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Well, it was Good while it LASTED!!
........ok, so I take my x-rays of my lumbar in to my Pain Doc.....
and he said, "Well, no WONDER you've been having the lower back pain and muscle spasms.......one of your leads has completely migrated OUT of your dorsal column!" :eek::eek: Joy Joy. SO now I have the wonderful privilege of getting a revision done and of course he's booked thru the end of the year, so my deductible will start all over again............@#$%*^(@!! ........................................ http://dl3.glitter-graphics.net/pub/...utapqan9n9.gif |
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:grouphug::hug:z |
Oh NO RAE!!!!
Rae:eek:Im in shock here. I cant believe that has happened to you. Tell me why you went again to the Doctor to get xrayed, sorry I just cant remember. Did you notice that the stimulation was less or had moved? gosh thats awful for you.
So you are to have a revision, to re-do it I assume? What do you mean your 'deductible' sorry I think Im a bit DUH today!!!!.. Im so sorry to hear that I really am. After all the good news we have had from you over the past few weeks. I do hope you can have your revision done as soon as possible and get back to what you had when it was first implanted. Am thinking of you Rae:hug: Jackie |
oh poor Rae I am so sorry to hear this news. I hope you will get this revision done soon and that you will be back to "normal" soon. Do these wires tend to move easily? my dr has advised i do nothing for 3 months which is along time to not bend, stretch etc ..
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Jeez ~ I wonder how in the heck THAT happened! :eek: I doubt that you twisted, or did any acrobatics or twisted yourself into a pretzel. LOL :rolleyes: That's weird. :eek:
After I healed up, I went about my normal business and had no trouble at all. Scar tissue formed and held things in place. Maybe you don't form enough scar tissue??? Anyway I'm sorry about this ~ I sure you don't want to go thru that again. Prayers being sent your way. Take care. Hugs, Lee |
I guess we are all different and it could quite easily have happened in a stretch that you can't remember doing .. or perhaps it was just being plain damn awkward .. whatever, I am really sorry to hear this ... ((hug)) - keep smiley .. x
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Thank you my dear ones :)
Well, this is proof positive of why getting the laminectomy paddle lead implant is the BETTER way to go, as the leads probably won't migrate! I had the simple percutaneous lead implant, which means the leads were 'anchored'
in to the dura flesh which leaves a much higher risk for lead migration, of which I seem to have fallen victim to :rolleyes:.........and all along I was under the impression that this is something that happens to 'other' people!! :o This probably happened well over 6 months ago and I just didn't realize it. The only thing that I knew to be 'wrong' was that I was unable to use the other 2 programs I have because when I would ramp them up, it would feel like a horrible bee sting/pulling sensation.......so evidentally those other two programs were being shared off the lead that had migrated. The ONE program that I've been using and that works perfectly fine must just be running off of the 'good' lead........so I figured I'd leave well enough alone and be happy with my ONE program. The only thing that I can recollect doing wrong might have been last winter when my pond froze and I was using an AXE :eek: yes....call me stupid . BUT there's a good chance that this isn't all 'my' fault, as part of this could be that the doctor didn't anchor down this lead very well.....because really. WHY would I have only pulled ONE lead loose if the axe swinging was the culprit.? And, mind you, I was being as careful as possible.....but will be the first to admit that I probably DID overdo during my recovery time. He said the recovery time from the revision won't be near as bad as the initial surgery, but he will have to make the incision in the back to pull the lead back up to where it should be.....and also a small incision at the pocket site, but it won't be as intense because he doesn't have to create a whole new pocket. I should have had this checked out MONTHs ago!! I had NO idea the one lead had completely migrated OUT!!! I was floored when he showed me the xray!! And to answer Jackie's questions..... I went for the xray because my lower back was giving me fits and the flares just seemed to be getting worse, so I recently asked for an xray and that's when this was discovered. If I WOULD have found this out months ago, it would have been paid under my insurance plan because the deductible (out of pocket portion) of my insurance plan had been met.....but it starts all over again at the beginning of the new year, so I'll have to meet the $2,000 deductible all over again. Oh well. This isn't the end of the world. Others have had to go through many revisions. Just make a note of this and let it be known that LEAD MIGRATION happens even if we are none the wiser!!! :eek: I am very grateful for the lead that is doing it's job and the program it runs off of covers the lower extremity burning pain. After I get this other lead where it should be, then I'll have other programs I can choose from and have more variaton in the coverage I get. No more swinging axes for me.......or giving bales of hay to the horses..... I have 16yr old twin boys to do this!! |
Hmmmmmmmmm
Well thats something for us all to think about isnt it.
I would have thought at this stage Rae that you would be WELL over the healing process and 'anchored' to the extent that they NEVER move. I thought 6/8 weeks was long:eek: At my last tweaking session I got two new programmes but I cant use them because I get a pulling sensation in my left side of my tummy:eek:Gosh I hope nothing has gone astray!. I can use one programme which is great and seems to be 'settling' in, well I hope it is:rolleyes:and isnt planning on taking a little walk!!! Im sure Rae the bales of hay and the axe werent the culprit. I must say at this stage as Im getting a bit more active I do forget that I have this implant and that maybe , just maybe I should stop bending over etc etc:eek: I will definitely take on board all this information and start maybe taking things a bit slower 'just in case';) I hope the revision comes around soon for you Rae. I think your deductibles are the same as our 'excesses' which is the part that we would have to pay which our insurance company dont pay for......ah yes these insurance companies do make a HUGE profit dont they! Take care and I do hope it all works out for you very soon:hug: Jackie |
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So sorry about your leads. You just told me about the possibility of them migrating a couple of weeks ago when explaining that possibility and now this. You sound like a trooper though so I'm sure you will handle it. Since they are going back in though wouldn't it be better to replace this with the paddles? Just wondering. - Lonnie |
Good Question!!
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That is a VERY good question!!! When I was discussing the revision with my Dr, he said that if he has to do 2 revisions on a patient, then he will go in and do the more involved Laminectomy Paddle leads...... BUT, it is my understanding that it requires a neurosurgeon to do this and I don't think this Dr has those credentials (but not sure)....... Once I absorb all this information, I may ask him point blank about the paddles. Since the laminectomy requires removing a small piece of bone from the spine, perhaps this is why he drags his feet on this procedure. And to be honest, I was in too much 'shock' from seeing my x-ray, that I didn't really process this to the full extent. I have this 'down' time to consider these issues and am checking around on this. Very smart of you (and logical!) to ask this question! From my interpretation, he thinks he can go in and use extra 'sutures' and 'anchors' to the good lead, so it won't migrate and then re-do the lead that slipped down using better techniques. He noted that I am a much more 'active' person than he first thought...... ? ? ? Yes, this would raise the obvious question of WHY didn't he do this in the FIRST place!! :eek: He said it's been a long time since he's had to do a revision, because he is so 'Goooood' at what he does....:rolleyes: I have referred to him as my 'cocky doctor' on several occassions :) And like Jackie brings up.....the time for scarring in has long since passed, so I still have several things to get straight from this Dr..... Good LORD! :eek: I hope that the migrated lead hasn't SCARRED IN to the position it is currently in!!! :eek::eek: Yes, I will need to 'collect' myself and go in for another 'visit' with this cocky doctor...... Thanks for bringing up a very logical point, Lonnie...... And I hope things are going well with you! Rae :hug: |
Rae!!!!!!
RAE- How can this happen to YOU???? Not supposed to!!! Time they did this one as a "well, we didn't get it right the first time, no charge to put it back!! I am a definite fan of the laminectomy route, sure the healing is more time, but the feeling that all is still secure is a REAL BENEFIT!
They can't do this to my Sis! Wrong! Gotta get it right!! Do I need to come out there??? I would have to get admitted in Kansas, but gee, come on! You can tell I am kinda exorcised over this. Praying for a Good result Right Now!, Mark:eek: |
Oh My Lord Have Mercy!!!!
MARK???!!!
Is that REALLY YOU??!! .................................................. .....:thud: |
IT is IT is him!!!
:D:D:D
You Two:D:D Yes It really is him, isnt it just wonderful Rae!! We are all delighted to have him back with us all. Mark you always give us such great hope...........just reading your posts does it for me!!! Jackie :hug: |
Well HECK!!!
I'll YANK OUT MY OTHER LEAD if THAT'S what it takes to get your ATTENTION!!!:eek::eek::rolleyes::p
........it's SO good to have you back Bro!!! :hug::hug: |
Yanking is not an option
Doncha DARE Rae!! Yanking is not an option. You had better not. You have my attention, but I AMMMM........ waiting for a photo of the newby Nana, you gonna share?
You are are so important to me, Mark56:hug: |
So sorry to hear you're having to go through a revision, Rae and good to see you on the board, Mark.
I've been off the forum for a while now as I'm dealing with bad spinal fluid pressure headaches/pressure. I've been referred back to my old neurosurgeon who referred me to my pain mgmt. dr. (who put in the two SCS implants) for him to do a spinal tap and see if releasing some pressure will help. There was talk about possibly having to remove my two implants ( I said we'd fight over that one) as this only started since they were put in, but my optha-neurosurgeon suggested that if the high pressure continues to be a problem she'd rather see me get a shunt to drain off excess spinal fluid so I'd be able to keep my 2 SCS implants as she knows they help with the pain. Right now I'm on a high dose of a diuretic but it doesn't help much. Feels like my head is gonna pop and is affecting my vision. Everyone is still scratching their heads over this one. Hoping my old neurosurgeon may have some ideas as to what's going on. So, if I don't come on here much know that I'm thinking about all of you and that it's just too painful to move around much right now. Would appreciate your prayers :eek: |
Fiona
:hug:Thank You!:hug:
It's good to hear from you my dear friend! Thank you for the update! I can imagine how difficult it must be to get on here and looking at a bright screen......not fun when a headache is in the picture! I've been wondering how you've been doing. The thought of possibly having your SCS's removed seems absurd! You've gone thru SO MUCH to get those things!! :eek: The shunt seems like the 'logical' way to go......I'm not real familiar with what may be involved with this, but I have heard of it. I sure hope you find out soon which direction doc wants to take this.... Please let us know! Meanwhile, many prayers to you! :grouphug: ...... and with MARK back in the mix..... well, that certainly brings in more spiritual armory!! PRAISE GOD!! Oh, and a bit of good news, they were able to squeeeeze me in on December 31st to get my revision done! So, there won't be any 'out of pocket'! I HOPE!......I must admit, I am letting my imagination start to get the best of me a bit......I picture that stupid lead comfortably scarred in about 6 inches from where it SHOULD be!! :eek: Oh Lord, HOW on earth would he get that UN-attached if this is the case?? Would this mean a one-inch incision possibly turning in to a SIX inch incision?! Why oh WHY didn't I get this checked out months ago!!!! .....i feel like an idiot. |
Praying for you both
Fiona and Rae- Too much trouble to be handling right now...... so you are especially in my prayers. This body is praying for you. Pressure and revisions, awful. Hoping and praying that all comes into the good soon..... but the 31st? Sounds like a New Years Eve prank. Wish they could have done you earlier Rae!!!!!
:hug:Z in a big way, Your Bro, Mark56 |
Indeed!
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The more I think about this, the more peeved I get.....and deep down inside I somehow 'know' that I really didn't do anything THAT 'wrong' !! He simply did NOT suture it in very good! But of course he won't admit as such...... Oh well, I guess no amount of griping is gonna help matters. I may as well suck it up and let him CUT in to me all over again!! :eek::mad: I bet if we think hard enuf, we could come up with a ridiculous poem of sorts that would fit the bill here.......I certainly DO like humor ! Maybe I'll hop on over to the SCS (Simple Comical Stupidity) thread :D |
Oh Rae!!
New Years Eve :eek:for goodness sake, :mad: Im sure you could think of others things, like seeing your grandson;) on a day like New Years!!!
I do wonder too if in fact the sutures didnt anchor correctly for you Rae....I bet its maddening to have to go back for a revision, and so soon too....its a lesson to us all who have had ours done and also for those waiting to get their SCS ....to take it handy and no overdoing it!!!!!:rolleyes:..... Im praying Rae that this lead is 'loose' and free and not bedded down with scar tissue so that it will be a simple procedure for you.. Take care and will keep you in my prayers!! Jackie:hug: |
Fiona!
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I was only thinking about you yesterday and wondering how you were doing as you hadnt posted in a while. NOOOOOOO dont let them take those stims out!!! after all you've been through its not an option and make sure you stick to your guns on that. I too like Rae have heard of the shunt and Im hoping that this will be indeed the road they take to try and sort out this pressure you are suffering:hug: Will keep praying you will be well again real soon my friend Jackie :hug: |
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I am happy that 1. its not going to cost you thousands so by doing it this year you wont be any more out of pocket? 2. the revision will give you more pain relief but like Jackie and you Rae it's hard to believe the lead has come free so soon and it would be good to know if it was the dr who did not anchor them down correctly..but dr's are the same in every country they would hardly tell us its their fault!! I am sorry that it has to be new years eve as jackie said much better things to be doing on new years eve!! |
May the next last FOREVER
and ever, and ever, hallelujah, hallelujah.......
Oh, wait that is a song. Even so, Rae, your leads should be placed so they do NOT MOVE!!! Not at all. OK, nuff said, Soapbox speech ended, Mark56:hug: |
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And I want you to know that during prayer meeting tonight, I prayed for you Rae! :hug: Will continue praying that this revision takes care of things for good. |
More prayers here
Praying,
Mark56:hug: |
Well.....
I feel like a YO-YO the way my Dr's office is bouncing my revision date.
Found out today that the OR won't be open on 12-31....... Whatever :nopity: I swear his nurse is a basketcase..... communicating with her is like trying to eat spaghetti with a SPOON :eek: I'm sure I can find a $2,000 dollar bill if I dig deep enuf in my left pocket :rolleyes: yeah, right. .....hmmmmm, I wonder if the 'gratuity' is included in this nice new bill I'll have to pay.......:rolleyes: .......where is my RAINBOW PSYCHO-delic POCKET FUZZ when I need it!!!! :eek: ..........................http://dl8.glitter-graphics.net/pub/...rk0r2pofhw.gif.............. oh DEAR! What have I done!!! I have no idea what THIS is!!!!! ........evidentally I need to do laundry!! |
Sorry Rae
Both that you found THAT in your pocket and the surgery date yo-yo is running against you.
Sad, Mark56 praying:hug: |
I'm so sorry
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How frustrating Rae
Rae you must be beside yourself after hearing your revision is being messed around......Have to say was a bit surprised if you had your revision on New Years Eve, but hey who knows what these hospitals are up to and where in the name of God do they get these imcompetent people dealing with the public(ie...ur Dr's nurse:eek:)...I had to endure months with my Dr's first secretary, she definitely was a basketcase believe me...wonder did she move to the States:confused::D
Its a disgrace that you have to put up with it though and then to have to hand over thousands of dollars to get back to where it should be.....would still be of the opinion that the Dr didnt anchor the leads enough, who knows, well they wont admit it either will they?!?!?!? Hope your little grandson is keeping well and also your daughter, and that she isnt having too many sleepless nights;) Im sure Nana Rae is on hand if needed;) |
Which is why I was talking about getting admitted to KS
You know, wanting to help you. Get them to do it for no cost, kinda like a "oops, I should have done this better!" But then that means litigation. Oh, how docs hate that word when it has to do with what they have done.
Still praying about you and this, Mark56:hug: |
Hi Rae
sorry must of missed your post yesterday.. god i am sorry you are being messed about. How can someone schedule you for a date that the theatre is not even open!! so unfair that you are being messed about and dreadful that you have to now fork out for this yourself. Really hoping they find a slot before the end, do they have a cancellation list that maybe you could take someones place that changes their mind before xmas? Hoping when i get back to the site i hear some good news from you!! big hugs J |
Rrae, see if you can talk to the hospital yourself and find out what days the hospital is doing surgery. I know we are booked full with people who want to get in and get things done before the first of the year. It may or may not help. As far as the Docs nurse, I have found you can fight them ONLY by talking to the office manager or your doctor, the problem with doing this is getting labeled a "problem" patient, but sometimes it needs to be done, the hardest part is to get past the nurse to get to the doc in the first place. I had difficulty with my first pain doc and left multiple messages as she had promised to get my tial done before the first of the year. After multiple messages left, checking with my insurance company to see if they had applied for approval, I got a call from the manager one day basically telling me to back off they had done their part and I was to quit calling and wait for the insurance company to call back. When I told her I had contacted my insurance company and they told me they had NOTHING from them, she assured me they had sent it and it was "probally lost in the system", she then indicated if I persisted to call I would be fired as a patient. I told her I was a RN, was not asking for medications and only following up and being proactive for myself as the MD had promised me to get this done before the first of the year. About an hour latter I called the insurance company again and then called my previous insurance company found out they had recieved all the paperwork but since I was no longer a client of theirs they did nothing with it. You can bet my SCS that I called the clinic manager back told her they had sent the info to the wrong company and I was going to talk to a lawyer about incompatance in the office, I got a call withing 15 min from my doctor telling me that she was sorry about all the mix ups but she did not feel she could treat me, she would set me up to see one of her partners for my next visit and there was no telling when I would get approval from my company. Well in March I finally got my trial, I love the doctor I see and have had no more problems with the office or my doc. I also have issues with my primary docs "phone nurse", she tends to decide if I am calling for "personal reasons" or needing medical attention. I have reported her several times to no avail but that will soon come to a halt as she just recently put a note I called about a patient for surgery on the bottom of the pile so my doc did not find it until it was too late and the patient had to reschedule surgery!!
Moral to the story, be proactive for you! :grouphug::hug:z |
Oh good grief.....
Doncha just hate it when that kind of incompetence results in a shift of the whole affair to someone else. Your doc basically fired you?!?!?! Gee whiz, I should go into malpractice, gotta be a LOT of that out there. Now, where is my shingle....... oh, it's in Rae's left pocket.
Mark56:D |
Well thank you!
Pooh, you are right! I'm sorry that you tell me this through personal experience however! How very stressful it must have been during all of that!! :eek:
I've decided ONE thing for sure.....I'll play along with this YO YO thing, and I'll get revised when it happens....and I'll do my best to get along with everyone....BUT, as far as the $2,000 deductible....well they are gonna EAT it! They'll just have to settle for whatever they get from my insurance. I am NOT paying that amount of 'out of pocket' . For a repeat of a procedure in which they got $100,000 the first time around!! And ANOTHER thing! :eek: I am gonna make mention that MY INSURANCE is DONE after this procedure! I want these people to be of the impression that if it doesn't get done RIGHT THIS TIME, then they'll be doing alot of PRO BONO the next time around. This whole thing just isn't fair to ANY of us......I feel bad for my insurance company!! :eek: Thanks for all your great input! :hug: OH! and Mark, I dug very deep for a shingle, but PUPPIES kept popping out of my pocket!!! :rolleyes: |
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And yes Mark, she "fired" me but I got the better end of the deal with her partner... This office is very strict and let you know up front that..... If you are 10 min late you forfit your visit and pay for it, insurance will not cover for no shows, 2 no shows and you are out, If you do not follow the narcotic contract, you are warned once then out, drug screens are a posibility at any time...If you habitually call in on Friday or weekends for narcotic refills, one warning then done. The doc who set up the practice in the first place was apparently burned so.... All of this is outlined in your information packet with your intial stuff from the office. I have had no issue with my doc, and the former doc will not look me in the eye when I meet her in the hall and one time I had to have her check a wound that was infected and even then she would not make eye contact at that time Oh what fun.....:p |
Glad my pain doc is human
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Mark56 |
Rae
I am so sorry you are going through all of this Rae! You definitely do not deserve it. I am also sorry that you went through that too Pooh with your old doctors. I understand where you are coming from though because I had to get rid of my old doctor and nurses that were treating me so bad and now I am so thankful I did. My new pain doctor (who taught my old one) was floored when I said she never let me be on pain meds and when I told him how she was mean to me when my parents were not around. It was so hard because I was nervous and never had to face changing doctors like that but I wish I would have done it sooner because I suffered over a year because of her and also her surgeries were not as good and we think that is why my leads kept moving. SHe called me her problem patient and said she never had these problems with anyone else and believe me I was not being mean I was just trying to get some help. I am also glad I did not go with her surgeon either because he laughed when I was nervous about the laminectomy and that is never a good sign!
The fact is you deserve a great health care team and no one should be treated this way! I always think that if people are mean to me they probably take advantage of others too. I also think that when our leads move or whatever they should fix it asap because it is their work even though they will blame it on you or whatever. Through talking to all of you guys, I have learned how important it is to be proactive and that we do have rights as patients and that we can fire our doctors just like they can fire us! I really really hope and pray that you get this revision scheduled and taken care of so that you can feel better ASAP! I hope that maybe you can find someone that will treat you better and not make things worse for you, the stress of having a doctor office treat you bad made me feel even worse :( I always talk to my friends that are going into nursing about stuff like that because they need to know how their patients are being treated. However, I am very thankful for good nurses too and I plan on sending Thank You cards to two of them that were so nice to me in the hospital. Wow, I am sorry this is so long must be the meds....I just really feel for you Rae, and I do not want you to suffer anymore! Take care of yourself :hug::hug::hug:'sTara |
Me feel for you too, you know
:hug:Hey Sis- :grouphug::circlelove::rm_milk::Sorry::smileypray: :smileypray::smileypray::smileypray::Soapbox::Hear t::Heart::Heart::Heart::Heart::Heart:
Mark56 |
Rae, you poor thing!!
Rae:hug: Its bad enough having to go through a revision, but then to have all this other stress must be just so bad!
Im really sorry for you, you have enough to deal with. Bloody insurance company too....I know you have a different kind of Social Welfare system in the States compared to Ireland. But at the end of the day insurance companies no matter where they are , are a bunch of rotters. They definitely love scamming people dont they:mad: Hope your well otherwise and that your grandson and daughter are both doing well too...... Jackie:hug: |
Hugs!
Thank you all so very much for all this attention and support! :grouphug:
........I think I feel another puppy squirming around in my left pocket :D Somehow things seem 'ok' for me.....probably because of the precious little guy in my life who has made my heart melt like BUTTER!! :rolleyes: My grandson (Aidyn) is way too cute and his pic is on my phone 'wallpaper', so I see him every time I phone or text.........somehow his cuteness graces over any stress I am facing and it makes things seem 'ok' :p ........however, we'll see what frame of mind I am in AFTER the actual revision takes place....... ! Will I still be allll :inlove:, or will I be more like :Soapbox::deadhorsebeat:......we shall see....... It's kinda hard to paint the picture of the relationship I have with this doc....on one hand, I just can't help but really like the guy......he truly does have a good reputation, and he's had one hell of a bad year..... He's the one who found one of his friends DEAD on their bathroom floor from a sudden heart attack (and HE ,the dead one, was our very 'renowned' one and only HEART DOCTOR who ran the big 'Heart Institute' wing of our hospital) :eek:.....plus he's going thru divorce procedings and that's why one of my tentative schedule dates had to be changed was because he had to go to court that day for his divorce trial....... Lord. :Noooo: Surely he wouldn't be doing this to help pay for court costs ...... :confused: Nahhhhhhh.......... :icon_eek:........ I'm determined to have a good Holiday season....... There are others who are going thru much worse than I....my situation seems 'pale' in comparison to what some folks are dealing with! I just LOVE you guys! Each and every one of you are like family to me :grouphug: Thank you all... Rae :Heart: Mark, I completely LOVE your Doctor for seeing to it that you didn't completely fall apart! You have come so very very far and then you got sucked up into that horrible dark cloud......... If I could hug that man I truly would! :hug: And YOU, dear Bro will get a huge :grouphug: in PERSON!! This, I guarantee! You live in the state right next to mine, and we have relatives who live near you, so......WATCH OUT!!!! |
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