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Spine Related Near Death Experience?

This was typed for a Dr. Forum but they are closed out, so who better than the people? Right? I hope somebody can help me, even if it's just reassurance, "Hey, I've been there."
I am a fifty year old white woman with a very dense past medical history. I don't know though, if I've ever been in such a critical situation as I am in now. I had cause to find myself without the services of a pain management Doctor about 7-8 months. Which meant going cold turkey off 100 mcg Fentanyl Patch. Which in turn only highlighted what (I knew but had closed my eyes to) was, in fact, a much worsening problem in my spine. So I went to see the Neurosurgeon I had seen years ago, and rather than hearing, it's a little something something, as I was expecting, I heard something far worse, but at least it explained my unbearable, overwhelming, feeling that my spine was imploding. What began years ago, as a 1-2% slip, progressing to a 4% then 6 then 8 then 10 then 12 is now an 18% slip, or spondolyothesis, which he told me doesn't progress like this, normally, in a person with DA. He said, you have to have surgery, its not elective for you at this point. You HAVE to have to get this done. BUT, you're bones are brittle, you're diabetic, prednisone dependent, coumadin dependent (Anti-Thrombin III Def) prone to infections (been septic, several staph infections) you're on Plaquenil, you're teeth are bad, you have a strictured esophageus, bile and severe acid reflux, ulcers, Barretts, you are a nightmare for A/PLIF.  So, since I have a good relationship with him, I trust him, when he told me, M-, "I'm not touching you with a ten foot pole!" I was just glad he was honest with me. He said, he would write a letter to my primary care stating my need for pain medication, and taking care of some of the above, to get the ball rolling, so I could indeed, go out of town and find a surgeon who dealt in high-risk patients. Well, not one thing has been done. Not one. Which led me from spending 50% time in bed to 75% in bed to 98% in bed. Ok. I KNEW I was declining. I just couldn't put my finger on it. Whenever I would go to my Doctor, it was like I was talking to myself. So, I just quit going. And about a month ago, I kept being plagued with thoughts that I'm dying. And I'm NOT histrionic. But how do you tell someone, anyone this, without sounding somewhat histrionic? But I'm a writer. I come from a background of writers. And one day I noticed my writing was all off. Pure gibberish. Well, there it was, in black and white, literally. I was like OMG. Am I having a stroke? So, I went ahead and went to the Emergency Room. Even though it meant getting a bath, cutting nails, getting dressed, all the things a person in bed who is to tired to breathe doesn't have to do. As it turned out I had a B12 of 80. I mean all the symptoms of critically LowB12 could of been written about me. I was okay with that being the diagnosis. Only they would not allow a Neurology Consult, and I was speech problems, BI, etc... So, i was D/C, and about 2 weeks later, after I'd been pumped with so much B12 and I was not getting any better, actually, I was getting much worse. They would not re-check my levels, or check me for pernicious anemia. Which does run in my family, my great-uncle died of it. Because I then I started vibrating. And I may not be expressing this the right way. As my leg pain has been so horrendus, I feel as though my spine's been healed, can I say Hallejuah. That's a weak joke, just so you know. Only it's really not funny. This vibrating has a clear cut demarcation. Razor sharp about mid-stomach going down to the tips of my toes. It's 24/7 around the clock, never stopping for an instant. Here's the scary part. At first the vibration was a small circular area in the lower part of my abdomen. But in an instant, is when it went down my legs, with clear demarcation. So I called my sister, to get her opinion. Should I worry ENOUGH, to go to the hospital. As we were talking, I laid down, then BAM, I was dying, this nerve related vibrating went up my stomach, back, arms into my head. My voice was an echo. She said, are you there? I said Kathy, I'm dying. She said call an ambulance. I said I can't and I don't think I'd make it. And I meant it, I knew it. My body had drawn up. Later she said she has been around only one person who was dying, she heard that in my voice and she knew it too. That person too, had a spinal cord injury. I finally somehow forced myself into more of a sitting position. Symptoms went away. SNAP. Wow! This was recreated in the ED twice that night. Tests run? CBC, Chem 18, PT/PTT. And from THESE, they deduced I was fine, and was discharged, saying this is what MY Doctor said. I NEVER listen to my gut, but now mine is screaming at me. I was trying to get this through to my Doctors receptionist. He can't see me until next Tuesday. Do you know what she said, honest to Gods truth, so hope me help God, "M-, we all have to die sometime." After  moment of profound silence, I said, "I am well aware of that, but when a person recognizes they are in midst of a health crisis, and crying out to the Health Community, Help Me, does that mean it has to be today?" I know my body, I know there is something truly wrong going inside my body, I'm not entirely sure exactly on that, spine, vitamin deficiency, or small clot somewhere, am I just supposed to die? (I had recurring ischemic colitis-missing mesenteric artery + clotting disorder = capillaries that supply colon with blood would clot off every couple of month = another incident for over 15 years till getting dx. But it still happens occasionally. And the vibrating has moved into my groin, is the reason I throw the clot in the mix. Not that anyone is checking anything anyway.
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Avatar universal
P.S.  Bama, I'm sorry, I missed where you said an internist was involved with your healthcare somewhere.  And even tho you told him you didn't have Lyme because of a test, I do think you should be re-tested.  And maybe you could go to a neurologist doc instead of internal medicine docs, since I think that's what you were saying, that an internist didn't do right by you somehow.  And I don't think a possible Lyme diagnosis is THE thing with you, rather I think it's a possible ADDITION to your health issues.  So, sorry about missing that.  GG
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Avatar universal
Well, hello ANNOYED SON, and also a hello again to BAMA.  Bama, I'm sorry I didn't get around to responding to your last post.  I kinda checked out for a while and didn't get back to this forum for a week or so, and so I missed reading it.  I experienced an increase in pain from my back, and so I was coming unglued.  I've got my medicines straight now, tho.  But let me talk to SON first.

SON, I am so glad you care so much about your Mom.  You are right.  The thing is, after you live lots of years, negative stuff can pile up so high that it's hard to start shoveling it away.  Just when I was almost 50, same age as your Mom, I had my first panic attack.  It was pent-up emotion from a car accident years before, and so of course I was in a car when it hit me.  It was a lot like what happened to your Mom.  I was going on a trip for vacation with my husband, and it was a hot day, long hours in the car, and this huge bridge came into view, and I became so afraid, and since I was driving, I stopped the car right in the middle of the freeway at worktime traffic, not a good place to get panic disorder outta nowhere.  So, this is just an example of crazy stuff that can happen to regular people.  But I was lucky.  I found an excellent doctor who gave me some medicine and I had a counselor, and after a year or two, I finally got better.  I think, Son, you are right about your Mom's doctor, she needs a new one.  I hope you can help her with that, perhaps.

BAMA, I really liked reading your post.  You write like I do.  And I identify with your problems.  It's all just too much, this is SO true.  And I will nudge you just a little and say exercise is KING when it comes to finding a new life.  That's how you get rid of the tension, so you won't have so much to complain about.  It lightens the load, you know.  Oh, and the Lyme Disease thing, wow, that really MIGHT be figuring into your current spike in health problems!  I watched a couple shows on TV just recently about that very thing, real interesting how they say now that it might be the trigger for several rather major diseases.  Anyway, I hope a new doctor will look at that a little more closely and do yet another test for Lyme.  You know, see can you find an internal medicine practice of docs, internal med docs are very good diagnosticians as compared to family docs.  They can refer you to any specialists you might need, and they can also monitor your health and straighten you out in general.  

Look, after the 4th of July season is over, PLEZ let me know what doc you found and when you're going to go.  And also tell me if you've tried to at least walk around in your yard.  You might need some medicine to feel up to walking more.  Seeing a new doc, they might can handle that.  You know, I don't know if you have Fibromyalgia, but (a) that is a disability claim, and (b) Lyrica medicine makes it all stop hurting so much and helps with sleep (I take it).  So, I hope that's good incentive for you to get a new doc going.  Hang in.  GG  
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Avatar universal
Actually, Greg, besides, this new found "voice" rising up in my gut, telling me *WARNING-WARNING* you are the only one, other than my son, who speaks the voice of clear, sane reason.

If this is the case why do we always argue? why haven't you tried to do any changes these doctors have told you, mom you haven't even got a new doctor. You keep putting it off and blaming family members (who do everything for you, everything) you are poor broken guilt trip mary. All you see in my word s are evil hateful bashing but that is where you are wrong. I try to hit home with the facts with attitude, cause no one else will. You are still drinking 50 2 liters cokes a month and smoking over 15 packs of cigarettes a month. No change what so ever. get on you *** and fire that damn doctor that wont monitor you're B12 low levels and get a new doctor that is worried about her paitents, geez.
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Avatar universal
That should say **a bag of DIRT** and ** I told the internist I DID NOT have Lyme Disease** Sorry about the typos. I called myself "checking" it. Go figure! I also didn't realize it sounded so much of a "downer." I was meaning to thank you for keeping me focusing on what WAS REALLY IMPORTANT in spite of all the other Bull Malarky. And it's a good person who can do that. Especially to someone who is in the state of mind I am in. Really....I appreciate it.
Bama
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Avatar universal
Again, you're right. The ONE voice of reason, and I have to include my own cloudy my own judgement based on my own past experiences with uncaring, unscrupulous, doctors who are either dumb or negligent ( and THAT doesn't really matter when it's all said and done, does it?) so in that sense you are right, 100% so, I need a paradigm shift in my thinking, if I'm to make it through this, 1. alive 2. walking 3. living a life with ANY quality 5. a life without fear 6. normal sugars 7. NO vibrating 8. walking UPRIGHT 9. finding a Doctor who listens, respects and HEARS me. My sister, on her own, sent me a link to another forum that was posted in Med Help. She didn't know I had posted in here. MY posting had been set up by my son, or I wouldn't of done it. Anyway, THIS posting was about Vibrating and went on Chiari Syndrome and Lyme Dx. Interestingly, awhile back I had I had a tick latch on between my toes for over two weeks. It had come from a a bag from who knows where. A few weeks later I had circular raised rashes on my wrists and ankles and for the first time ever I had joint pain. But tested negative for Lyme Dx. My sisters internist in B'ham said, "Oh my, have you have you had a tick bite lately?" I said yes, but it's Lyme. She said, Dear, there are hundreds of tick diseases. Lymes only one of them. Anyway, I have SO many differentials. The Doctors today are HORRIFIED of people like me. So many tests, only one will be the right one, the others wasted. Medicare will be slapping their slapping their extragvant wrists! Honestly, I believe most think of this first, BEFORE thinking of their patient, who, after all, is A HUMAN BEING, not a Govenment Beauacracy. But, these are the times the times we live in. My MIND, has never really been really been affected, but my speech still is, which only means I gives I give a bad presentation, and I see their eyes roll. I wish I could just write it out and hand it to them, and say THIS is what's happening. Which would only cause more eye rolling. Again ggreg, I KNOW you are right. I have to let my let down feelings slip away, along with my fear and focus ONLY on finding a way, ANY way, to strengthen my body. Even without any pain medicine, support. Just get a belt or bone to bite on. Grit my teeth and get on with it. Or pick out a burial dress. Not to sound too depressing. Just being realistic. And I'm NOT ready to go. I've got a story to tell. And I have to be here, healthy, in order to write it. I'll need an editor. Otherwise we'll have something along the lines of War of Peace. Which is MUCH too long for a health gone wrong story. lol. (mine go back to age 24- I'm 50 now-SO many stories-They are all mind-benders! and I cannot state this highy enough. It's unbelievable. It's one of the reasons I'm ALMOST at the point to say "just give it up" it really shouldn't be this HARD!) Again, again, again, Greg. Thank You.
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Avatar universal
Oh, Dah'lin, I am sorry I jumped to conclusions about weight loss, I just figured with diabetes, a back that is compressed, and indigestion, perhaps weight contributed, so please forgive me on that issue.  With that said, I only mentioned it in conjunction with exercise, as that is really the more important issue here.  You must move whether you want to or not.  Laying in bed may be all you can do (and believe me, I am in that same boat from pain, fractured back, disability, etc.), but guess what? you CAN do some walking and it will encourage more and more, and you will feel hungrier, and you won't hurt near as much, it'll help clear your head, etc.

As for passing out, I realize you didn't say one word about passing out.  BUT I DID.  I said I felt your feeling of dying was more likely you were about to pass out.  This was in order for you to minimize that incident and stop focusing on how awful everything is, and instead focus on the good you could be doing for yourself to climb out of that deep black hole you've fallen into.  My suggestions to you still stand, you may subtract weight loss since you are model-sized now, but hon, don't resist so much.  Go for the gold.  It's so EASY.  Practice good health, get your surgery straight, and if you need to get a relative to take you there blindfolded and heavily sedated to it, then GO.  And I KNOW walking in the yard isn't going to mess you up with not wanting to go places, because I CAN'T go places but I DO walk.  And if your teeth are falling apart, it can't hurt to go at them great-guns and keep them real clean for about a month, assuming that's how long you'd have to wait for your surgery.

Now, I did not come back to apologize for anything before, and I only apologize here for saying you may have a weight problem, but I did say it in conjunction with exercise.  So, forgettabout where I'm wrong and instead focus on where I'm right, and PLEEEZ quit goofing off and get ahold of yourself, girl!  Instead of finding fault with everything, flip a switch in your brain and find the positive, and use your personal intelligence and power to make yourself well.  And don't take NO for an answer from ANY doc!  GG
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Avatar universal
Thanks for replying again. I admit I was feeling two things. One) sad, hearing again, and knowing, yes it's true, my health issues ARE too vast for Emegency Room Just as they are for an online forum. But where does that leave me, when that my own Doctor does nothing, and I dont have a car AND I have NO, and I mean literarily no energy, to the point of apathy. Only when confronted with death, do I finally even seek help. Which leads me to Two) I never said anything about passing out! I never did pass out! I didn't even come close to passing out. No feeling of dizziness. It was this overwhelming feeling of impending doom, one I've NEVER HAD in my life. It was pure dread. Something VERY BAD was happening to me. I was dying and there was nothing I could do about it. Even if my sister called the ambulance from her house, i was not going to be alive when they got here. My body drawn up knees to stomach, arms to chest, I told her I waited to late, I was alert the whole time, but crying from fear, and sadness. She found something on the Internet, related on the Internet, to severe spondolyothesis, iI didn't take notes, but it's something like making a final slip and in a certain position cuts into your cord cutting off your nerves. It has a name. She called me and said I think this is what happened to you. But still, even after they made me go through it 2 more times in the ED they didn't MRI my spine. Like a CBC will show what's wrong. I'm still vibrating like all get out. It's too overwhelming. I'm going to end up one of THOSE stories. We've had three in this town that I know of. Seek help. Denied. Seek help denied. Seek help denied. Died. Also. I'm not fat. I'm om sedantary. I'm om on Prednisone. And I've lost almost 150 pounds in the past year and a half. But, then again, I don't hardly eat. I dont get up, (lately) except to get something to drink and pee. Before that, who knows why. Oh well, it's true, my health problems have slid by with no addressing for so long there's really no way for anyone to get a handle on them now. I've only barely hit the hit the tip of iceberg here. But thanks for replying.
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Avatar universal
Hey Dyein (or should I say Livvin), for what it's worth, I'm in NC, all my relatives and ancestors are here, and while Alabamy is about as South as you can get, NC is South too, and I've had to go a few rounds with some doc people here too.  It is absolutely UNREAL how you can tell them, "I'm sick, I hurt, and I'm miserable," and they send you home with nothing.  I actually got "fired" by a doc one time!  Ha!  Something about a nurse there didn't like me, and to this day I have no idea what she was talking about.  I do recall, tho, that a colonoscopy was supposed to be put on fast-track, and I had to wait a couple months, so I called down there and explained, and I too felt I was close to death (diarrhea half-dozen times a day for six months will kinda do that to you!), and they didn't do one dang thing about it, so maybe that was what happened.

Even tho you didn't say this, I want you to know that I do not mean to reduce your huge assortment of serious symptoms and problems down to surgery, brush teeth, exercise and eat less!  NO WAY!  But I was just looking at the biggest things you yourself could do that would have the most efffect on your health, that if you started now, probably by the time your surgery was scheduled, you will have turned the corner on your teeth and exercise, and that surgery would deliver you from so much of the pain, where it would kinda be like your life before surgery and your life after surgery.  Bless you, child, and keep on keeping on.  GG
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Avatar universal
Actually, Greg, besides, this new found "voice" rising up in my gut, telling me *WARNING-WARNING* you are the only one, other than my son, who speaks the voice of clear, sane reason. You make it sound so simple. You must of never lived in Alabama. That's a little lol. A sacary one, because it's all to true. One day if you have the time, look up critical low B12, although that is moot, as I'm not going to just lay down and die here. I may have to go to Atlanta or even New Orleans, but so be it. My son joked about flying me to Canada. You are absolutely right, and I thank you for putting it right in my face. My life, a future life of any quality, all hinges on this surgery. I've been in a bubble of denial, a pain filled bubble, encased in cement. Somehow I broke through, because that's what humans do. Thank you for your words of wisdom. I appreciate them. To bad you're not my Doctor! lol. Or that he's not half the man/woman most of us folk are.
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Avatar universal
DYEIN,  Well, the big picture to me is you need to have your spine operated on, nevermind all your other health issues.  I think you should tell your neurosurgeon your doc has not been responsive to his letter, and so would he please find for you a neurosurgeon who will take you on as a surgical candidate to get this back problem straight.  See will he actually make the appointment for you and let you know where you should go and when, since your head is a little foggy at the moment.

Next, after this Memorial Weekend is over, you should immediately start a short-term weight-loss program.  Since you have diabetes, the way to go is SO simple, but works:  Cut all your food portions in half, eat just like normal but half, and NO sodas, no take-out, watch your sugars carefully, make sure you're still getting enough carbs per diabetes rules.  Before each meal, drink a glass of water and eat a salad.  Simultaneously begin to walk six days a week, whether you like it or not, just a little ways at first, and gradually walk farther and farther, faster and faster.  You can do this in your own yard if necessary.  Do these things until your surgery takes place.  After recovery, just keep up with a regular walk several times a week.  You'll get to where you will enjoy it and miss it.  You can skip the meal part until you think you'd like to lose more weight, but in general don't ever eat too much.  Only weigh yourself once a week.  If it rains, do some gentle stretch exercise in the house, or find a TV exercise show, but do NOT overdo with them, becuz they go full-on.

Your teeth sound like mine did when I was 50.  But I was able to turn around my teeth problem within just a month or so, to where I only needed a couple teeth pulled and a couple fillings.  Every day you should brush teeth after all meals, plus floss, use a Water Pic if at all possible, mouthwash, all of that every day.  After surgery, have a nurse keep brushing and flossing your teeth, then on your own when you get home.  Then, after complete surgery recovery, you need to get your teeth cleaned and cavities filled.  Anything else, extraction is a less expensive option, and you do NOT have to get them replaced for now.  Also, you can back off to twice a week on teeth cleaning extras, except brushing should continue daily after eating.  Right now you COULD look into getting some dental insurance if cost is a problem.  

I would like to assure you that while it is possible you almost died that day, it is more likely that you were about to pass out, because once you changed positions, you were better!  Your circulation is poor because you have had to become sedentary.  Also, going off some powerful drugs will really goof a person's constitution big-time. The surgery people should dispense plenty of pain meds, enough to get you back to your regular neurosurgeon who should follow your recovery and give you any further meds as needed... but hopefully the surgery will take care of a LOT of the drugs you needed before.

I hope you can see the wisdom in doing what I suggest.  Repairing your back, getting some weight off and increasing exercise, getting your teeth squared away (ruins general health), those things will make you feel worlds better.  As for specific vitamins, I can see no reason why you can't just take a complex name-brand multivitamin/mineral supplement twice a week.  I think that B vitamin thing got a little out of hand.  Let us know how things go.  And if you are concerned about any advice I've offered, you should ask a physician about it.  GG
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