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i can't understand you

terror8396tterror8396 Posts: 1,832
edited 06/11/2012 - 8:36 AM in Chronic Pain
through the couple of years that i have read and posted on this site, i have come to one conclusion. as i read posts, i don't understand what is going on. it seems like some people have a medical dictionary and use words or conditions that i don't know or they don't know what they are. i don't think i am the only one who feels this way. when someone posts that they have a bilateral steonic development of the cervical bilateral 5 vertabrae on the right side which is compounded by unilateral orifices in the conjuctiva joint. i go what? i am exaggerating of course but it is hard to give advice when i don't know what one is suffering from. to me it seems simpler to write i suffer from stenosis, or sciatic pain or i have a herniated disc etc. it seems like some are reading from a report but most of us are not doctors so we don't know what you have.and if you don't know what this means, have your doctor explain it to you in english. your doctor should say you have sciatica or stenosis or a herniated disc. this is just my opinion but if we simplify our complaints, we can be of more help
I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.


  • Jon,

    I think that a number of people quote from their MRI's or other diagnostic tests. Not all of us understand the medical terms used and obviously very few here are qualified to interpret them but a lot of people want us to try and I think that's why you see some of the medical terminology which is posted. I've seen a number of posts where the person has been given their MRI results but apparently have not yet been given their diagnosis. An MRI can show a lot of problems in a person's spine which may not be causing them pain or other symptoms at all. I see confusion in members who have things like degenerative disc disease or stenosis on their MRI becuase their doctors give little or no mention or concern about those conditions. From all I've read, you can have any number of spinal abnormalities without having any symptoms or loss of quality of life from them so the doctors don't even mention them many times.

    Not sure if this addresses any of your thoughts. I'm sure others will weigh in on this topic, too. :)

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • Jon, I think that this forum offers a wide range of options for advice and information. Some people are looking for specific medical terminology interpretation and some people are looking for emotional support. Some advice givers are well-versed in the vocabulary, others not quite as much. Some are wonderful at bolstering those that are down, some kick others in the rear to get them going. We all have the option to pick and choose the posts to read and posters to confer with that interest us as individuals. Personally, I am fascinated by much of the specific medical issues and treatments. On the other hand, I have also gained a sense of comunity and support through the emotional issues discussed here. I think the beauty of this forum is that whatever you are looking for -advice, support, or specific medical information - chances are pretty good you'll find it here.
  • i agree with both of you but my point is that it would be easier to give advice to people if we knew complaints in english and not medispeak. it is like figuring out taxes to me, a lot of verbage but i still don't understand it. if one said i suffer from stenosis, it would be easier for me to put in my 2 cents because i know specifically what they are talking about
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I understand what you are saying. I find that frequently people need to be prompted to give more explanation so others can respond to them appropriately. Newbies come in here and just post something, not knowing really what to say or expect, I think. Perhaps there needs to be a sticky note with that type of prompting that new spineys could read before posting. Or, maybe that kind of thing already exists! When I started posting, I'd been reading some of the other posts and kind of got a feel for how the forum works.

    Also, I see quite a few new spineys come in here in a panic, full of pain and fear and just looking for immediate support. They copy their test results and yell Help! Don't know that we can expect a coherent explanation in layman's terms from some of these scared people, but I think your idea is a good one that would save everybody time and get these people the best and fastest moral support from everyone.

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • Hello- I think the problem may be that they are scared. Think about it for a moment. They have just been told that something is wrong, like severe bilateral mubojumbo, with the grapevine twist. [I am not trying to toss darts at anyone!] Maybe they have just had pain for a short while and during this time, they have begun to fixate on the pain. And fixating on it, begins to bring it to center attention in the brain and all of a sudden, other symptoms come out of the wood-work, because they have been working 24/7 about what else is wrong with them and the sub-consious mind [sick thing that it is, starts working at bringing your sub-conscious thoughts into reality, so in the span of 30 to 90 days, your now have your mind making symptoms and creating a reality based on fear. Is not the brain just the smartest thing! So - with all of this going on, we have a chance as lay persons who have lived with pain, chronic, surgeries, PT and all kinds of other stuff to kind of help these people get to a point where they can now feel like they are not alone. The big words they are using, just mean simple things, except when your 20 and you've been told you have a spine of a 90 yr old, as I was, LOL. So here we get to learn that this stuff happens, some of us have experience living with it, and we share our experience of how to live with it. I too don't bother to look up the medical terms, I wait until they give me english instead of medi-english.

    Cheers - C45
  • hi john .i am guilty of that but its the only way i know .i am married to a medical person and i understand my condition and all the medical implications .i was treated so much better when i went for my last MRI scan because i could converse on the same level as the doctor and consultant radiographer.when asked what is wrong with you and where is your pain and what was you previous medical history i could give details and understand what the doctors were saying to one another and i was included in the conversation and asked my opinion and was given my results the same day {this is not normally done here in the uk} normally the radiography would say you will have to wait to see the doctor in clinic so you then have to wait for another painful scary 6/12 weeks to get some information about your own problems .so its not always a disadvantage .and when i am here i normally will say the correct medical term like epidural fibrosis the {scar tissue} so people don't think i am a smart arse hope you take this in the context that i intended it to be ..light hearted...!!
  • Dear Jon,

    Just a quick :H and a reminder that you'll never have to worry about experiencing this with me!

    LOL... you know this is true!

    It's a challenge sometimes to just sit and type, let alone trying to be detailed with precise medical terms and that language they speak. LOL. I do enjoy learning new stuff by reading, though.

    (I'm sorry, I just have to find a little humor right now with my set-back. Thought I'd bring a quick laugh to you).

    Best wishes to all,

    Tammy :)
  • I think a lot of people just regurgitate what their doctor's say.

    Fancy diagnoses can be found everywhere and they seem to get more attention than "regular speak" descriptions. For example, my dog has lots of fancy words. The trap door on his stomach doesn't close, so his food and water fly back out unless we hold him upright for 40 minutes after he eats or drinks anything. It sounds way more important if I say he has transient lower esophageal sphincter relaxation secondary to gastric distension. =D>
  • dilaurodilauro ConnecticutPosts: 9,839
    What many of the previous posts made is so true.
    Words come directly from MRI reportrs, from what a doctor says and others I think when a patient sees a condition that they have, they search on it and get the definition from a medical journal or some other technical site.
    All the words are true and describe the conditions.
    Do we all understand them??
    Heck no, and I've been around chronic pain, spinal problems since I was 17 years old.
    There are still a number of terms I don't know the details behind. What that happens, I dont generally reply, but when I do make a post it comes from some prior experience or knowledge with the subject.
    But I will take those new terms look them up so that the next time I see them I will understand them.

    For me, when I post, I always feel more comfortable
    saying words that I know about and hopefully can relate to people. I can speak of something because
    I went through it, it makes posting a lot easier and hopefully more meaningful.
    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
  • like i have said before, if one reads the mri and goes what????? all you have to do is go to your doctor and ask them to explain it to you in plain english. I do that if if don't understand and it is easy to do," doc, can you please tell me what this means in plain english? i see a lot of words but i don't know what it means. for my peace of mind please let me know. and when he/'she does you can say does this mean surgery or can we work on it without surgery or meds. it is very simple to do. and not unless the dr is a complete tool they will be glad to do it and if they don't, get a new dr. simple
    take care back people
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Jon, After reading back through this thread, I think I have a better understanding of your intial post. Correct me if I'm wrong. I thought you were refering to the answers that people gave, not the questions being asked. Sometimes you wonder what the question is because the poster throws out a bunch of medical terms and leaves it at that, not really clarifying what they want or need. I think Inchworm and C45 got it right - some folks are in a panic and they are scared and overwhelmed by the med speak. I did some homework before I started posting here and like to think I had a pretty good idea how to get answers to my questions. As a result of posting and reading the answers, I gained more knowledge and was able to ask more in depth questions of my doctor. The question in my mind now is how can we help newbies take a deep breath so we can help?
  • I fully agree with you Jon. When someone posts their MRI readings in all the medical terms and then say...this is what is wrong with me. I do not have a clue as to what to say or how to help. :?
    Patsy W
  • I do think people need to be careful in trying to dumb down a problem. For example those of us with cervical myelopathy do understand it and what it means. If I were to sit and list all the symptoms, I would be here all day long. I expect anyone who has that condition to use the word. They need to understand that word and know what it means. When they go to another doctor they need to be able to communicate they have it so as the doctor can decide if the issue they are there about is related to that condition or another underlying problem is developing. When they post here they should be using it as well.

    If I posted in the leg pain and wrote I had pain in my thighs many would post back about lumbar issues. While in reality I have cervical myelopathy. If you don't know what that is then you don't suffer from it and can't really help.

    I typically, as Ron said, stay out of post if I don't understand the words. It usually will mean I have no experience with those issues. Since this site is based off of your experiences, if I don't understand what they are writing then more than likely don't have experience with it. People come here and use the medical terms there doctors have given them to get others with the same diagnoses, opinions. I for one don't have everything here that everyone else has. I have a few of the conditions, so I can't know about everything. Not to mention they need to know there real diagnoses if they want to research it more. Just researching symptoms can be very dangerous, giving your self something you don't have. Many conditions mimic other diseases. How many cervical patients been diagnosed with carpel tunnel or tennis elbow first? They had a doctor who treated the symptoms without making a confirmed diagnoses.

    So I for one will take the medical terminology. Like Ron if I don't understand or never heard of it will go look it up and maybe learn something new or say I have no idea how to help that person and move on to the next thread. I certainly don't have a answer for every condition on this board or every poster. If the thread has fallen down some I may leave a short message to bump it back to the top. One of the most important things this board serves is to help members become educated about the conditions they have. Only using the right terminology can you research the medical articles.

    So I am confused, how far do you need them to dumb it down? AS far as reading MRI results, there is no one here qualified to read them and give a diagnoses, in my opinion, so that is a mute point. The post have been made time and time again about posting the results and yet they appear. So it is easier to leave them alone and tell them to wait for their doctors or teach them how to use the search function to learn the terminology on the reports. But we can still welcome them and politely explain we don't read MRI results and the reasons as to why not and point them to the forums that may give them the most knowledge by reading old threads.

  • one term i can always understand is
  • yes pete-ouchie in my right leg does it for me too. sciatic pain is a certain type of pain from butt for middle leg to foot, stenosis has another pain etc. we don't need a medical dictionary to help people. all of this will boil down to as i said before sciatic pain stenosis pain herniated disc pain. these are basically the major back pain issues. on this site they give the types of back pain also without the verbage. to to the main page, see your pain and post it. dumb down is not the best term i would use, i would perfer to simplify the posts
    my son said it best- i have an ouchie or boo boo in my leg and it feels bad like fire
    i guess i am a boo boo ouchie type of guy and not a nebular herniated circulated stenoic offical orifice of the 3rd right verbose connundrum follicle type of guy. pleeeeze keep it simple at least for me
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • i wish i could tell the difference between the pains from sciatic, stenosis, ddd, neural foramin narrowing, facet arthritis...etc they all blend in together and hurt like hejj.
    i'm all for simplifying the terminology but the drs have a menopoly on it....pete
  • I have to say I was laughing at your initial post where you mentioned that diagnosis of bilateral stenotic degenerative fibrosis...so and so =)) You made my day.

    I was naive when I officially became a spiney and I did my best to learn everything pertaining to my condition, esp anatomy. And I also followed the format everyone used when I first starting posting in fear of getting things wrong and cracking up folks.

    I understand how hard it is to explain yourself when all this stuff is so complicated and you only have MRI reports to go by. I have learned so much by joining SH and even still I find out new info every day.
  • Thanks Jon and Pete for the chuckle.
    I needed a chuckle and you guys gave me one.
    Patsy W :))(
  • I see in your sig that you list ligamentum flavum. Isn't that sort of a hazel-nutty coffee taste? And doesn't every women wish she had facet hyper something or other on her engagement ring??? A little narrowing of the neurons in my brain made me say that. Have a happy....:)
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    There are no Doctors on this site. And don' talk down to us if you want answers.
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • it HELPS us to know that correct medical terminology? i have found that over the years i have gained a lot of knowledge about my own health issues and i have found this to be very helpful when i talk to my doctor he talk to me as if he was talking to another doctor ..he said that he wishes all his paitients were as well informed {please don't think i am being conceited} it just makes it easier for medics to get there point over without having to explain in layman's terms {and if you are only ever getting the layman's view } you will never learn .and with out conditions ..many are a re life long problem i think it would do no harm for us to learn as much as we can about our conditions ..i understand that some just don't want to know all the technical side of things but i find it less traumatic when i know what the doctors are saying ,don't get me wrong there are many medical things that i don't have a clue about and i don't profess to know everything about back problems ..i am the first to put my hands up if i dont know or understand and ask ..just another view..!!
  • Straker - you are right to - learn as much as we can about our conditions. Without us having the initiative to start to have an understanding of the problems, the Dr has to lower his stuff, to lay-terms. The thing for me, here, is that most of the issues can be lowered down from the technical to the lay-terms, as we are not Dr's and are just trying to understand and help each other. To me - it is up tp me to go after that education and get to the point where in some ways, I can direct some of my care. This is not easy, but as I said to my Dr one time, I know how to fix myself, I just need you to write the scripts for what I need to deal with the current issue. His attitude was along the line of being challenged, and I was pushing him a bit, because I had taken 6 months to research my problems and then started to present my thoughts back to him in writing.

    But here - I look to help where I can, if I have experience that directly relates. I only chat from my personal experience. If I have not been there, I will not ever offer an opinion, because I do not wish to.

    Cheers - David
  • Thank God when I started having sugeries a few years back, my Nero completely talked to me in a way I understood without the mumbojumbo. He would say those big words then say stuff like "that means your back looks like crap and looks like someone butchered your back or my favorite you outta hurt." or when explaining the proceedures
    "I'm gonna jack your spine up an inch and pull it in, get them bone on top if bone off eech other" and after surgery I say how it hurts I get " duh, I just jack your spine it's suppose to feel that way" he cracks me up not talking medical terms to me, I so appreciate it. He did the same after brain surgery on my dad. He told my dad once after dad talked about recovery and symptoms " yeah my hands were all in you brain your suppose to feel like this or that. He's straight forward and funny as heck.
    Whenever I get results if MRI I just look up each word and also ask dr.
    I'd never expect someone who doesn't have the same condition to understand what they mean. But most symptoms others relate if they have the same..
    Just always ask your dr to speak to you in your unmedical knowledgable level. LOL
    If we were drs we wouldn't have to ask! LOL
    But you can almost play one on tv after learning this stuff!
  • the medical medispeak reminds me of the star treck episode where they time travel and end up in a hospital looking for a fellow crewman. they are running around with a woman on a gurney and she is moaning. someone asks bones what she has and he says something in medispeak like post partial menospasaul stenosis, and someone says what does that mean and bones says,CRAMPS
    ohh by the way, i don't know the medical term for cramps, i was just improvising.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I luv House! I wish he was my dr!
    He gets 'er done.

  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    But you're not understanding Jon's' or most of the rest of us having a problem with other members talking over our heads. Talk in a language that we can understand, so we can understand your problem. And we can maybe help.
    I do applaud your research and your knowlage. But you can believe your a one out of one hundred. Believe me, I wish I knew more terminology!
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I am still a "newbie" but love learning all of the proper terms for my ailments. Most people I meet don't even know what a spinal fusion means. So I carry an X-ray in my car and show them! I love the look on their faces.

    I too am a big fan of the show House! I think he has a bigger collection of canes than I do. Hey, they have to match what I'm wearing.

    If I don't understand a term or procedure I look it up, you're never too old to learn and it does level the playing field a bit more when dealing with medical personnel.


    Really bad back
    numb butt
    leg stops working
    walk like I've had a few

  • i try to always give the layman's terms where applicable ..i am so used to seeing the correct medical terminology that i have just gotten used to it !! please don't get me wrong i am useless on most other medical terminology there are topics on here that i have never posted on as i don't understand whats being said and i don't have that particular condition .i just try to obtain as much knowledge about my condition as i can .at the moment i am getting as much up to date information on ADR {artificial disc replacement } as i know nothing about it
  • First let me say straker, your absolutely correct in using the correct terminology here. You will get used to discussing your issues so when you see a doctor, you can have a clear discussion with them and your both on the same page.

    I was reading the sig lines here in this thread and was wondering why, I don't see booboo and ouchie in them? If you suggesting everything needs to be simple why not make those just one liners? I have a booboo on my ouchie cause I fell on my bom bom? Just a thought to make it easy for those who need it to be?
  • ???? what are you saying you have lost me ??
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