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10 years of this & losing hope-plz help-(long post; 2nd time posting it)

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:34 AM in Chronic Pain
Hello all. I am glad to finally have found this site and pray that I may find some help and compassion here. You will see on my second post part of my history in an answer to someones question about Fentanyl. I apologize if I ramble or am redundant and for my lengthy post, I can't type well or sit for long periods so I have to start and stop and everything I write so upsets me that I doubt it will flow smoothly--but I am sure you can relate, plus I get dyslexic from the fatigue at times. If you can stand to read thru it, I welcome any replies or opinions.

I do not believe in Suicide but I am, 10 years later, at my wits end and can't go through this lack of life and state of minimal, meaningless "existence" much longer.In spite of my deep spiritual heart and my trying to always think positive and believe that positive change will come, but as I get sicker and weaker and see no light at the end of the tunnel and the clouds coming in and getting darker and darker...I am now starting to wonder when things will get better-if ever- and feel extremely sad and hopeless. While anti-depressants have their place and helped me a long time ago when not in vogue to use them, and while I was only on them for less then a year , at that time they were a blessing. At this time, I feel they will push me further into the darkness as they didn't help before when I was more positive, having tried several, and they will not get me back to work, or bring me my friends back or give me family support and frankly I can't stand one more pill chemically altering my personality. As well, it would be another financial stress as the drug companies are now not sampling and instead giving discount coupons and I am on so many meds that I often have to decide between food and doctors visits co-pays plus the meds cost, since many aren't covered by the insurance company and with Medicare part D , it's hard to get help from the drug companies anymore. Because I make just above poverty, I do not qualify for any help with medicaid, food, utilites, etc--because I make anywhere from $50 to $500 a month too much, depending on the program.As prices soared since 2007 and the disabilty has sayd the same or SSD went up 5% but the insurance went up over 100%, I fall further and further behind and live frugally and do with out so much as refuse to use my credit cards, unlesss I have to, and in spite of having good credit, if I do use them I allow only a total of $200 at any time - unless it's something I can pay for in full within 3 payments if I MUST have it -like a home repair. I don't spend it on fashion,going out, taking a vacation because again it adds to the financial stress that I already have from the never ending doctor/specialist appointments. I know folks in their 90's that don't go to as many docs as I do. Now, with increasing medical issues, I get paralyzed when I have to make an appointment for a new doc because I am absolutely burned out with all of it and frankly can't handle one more *#%$@ diagnosis.

My medical experience was pure hell and had I not lived it-- and would here my story, I would think it's a very embellished drama because no doctor would be so horrible and get away with it & no patent would have suffered what I did. But it was hell and the doc that damaged me at 38 and stole my life, is a butcher and for all I went through, all the lies, abuse, wrong surgery, screw ups in the ER (doing the wrong surgery, leaving the OR and letting a resident finish the wrong procedure and closing while I I bled into my back causing spinal cord compression, etc- it would take a book to write all that occurred) and then the post operative abuse, the need for emergency surgery, again done wrong and not completed, etc, etc, etc,fraud, libel, slander by the doctor to cover his butt while he changed the medical records, and on & 0n...

(He still practices and is very well known, very well connected and very powerful, etc--Legally speaking, I should be a multi-gajillionaire--but not only did I not understand law, I had no advocate and meanwhile I was desperately fighting to learn to walk and to do anything NOT to land on disability and to get my life back on track. Sadly, that was not the case. Suffice to say, I had an unsuccessful attempt to return to work and at 38 my life was stolen from me--and no was accountable--but ten years later,at 48, I still have to answer for the judgment of those who do not have a clue of all I have been through and judge me because of my extensive pain meds--even though I went through my 1st back surgery (done properly in 1985) drug free-but now I am on serious narcotics which I hate but need to have minimal ability.)We tried to go off the narcotics but the pain is so severe, I have no choice and so much damage has happened to my spine I am ineligable for many options available to others...so I hope that eventually technology will have an answer for me but so far there is nothing I qualify for at this time but the narcotics. And while I don't like them, they give me some function and I appreciate that the doctor is willing to prescribe them.He makes all his patients sign an opiate agreement which is fine , not an issue for me because I think it could save someones life if they abuse drugs whether innocently or intentionally.

The doctor didn't have to answer to me, my doc, the state, the hospital--no one but I am still having to defend "my drug use" while I have never abused any meds, have never run out of them early and have never "drug-seeked" and frankly narcotics and I don't like each other! In fact I have been given pain meds when I had to go to the ER and explained I didn't need them since I had that drug for break through pain, or told them ALL my meds and feel I didn't need more pain killers when I have a combined total of 420 a month of Rx pills for pain (not including samples) - but I find either the docs don't listen or they judge you as an addict- not much in between.

On a positive note,I did learn to walk- though I can only go one speed, and every step hurts, every movement hurts,I can't run -not even to save my life - so of the "man with the ax " were after me...well--he'd win!!( I still try to have some humor as I still think it's the best medicine, but reality is neither funny nor happy- and the future looks dim no matter how positive I try to be)

I am sleep deprived from pain in spite of the meds, and the side effects are horrific for me. While I tried to resist the drugs, because of the 14 days of spinal cord compression (since the doctor ignored me as I lay in bed unable to move, my body on fire,no way to get to an ER unless they kicked the door down and I feared for my house and my pets so I layed in bed, calling the surgeon to explain the post-op pain was 1000 times worse than the pre-op pain, only to be told " I don't know what you did, but I don't make mistakes" and then noting in my records that I was exhibiting not only drug seeking behavior but withdrawl symptoms, which was interesting since I was given Benadryl, post op, for pain, and zero narcotics!

When he finally saw me to remove the staples, which he did brutally, as I cried from pain (I have an incredibly high pain tolerance btw). I broke into a sweat, was shaking and crying and finally they called for an MRI which showed a large pool of blood at the base of my spine causing the spinal cord to be compressed. He said I needed emergency surgery but "Didn't feel up to it right now, so I was sent home in excruciating pain, unable to walk, unable to sit on a toilet, etc...and had to wait 3 more days for his holiness to grace me with another botched surgery. He lied to my primary and never mentioned the hematoma and spinal cord compression and said I "Was unhappy with my scar so he did a scar revision). When I saw my primary and told her all of the above, she said she never heard of the hematoma or the emergency surgery, flipped thru the chart and showed me the "scar revision" letter --t though he billed the insurance company for "emergency surgery and a second unfinished Laminectomy in 2 weeks-NOT the surgery I was to have either times). I had the MRI's so my primary had a private read and saw that he lied and was livid, but powerless against the surgery.

DSo here I am 10 years later in great pain, with 9 years on MSCotin 60 mg 3x's a day, Vicoprofen 4x's a day(was with tylenol but I didn't want to end up on the liver transplant list after taking it for 6 years at 2600 mg a day), Valium 10mg 3x's a day, Ibuprofen 800mg-4x's a day, Rozerum/Lunesta/Ambien for sleep(what ever & when ever I can get sampled because I am on too many meds and can't afford to buy any of them regurlarly) and Miralax or, or Amitiza if sampled, for the severe constipation --which against the narcotics is more poison than help. I have been thru the Fentanyl,Nuerotin, Lyrica, Paxil,etc.,etc., etc...and the above is where I am now and while at times I wonder why I take so many drugs to still be in such pain that I am sleep deprived and have so between the pain and fatigue I have very little stamina and can barely cope with basic life things and have very, very limited energy. When I worked 80 hours a week , my life was always in order, as was my house , etc-- now the littlest thing is like trying to move a mountain. I am also on several other medications for non pain health issues.

I feel that what the pain and fatigue doesn't steal from my life, the drugs do. I don't feel I live - I feel I exist and barely at that. I'm not one for self pity but I can't fake the rah-rah anymore and feel overwhelming physical, mental and emotional exhaustion. We all know one feeds into the other, but I feel this site may be a ray of hope for me since at least folks on this site can relate and I hoping there will someone who can offer some words of hope or share their experience and help me via what they have been through.

I have no family support. I had some help from my Mom but she's 84 now and losing her memory and is almost non ambulatory so I try to help her--which is a joke really as I can't even help myself. But I love her and worry about her and while my house is tiny and not conducive to sharing, she will end up here as I will never allow her to be in a nursing home and as I mentioned there is no "family", but she was always there for us so I feel I should be there for her, and while it will be difficult on many levels, it's no sacrifice when you love someone, like I love her.

Friends all fade away because not only am I limited but they don't want to feel obligated. So they can call to discuss their problems ( which are "problems" I'd LOVE to have, but can't come by to visit, or help me by taking me with them when they go to the market, or invite me to join them for a movie....the one or 2 I have from childhood live on the opposite coast and don't keep in touch much-I know they care, but they don't "get it" on any level because they are healthy and they don't see me now so they don't know all I go through and our 4-6 calls a year are limited and no one wants to "hear it" because it "makes them feel limited or helpless"...when they don't realize how much even listening and compassion could mean to me and don't get that I can't "chat" for hours on the computer. This doesn't upset me like the local friends all over 25-30 year friendships that have all faded away since I am not the fun person I use to be and again, they don't want to feel obligated to help me, so unless it's about them, they are absent. I finally stopped last year these "phone friendships" because I had so little energy or my hands/legs would go numb & my back would flare up spending hours on the phone wasting the little energy I had when it wasn't even a 2 way street...just them venting about trivial "problems"-like having a car and insurance from their parents and now having to pay $30 a month towards the car insurance...is that a problem to have a 2 year old car for $30 a month??? I wish I had such problems!!

So I feel, on top of all of this abandoned, isolated and dismissed. To validate my "existence" I try to do a good deed every day. But my family is my old sick dog and my old sick Mom and if/when I lose either of them, I fear it will further push me into the darkness.

I have always been a very strong believer in the power of positive thinking. I sought private counseling when I could afford it early in this trauma, and I tried to put on a brave and encouraging front to others I knew who were sick or disabled, whatever the reason. I was always available to anyone that needed help and no matter how little I had to give, I always had enough to share --whatever that meant.

With time, I got other illnesses that I strongly believe came from the drugs, not all, but most of them of them. I am exasperated by drug seekers who see me in pain, like when trying to carry a small bag of groceries, or being unable to stand, or limping when my legs get to weak to walk more, and they don't offer help or ask my name, just why I am limping, in pain, etc and then the ever classic: "so what are you on?" (These are healthy folks looking for a drug connection-something I don't do and "friends" I don't need). I am tired of trying to do things right and doctors not having time to listen, while I watch the drug abusers get away with non -compliance, selling of the RX drugs, and being masters of manipulation.
I am tired of having to defend my situation to docs that don't know the story and judge me for what I take but never bother to ask me how I feel about the drugs, how I use them, etc...but treat me like a junky--and I am not even asking for narcotics or any meds (this just happened with a GI doc that I went to for help with the constipation since the narcotics work against the anti-constipation meds). I can't keep explaining or apologizing for what the buthcher surgeon did to me and got away with and continues to abuse others. Maybe he earned his good reputation from former days, but now he should not be allowed to even practice for what he has done to me and others as I have learned over the years. But it's not about right/wrong-it's who you know and the $ and power you have. Had this been a new doc just starting his career -it would have been over for all that was done- not just the malpractice but the fraud, etc.

One doc who was part of my story saw me once and cried because he knew all that happened but couldn't help me by going against the doc because he "would be blacklisted from practicing on the East Coast and had 500K in student loans"-he was sincerely sorry and I knew he was both compassionate and remorseful even though none of it was his fault.Even the anesthesiologist yelled at the surgeon because my spinal anesthesia was "taking too long" for the surgeon so he told the Anesthesiologist to "just put her under general, I need to get going" and the Anesthesiologist yelled at him because he told the surgeon that "he practices medicine legally, so just be patient, it takes time for the body to go totally numb and she didn't consent for General"...it's just too amazing a story. I had put it aside emotionally even though the pain is a daily reminder-but I thought he retired 5 years ago and learned a few months ago he was still practicing and I think that caused like a PTSD reaction in me.

I have put up a really good fight and in praise of myself have done a lot when physical rehab gave up on me, I forced myself to continue what I had learned and to walk -even if I had to take baby steps, and fought hard and get a good positive attitude--though in retrospect I think fear was also a great motivator as I lay paralyzed for a night in the hospital the second time around and never wanted to end up paralyzed permanently. Plus I didn't want to be where I am today as I always thrived on working.

I am feeling very hopeless of late and very depressed. I could always figure a way out of problems in my life but for the first time I am feeling hopeless. I will not bring harm to myself as I do not believe in Suicide but everyday I feel sadder and my coping skills are almost nil anymore and I don't know how to go on this way and I feel no one hears me or understands, or even cares for that matter. Folks who I would think would never hurt me or let me down have and even while I am in a bad place, I still have compassion for others but see no empathy or compassion for me or my situation.

I can't expect others who have not walked in my shoes to understand--but healthy or ill, I have always had compassion for others less fortunate then myself--even now, in this dark time.

As I said to my Mom, even the best swimmer gets tired of treading water.....

If you actually read this rant, I thank you for taking the time, for caring and for any thing you can suggest that you may feel could help me.

Fellow suffers-take care and thanks again. I hope what ever you suffer from that you have someone by your side and wish for better days ahead for all of you/us.

God Bless and thanks for listening...



  • I read through your post and am truly sorry for all that has happened to you. I'm sorry if no one responded to your first post. I did not see it. I think your story is so overwhelming that most of us do not know how to respond...other than to empathize with what you are going through...and that isn't much to offer.

    Dealing with chronic pain is very difficult on many levels. Perhaps your local hospital has a chronic pain support group or could help you find something like that in your area.

    Do you feel that nothing can be done now to help your situation? Have you thought about a spinal cord stimulator or an implanted pain pump?

    I hope others will have some ideas for you. In the meantime, you will find support on this board and people who do understand, at least to some extent, what you are going through.


  • Having just read your post I am feeling so overwhelmed as to be able to offer you any constructive ideas. I am truly sorry that you have suffered so much and for so long. Being fairly new to this site I know the people here are genuine and truly caring and have a better understanding of physical issues that you deal with. One thing really struck me was your love of your dog and Mum, also your desire to improve your situation with courage and determination. You are a strong person, be proud of yourself. Anytime you need an eat to listen please PM me.As little as it is please feel the biggest gentle hug from me and my warmest thoughts- Hugs n' Loves - Paula
  • You have quite the story to share. One of the things I have found to help me out of my doldrums is to be of help to others by sharing my experiences, strengths, hopes, etc. This website has allowed me the opportunity to do this via the forums or the chat room. Its very good medicine.

    Best wishes to you,

  • Hello - I just finished reading through your notes. Surviving theses years of events is testimony to your strength of spirit.

    I hope your feeling a little better. David
  • i have sent you a private
  • I just now found your post and I'm sorry it took this long.

    I don't know where to begin or what to say other than I'm sorry. What this butcher doctor did to you is unforgivable and it makes me physically ill. We all want to line up and give him a taste of his own "medicine". Your story ripped my heart out.

    I wish you could find an excellent pain specialist to help. I used to take the same dose of MS Contin as you. You need something else because morphine is weaker than Fentanyl and Oxycontin. Has anyone talked to you about other options like a neurostimulator or pain pump?

    I also understand about taking a financial hit with all the costs having to do with chronic back pain. The meds are so expensive and so are the procedures and surgeries. I don't think I'll ever pay off all my bills. But what can we do? It comes with the territory.

    Well, I want to mention again how your experiences have touched us and we hope that you can move ahead and someday put this behind you. Take care
  • Hi Straker,

    I am so grateful for your replies and feel I FINALLY have someone who shares my experiences and feelings. But for some reason, it says "sender does not accept replies" so I am not sure if you'll get this , so just in case I am keeping it brief. I got confused on my first reply and by mistake simply returned your first reply by accident and then realized my error and sent you a reply. Let me know if you get this and thanks again for being there for me...I am new here and you were the first to reply to me. I read a lot today o the site and want to answer a few post on the board but I am so tired physically and mentally--sleep deprivation is an added bonus to chronic pain!! I hope you get this and I can send some PM to you again as well as some public posts. Five others , as of yesterday replied and I have one other PM I will read next. I think this site may be a god send. Please let me know if you get this and if OK to send PM's as well as public posts to you. Take care "T"/ Starker!Hope to hear back from you soon as to the PM block-- I thionk it was because of my initial error when I tried to reply the first time and only sent back your letter without my reply. I hope we can fix my confusion, I didn't mean to do that. It's because I am new to the site and just learning it as well as the meds and exhaustion. Let me know and meanwhile I thank you again and await your reply as how I should/can contact you. PS: I just tried to send as a PM and got the pink bar repeating that "Straker does not accept private messages" ??? I hope I didn't offend you by my lack of understanding how the site works when sending messages privately. Meanwhile,thanks for your most relate-able letter and sharing similar experiences we me. Sorry about your grandfather.hang in there and feel better....well as well as you "better" can be!
  • I agree that you should still speak to legal representation. If your medical records and insurance billing records and imaging studies all sing a different tune, then a good lawyer will have lots to sink his/her teeth into.

    Marianne made a good point, and that is "getting out of self" and "giving it away to keep it". That what this forum is really great for, especially for someone who is physically challenged like a CP sufferer.

    Welcome once again.

  • It's 3 am and I can't feel my legs--well I feel the numb branches that are burning where my legs are and I am totally exhausted. I type pathetically slow- I'd like to blame that on all my issues but I always sucked at typing so I hunt and peck as fast as possible- the computer has helped me with typing better but even a short reply takes a long time for me--then the pain, and fatigue really does slow me down. I wanted to reply y to your posts above as well as to some others to whom I feel my experience may help them but I am too exhausted and in too much pain right now but before I go to bed I wanted to just acknowledge all of you. I wanted to address some of your questions but will try another time unless I can manage to address some as I type this but my feet are buzzing and the ax at the base of my spine is really hurting by now! (lol)
    But Gweenie17, Winkie, marirlpn, centurion45, Straker, meydeu321,DisabledAmerican, haglandc & bobbie-jo, THANK YOU ALL from the bottom of my heart for reading my story and reaching out to me with your words of comfort and kindness and your suggestions. It's nice to finally be heard.It's nice to know that there are folks that care but as I said on some PM's that it's sad that folks you have known you/one for years and watched what you went through could not show compassion and eventually all disappeared but that all of you could show me the empathy, compassion & time to listen and care. Sadly, that means you too have all suffered as well , which is why you het it and for that I am sorry, but I thank you again for caring in spite of your own pain and suffering and I do feel welcomed to this site and feel it was a god send that I came across it. I will not end my life--while it is is not a life and merely an "existence", I still do NOT believe in suicide, I just feel that bad, but I would not intentionally ever harm myself or others. Yes, I have reached out to my friends and asked them to listen or come by for coffee or to include me in things like a movie or to take a walk, even if it's slow ( I live in Philadelphia and I am surrounded by the Fairmount Park System and there are many beautiful historical easy walk trails (as well as more challenging ones for healthy folks, bike riders or horse riders)but since I have to depend on a ride or am slow, or am financially limited or physically limited or not the "fun" person I used to be--they have all slipped away one by one--even when I down played my feelings --meaning tried not to complain or "whine" too much as not to scare them away. The few I really trusted I spoke my heart but it was good for the purpose of gossip vs. compassion. Or instead of praising my hard work, as in learning to walk,they see the great improvement because they see me walk but they don't get that each step send shooting pain through me. I have asked for a ride to get food--but apparently I was asking too much of them- though one friend took me once this year...which means once in 10 years. As for legal issues, My statute ran out two years after my surgery and between my pain,my lack of help or an advocate, no knowledge of law and the incredible power of this &*^%#$@ surgeon-it was a David and Goliath situation and Goliath won. The few lame attempts I made, not knowing a lawyer could come to you even, by the time I made it to an attorney I couldn't verbalize my situation or literally they would hear the name of the surgeon and hand me back all my films and records without even looking at them. As well, the doc altered the records, many were changed, missing and even the "Emergency Surgery" aka the scar revision was delayed 3 days(further damaging me and having 3 more days of my body being on fire, unable to stand or move, so that he could do a CYA and say that it wasn't an emergency or he'd have done it immediately when to me he said and I remember it like he just said it now " Wow you have a large Hematoma at the base of your spine and need emergency surgery so I don't feel like doing it right now so we'll schedule you for Thursday" and when I asked him if I need it now why are you making me wait for which he just went ballistic on me and said that he was the doctor and I don't dictate his schedule"--in retrospect, it was, as I said a CYA..so when he lied to my primary about the "scar revision" he would not have to put in writing the pool of blood causing spinal cord compression nor open up the can of worms that would illuminate his malpractice--and gave him time to alter and lose crucial documents. He's a licensed criminal frankly and again, so well connected and has a lot of lawyers and judges in his pocket as evidenced by the handing back of my file when they heard his name without having even reviewed the films or documents--it's a nightmare of a story. He has the largest collection of antique Italian racing cars and recently opened a museum of these cars (bought by crippling others through the years) so maybe since that will be his legacy, aside from his maming and butchering skills, maybe that's why he was so powerful, I really don't know how he or any doc could do what he did and get away with it. If I had to present why I think I have a case today, maybe someone would have heard me and maybe he still would have been untouchable--but wen your body is on fire and you are fighting to stand and take baby steps and are ignorant of how the law works and have no advocate--it's hard tp present or prevail. I have sought out pain support groups but there were none I could access and actually I found ine near me and was so excited and when I went it turned out to be a support group for men with sexuality issues that was miscategorized!!Heck I would have even joined that one but I 'm not a guy!!! : ) I have a good pain doc, a physiatrist, one who manages in pain and rehabilitation--who went through an amazing story himself, paralyzed at 17 on graduation day and spending 17 to 21 in a physical rehab hospital and while he walks like a marionette with no strings , he has a high level of function and his experience is what inspired him to go into medicine, especially pain and rehab. He was my rehab doc in 84 when I had my first back surgery which I healed from, drug free in 2 years from the time of surgery--but I had an excellent surgeon and the right surgery dome properly (a microdiscectomy at L4/5) but that surgeon wasn't available when I was hurt in 1998. When I was still in total denial about how injured I was from Dr. Buthcher and since my pain specialist was the doc that never said never, I thought maybe I could go to learn to be a nurse, work weekends and rest for the other 5 days and he said "no, you won't be able to do it physically" and I asked how ho could have gone through something so far worse and become a doc and is saying no to me learning nursing. He said: "Because I (meaning himself) didn't have pain." I was lucky to have a Psychologist in my area only a block away and he woprked with me to help me get out of denial and I kept putting an expectation on myself of having to be better by "next spring" and he taught me that I was setting myself u for failure and needed to let that go and try to accept my injury and should next spring ever arrive without being an expectation-then great--but to stop pressuring my self to be who I was and to learn to accept where I was and to work with that for now. He was a great help and he and his wife, also a Psychologist were very helpful to me and I came to accept it but still continued with my own Physical Therapy for fear of losing the ability to walk at all. Unfortunately they are gone now and I have 4 specialist that I need to make appointments for but can't handle another Dx --even though I know I am not well and have had some preliminary tests that are not promising. I do try to do a good deed everyday or when ever possible no matter how small or how big-- as I think it helps me if I feel I can help others and yes, I do think that posting to others on the board may help me help others in a way I haven't had a chance to do before.
    Well everyone, I think I hit on most of the questions you asked and now all I have from my waist down is a numb and burning tree trunk--but it was worth it, it will be a challenge to try to stand, eve though I have been getting up and walking and massaging my legs to qwell the numbness. I feel very welcomed by all of you and again am very grateful I happened upon this site. I appreciate all of your PM's and public posts, your obvious heartfelt compassion and the fact that you took the time to read my long post (as is this one) and to reply. This is the most I have "functioned" in a long time. I have to be careful about seeing a mental health doc of any kind as it is an out clause for my private disability and I camn't afford to lose that because combined with SSD I am still barely surviving and as I said I live a very modest life and am very frugal with money and the only time I spend $ that is not for basic necessities is if my Mom needs something -- because I don't ever want her to want for anything and she never asks but if I see she needs , I will get the it for her even though I am barely getting by and in no way could I even work 2 hours a day, as I am lucky if I have 2 hours of energy to handle things at home. I think alot of what upsets me is I could alwyas figure a way out of any situation, see light at the end of the tunnel and was always good at problem solving. I am stuck and feel I can't do that as of late. I feel I have lost hope and the fight and I am very anxious that I will not have my Mom and dog for much longer (but on that I try to spend as much time as possible in the now instead of fearing the later--but it's hard to see my Mom losing her memory and not remembering what we just spoke of ten minutes ago). I am anxios about my future, scared I will be alone, a life void of love, family and frineds and I am tired of the pills but I know I need them and am grateful that I have a doc that prescribes but hate the "drug addict label" that others, docs and lay fokljs put on me without even talking to me about them, just seeing my med list they think they "know" me and "judge me accordingly". These are some of the issues that I can't cope with. I know that you can't answer all my issues but I am just grateful for your experience, words of acknowledgment,words of compassion and time to care and share your thoughts and suggestions. I am most thankful "just" for that because I feel I have been shouting for compassion and empathy (not pity or dependence) and either I wasn't heard or folks chose to turn a deaf ear to my pain-emotional, physical and spiritual. So again, I thank you all and any future posts or PMs that may come. I am glad to be a part of this community and hope that like all you, in spite of your pains and suffering, that I too may have some wisdom and kindness to offer. Gd Bless you all and many , many thanks once again!
    God Bless and all of you will be in my prayers....

    Goodnight (good morning) for now...

    ( see it only took 2 hours and 5 minutes to type what the average typist could do in 15 minutes or less!)
  • There are so many lawyers that would chomp at the bit to sink their teeth into a surgeon that you are describing. It almost seems as if you are in denial over the entire thing and have given yourself the "ok" to be bitter by not continuing "the pursuit of justice". That sort of internalization will eat a hole in you literally and figuratively.

    I think it is great that you have found Spine Health, but if post after post after post, you continue to fan the flames of your anger ... well I'm no psychiatrist, but I do know it just isn't healthy.

    If you can muster the energy to sit and write all these long and highly thought out posts, you should be able to send out contact messages to different law firms or patient advocacy departments. Just because one lawyer handed you back your file, you shouldn't just give up so easily. Living in the part of the country that you do, there's a ton of legal representation around you.

    I don't mean to sound condescending, I just think that for a person who has been so "wronged", you have given up way too easily. Of course that's just my personal opinion.

  • I read your entire post and it feels better just to vent and be acknowledged and validated by others who understand the pain you're going through whether in more or less time as yourself and what terrible things that have happened to you. It's okay to mourn not being able to do all what you can be doing in life but your character is strong for what you went through and maybe able to handle things with more strength now. I can tell your empathy for others is strong and what great things you have done. I believe in positive thinking as per in my signature and I also believe in living for one day at a time. Getting out on the porch or balcony everyday to catch some sun is one goal I have but I forgive myself if I'm not able to do all what I plan for myself. Being in isolation can bring times of reflection and sometimes necessary for the spirit. I agree if you can find a chronic pain group that would be something to look forward too but this also is a pain support group as well. I distract myself with computer games too and often watch movies just to relax. I hope you're feeling better and try to get a 2nd opinion PM Dr. as he may have other ideas for you to help with the pain. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Eliza-G
    This is my 20th year and we all fully understand your angst, who could have known that 10 years on you would be no better, my own and many others history are similar and you are not alone, you have achieved and won through this time and anyone who have pain every day and night fort hat matter for this time must have a strong will and invaluable tenacity.

    Many here will offer word of support and encouragement and you have to find what works for you as an individual, our words may well fall on deaf ears, we do care understand and have some empathy of what all here are going through, it is not easy, we are here.

    Living and looking to the past is a lost opportunity and focusing on regrets that we all have is not moving forward, getting those issues down every day from the same bookshelf and beating yourself on the head is not good for you or those around you.

    We are here to support and encourage you we are not doctors but offer progressive ideas of improvement that need to be used and disregarded as and when they apply. We all have that angry stage and that is understandable accepting what is left and trying to find yourself in all the remnants and move forward. None of these answers are simple and probably require disproportionate effort on our behalf to gain limited results, those chinks of light may be around although we all have to be looking and see them for what they are.

    We all know you are doing a fantastic job, you have endured ten years of something that nobody expects to happen for this time and though our previous self would resume, it did not and we are understandably aggrieved.

    Having faith is about not giving up on yourself and your worth is more, if you need addition or professional help please seek it out, you are here now, we are all listening with that outstretched hand of friendship and we welcome you.

    Take care. John
  • Your post brought many of my own feelings and what we go through as Chronic Pain sufferers to light. Your story is unfortunately very sad but says alot as to what many people go through. Some of the darkest days of my married life was when my husband was diagnosed with Pancreatic Cancer. He was given three months to live and at one of the highest rated hospitals had a major life altering surgery which almost killed him. Four days later the surgeon told us "well you never had cancer". I was elated and happy to have my husband back. However, I would never have the man I had prior to the surgery. They removed all or parts of 5 organs. Insofar as legally, no dr. would go against this prestigous hospital or dr. So many years later, as my husband suffers not only from medical issues he has an anger which I know will be with him forever. He is permanently disabled and two years ago I was injured at work and now am in a wheelchair. The pain is unbearable and I feel useless (sometimes)
    As in your case I have no friends who want to take a minute out of their day to say hello. No one really understands the pain I am in. I am a very realistic person and I know it is not up to anyone to understand or care about me. I have days where I am totally depressed. Then other days I tell myself. "stop feeling bad for yourself" "there are so many out there in much worse situations". My heart breaks for the small children dealing with medical issues. Believe me I have many private pity parties. I used to worry about everything, I guess in some ways I still do. We are going to lose our home and have to move. I was heartbroken but I can't fix it. My husband requires so much medication as his botched operation has left him with so many issues. I require dr.'s visits and medications also. I do pray alot and I think that helps. Its something I can do in private and it makes me feel good. My life consits of sitting in a recliner approx. 23 hrs a day. Many would say not much of a life but it's my life. I try not to think less of myself because I require pain meds. In many of our conditions it is just like someone who requires insulin to get through daily living.
    I must say your story truly touched me and although you have gone through such a rough situation you were able to put down your thoughts and touch someones heart. I think that is a great accomplishment. With all you are going through you put the love for your mother first. You are an awesome person. All we can do is take one day at a time. Never judge yourself or pay attention to anyone who may judge you. It's very hard to feel alone in dealing with your pain (I have felt that way for a long time also) but sharing your story here and then receiving the feedback you are getting I hope you realize we are not alone. None of know each other but we can help each other cope. I pray God will Bless both you and your dear mother. Good luck to you
  • Believe me if I could sue him_ I would move mountains to do it BUT:

    In the State of Pennsylvania, there is a two year statute on malpractice cases which means that I am 9 years and 7 months "too late" or,legally speaking out of statute.

    Sadly,I won't be the first nor the last to experience injustice like this.

    I didn't speak to one attorney, actually I spoke to quite a few....but remember that through this process I was alone, no advocate - medically, legally or personally.

    But the legal aspect of my story is so long and this being about spine health, I focused on the health part not the legal issues that I merely referenced as the legal story is just way to long and the other post was plenty long enough!

    As I wrote in reply to a PM I received earlier:

    "...and having thought that Dr. Butcher was retired and to have recently learned he's now the head of one of our top hospitals triggered my upset--it's like reliving it all over again when I thought I had finally made peace with it...I am trying cope best I can because I realized what put me into this tail spin aside from the daily battle of one with CP. I am trying to post some replies in hopes of helping others.I think the doctor thing hit me like a wrecking ball...it's like a PTSD response what I am going through at this time, if that makes sense."

    Sometimes the law isn't about right/wrong it's about who you know, $ and connections. I was nieve and thought it was about right vs. wrong, but it not always is.

    It was quite a painful lesson to learn what I did about the ugly side of the legal system. Aside from the $ issue that I should have easily won, what's even worse is that others will continue to be hurt by this doctor and he will not be appropriately held accountable- which is not just sued but his license to practice should be revoked.

    While I should have had a case and would have/should have won and won big-my health is far more valuable and to ponder water under the bridge and what should have been is definitely not healthy and will not allow one to move forward.

    After all the injustices I suffered, why would I want to do more injustice to myself?

    I am just going through a very difficult time and instead of being "in denial" and not allowing myself to feel it -- this time, I allowed myself to not only feel it but to try to vent/share it and let it go via this site.I don't think that's unhealthy, I think the keeping it in is.

    I am just going through a very difficult time and instead of not allowing myself to feel it -- this time, I allowed myself to not only feel it but to try to vent/share it and let it go via this site.I don't think that's unhealthy, I think the keeping it in is.

    Thanks to those who meant well, unfortunately, that's a closed chapter. But on a good note, in spite of my current state...I'm still standing, still fighting and still trying to reach out to others....and that's worth a lot!

  • I do understand what you said. Just a note in my husbands case we certainly did not sit back and take it idly. We did contact several attorneys. Went through alot of stress in doing so but felt my husband had been through a life altering operation and did not deserve the outcome. We are not sue happy people and it took alot of prayer and thought to go forward with the legal end of this mess. The final answer from more than one attorney was "this having happened at a prominent hospital and the surgeon being in one of the top 100" we can absolutely not find a physician in the county for which this occured that will go against this hospital or doctor.
    Obviously we were happy he did not have cancer and that he was going to survive but he lives each day with ongoing issues.
    It is a tough situation out there. Dr's hate lawyers and lawyer's hate dr's.
    I do agree if you have been injured by a physician do not wait call an attorney right away as most states do have their statues of limitations. Sometimes we do feel like the outcome was spelled out prior to our surgery. In my case there was a 1% that I could have vocal cord damage. The surgeon said it has never occured in any operation I have done. Well I am part of that 1%. Right vocal cord paralysis. I can only whisper and not very long. I guess its something I am learning to live with.
    The most important thing here is Eliza was reaching out to vent her feelings and I think she is taken a step in the right direction. Eliza keep a positive outlook. Some days is easier than others. But if you feel the need to vent or rant or are just having a bad day many of us are here and we feel your pain. I think searching out this support and realizing I could not keep it all in was a step in the right direction. If you ever want to chat feel free to PM me. I think we are going through alot of the same feelings. God Bless you and take care
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