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On Recovery & Research

ibivyiibivy Posts: 28
edited 06/11/2012 - 8:34 AM in Back Surgery and Neck Surgery
Hi everyone. I've been here on and off lately, and as a little update on my physical health: I had a lumbar microdiscectomy (L4-5) 10 days ago. I am writing this while laying on bed, computer propped on a bed tray, as I have been in strict observance of the "limited sitting" restriction since surgery. I'm doing alright, but can't quite gauge pain levels as I'm on pain meds, spending the majority of time on my back, and am so soon out of surgery. I'm cautiously optimistic and know that it could take a year or more, plus constant physical therapy and work, before I get whatever results from surgery that I'll be able to. I definitely feel pain, but it is tolerable with pain medication and strict observance of limited movement except for walking and the few physical stretches I was told to do.

I've been perusing the forum for the last little bit, and I've come to realize how many folks are really in the dark about procedures, expectations, surgical options, etc... As a graduate student I have access to my university's journal database, and I spent the month prior to surgery looking up and reading as many peer-reviewed articles as I could. I feel that I went into meetings with multiple surgeons and neurologists with a good understanding of what they were saying and why they were saying it.

What I feel the general public is missing out on are such databases or areas of knowledge. So many of the articles I found were limited to students, and even others I came across were limited to paying customers. Has anyone using this site ever come across a great, free database that others could use? I think that, at least for some people I've run across here, having a source such as that would be what they're looking for- not just the support of others as this forum allows, but scientific sources to give a better understanding of their situations and options. Has anyone run across such sites? If so, I think it'd be great to post here... (or maybe links have been posted, and I just have not run across them- in which case, I apologize for speaking before searching efficiently).

Thank you to everyone for your kind thoughts and wishes. Here's hoping things go well!


  • well...your out of the hospital and recouperating .... congradulations. and youre following the drs orders. i am an older person who has had 6 spinal surgeries. i have learned by my own experiences plus as a curious person i have read many articles on the internet. i just googled microdiscectomy and there were 67000 sites...many were articles written by doctors. certainly that would give you plenty to study.
    i too am curious about the spine.
    I hope all goes well and your knowledge increases exponentially....
    best of luck....pete

  • Oh, I'm definitely not saying that people don't do research. It's just that, when I did generic online searches, I came across of, well, BS. Or a lot of things that have no backing to them at all. It's hard to find real hard science that isn't just there in order to pilfer money.
  • i just tried to get details from 3 sites and they all wanted $. i guess i'm no help to you. i have not been looking for the detail that you would like. i guess its all about$
  • Hi Ivy,
    So glad to hear you are out of the hospital and doing well. Good for you to observe the doctors orders. Many and most don't do those things. I am not sure if you realize that spine-health has a whole selection of doctor written and peer reviewed articles. The forum side that we are on, is just a small piece of spine-health. There are literally 1000's of articles to research in and all for free. At the top you can find following them on twitter, to have the Rss news feeds sent to your email addy(strongly recommend), information on any new trials and how to get into contact with directors of the trials. It was actually the research that i was doing about my own surgery that led me to SH. Have a go with the search feature at the top of the page and see how many articles you can find. Although many don't know this but SH was given a award for being the leading information site for spine related issues in 2007, as the online information goes, passing up such sites as the mayo clinic.

    Anyway glad to hear you are recovering well and hope you continue to make great strides in your recovery. You will also become a valuable member when you can explain to other members your experiences as well. Good luck and take care.
  • While most patients may not be aware of this, their local community college/university library or hospital library usually has access to EBSCOHOST(sp) to search peer reviewed scientific articles. I spent countless hours on my laptop at home as well as using my sign-on for other databases.

    The problem is, while many people may be very intelligent, it is sometimes difficult to sort through scientific research articles. I am an experienced and published nurse, but I am NOT an ortho or neuro nurse, so sometimes I had a hard time understanding the language used.

    So, my main article on rhBMP-2 overgrowth that I brought to my surgeon's attention for further explanation, didn't go over well. In my personal work experience, most ortho's don't like to be questioned. I asked him about the article, he stood up, walked to the door, and said, "Since you like to research things so much why don't you research spinal cord stimulators because that's where you're headed." Typical ortho in my opinion.

    So, if the general public with no medical knowledge starts reviewing research data, can you imagine how it would turn the surgeons heads around? LOL. I agree, it would be nice for everyone to have convenient access, but it is there, only they might not understand it.

    Good idea, might help some, it's amazing what's all out there for us. Just who is going to translate it for the non-medical folks?
  • Firstly I am glad you are recoving and share your need for information.

    I published some articles once which needed information on how the human eye works (to interpret freeway messages) and was able to walk into the medical library and find the information I needed (and referenced it accordingly). Articles and scientific journals are often difficult to access on line due to copy write and the latest research is normally years away from being made available as a practical treatment and irrelevant to our immediate needs.

    The real question is why we do the research (lack of information and options from our doctors) and the challenges we face sorting out fact from fiction.

    Fiction and Misinformation - I would also say that there a lot of sites in many industries including the medical, that present misinformation (to the level of quackery), pushing their solution in isolation and even found one site that would do a complete diagnosis by submitting an MRI (which after some research on MRI as being part of the diagnostic process realized that it was not an organization to deal with). On a similar basis there are also many sites promoting their exercise equipment (fitness instructors are taught to analyze exercises and the better ones can identify equipment that offers no benefit or dangerous to the user and the Physical Therapist is an expert) or exercise programs (for a fee). Unfortunately while we would like to regard all Medical practitioners as professionals some are just damaging to their entire profession and this upsets the true medical professionals in a different way to the sufferers like you or I. As a general comment I would like to thank the Spine health staff for filtering out the Quackery!

    Doctor Patient Communication - Unfortunately what my current experience has confirmed is that the biggest problem in the Medical Field is the extreme variability in delivery which is fairly easily explained. It comes down to the doctor and the communication tools and methods they adopt. My experience remains extremely critical of the communication which is the reason we have to do so much research (and being in the Netherlands where the language is Dutch vs. English language was not the issue in my current case).

    Some examples of my experience include:
    • 3 years ago I had sciatica down left leg but was never told what was causing it. In hindsight it would have been bulging / protruding disk and if that was confirmed at the time probably would have managed myself differently and avoided this episode (which was full herniated disk).
    • The Doctors know that most herniated disks will repair in 6-12 weeks so many doctors will wait to see if improving and not order an MRI immediately (and as Urgent) to confirm their diagnosis and use it as a tool to explain what is going on and give the patient confidence. In my case I did push for MRI and then given Narcotics but sent away with little information and told “rest and take the drugs” and they would monitor over the coming 2 weeks and then another 2 weeks and …. So the 6-12 week guideline they adopt was never communicated and found out on this site!
    • The Doctors may empathize with the level of pain but do not explain what the Narcotics are doing, such that you can not understand and manage their application. Would like to see a short write up of the possible impacts of a given drug, what not to take with it and links to its Manufacturers “Package Insert” as regard that information generally lacking.
    • The basic information on how to speed up the recovery is not communicated. In terms instructions that may have helped me was (and please correct if wrong): The disk is herniated here (from the MRI) - every time you bend this way the center of the disk leaks. Do not do ….. and keep all pressure of the disk until it closes. The best way to get out of bed (to go to the WC) is not to sit up but to roll over on side, drop legs to floor and push yourself up with straight back then stand with the assistance of …..
    • Some doctors are just hopeless. Some countries put the medical students in front of patients earlier than others, but then with financial cutbacks the supervision levels do not exist (or done in bulk at end of day without the patient seeing the qualified practitioner) and find we are treated by unqualified and inexperienced staff. The worst experience I personally experienced was at an Emergency room where after some assertive discussions had both arms X-Rayed to be told “good new and just sprained”, telephoned following night to be told both broken (Ulna) and then when at Orthopedic section of hospital advised it was both Radius broken. This was followed up to be told as a person employed in the IT area I can go back to work (when could not rotate my hands enough to wipe myself after #2’s at the WC).

    What can we do?
    I am a huge fan of continual improvements, rather than replacement and make new mistakes). I would suggest to:
    1. Make suggestions from our collective experience what we have learned and what information we would like. I did a Personal Message to one of the mediators with some suggestions for improvements to the site and information I would like to be provided in a doctor reviewed article. I was very pleased to receive a response that suggestions are under investigation (as covers a wide range of responsibility). By sheer coincidence I noticed (the following day) some articles republished (the same day I reported) covering some of the suggestions (which could not possibly be the result of my suggestion given the timeline). This indicates the owners of this site are ahead of some suggestions (or others making the same suggestions) and looking at continual improvement which I am sure we all support. I believe some of the doctors that make the presentations use this to aid in communication with their patients so the additional questions from their patients will also mean improvements.
    2. It is possible we should ask for the forums to be data mined (that is look at the common themes and need for information) and have those subjects addressed by doctors as articles.
    3. There are many, many articles and video’s on this site. I spent weeks going through many of them. While I am sure there is a better way to organize them so we can access the ones relevant to us I have not worked out a better method.

    In general I agree we need more understandable information!
  • I know that my local hospital has a research library that people are welcome to go use. All the medical journals are there.

    ALSO - check with your local library! Libraries pay for online databases for you. If you have a card, you have access for free. My local library gives free online access to Medline, Medline Plus and MedicLatina as well as Academic Search.

    Medline - Online library provided by the National Library of Medicine and the National Institute of Health provides the best researched and most respected medical information available to the public. Tutorials about health conditions, drug information, symptoms, and possible treatments are all compiled in easy to read articles from outstanding medical authorities: including the Mayo Clinic, the American Heart Association, the Muscular Dystrophy Association, and many hundreds more. THE best place to begin reading about any medical condition or concern.

  • It's important for people to do research, arm themselves with as much information as they can, and learn from other's experinces. But, the web can be a source of misinformation with plenty of snake oil being sold. Sticking to reputable sites for info helps. However, unless you are a doctor with 8-11 years of medical training AFTER finishing college, you are unlikely to have a strong understanding of all relevant research. So, your doctor may not always be right, but, don't pretend you have as much understanding on the subject.
  • Terry01- I really enjoyed your post, as well as your well-explained opinions and thoughts.

    I also did not realize that this forum section was linked to papers- thank you for pointing that out.

    On a personal note... I also have to agree with the sentiment that yes, you can read a whole load of articles, but if you don't have a knowledge base upon which those articles are being placed, then they can be helpful, harmful or neutral. I have a medical background, and my knowledge of anatomy, physiology, and science in general is the bias I've got when looking through things. Something I did find fascinating was how differently I would be treated by the same doctor when, in their general questioning of life style, they learned my background. But no, I'm not a specialist, and therefore I felt quite often at the mercy of specialist opinions. Which is why I'm thankful that I had access to articles, through which I could sift, read, approach and learn from. I just wish more folks had access to such info, and that's where my original posting came from.

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