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#264420 - 02/21/14 06:48 PM Could I have AS and DDD? Beginning journy for a dx
kjanzen Offline
First time visitor

Registered: 02/19/14
Posts: 1
Loc: Texas
Hello everyone!

I am new, and when I say new I mean neophyte new, to the road of AS. My story is a very strange one but deals with chronic pain with no cure as I am sure all have felt at one point. My story starts when I was 18 (2008). I began with unexplainable pain in my right leg just below my calf that wouldn't go away. For 6 months I dealt with this pain trying to stretch my leg, wrap it, ice it...you name it i tried it. The pain got to the point where it I couldn't even walk 50 ft and when sitting I couldn't even lift my legs to be 90 degrees to my torso. My parents thought I was just fibbing and told me to walk it off and continue doing what I was doing. Each day I would stretch before bed to loosen everything up yet in the morning I was so stiff and in pain I couldn't move.

Finally one morning I got out of bed and had a tremendous and painful pop occur in my back. Thinking nothing of it other than just your average back pop. How wrong I was. It turned out to be a complete rupture of my L5-S1 disc in my back that cut off all feeling below my waist the next day and tremendous pain in my back. I ended up having emergency surgery to repair the disc. It turns out I had DDD by my neurosurgeons description. For those who do not know what DDD is it is Degenerative Disc Disease and I have seen it shorthanded on other forums as such. Both my parents had it and I guess you could say I received the double dose.

For the next year I continued to have mild pain in my back that increased and then after I had another surgery for the disc above due to it bulging so profusely, in hopes it would rid me of the pain.

Weeellll, As you can guess by me writing on here the pain hasn't gotten any better. In fact it has become worse and has localized in very strange spots in very strange ways. The pain is located in a diamond shape from my SI joint, my tail bone and where my surgery was, Currently prescription pain medicines such as Norco and even mild NSAIDS have no effect on the pain and discomfort I have. Muscle relaxers do not help either. Even the 1800MG of Neurotin (nerve pain medicine) doesn't help.If I sit to long/sleep to long I am in more pain than I was before. Activity helps a little bit but the biggest problem I have it transitioning from standing to sitting. Something happens in that area that sends a jolt of pain right through me when i relax those muscles (think of in the way of a pelvic tilt). This pain has caused my recent pursuance into what is wrong. With my Neurosurgeon I am down to 2 option...both very scary: Try a neurostimmulator to block the pain or fuse 3 of my vertabrae.

I recently had a myelogram and had taken a picture of the cat scan to show my family and anyone who I was keeping updated on my back. Ironically I showed one of my co-workers the photo, who is also a doctor, and what he said shocked me. He told me he saw what looked like bone spurs on the vertebrae that I have had surgery, a classic sign in AS from what he told me. The other symptoms he listed also shocked me with how I could answer yes to the symptoms. I went home and did some research on the disease and came across its different appearances in the body that I hadn't experienced that had me want to pose this question to my fellow you people:

Can your AS be localized and can you have AS and DDD? I am currently waiting until next week to go and get some blood work done to see if the marker can be found! I had also found out my dad has had bad problems since he was younger so let's see what happens!

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#264428 - 02/22/14 10:09 AM Re: Could I have AS and DDD? Beginning journy for a dx [Re: kjanzen]
becca Offline
Registered Visitor

Registered: 02/26/11
Posts: 174
Loc: Ohio
kjanzen,

I really don't have any answers to your questions,you may get more feedback if you post this in the main forum. This thread doesn't get many posts (sadly).
But, anyway, i want to welcome you! So sorry to hear you are in so much pain. I can SO relate to your parents not believing you when you said you were in pain, no one believed me until i got dxed about 8 years after my pain started (loonnnggg story).

I hope you can find some answers and get a dx.
_________________________
i can't fall back i came too far, hold myself up and love my scars...

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#273040 - 01/10/16 06:11 AM Re: Could I have AS and DDD? Beginning journy for a dx [Re: kjanzen]
BlueRidge Offline
Registered Visitor

Registered: 11/16/15
Posts: 3
Loc: Virginia
kjanzen,

So sorry to learn of your pain and relate completely. I was dx'd in my 20s as well. My suggestion is that you continue searching for the appropriate dx because it is my personal belief (I've lived with this for 24 years) that AS and DDD can be concurrent. Disclaimer: I am not a doctor, just a person with AS and rods and screws in my lower back.

As to having fusion, please think very carefully about taking this step. I have had 3 failed (L4-S1) and L3 is now involved. Long and short, back surgery often does not improve pain and quite frequently increases it. Some pain management docs believe in neurostimulator, for me they were unsuccessful but each case is different and your team of doctors know what is best for you.

Pray you have the absolute best outcome and live life to the fullest with AS, it really is possible albeit challenging.

Best to you,

BlueRidge

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#273737 - 03/25/16 07:03 AM Re: Could I have AS and DDD? Beginning journy for a dx [Re: kjanzen]
Beyondpain Offline
Registered Visitor

Registered: 04/05/14
Posts: 3
I have been diagnosed with both. It's horrible and I hope you find a doctor to help you.

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