

anyway, develope PHN pain by mid Nov through whole body, then by end of Dec, the PHN pain has made a line through entire left side of body head to toes bad intense extreme pain, on right side to but extreme on left, paralysis issues start to happen,,,,

they continue, meantime dr do nothing I have to tell the idiot what to order, nothing leaves his dam office except what I happen to get into my dam hands

it gets better, this is just a little of the nightmare!

am begging for help from any dr who will listen, litteraly, the pain is so extreme, ER can't do a thing do not know what they are dealing with, no one knows not even idiot dr

he offers to send me to a dam shrink for the pain and paralysis issues the fuker

finally after 4 months of denial afer denial of referral after referral and 1000's of phone calls later I must of called GOD is all I can think of, got approved to get my ass to Stanford finally!

even had gone to theirER in Feb and they said I needed to be seen there ASAP, and had a letter from the HEAD CHAIRMAN FOR THE FEDERAL GOVERMENT OF NEUROSURGEONS FOR NIHS AND NIDS TO GET MY ASS TO STANFORD OR UCLA AND IT WAS DENIED, MY INS IS CRAP!!!

ok, FEB 26th bug bite like on back of neck,,, March 2nd whole left side of body an face have paralysis issues go to ER, ask about bug bite

Dr says shingles, am llike WTF?? shingles, wth are fuking shingle?? never had dam shingles

put on antiviral med, follow up with dam dr evil on the 9th, took a few friends with me, had already shown all my other dr's the dam shingles

asked him what he thought about shingles, he about shit his pants, he said I will call every dr you have an tell them you don't have shingles, I said oh, really, what number would you like first? take a look I believe they are still on my neck and spine BTW, and here is the ER report ya fat bastard, ok left the fat bastard part out lol

then I asked him what he knew about internal shingles, he screamed at me they don't exist! left the room and came back about a half hour later yelling I need a shrink, I said great, ya can pay my friend here she listens to me on the phone every night now for 7 months straight! Then I said and my landlord is a shrink, and was the head shrink for the 3 largest prisons here in the bay area, I talk to her weekly would you like her number you might need it, god I was mad, I said you have let me suffer for 7 long months an not done a dam thing!

ok left there mad as hell and in severe pain end up in ER that night with paralysis on right side now and more shingles

being attacked by shingles all over body crossed side and they have not stopped

the only reason they broke out was I was fighting so hard with my dam insurance case worker as she continually harassed me and abused me daily and she cause me to have 3 bad attacks of them I had to tell the insurance they are no longer allowed to call me period I will call them from now on that was abuse on every level!

ok, get to Stanford, see new NS, he agrees something going on, he also agrees could be internal shingles, wants me to see a neuro there to rule anything else out also, so see her Thursday on April 16th, very nice helpful, get referrals to pain clinic, she offered a pain pump I declined, know the complications, but going for the nerve albations see if it helps first, did have the botox, worked awesome for the headaches and spasms so far, just mild head pain now, but the dam nerve pain an paralysis issues continue

ok sorry for the book addition here, did not plan on it,

now, looking at my MRI pre and post op, the one pre op,,,, my T spine is in OK shape for the most part, but in only 4 months, my whole T spine is in desicration it says, and does not look good and yes I have severe sharp pain in the T 4&5 area, am wondering if there could also be a small CSF leak going on that could cause this??????? I do know CSF fluid is like acid on the bones and will melt them like acid, it happened to my twin years ago from a bad epidural and went un checked for 4 years, her whole mid to lower spine had to be rebuilt completely!

So, my question is, besides being checked for the internal shingles with the disease clinic and all the complications like disiminated shingles an so on,,, should I send a note to the NS about the T spina an ask him if there could be a leak at the C-6 area is where it would be from what I can tell by looking at the films...or is desicration just good old arthritis lol?? someone please educate me so I don't look like a crazy fool thank you! confused:

[Maria]

Pepsidoodles is/was a fellow RN and she is going thru nightmare hell guys.. if anyone can help at all please spend a little time talking with her because this lady is getting super screwed around by her insurance and most of healthcare team. And most of us have had some experience with either insurance BS and/or physician BS at some point.. this is ongoing for this lady~

[fuzzy]

It would be best to discuss with the neurosurgeon in person rather then sending a note imho.

[fuzzy]

I am not sure what you mean by your mri is in desiccation? Do you have a radiologist report? Especially comparing the pre op with post op?

I have had many mri's and have gotten quite different reports but if it is obvious it should stick out. Not everything is obvious.

[fuzzy]

Paralysis is something they should care about ina quick way.

I have had episodes of paralysis and by the time I made to ER of doc they had faded. So I was send away and the mri's were not all that dramatic to american docs and a little more to the europeans. These attacks were clearly stopped by surgery. Pain is my big plight these days, easy up to level 10, depending on activity level. Sometime I don't have choice, like I left the house and went somewhere and then it hits due to activity and its bad and I need to make it back to home. I have to take very high doses of pain meds and those are not only bad but the docs don't really want to prescribe them due to the severe side effects. It is nerve pain, caused by my spine but the exact biological mechanism is unknown so no remedy. It is hard to find good specialists, especially if you have to deal with an insurance that dictates where you can go, I can only offer you, don't give up. Its not in your head. Sometimes one need to be open to the possibility that the cause is something completely unexpected and there is the doc out there who has seen it or knows his stuff. In places like Stanford the odds are somewhat better so give them a chance and try to help them with good descriptions of the symptoms as that is very important.

[PepsiDoodles]

Thank you so much, really helps allot, the Dr's are real great about the email replies, they do take the time to answer them in a very detailed and timely manner, have not had one go unanswered for more than 5 hrs yet..so kudos to them for professionalism!

I feel comfortable enough to send the question to the NS, just was wondering if anyone has had that one their MRI before, and what it meant, as I have never had that term on mine ever, and for only 4 months post op, and now my T spine in total destruction basically and showing subchrondal cysts also in the T 3-4-5 area as well, along with the desicration of the entire T spine just seems very odd nothing like that in Sept pre OP....

About the internal shingles,,, about 6 hrs ago got a message from my neuro at Stanford confirming the internal shingles and will be hearing from infectious disease dept Monday maybe sooner if chart can be processed fast she said, ok not all in my head

Finally might get some help here after the long many days months of extreme suffering that would bring the strongest to their knees and beg for an IV and a padded room, not kidding either it is that bad! having a rough one now!

Like I said there is more to this story, it is also a legal matter so I have to be careful how and what I word, but there is also another case just like mine being treated at Stanford right now, we have been chatting all day, met a few days ago by chance on a forum for this condition of internal shingles, and it being so rare, I about fell over reading her story, it looked like mine!

Now if you look up in my first post about the burns, my fear about them was a secondary infection, who knows exactly how I could of gotten them, could of been through the surgery even, but from what I do understand this type of shingles is not the kind one just developed, no one develops this kind, they are grown in a lab!

Back to the post op of recovery the part where the dr says her does not understand why I was so drugged up,,wish he had done a toxicology test on me then, I remember being so doped up and have never been like that post op from any surgery, was like that for about 15 hrs post op! Have to wonder if the nurse knew I would be coming after he in a legal way an tried to off me, who knows,,,,,,,BUT,,, at the place I had the surgery, is one of the largest places in the world for infectious diseases, not just the country, but the world, and guess where?? 1 floor below me where I slept for 4 days! So, I will never really know, but this gets a little weirder,,,

hope you are still with me,,,,the gal being treated now,,her EX is a neurosceintist in the lab where my surgery was done and her surgery was done around the same time and she was going through divorce, she said he was a monster,,, so how the hell did she get this also??? And maybe once the nurse herd I lived through the surgery could of been easy to shove anything into one of my med packs in those 4 days, who knows, only way to find out would be to tie her to a chair and torture her.....

Anyway,,the gal being treated now, her number values are way lower than mine, mine are at least 30% higher, so they should be calling my ass soon, but at least now I can bring the legal team in as have proof now for this,, can you even begin to imagin having a sryinx, or long cyst tumor like thing pushing on all 31 nerves in your body already but hey lets throw in internal fuking shingles, it was I want to die pain, it was and is so dam bad, only way I had a clue as to what i might be dealing with was the antiviral took the edge off the extreme pain for the very first time in 7 long months!

That was when I knew something was linked to it, and started researching and asking questions and doing homework,

Also during my quest,,, post op protocol,, 1. when a patient is seen post op 6 weeks an is in extreme pain monitor patient 2. when patient continues to complain of extreme post op pain admit patient into hospital run all films 3. if no mechanical cause for the pain can be found for the extreme pain 4. give patient nerve root block 5. check patient for internal shingles first read it in black and white, that is standard sinal surgeons post op protocol for extreme pain patient that has progressive extreme pain like myself

When I told the NS at Stanford the surgeon said internal shingles do not exist, he said he was full of shit and he knows it....

Also, internal shingles can cause complications like I have and lead to Guillian Barre which leads to paralysis, what is happening to me and has been happening along with Ramseys Hunt syndrome, but mine is Bi-lateral now as it has gone to long with no care, and I know this..am very scared of what internal damage and organ damage has been done,,but need care now!

Am sure will need a plasma infusion for a few weeks only thing that will help with internal shingles and IV antiviral therapy a few weeks also

No one tells you these things we get to learn as we go, but with any spinal surgery there is always a chance of internal shingles, but when a patient has a compromised spinal cored with a sryinx and chiari malformation like I have the odds go up by 10%, if my so called idiot surgeon was the expert he claimed to be he would of had known this and known my symptoms from the start!

A friend of mine I called just a week ago on a hunch, just a hunch to ask his opinion, I did not get half way through a sentence and he was describing my condition in detail, then asking what meds I was on then asked how long I have gone with no care, when I told him 8 months I could hear him screaming all through my house on the phone! He said call me if you need any help with any of the Dr's pushing on any of them I have the credentials as much or more than many of them an you know that I have your back! Yhank god someone knew and knows I am not a nut job!

So, took him up on the offer, my neuro started off treating me as the nut job so had dr nice give her the call and he straightened her right out, love him

Thins is still my question about the T spine, should I go ahead and ask the NS his opinion or ask what that word referrs to and if it can be caused by a CSF leak? And see if he thinks a myleogram of a pressure check is in order??

Thank you so much all this is an has been so ugly, Maria has been such a blessing through all of this hell I have been through and it really has been hell in every way shape an form!

But I am all ears to all the question I should be asking!!!!

[Maria]

Desiccation.. or dried out discs. A number of my MRI reports have desiccated discs on the report especially where I had the L4 and L5S1 discectomies.. severe desiccation.

Do you think that's what the report meant to say?

[fuzzy]

Mine are all black, is that it? They want to (or should? ) replace them all but its too big a job.
I too have a syrinx, from c6 to t11 but it is unknown how much it contributes as some comes from higher up and goes down my arms.

[PepsiDoodles]

Originally Posted by Maria

Desiccation.. or dried out discs. A number of my MRI reports have desiccated discs on the report especially where I had the L4 and L5S1 discectomies.. severe desiccation.

Do you think that's what the report meant to say?

Could be Maria, not real sure, could be just old age lol, will leave it be then, an focus on the internal shingles am dealing with from hell ! Eye Dr upped antiviral and eye drops yesterday, helped heaps, and with the PHN pain, called and left a nice message for the Dr who lowered the antivirals, a Thanks, not have the little bastards in my eyes and head! Onto the many calls for the day! Fuzzy, not sure, you might go onto face book and look up syringomyelia and chiari research there is a page for it if your syrinx is rounder in 5 mm or if you have ch 1 there is a large study going on back east headed by the best Dr for your condition period, it is all paid for, all follow-up care paid for, travel you name it paid for, they also work with your home town dr's to guide in your continued care while at home, but you should check into it if ANYONE has mentioned that kind of a surgery overhaul to you with that kind of a sryinx involved! Best of wishes!

[PepsiDoodles]

Originally Posted by fuzzy

Mine are all black, is that it? They want to (or should? ) replace them all but its too big a job.
I too have a syrinx, from c6 to t11 but it is unknown how much it contributes as some comes from higher up and goes down my arms.

look at my last reply

[Maria]

Pardon me.. desecration.. (correct spelling)

I am certain that was a typo and it meant desiccated. There's other terminology used when there's indication of arthritic changes.

Flattened out desiccated discs (severe/extreme) appear black.

Am sure many of our spines are pretty desecrated though after all we've been thru!

[fuzzy]

Originally Posted by PepsiDoodles

Could be Maria, not real sure, could be just old age lol, will leave it be then, an focus on the internal shingles am dealing with from hell ! Eye Dr upped antiviral and eye drops yesterday, helped heaps, and with the PHN pain, called and left a nice message for the Dr who lowered the antivirals, a Thanks, not have the little bastards in my eyes and head! Onto the many calls for the day! Fuzzy, not sure, you might go onto face book and look up syringomyelia and chiari research there is a page for it if your syrinx is rounder in 5 mm or if you have ch 1 there is a large study going on back east headed by the best Dr for your condition period, it is all paid for, all follow-up care paid for, travel you name it paid for, they also work with your home town dr's to guide in your continued care while at home, but you should check into it if ANYONE has mentioned that kind of a surgery overhaul to you with that kind of a sryinx involved! Best of wishes!

I was initially accepted in that study but they kicked me back out for too many complications even though the study was not restricted to exclude previous surgeries or other concurrent complications. I still believe the studies are too focused and exclude too many real world cases.