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The Big File All issues not easily categorized in the above forums are here. Comments on general health, diet, "getting comfortable," and more are here.


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  #1  
Old 09-05-2007, 08:47 AM
Lisibug Lisibug is offline
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I was going through some of my medical records for my upcoming SSD hearing week after next. I found an old blood test from 2005 which showed positive for the HLA B27 antigen marker. This antigen carries the strong possibility of the person having an autoimmune disease, particularly ankylosing spondylitis or Reiter's disease. I was reading about ankylosing spondylosis and I have a feeling that I have this. I've had low back pain since I was 13 (I'm now 46), and when the weather isn't hot, I am awakened every morning with strong pain in the hips that forces me to get out of bed and walk around or use a heating pad. This is apparently a very big symptom of AS. On MRI I have degenerative changes throughout my spine and have undergone two neck surgeries for this. I had particularly rapid degeneration after my fusion 3 years ago, necessitating 3 other levels to be surgically repaired within two years.

I will be looking into this with my doc. I do not know if my blood tests show any inflammation - this would also be an indication. The inflammation blood test for inflammation I read about in articles was not performed at the time of the blood test I had in hand. I know I've been tested for RA several times and do not have this. One point of interest (at least to me!) - AS is an autoimmune disease. I have obviously not yet been diagnosed with this - but I have previously been diagnosed with two other autoimmune diseases: fibromyalgia and sensory motor demyelinating polyneuropathy. I am grateful to be able to say that I have been seeing a chinese medical doc for years who has halted the progression and symptoms of both these diseases; however, I do have slight residual damage from the polyneuropathy when the disease hit with full force, but it is mild. Also interestingly, a couple of years ago I asked my chinese medical doc why my spine degenerates so fast and he said at the time that I had antibodies that would attack my ligaments and spinal structures. This seems to pretty much be what AS is. He diagnosed the polyneuropathy, not with a name, indicating that I had lesions on the actual nerves and that this was an autoimmune response. The attacks were very similar to MS attacks, but he said I had no lesions in my brain or on my spinal cord. I had two brain MRIs over several years which were both clear, but about 6 years after my attacks which the chinese medical doc had stopped, I had EMG/NCV which showed that I had just what the chinese medical doc had described. Pretty amazing. I haven't been to him in awhile, maybe I should keep going to keep this degeneration at bay!

I just thought I'd mention this, as it could possibly be an underlying cause for the degeneration in some of your spines/hips/knees/ shoulders. It particularly hits the large joints.
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Lisa
Back/neck pain with chiropractic treatment 3 x week in 1973 (age 13) for 1 year and pain since then due to falling off horses
headaches since age 17
Onset of severe fibromyalgia in 6/95, undiagnosed for 2 years while lived in UK
About 1998 o
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  #2  
Old 09-05-2007, 06:25 PM
Diane McKinley Diane McKinley is offline
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Hello Lisa,

I am so grateful that you posted this information. I was just told by my neurosurgeons assistant that with my cervical spinal stenosis and narrowing spinal canal I would not be a candidate for ADR and fusion at three or four levels is my only hope.

I am feeling a little more hopeful now.

Diane McKinley
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Old 09-11-2007, 08:47 AM
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Harrison Harrison is offline
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Lisa, thanks again for posting this information. I smile with satisfaction when I see patients obtaining their records and digging into the details...it's so important for so many reasons!

I know you saw this FAQ on AS, but for newbies, here it is (complete with the pronunciation key!):

What is ankylosing spondylitis?
http://adrsupport.org/eve/forums/a/t...1/m/9481000181

It’s interesting that gene testing/diagnostics is getting more attention. Yet, I hope that gene marking does not lead to really nasty changes in insurance coverage for patients!

If you see the latest post in the FAQ, some technical articles are starting to focus on the pathogenic causes for these ‘auto-immune” diseases. My hope is that the diagnostic testing improves where professionals across key disciplines (hematology, spine, rheumatology, etc.) can agree on the pathogenic causes of these insidious diseases that lead to spinal problems.

Oddly, AS and similar health conditions have been around for decades, and some of the research has been neglected (or for that matter, unfunded). This crusty 1998 article from the UK talks about the marker for AS that you found in your report (the writer is based in Mass.). It also mentions, in detail, similar conditions caused by other pathogens.

A question to the community – is this an important issue that is worthy of more research and analysis?
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File Type: pdf Septic_Arthritis.pdf (86.9 KB, 3 views)
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Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
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  #4  
Old 09-11-2007, 02:51 PM
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Harrison,

Although I am soon to be "fused", I will continue to search and learn about ADR and causes that contradict the discs as well as positive outcomes for ADR.

Why? Because based on statistics for fusions, I will need additional surgery at some point and ADR may be the next option for me further down the road.

It is very IMPORTANT that all of us understand and receive the informtion that isn't conveyed through the medical field. It is even more important to identify whether osteoperosis, arthitis, AS and other diseases expedite spine problems.

On a side note during my pre-op blood donation, I met a man who is having a total knee replacment. He is the same age as me (49).I asked how long he lived with his pain and he said for the last 5 years with meds. But two weeks ago,his kidneys shut down fromthe drugs!Just another bit of info for all of us pill poppers
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  #5  
Old 09-11-2007, 05:30 PM
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Harrison Harrison is offline
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Thanks Sue, for your post. You reminded me of something that I took for granted, but should spell out explicitly: many of the present (and hopefully future) contraindications for ADR could be (or should be) shared with fusion procedures.

I’ve shared some of these indications in other posts, but it is definitely worth repeating. A “sampling” of these contraindications is below (cervical, lumbar and different mfrs). It is meant to an instrument or as a guide for the patient that MUST consider the many criteria that may or may not be part of the qualification process. In other words, do your homework!

Sue, please keep us posted on your future surgery in another post, and good luck with your procedure….

CerviCore™ Intervertebral Disc Clinical Study
Exclusion criteria (key criteria):
1. Axial neck pain or referred shoulder pain alone (without radicular symptoms).
2. Radicular symptoms in the distribution of more than one cervical nerve root/disc.
3. Previous cervical surgery including: any discectomy, any anterior cervical fusion, or any posterior cervical fusion or instrumentation. (This is not intended to exclude a patient with a prior laminectomy/laminotomy at a level that is not the target or adjacent level.)
4. History of metabolic bone disease
5. Post-menopausal woman with a DEXA scan hip t-score of < -2.5.
6. Taking any of the following medications:
a. Chronic oral or IV corticosteroid therapy (this is not intended to exclude inhalation medications for asthma),
b. Medications known to potentially interfere with bone/soft tissue healing (e.g. methotrexate),
c. Medications which increase bone-mineral density (e.g. Fosamax®, Didronel®).
7. Diabetes mellitus requiring daily insulin management.
8. Has any of the following:
a. progressive neuromuscular disease;
b. rheumatoid arthritis;
c. active malignancy within the last 15 years (unless the malignancy was treated with curative intent and there have been no clinical signs or symptoms for at least 5 years);
d. active hepatitis;
e. AIDS, ARC, or is HIV positive;
f. cervical myelopathy at any cervical level. (This is not intended to exclude cervical myelopathy at the level to be treated due to a soft disc herniation within the past 12 months that can be decompressed by an anterior discectomy);
g. syringomyelia at any spinal level;
h. any condition that would interfere with patient self-assessment of pain, function or quality of life.
9. Pregnant or is considering pregnancy within the next 3 years (excluded due to x-ray requirements).

Kineflex™ Lumbar Artificial Disc Implant
Exclusion criteria overview
Patients who meet any of the following criteria are excluded from participating in this study:
1. Any back or leg pain of unknown origin;
2. Previous trauma to the study treatment level, resulting in compression or bursting;
3. Previous retroperitoneal surgery, or sufficient previous surgeries that would preclude using an anterior approach;
4. Other spinal surgery at affected level;
5. Previous thoracic or lumbar fusion;
6. Documented abnormal abdominal vessel or muscular/fascial pathology or morphology;
7. Degenerative spondylolisthesis with greater than 3 mm slippage at study level;
8. Isthmic (spondylolytic) spondylolisthesis at study level;
9. Spondylitis (i.e., inflammation of the spine) at study level;
10. Documented significant spinal, foraminal or lateral stenosis at study level;
11. Disc space height ≤ 3 mm at study level;
12. Documented presence of free nuclear fragment at study level;
13. Extensive facet arthritis or degeneration of the facets at any level noted on MRI, CT or X-ray;
14. Scoliosis of the lumbar spine with greater than 11° coronal deformity;
15. Metabolic bone disease;
16. Active systemic infection;
17. Active malignancy or history of metastatic malignancy;
18. Any terminal or autoimmune disease;
19. Any other disease, condition or surgery which might impair healing;
20. Recent history of chemical or alcohol dependence;
21. Current or extended use of any drug known to interfere with bone or soft tissue healing;
22. Known metal allergy;
23. Morbid obesity (BMI >40 or more than 100 pounds overweight);
24. Transitional vertebrae at level to be treated that has not clearly fused;
25. Pregnancy at time of enrollment, since this would contraindicate abdominal surgery.
______________________________________
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"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #6  
Old 09-12-2007, 09:41 AM
Don Don is offline
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Quote:
A question to the community – is this an important issue that is worthy of more research and analysis?
Harrison, and all,

I feel this is hugely important and one of the things about medicine I find so problematic. When we get sick, they try to quickly treat the symptoms, but very rarely do they actually treat the cause of the illness, unless it is an obvious infection or something similar. But when treating some illnesses, such as arthritis, they merely say "you have arthritis" and throw drugs at you. The people who treat you aren't the same group that work on the cure. It's amazing to me. We don't do that with our autos, or our houses, or anything else in life when we have a problem. I know that the human body is vastly complex, but they don't seem to be trying hard enough to get at the root problems.

I have reactive arthritis. But they have never told me what caused it, or do they try to cure it. They treat the symptoms. And, much of it is my fault for accepting it up until now. W

When I was about 28, I had my first arthritis flare up. I couldn't believe how terrible I felt. I went to several doctors telling them I felt terrible and all my joints hurt. They did a their exam and then told me "you have arthritis". I couldn't believe it. My wife still laughs because I told one of the doctors "I f&*king told you that when I came in your door. Arthritis means inflamed joints. Why do I have them and how do I get rid of it!" He couldn't answer me.

So, yes, hopefully they will finally research this better. At least our kids will benefit if they do.
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Don G.

3 level DDD L5-S1 through L3-L4.
"Compressed" L5-S1 in ~1992.
Herniation at L3-L4 and L4-L5
Fusion or ADR in near future
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