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When surgery is off the table ....

Kris-NYKKris-NY Posts: 2,207
edited 06/11/2012 - 8:47 AM in Depression and Coping
Seems odd to be depressed when you find out surgery isn't an answer. But I'm sure alot will agree with me that they feel this way.

I went today for another surgery consult. This one was recommended by the neuro-opthomaologist who is treating my eye problems. Very interesting doctor who spent plenty of time with me. He explained some things that were confusing me and pointed out some things I hadn't known.

In the end he said he could not recommend surgery as an answer at this time. He did explain what to watch for that might change things.

But for now pain management is the only answer. And I think I can be OK with that. But first I need a day or two to let it sink in and decide "what now". Any ideas??


  • Sorry Kris. I wish you could have a quick surgical fix for your problems >:D< life seems like one big challenge after another lately. It is hard to not hear what you hope so much to hear. The answers can be depressing/confusing/scary.

    I still haven't found an attorney....

    I am starting with PM next week- I am dreaming of a pain pump.... I see the NS in 2 weeks. Scared? Heck yes!

    My Horner's Eye is stable (I think). My glass's seem to work most the time. Still the eye doesn't focus and has brown spots in the peripheral vision. Not to mention the lovely droopy eye lid look that makes look as if I just slammed a half dozen shots of liquer...

  • sorry about your appt...bless your heart...I wish you could get 'fixed up'. I know what you mean about being down about not being a candidate,..the first time the NS said I was in-operable regarding my discs...I was so disappointed...however in the end I am thankful b/c it really was the right decision and I'm glad I didn't start the surgical cascade. I hope medical therapy will make you comfortable enough. [big hugs and lots of positive thoughts].

    Julie, what do you need an attorney for? I feel nosey asking but didn'[t know if it was an accident or WC or SSDI. If SSDI, I could recommend who I used.

    Well...girls, have a good night...best wishes to you
  • Not hi-jack Kris's thread, but MVA in April. I need help figuring out this whole mess. My health insurance doesn't want to pay for my treatments(NS said it was Auto Accident from the get go) and I think for my piece of mind I need some one who can handle it all. Hoping that when this is all said & done I will have help to get on disabilty when the time comes (with out starving to death).

  • Thanks for the kind words Julie. Did you know that there is a simple procedure that should cure most of the Horners problem? They can "pin" the eyelid which should fix most of the focusing problem. It's supposed to be a few minute procedure. But they wait at least a year to see if it cures itself.

    You should be getting excited about the NS appt. I know I can't wait to hear.
  • Julie I don't remember - are you in a no-fault state? If so your insurance policy should be paying. Either way look for a fairly large firm. I had a really bad experience with a small, one man office. The law firm will then take care of most of the paper work.
  • Sorry to hear of your appointment. This is strictly for your eye right? The "pinning" of the eye, is that something on the "to do" list if yours persists for more than a year?

    I know I felt deflated when my surgeries where put on hold for the neuropathy, but my hubby explained to me things "I" didn't hear. Surgery is still an option, he just wants more 'troubleshooting', so I am guessing you have that 'deflated' feeling? How many opinions have you had on your eye? Any options offered? Understanding *HUGZ* for ya.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Kris- he did tell me about the eye lid lift. He wanted to wait (said it could get better or worse) and I am okay waiting. The lid will only look better they eye still won't focus right?

    As far as the MVA- I was t-boned (not my fault). I have contacted 5 law firms now waiting to see of the last 2 will talk to me. The other 3 firms were too busy. I don't know how Alaska is- I guess I will have to look. My auto insurance agent said that "if" geico fails to pay that they would have to cover it.

    It's just a lot of head ache- I am trying to hold down a full time job and deal with my pain and treatments I don't want to have to worry about this stuff. Or at least I want some direction from some one who is on my side- you know what I mean?

    Some days are so bad I just want to crawl under a rock. I don't know how much fight I have in me.
  • dilaurodilauro ConnecticutPosts: 9,865
    I know you are in pain and that you were hoping that there could be a surgical procedure to help elevate that pain.

    I've been through this before. I had many spinal surgeries to correct problems. But later on in my life as my thoracic spine started to create problems, my doctor and second/third opinions all agreed that surgery was not the answer - at least for me.

    So, I asked "What am I suppose to do?" I spent at least two years in physical/aqua therapy, going for spinal injections, acupuncture, traction etc. All the while, I was giving various dosages of Oxycontin and Oxycodone to help manage the pain. That was not my way of dealing with it all.

    For me, my physiatrist came up with an solution. That was Deep Tissue Massage. That changed everything for me.

    So, Kris, I do hope that one of your doctors will be able to come up with a treatment, non-surgical that can help you manage your pain.

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I truly mean that. It's so nice to know that others understand how you feel. My husband had an almost "I told you" attitude but he managed to hide most of it :). I was going to give myself a day or so to sulk but I was over the worst of it last night. So today is a new day with new ideas.

    Just to clarify this was a consult to see if there was any surgical answer for my cervical and thoracic spine issues. That is a no unless I develop instability in the area.

    I am still working with the neuro-opthomalogist on the Horner's (eye) problem. Julie according to the articles they have pretty good success at reversing the blurred vision when they do the lid surgery. But they wait a year for it to stabilize before doing that surgery. So early next year I can do that.

    It's been an interesting week even before seeing the surgeon yesterday. On Tuesday I had a regular PM appt. Since they can't do any injections they want to turn me back to the neurologist. Strange feeling to be told "we don't want to see you" but it is one less thing to do I guess.

    So now it is all up to the neurologist. I have to call him today about the meds and I will talk to him about what other ideas he might have. I'm not sure about going back to PT but maybe try the deep tissue massage if I can find someone. I do want to join a gym now that I know I can't hurt anything and it will be good to get rid of some of this weight. And I guess it's time to explore some employment ideas. I'm very limited because of the Horners so this won't be easy.

    Yesterday I felt dejected. Today I feel like I woke up to lots of possibilities.
  • I am glad to see this comment, "yesterday I felt dejected. Today I feel like I woke up to lots of possibilities."

    I know that for myself, I have run that roller coaster, many times. A flare-up would produce pain levels that leveled my ability to have any quality of life. For a day or week, I am working really hard to manage to issues and then, the light comes back on, and I have survived another trial. I have lived through it and gained more tools and knowledge about how I react to things. In the end, I know that the best thing for myself, is to keep that expectant attitude, of change, but also of good things to come.

    I think we pin hopes for a surgery, to fix the issues and make life, something like it was back years ago. I know I have fallen into that from time to time. And then, I discover that I am not a candiate because of "this, that, or the other thing". And I feel like I have hit a wall.

    To - I have also done a lot of medical research, to know what works, and the risks for these kinds of things. For the most part, I agree with no surgery, but there are times, when something "falls outta place" and I am looking for all solutions.

    Truth is that it is just a hill, or something that I cannot see over - yet! - And in the end, I have found that no matter what happens, I get what I need most all of the time.

    In the end, looking at it, one day at a time, and when pain is bad, one hour - or one minute - at a time, I can manage things and improve things for me, in some way.

    Trust that yours is much, ....
  • Kris i'm sorry to hear about your problems with your eye. I did'nt know until now.
    Just so you know i can sympathise with you, my daughter had 2 eye surgeries in 2004 and 2 surgeries this year.
    I think i was more worried then she was, just want to tell you good luck, and i'm hoping the best for you.

    Julie, sorry to hear about your car accident.
    Shame on your ins. co. for having that attitude.
    I dont know what state you are in, But 2 things, if you have no-fault coverage or uninsured coverage on your auto policy, then legally your ins. co. has to pay for your medical needs and they will in turn go after the other ins. co. for reimbursement.
    And if you have health ins. they also work it the same way. Tell one of them to pay and then go after the other persons policy for reimbursement.

    That is what a personal injury lawyer will tell you to do.

    Best of luck to you both.
  • You know, it would be nice to have an easy surgical out.

    Except as you've found, when is back surgery ever an easy out? I mean, you already had surgery that was supposed to fix the problem. Now there would be surgery to fix the surgery. Who's to say you wouldn't need surgery to fix the surgery to fix the surgery? And so on... You've been here long enough to see that it happens.

    So I'm going to rephrase your findings of yesterday for you. Yesterday, you found out that your back is stable, and that other than chronic pain, there is not a need for surgery. A need for. Not a possibility of.

    You found out that despite the hurt (and I've had 3 years of hurt, but much of it has been spent up and active. This is only recent) your back is stable and OK.

    Now for you. I highly, highly recommend that you re-visit the PT bandwagon. Look and call around until you find a really good PT that uses multiple modalities, because they really can calm the spasms. Aquatherapy is something I haven't tried but I'm told it is the "next step" in PT. Spend a lot of time on you.

    And beyond that, be thankful that you don't have more surgeries in your future. Because every surgery is another risk. Do hope for some therapies that will help in your future, so your pain can be more manageable.
  • And personally, I found horseback riding to be the most amazing exercise for relaxing the back and strengthening the core. I hear there's a place near you ;)
  • HB you hit the nail on the head. No easy fix for me - but surgery is never easy - so no fix just PM.

    What I really want to try is the deep tissue massage. My PT never has enough time to do the massage quite right. I looked a little today with no luck. Tomorrow this is going to be my focus. So if anyone knows of a massage therapist on LI who takes no-fault insurance please let me know.

    Now what I can't believe is that in all these responses no one caught the pun....when surgery is OFF the Table :)
  • My PT always did a lot of massage- I think the best ones do. Plus ultrasound, heat, ice, and the most recent one did light therapy as well.

  • are with you.

    Just getting back on-line, getting ready for my trip out-of-town to see my NS (second assessment appt.) on my C-spine T-spine surgeries (and am right there with you with having scenario playing out the same for me too.

    Did alot of research past week everything I could glean cervico-thoracic surgeries from every level, procedures, risk, hardware, failed outcomes hardware, unresolved neuropathy symptoms, etc.

    I know this is a tough dilemma and challenge, as we had talked recently here on the the forum and with you previous consults, as I was being turned down by my OS of 7 yrs saying only to do when neuropathy or chronic pain intolerable, then his second look at my scans with planning surgery, saying "highly unlikely prognosis to be good for symptoms and risk of doing two surgeries to voice/swallowing integrity very high second anterior approach...etc."

    I have begun to prepare that is the final verdict even if I get a NS on board that is willing...with the prognosis and risks, as you are facing right now, I didn't have to ever face that dilemma before and the high price of dysfunction/pain to be more certain than the prognosis of surgery.

    I have had a tough time these past three weeks, weighing these out and living with this too after seeing hand-surgeon about double-crush nerve problems from the C-6/7 T-1 Nerve root compression 7/8 levels bi-lateral. This is a tough one to face with spinal nerve compression and issues starting with spinal cord sac being deformed.

    I keep turning this over and praying that somehow living this one day at a time...the depression sets in really bad if I don't...and the anxiety...well it goes into a real whirl if I let it...

    I have 62 pages of research on the C-Spine T-spine junction surgeries = I understand more and more the dilemma of anatomically and fine science of evaluating the individual spine, curvature, complex co-existing fusions/hardware, load of spine, variables that have to be fully understood and studied before attempting the junction surgery, it's a challenge being discussed in every medical publication - - by the finest of surgeons.

    More later on that...

    I will be enroute for my out-of-state NS appt and will get back in touch once settled with laptop, but for now...

    Kris, want you to know I'm right there with you in the perplexing challenge and the other issues that are on the agenda with "no surgery" to be done and my heart-thoughts and ((((hugs))) are with you with this unknown path - - somehow I pray stability can come for us both...in ways we can't see and the unknown now won't hopefully be or continue as it is now.


    p.s. Don't know if you would want to read the file I have on over 20 med publications of cases and studies ? I sure understand from these case studies and the dilemma of what the surgeons are facing and why my OS's assessment/prognosis in May was determined...and prepared by your experience and my upcoming assessment next week.

    I thought of posting about these surgeon publications, knowing there are some others spineys others who are also facing similar issues with C-6/7 previous or pending surgeries and junction issues now or coming into their horizon.

    Be happy to provide my collective file to anyone who is interested - - PM me.

    (((Hugs))) again, Kris, somehow we will get down this path, "road less travelled" in spiney terms - - and you're not alone!!
  • I was told by my NS today that I will probably never recover from my surgery last December. Since last Dec I have foot drop in both feet, leg weakness and severe sciatica all confirmed via EMG. My NS told me today that I am permanently disabled, with no surgical alternative. I am 49 years old, so I am certainly no young spring chicken, for sure. But I do have 4 children , with 2 at home (13, and 18), who have always looked up to me as swim coach and little league coach. For the last year I have hardly even been able to be a decent father. I spend close to 10 hours of every sixteen hour day in bed. I cannot even attend, let alone coach any swim meets or baseball games. Fortunately, I am also a Disabled Vet for my back conditions and they will be calling me next week to help anyway they can. I apologize for hijacking this thread, and I send my best wishes to everyone here!!! Thanks for letting me vent.
  • It's hard to go from doing everything, to almost nothing. Remember the kids are old enough to remember what you were and in time will realize this is of no choice made by you.

    Mine understood when I could not attend. My youngest (18) does not even actually care, he says he does Lacrosse and Orchestra because he wants to do it and be with his friends. If his mom and I are there or not is totally not an issue. I am very proud of him and his achievements. He knows it and is very much on top of his game in both school and sports.

    His older brother (20) is a Junior in Engineering and also understood the issues. My kids were 13 & 15 when I had the accident. Not so very different from you kids ages. Just be the best you can for them and yourself.

    Let's hope that as time passes you will be able to get somewhat better at being mobile. My shoulder took a full 2+ years to be stabilized and for me to figure out how to work around it.
  • Backpain we can all sympathize with you. The changes in our lives effect everyone around us. But think of it this way. If you had gotten a big promotion at work and suddenly had to start traveling that would effect your kids too. Life is full of changes that we have to learn to adapt to. Change can be good or bad but we control how we handle it. If you need to be in bed then have the kids come to you. Lots of us have turned the bed into a second living room. Make it fun to be with you and the kids will come. If you can't get to games then get someone to videotape them and watch them with the kid who played so they can tell you about it. This is even better than being there.

    Oh and don't worry about hijacking. I love it when my threads take twists and turns...always something really interesting around that corner.
  • Kris-NY,
    We all need time to refocus when new information is provided and it changes some of the misconceptions that we may have had, many here elude to the fact that surgery is not recommended for them, although this maybe a judgement call, it is taken with our best interest at heart with all the known risks and expected improvement. Time itself will distinguish between the hype and hope, encapsulating ourselves with a worse condition than we started with is never our objective and we take that leap of trust and expectation into the unknown, in good faith we all assess what the outcome may be as we wait for our expectation to meet the reality.

    We all have apprehensions and that is to be expected and part of the improving process, being told surgery was not an option for me was some relief in that my own quest to find the illusive answer was no longer paramount and I could set a new objective of managing my pain as effectively as possible, we have to be happing in knowing that stopping was the least damaging option and that is never easy to live with.

    Any invasive surgery does carry some risk, it was always worth taking if we have a successful outcome, and never the best option if things do not go as we expected, we have to decide with all the relevant facts and appropriate support what is the most beneficial route and that is always easier with hindsight. The key is to do the best with what you have got, it may not be ideal. My son is disabled and his life is what he is making it, it is about perception and attitude, he has indescribable difficulties, his resilience and fortitude give him the good grace to adapt to his everyday challenges.

    Take care and good luck.


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