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Handling doctors and boyfriends...what do i do?

catieoccatieo Posts: 3
edited 06/11/2012 - 8:58 AM in Matters of the Heart
Hello everyone.
I'm new here, but I have been dealing with a host of back problems and pain for about 3 years now. I'm sorry this is so long, but I just need a place to get all of this out, and maybe some of you have dealt with something similar and can offer me some advice or support.

Yesterday I got back from yet another new doctor's office, this time a neurosurgeon. He explained to me the same thing I've been hearing over and over again-- that yes, he knows that I am problably experiencing some "discomfort", but I am not a candidate for surgery.

I went through my (now typed with annotations) list of problems/symptoms and he just nodded and advised more physical therapy.

When I explained that I've been doing physical therapy for 6 months, 3 times a week and it hasn't done snot, he just told me to try a new physical therapist.

Then he told me, after looking at my MRI results, that I should probably know it would be a bad idea for me to have children, as the pregnancy would basically destroy what's left of my back, and then prescribed me a cane to assist with my walking since my right leg has been giving out/really hurts to walk on due to sciatic pain.

My problem, I guess, is two-fold.

First, I'm 23 and dating the most compassionate, caring and understanding man I have ever met. He has been absolutley incredible through this whole ordeal, but at the same time, I feel enormously guilty for constantly ruining plans, dates and activities because of the constant, excruciating pain I'm in. I know a lot of it is just good old fashioned Catholic school guilt, but I just don't want him to spend the rest of hislife worrying about the next time the pain is going to strike or if I'm going to be able to get out of bed that day if he isn't there.

I feel like it isn't right for me to have to ask him to deal with this, like I have just dumped all of this on him and forced him to accept it, and I feel terrible all the time because of it. I love him a ridiculously stupid amount, but I feel like I'm ruining his life. Like I said, I'm 23. He should be taking my pants off, not having to help me put them on in the morning. I'm this young and already my back is this bad--- what am I going to be like when I'm 40? I don't want to burden him for the rest of his life with a wife who can't contribute or do anything by herself.

Second, and on the opposite end of the spectrum, on the surface, I am a pretty bubbly and outgoing person. I do theatre and I have bright blue hair. I love talking to people and made the decision long ago that I couldn't let this affect my life--- but the problem is that I don't think my doctors take me seriously. They see a, seemingly happy young person with stupid hair, and I feel like they think I'm either exaggerating for access to pain medication or making it up for attention.

I assure you, neither of those things are true.

I feel like the expect me to be writhing on the ground in agony, weeping and moaning and begging for relief. I am in pain-- and a lot of it-- all the time. Over the past two years, I have gone from running 6 miles a day to barely being able to put my shoes on without assistance. I have trouble walking, driving, going to the bathroom (sorry, tmi) and generally living the life a normal 23 year old would live.

This is ruining my life, and no one will take me seriously.

They have proof from the ridiuclous amounts of tests I have gone through that there is legitly something wrong, but no one wants to take steps to fix it--or even reduce it-- because I (and I have been told this, verbatim by doctors) "Seem too happy to be in THAT much pain". How about screw you, sir?

I don't expect to get magically fixed. But I'm sick of not being taken seriously and I'm sick of being made to fee bad about complaining to doctors and for bugging them for help.

I found this wonderful forum and it seems like a lot of people are going through the same experiences I am, so I am just wondering-- how do you deal with this? What do I say? What do I do? How do I keep from going crazy?

Thank you all so much.


  • Hi! Welcome to Spine-Health. I am 24, so I can relate to what you are going through. My neck/back pain started when I was about 18. What does your MRI say? What are they having you do at PT? What meds are you taking? Have you consulted with more than one surgeon? Fortunately, I have a "family" neurosurgeon (he has operated on at least 7 family members) so he took me seriously. My primary care did not.
    ACDF C4-5 June 23rd, 2011

    Another surgery in the near future. I am 26 years old.

    Current Meds- Norco 7.5/325, Cymbalta 60mg, Gabapentin, Adderall 20mg
  • Thank you-- I've trolled around for awhile but I decided to finally join. It is great to find a place where people "get it".

    Anyway, I have an annoying case to deal with because on top of my current back problems, I also have a movement disorder. So that's fun!

    But I have been to see about 4 separate neurologists, 2 chiropractors, my greatly-annoyed family practitioner repeatedly, and the neurosurgeon I mentioned before. I am scheduled to go see a second neurosurgeon next week. I have also consulted with some specialists at the University of Iowa on both this problem and my movement disorder.

    To answer your questions, I'm not taking any medication, nor do I plan do unless they tie me down and force me to. I know the meds have really helped a lot of people, and I consider them a valuable resource in many people's treatments, but I watched drugs and alcohol destroy my brother's life and, besides sometimes some Tylenol or something, I don't take meds. I have been prescribed every muscle relaxer in the book, which only ever serve to turn me into a zombie (I have scars on my back from where I was so drugged up that I kept clawing my back to try and ease the constant "itch" I feel. That was pretty terrible). They also routinely try and give me vicodin, but I always refuse.

    PT is a (boring, repetive) routine of stretches, core-strengthening and balance work with the goal of making the muscles strong enough to keep everything in place.

    My MRI/other testing showed early stages of disc degeneration at various locations up my spine, as well as 4 disk bulges (L2-L5). There's a herniated disc in there somewhere as well, plus nerve damage from a previous disc shift when I fell as a kid.

    I'm a hot mess! :)

    I really don't want to have surgery if I can help it-- it seems like the risks way outweigh the benefits, but I am just getting frustrated with the whole thing.

  • Welcome to Spine-Health.

    You keep mentioning neurologist and neurosurgeons - have you thought about going to an orthopedic spine specialist/surgeon, specifically a fellowship-trained ortho spine surgeon that works on nothing but spines?

    I seem to see a trend on here where neuros tend to not take these things as seriously as orthos, althought that's just my opinion and others may take me to task on that thought.

    I just think that a whole different mindset and eyes might think and see things differently. Seeing neuro after neuro is getting you nowhere, so perhaps an ortho might be a good change for you at this point?

    Just a thought...Good luck and keep us posted.

  • dilaurodilauro ConnecticutPosts: 9,875
    Let me address this in two pieces:


    It is very frustrating getting to the bottom line of your problem. Seeing different doctors getting different answers, none which seem to identify the major problem is hard to swallow. The unknown is much worse than dealing with the facts.

    I would, even for a piece of mind take your MRI results and seek a second opinion. Its one thing when a doctor talks about this spinal issue, this can be done or not done, but when they go into the future, about your ability to have children, that is something much more.

    You need to find a doctor that you are comfortable with , that listens to you and can understand the pain and fears you have.


    You boyfriend. That is one of the number one problems I've seen on this site with couples that are just experiencing spinal issues.. Its harder for younger folks.

    So much of it comes down to communications. You, the patient feel so much guilt about putting your partner through so much. Now and in the future. At times that can be your entire focus.
    Look at it from your other's point of view. They are there to help you because they want to and because they love you. Sure, much of everything may not be completely understood. But thats something together you have to discuss, so you know all the ins and outs. Believe me, its not always so dark and bleak.

    My first surgery was when I was 28 , now I am 61 and still married to my first wife. She has been at my side more times than I can imagine. Without her, I wouldnt have progress as I have today. Sure, it has its hard times, things that we couldnt do, things we missed, etc.

    Two way communications is the best way to handle all of this.

    Good luck, stay focused, stay strong and things will fall into place.
    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 too think you should see an orthopedist who specializes in spine issues. At least from what I've heard about the doctors in my area who specialize in spine disorders, most people with neck problems go to neurosurgeons and those with lower back issues go to spine orthopedists (dunno why).

    It breaks my heart to hear of a young person with back/neck pain; I sure hope you can find an empathic (for a change!) doctor who can help you. Some of the other young spineys on this Board have shared experiences with doctors who seem to pooh-pooh their problems because they're, ~X( quote, too young to have spine issues, endquote ~X( . As their various ages show, it can happen to anyone regardless of age! Best wishes and >:D< >:D< >:D<, Ess
  • ...to feel not alone in this.

    Thank you all for the kind words, support and suggestions.

    There is a definitive lack of orthopedists in my area, but I will look into it.

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