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Newbie here*** I'ts a bit complex

KansaskidKKansaskid Posts: 3
edited 11/05/2015 - 1:35 PM in New Member Introductions
Wow so glad I came across this site been reading for 2 hours and decided I might as well post and see where it leads me. Because as of today it feels like all roads lead to nowhere. Okay so I read the rules and I am going to try to give you all the info but like the section says this is getting even complex for myself. I am hoping that at least one of you have been through something like this and might know how to go about being an advocate for myself because life and the quality of it right now is zilch.

I am a 44 yr old male and was very healthy and active until Sept 10th 2012.
In Sept 2012 I was diagnosed with Thyroid cancer (actually they removed half of my thyroid and I had Mircocarcinoma just because the tumor was small in one. the papillary CarCinoma in the other two tumors they removed. they left the other half in and actually say they can watch it to make sure it won't spread> YES THIS PART IS FOR ANOTHER FORUM BUT THIS ALL LEADS UP TO MY SPINE SO PLEASE BARE WITH ME)..I have had one recurrence so far that was last year. everything was going along great until about May 2013 and this is where it all starts

May 2013 I started to getting some mild to medium pain in my neck. With in a few months it was some what severe. Then I started to get mild pain in about the T3 toT5 area of my back. At the time I was going through iodine RAD and that is what everyone thought it was attributed to. I didn't really think anything other wise wither as with chemo I was not very active at this time anyway. As I became better so did my activity level and with that pain increased as well and then it was put off as muscle getting back to normal as the pain was not to bad.

Now jump forward to March 2014
I picked up my niece who was 1 week old and in a car seat on a Coffey table so I was not even bent over very far. and the weight was around 14lbs. I then turned to my right and actually felt my spine pop. I immediately went to the ER were with my history and nature of the injury they did not do x rays and diagnosed me with multiple pulled muscles.
Over the next two months the pain in my pack increased to the point I could barely move and yet another trip to the ER. When we walked in the knew right away something was very wrong. they quickly got me in x ray and MRI and with in a few hours my world changed forever.
The Dr came back in the room with 3 other Dr's so I knew something was gravely wrong.
At this point I was diagnosed with Compression fractures in
T4 compressed 60%
T6 compressed 70%
T8 compressed 80%
T10 compressed 90%
they explained that Vertebroplasty would be my best route at this point at least to stabilize my spine at this point so I was knocked out with pain meds and the procedure was 6 am the next morning.
they did it and then they did another MRI at his point a few hours after the procedure I have this
T4 compressed 60%
T5 medium wedging
T6 compressed 70%
T7 compressed 50%
T8compressed 80%
T9 slight wedging
T10 Compressed 80%
and pain beyond belife

At this point of course everyone wants to know WHY and with the cancer already in the mix that is where all roads looked like they were leading.
For the next few days I was subjected to some of the most painful things I have ever gone through. I had needles poked into my spine in 32 places so they could take biopsy (all were Neg for cancer) I did more MRI CT Xrays and a handful of other things and last a bone density scan
at this point that seemed to be the issue as I am 44 and it came back about the age of an 82 year old man. Then due to the neck they did the same thing on the Cervical spine as well and this is what they came up with
Cervical spine is as listed

Cervical stenosis symptoms with myelopathy
Radiculopathy
Smooth well corticated ossicle posterior aspect the spinos process of C 6
Mild compression fracture of C 5
c2 bone spurs in the soft tissue
c3 bone spurs in the soft tissue
c5 bone spurs in the soft tissue

then in the report it was added that I have serve thoracic kybhois with medium left curvature.

So we are into June now with all the tests and everything and my pain was unbearable so they get me into pain management
I am put on meds pain pills and patches and limited anything as movement
I started steroid injections in June with the goal of RFA
I had to have injections from C1 to T12 as many of you know they can only do a few at a time so from June 2014 to
present day I went through 9 months of injections for steroids then the test pain blocks the RFA.
I got pain relief in my neck for just under 2 months and in my my T spine no relief at all.
So now for the what I need guidance with.
In July I called my Dr and said we need to come up with a new plain as the RFA did not work in my T spine at all and only about 2 months in my C spine .
My Dr had just got a new nurse who treated me like a new patient and made me an apt for after the first of the year in 2016.
I at this point called a patient relations person who got me in today to see my Dr 11/05/2015.
I explained that as of today
I have pain that is horrible
My legs are numb and I can sit in or barley drive a car anymore
My arms have very severe pain at times and are numb my right shoulder is to the point I can not lift my arm above mt head. Both my wrists fell like they are broken. I can barley button my own pants
I can not write anymore and I get this weird thing were I feel like I am walking side ways it's hard to explain...

He turns to me and says well we need to RFA again and lets see where we are after that. >>>>>>>>>>
I say I really so not want to do it due to the fact of going through 9 months of hell for two months of rellief and he says it's the only option I have at this point... and sets that up for after the first of the year and walks out of the room and leaves me with NO PAIN MEDS NO anything really just show up in two months...
Now my question is obviously I know after almost two years of dealing with what the issues that I have most likely mean and I also know that these issues need to dealt with now not later as what is lost is lost but if fixed maybe won't lose more... But I am locked in to one Dr in our city who will even touch my back due to ager and injury but he won't send me to see anyone else other than him...
How do I go about finding out how to be seen by maybe the spine surgeon or who ever can help me
If I go above his head mind he is my only salvation here in our city as i am now on state INS due to the fact I Have been unable to work with all this.
I feel defeated and kicked down after today but not giving up
I just don't know how or what to do....

******************************************************************************************************
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 :

As you read more threads here, you will find that there is really no one situation that is too complex. Everyone has their own condition that they are working with the medical field to determine the proper course of action.

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--- Ron DiLauro, Spine-Health System Moderator : 11/05/15 20:33est
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Jim
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Comments

  • jgb441jjgb441 Posts: 8
    edited 11/06/2015 - 8:21 AM
    I am in the same boat. I am barely able to walk. I had a laminectomy on L5/S1 10 years ago, a microdiscectomy on L4/L5 last October and as of this July, have had a nuerostimulator implant put in to try to control pain. The implant came from the suggestion of my orthopedic surgeon that did my last surgery, after doing another MRI in May because the surgery did not help. When the MRI results came back, I was told that I had 4 more herniated discs and needed a multi level fusion. After my surgeon talked to his partner, his tune changed to there's nothing wrong with me. How does it go from needing multi level fusion to nothing wrong? Any way, so I had the stimulator implant put in, and as of 2 months ago, did something to cause the worst pain I've ever had and almost no mobility! Of course, now that I have the Simulator put in, I can no longer have an MRI. I told my pain management doctor that I felt I at least needed a CT scan to check and see if the situation is getting worse. He told me no and shoved more pills down my throat. ( seems like he's working for the med companies instead of me ). He wouldn't even give me a referral to see another surgeon. Now I have decided to start back at square one and go to my primary care physician to get a referral. Point is, there is always an option. If you go to your primary care and ask for the referral to see a surgeon, they should give you one. As far as your guy being the only game in town, there's always someone else. Sometimes you might have to travel a bit to see someone, that's all. The surgeon I am going to see is an hour and a half away, but he comes highly recommended and it should be worth it! And if your current doctor doesn't understand that you would want another opinion without getting upset with you, then he's not worth being your doctor. Hang in there.
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