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Hello I'm new here

Womerj1WWomerj1 Posts: 2
edited 08/04/2015 - 5:43 PM in New Member Introductions
Hello there. After coming to these forums a few times in the past month I have finally decided to join. I am 25 years old and I was born with spina biffida. My first spine surgery I had a lower portion of my spinal cord removed because it was determined to cause more issues toward my development in life. As a result the sacrifice was that I lost the ability to control my bowel and bladder and other issues regarding my walking and functions with my legs in general. As I grew up further I had over 10 surgeries on each of my legs in order to straighten my feet. I also have to self cathe for the rest of my life to be able to urinate. At 12 I had my second spinal surgery which was to take away dead tissue around my spine that was causing me pain. This was a success and since then I have not had another spine surgery since. I have had more leg surgeries and bladder surgeries to try and help me become more independent and live a fairly normal life. In the past few years I have gone through a rough patch where I had a knee replacement and then last year had to deal with a tubula and fibula severing. Three months ago I had another bladder surgery to replace an implant in me to help me with my issues. It was a painful process and I feel much better. The reason I have been looking for the forums was because I wanted to have a peer perspective on how they are doing with dealing with pain medication. I would like to be rid of them and just use nonnarcotic medication to help if I get too much pain to deal with on my own. My urologist prescribed me with Percocet. The dosage was 5/325 and then went to oxycodone 5mg. I really just don't want to feel alone in this struggle to get rid of them. My doctor knows of my plan to stop and supports me but did not really have much knowledge where a pain doctor would. I have been taking 2 a day and now none. I am feeling side effects that were mentioned by others that I have read on here. I guess I'm just here to reach out so I know I'm heard by others who share what I am going through.

Welcome to Spine-Health

One of the most important things that members can do is to provide the rest of the community with as much information about themselves as possible. It is so very difficult for anyone to respond when we do not have enough information to go on. This is not meant to indicate that you are doing anything wrong or violated any rule, we are just trying to be pro-active and get the information upfront so that people can start responding and your thread is more effective.

So many times we read about members who have different tests and they all come back negative. The more clues and information you provide, the better chances in finding out what is wrong, The fact that your test results are negative does not mean that you are fine and without any concerns. Many times it takes several diagnostic tests and procedures to isolate a specific condition.

Here are some questions that you should answer:

  • - When did this first start?

    . Year, Your age, etc
- Was it the result of an accident or trauma?
- Are there others in your family with similar medication conditions?
- What doctors have you seen? (Orthopedic, Neurosurgeon, Spine Specialist, etc)

  • . Which doctor did you start with? Ie Primary Care Physician
    . Who are you currently seeing?
- What Conservative treatments have you had? Which ones?

  • . Physical Therapy
    . Ultrasound / Tens unit
    . Spinal Injections
    . Acupuncture
    . Massage Therapy
- What diagnostic tests have you had? And their results (MRI, CTScan, XRay, EMG, etc)

  • . Summarize the results, please do not post all details, we cannot analyze them
    . How many different tests have you had over the years? Similar results?
- What medications are you currently using? (details, dosage, frequency, etc)

  • . Name of Medication
    . How long have you been using this?
    . Results
- Has surgery been discussed as an option? (If so, what kind)
- Is there any nerve pain/damage associated?
- What is your doctor’s action plan for treating you?

Providing answers to questions like this will give the member community here a better understanding
of your situation and make it easier to respond.

Please take a look at our forum rules: Forum Rules

I also strongly suggest that you take a look at our FAQ (Frequently Asked Questions) which can be found at the top of the forum menu tab or by going to FAQ There you will find much information that will

  • - Help you better utilize the Spine-Health system
    - Provide pointers on how to make your threads / posts
    - Tips on how to create your avatar (your picture), posting images, etc
    - General pieces of valuable information

Please remember that no one at Spine-Health is a formally trained medical professional.
Everything that is posted here is based on personal experiences and perhaps additional research.
As such, no member is permitted to provide

  • - Analysis or interpretation of any diagnostic test (ie MRI, CTscan, Xray, etc)
    - Medical advice of any kind
    - Recommendations in terms of Medications, Treatments, Exercises, etc

What could be good for someone could spell disaster for another.
You should also consult your doctor to better understand your condition and the do’s and don’t’s.

It is very important that new members (or even seasoned members) provide others with details about their condition(s). It is virtually impossible to help another member when all the details we have are

I’ve had this for years, it hurts, I cant move my shoulder – what could this be, what treatment should I get?

Diagnosing spinal problems can be very difficult. In many ways it’s like a game of clue. Especially, when the diagnostic tests come back negative – no trouble found! Then it’s up to the patient and the doctor to start digging deeper. The doctor is like a detective. They need clues to help them move along. So, you as the patient need to provide the doctor with all sorts of clues. That is like it is here. Without having information about a condition, its impossible for anyone here to try to help.

Specific comments :

Personal Opinion, not medical advice :

--- Ron DiLauro, Spine-Health System Moderator : 08/04/15 23:43est


  • It is an admirable goal to be narcotic free
    It not easy sometimes to detoxify,but you can do it
    Pain medication is a tool,
    A strong mind is a better tool!
    Were here to listen and support ya best we can
    Your not alone and you always have someone..ones here on Spine-Health who will understand
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • Thanks for saying that. I struggle with pain everyday but i am trying not take any medication. I was able to overcome the pain medication I was on when I first posted and now I am just trying to make things better for myself so that I can manage the pain in a different way
  • William GarzaWilliam Garza TexasPosts: 2,375
    edited 08/24/2015 - 2:27 PM
    Pain is inevitable
    Is optional.

    Your in for a up and down ride
    But a noble one.
    Meds are an important tool in your arsenal,i still take them here and there..but the clarity of mind unfettered by numbness is priceless to my state of mind when fighting pain.
    Working on the issues behind the pain,behind the subjective suffering is a important effort.
    The unity between mind ,body and spirit is utmost important in gaining your freedom...that is,freeing your mind from the chains of servitude to pain.

    I hope you win through this!
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • SavageSavage United StatesPosts: 5,427
    You might be interested in a post on this site called.. The Blend.
    It talks about different ways to..distract the pain.

    Just use search in upper right on page!
    Spine-Health Moderator
    Please read my medical history at: Medical History

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