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Prepping for first appt w/new surgeon

DedalusDDedalus Posts: 92
edited 06/11/2012 - 8:45 AM in Back Surgery and Neck Surgery
Sorry if there is a better forum for this, but this seemed the best.

I am going to a new surgeon this Friday to see if we can figure out anything that can surgically be done about my pain. I am TERRIBLE at conveying my problems verbally in a appt. I get anxious and embarassed and tend to minimized everything. So, I am trying to go in a bit more prepared than normal. Here is what I have so far:

All MRI/X-ray films.
Brief written history relating to the pain
Medication list w/notes

I think that is a good start, but it doesn't capture a lot of what I want to have considered. I have 2 things I want to address, but I don't know how to best prepare.

First, I want to give an accurate picture of how this pain is dominating my life. I want to give some indication of how many things I have had to stop or reduce or that I still do but don't enjoy like I used to (like sex). But I can't think of a way to do this in a manner that is short enough for an appt., but detailed enough to have an impact. Does anyone have any suggestions?

Second, I have issues answering a lot of their questions accurately because they want firm answers, but my experience can vary from moment to moment. Questions like "What's your pain level from one to ten?" stump me. I want to answer "From 4 to 8." But they don't like that. "What is your primary complaint?" I want to answer "The pain, duh!" Like my pain level, my primary complaint changes. Somedays I can sit longer than I can stand. Some days I can stand longer than I can sit. Some days I can't do either and have to lay down. On so many things, they want a clear, fixed answer and I don't have one. Does anyone have any advice how to deal with this issue?

Thanks in advance.


  • Oops. In my list, I forgot to mention that I am also taking a spreadsheet detailing all of the time I have missed at work for the last 12 months (unpaid FMLA). I have to track this for HR anyway, so it was easy to modify and prepare for a doctor.
  • Howdy Dedalus,

    It looks like you've already answered your own answers! I have a word document I titled simply "Neck symptoms":"Back symptoms." On it I give a brief on how I came about my issues, and what the time line has been. The symptoms themselves, and what brings them on. In closing I list how it all affects my day to day life, including yes, sex! Addition to that, I took the Dermatome map and marked it front and back with my pain, weak and numb areas. Pictionary is a wonderful thing! It probably wouldn't hurt to have a page that lists all treatments you've undergone in an attempt to relieve your medical issues - what has helped, what hasn't.

    As for their paperwork and pigeon holed answers. Since you are going to be talking with the surgeon, go ahead and put '4-8' on pain, as you will be going into more detail with him, which will make it clear to him. I hope this helps. Good luck with this new surgeon!! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • The history I wrote up contains the hows and whats of the problem and the treatments tried so far, but it is fairly sterile about the effects on my life.

    Do you just make a laundry list of all the things that are effected? That would be one heck of a list! I was thinking I should avoid that, but maybe that's what it takes.

  • Laundry List...heh....if you're like most of us, the surgeon would need glasses after reading as it would be so long! (G) No, I give a paragraph of how I am (retired now..was) affected at work - what I can't do, but need to do to due my job. Another paragraph in what activities (sports, hobbies) that are impacted, and yes the last paragraph, the intimacies with my spouse. This does 2 things, he gets to see a picture and too he isn't overwhelmed with stuff he sees day to day.

    Day to day, what I mean there. All patients will say they are in pain, but in a narrative that makes it personally "you" is what makes it that, verses the cookie cutter symptoms 'laundry list'. I hope that helps. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Brenda has given you some good ideas. I would just like to add that it will be most effective when you are SPECIFIC. Also, rather than presenting the doctor with a long list of things that are effected, I would suggest you pick out one thing from each "category" that is the most important to you and explain briefly why this matters to you -- for example, instead of saying, "I am in so much pain I can't go to work some of the time"....you pull out your spread sheet and show him how it has effected your "on the job" performance (as you mentioned you were planning on doing). And you could mention why you are unable to go to work. How does it prevent you from doing your job....

    I think it helps to keep in mind that this specialty gets very few patients who are happy. When you think about it, they mostly listen to people complain all day long...so it helps to be specific and to relate your pain to YOUR life. Everyone handles pain differently. What is miserable to you, may be manageable to someone else, so you have to find examples that will help the doctor know what this all means to you.

    I cannot really give you specific examples, because I do not know you or your circumstances...so give it some thought, and then write it out, or make lists, or whatever it is that will help you talk with the doctor. I have had doctors ask to see (and keep) what I have written out, so you might want to be sure it is in a form that another person could interpret!

    It is not enough to go in and say "I am in pain and it is the worst pain I have ever experienced." You need to be able to explain how it is effecting you AND your loved ones -- you might want to draw up an overall list to begin with, and then look at it and figure which things are the most important to you...and then figure out a way to convey this to the doctor. You should be able to accomplish this in several sentences if you think about it ahead of time.

    Don't be shy. Speak up. His job is to listen to you and your job is to make your problems known....and rest assured, you will not be the least eloquent patient he's dealt with that day!! You'll be so prepared, you'll do great!
  • Being prepared for seeing a new surgeon is a very important aspect of the appointment. However, I had a surgeon once tell me he didn't want to read my notes but rather come out of my mouth. Sometimes it will list what is the worse pain possible and what is the least pain possible. Also what makes the pain worse or what makes it better? What is your primary complaint is another question. They are looking for any nuerological issues such as numbness or weakness, not just pain. You might want to check out the FAQ section(at the top of the main page) and the article preparing to meet with a spine surgeon. Also if you have been journaling your pain I would be sure and take it with you, so they can see you are trying to get the answers to what could be causing it. Also sense it is a new surgeon, you need to have copies of all your prior testing and films with you. Depending on the age of those films they more than likely will want new ones. Keep in mind they are their to help you and are no different than you and I, just have the knowledge to help is all. Sex is nothing new for a doctor to hear, often times that question is on the paperwork. Most surgeons also have papers with guidlines to help with the sex issue. Good luck on your appointment and hope it all works out for you.
  • It is likely short notice Dedalus, but one of the things I did for a full two months for each day was track in a spreadsheet:

    Medicines taken each day

    Physical activity (gym, no gym, stretching etc)

    Location of pain - legs, feet,

    Type of pain - burning, numbness, tight whatever

    Time of pain - worse in morning, after workout, no difference, maybe even felt like it was a good day

    Sleep - able to sleep through night

    Physical restrictions on this day - None, unable to go to gym, could not get out of bed

    We were trying some different medications and I was trying some different stretches, physical routines. I did this after 4 years or so of trying everything and wanted to try and put things into a clear an concise perspective for my surgeon. Of course, it was the same Dr I had been seeing all along, but when it was presented in such a detailed fashion and he could see what I did on that day and how my body reacted, it became quite clear that nothing was making things any better.

    I would not be surprised if the surgeon is going to take a long hard look at all of your information that you provide, including the X-rays and MRIs and want to evaluate you over a period of time to ensure that he or she is comfortable that they have done everything and presented all options. You may very well leave with "Surgery is likely, however, we want to try these things." If this is the case, don't be disappointed, take it to heart and ask specifically what further information he/she needs to determine whether it is time for surgery.

    My surgeon told me the very first time I saw him over 4 years ago that at some point I would need surgery and that they would work with me to postpone surgery as long as possible. He also told me that I would know when it was time and as I told him "I think it is time" he had me do a little more self evaluation and tried a few different things.

    Best wishes.
  • Thanks again for all the responses. I have acted on a lot of the advice given in this thread, and I feel more prepared and confident than I ever have going into an appointment.

    This is such a wonderful community. Thanks.
  • I was just looking at your "history" and would like to make a suggestion. Be sure to ask about that pars defect and the spondylolisthesis that is supposedly stable.

    I just went through several years of unnecessary pain (in my opinion!!) because every spinal specialist I went to said my spine was stable. I had both positional and supine MRIs and nothing showed the degree of instability that I had. I eventually had surgery and now things are so much better...but I had to fight tooth and nail to get someone to believe me. Then they were "shocked" to get in there and see the extent of the damage. Surprise!

    I'm not saying the same is true for you, but I would ask whether there is some play in that joint that is contributing to your nerve compression.
  • hey ther dedlas,
    I also get very organized before docs appt.
    and often freeze when i get there.. and find my words jummbled.
    So now i write my points and always carry my medical journal..(its huge note book with sections..)i have all my recent reports...also i keep a daily pain journal..and meds
    this way i can refer to them as they ask me questions
    my rhuemo doc loves this and has told more of his patients about me(with my permission)
    Often i have found that when the cma does the pre-
    ? things they do before doc comes in ...i know they dont always write things as we convey to them...
    My doc and I have found this out...
    so stick to your points and if you have to repeat them to make sure doc gets it then do so...thats what they are there for...
    good luck and let us know how it goes
    hope they listen to you...
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • Well Spineys, with your help I had a wonderfully productive appointment! I went in with my paperwork using a lot of the suggestions folks gave in this thread. When I checked in, I sent everything back with my films.

    Before the doctor came in, a nurse practitioner came in and spent at least 30 minutes talking to me and my wife! Can you believe that? 30 minutes. She had read everything I brought in too. She was wonderful, respectful and was the first person to listen to and validate all the nuances of my situation. She took 2 full notebook pages of notes in addition to all the stuff I had written up. I felt so at easy after talking to her, and I NEVER feel at ease in a doctor's office.

    When the surgeon came in, he was thoroughly briefed on my history and situation. He meticulously went over my films with us and agreed with most of my suspicions that the other doctors just ignored (or didn't even give me a chance to say)... and he showed me the evidence in the films that no one else had seen. He took the time to answer every question we had in detail. So very different from the arrogance of the other docs I have seen.

    In the end, he advised a minimally invasive L5-S1 fusion after I get a fresh CT scan and meet with him one more time to go over the details. In the meantime, I am going to get another opinion, but I am thrilled with how things went. Just the fact that I was able to take a step forward has made me feel like a huge weight has been lifted from my shoulders. He really instilled a lot of confidence in me with his knowledge and manner. I am really scared of the surgery, but that's to be expected.

    I know I am gushing, but after 5 years of being told the pain was all in my head or that I needed to just accept it, the validation I got today was priceless to me. The guilt, embarrassment and self-doubt that has been pent up in me for so long is ebbing away a bit at last. I know I still have a long long long road ahead of me, but I am going to enjoy this moment.

    I have to say, I honestly do not think that things would have gone so well if not for this community. Thanks... you all are a blessing!

  • Great news that the appointment went so well. It sounds like you have found a good surgeon who you can have a good relationship with. :-) That is worth a lot!

    I know that feeling, when you have a sense of peace that somebody has understood your pain, listened to you and has a plan to do something about it.

    Strangely, when I was told that I needed a fusion or I would end up in a wheelchair, it gave me a sense of peace that I now knew what I had to do. Before that, I had spent about 2 years wondering if I should go ahead with the surgery, and changing my mind over and over again.

    You have made a big step forward in your decision, and there is hope of relief for your pain. :D
    That is always good news!
  • I'm very happy that you finally found a doctor that you have confidence in. Once you have that, it's easy to go down the road that is chosen because you have the faith that there's something that can be done by a competent and caring surgeon.

    Like I've said here before, I think that spineys are the only ones in the world that are glad when they're told they need surgery - it means that someone finally understand where our pain is coming from and that there's a possible solution.

    Congrats and yes, you have a long road ahead, but with one foot put in front of the other, you'll soon be on the road to recovery.

    Please keep us posted.
  • Sorry to hear you are facing surgery, but like you, glad to hear you found a doctor/surgeon that actually listens and explains things! My last Neurologist was like that, and like yours, made copies of my notes and drawings! I'm hoping my next Neurologist is like that! Please keep us posted. It's great to see reports such as yours! *HUGS* :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Well, at least now you have some confirmation of your illness and can begin the process of moving forward.

    You mention seeking another opinion. Now that you are armed and prepped with all the data/information necessary, hopefully it will be a smooth process as well. Don't be surprised if the second opinion decides on a different approach to surgery, should that be their decision that it is necessary. They may well indeed say that they'd prefer a PLIF or something more invasive. Then you get the whole fun of trying to determine which is really best for you and your body.

    Again, knowing and having options is just half the battle.

    Best wishes! I'm six weeks post PLIF L5/S1 and am so far extremely happy that I went through the process.

    Take care.
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