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Seeking diagnosis

edward12eedward12 Posts: 1
edited 12/07/2014 - 4:56 PM in Sacroiliac (SI) Joint Problems
I'm 34 years old, male. I've recently come to the conclusion that the neurological pain and dysfunction that I've been experiencing for the last several months are most likely the result of sacroiliac dysfunction. I have pain in various locations, but by far the most significant symptoms in my mind are penile numbness and erectile dysfunction, and Im shocked at the lack of empathy and urgency that my doctors are displaying. Rather than wait to see an actual neurosurgeon, I chose to see a nurse in neurosurgery, who ordered a sacral MRI which I had over the weekend. (My third MRI this year, of eight overall, given for various reasons.) I plan to call tomorrow and insist on seeing a doctor, having already opened the relationship through the nurse.

I am extremely distressed about what I've been experiencing, and about what my medical professionals (I struggle to maintain my sanity when referring to them as such) will suggest should the MRI show normal results, which I strongly suspect it will, based on what I've been reading about this condition.

I have been in pelvic floor physical therapy, as ordered by a urologist based on my symptoms. The Neuro-Nurse added to the prescription. I believe that the techniques that the PT used and the exercises and stretches that she suggested have made things worse.

I have a history of severe bone loss as a result of a vitamin d/calcium deficiency, and strongly believe this to be the factor in my degeneration. I'm not sure what I'm asking for exactly. I really need to know what my likely prognosis is, considering that my doctors are unlikely to do anything at all. I'm simply distraught about what this means for my future, and need someone to hear this. I'd like to be able to speak to someone on the phone or at least through PM, possibly an admin experienced in this, if that isn't asing too much. I don't know what my strategy needs to be at this point.


Welcome to Spine-Health

It would be very helpful if you could provide us with more details. Here are some questions that you
should answer:

  • - When did this first start?
    - Was it the result of an accident or trauma?
    - What doctors have you seen?
    - What Conservative treatments have you had? Which ones?
    - What diagnostic tests have you had? And their results
    - What medications are you currently using?
    - Has surgery been discussed as an option?
    - 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

Considering everything you wrote in your thread, I do not believe that the members on Spine-Health will
be able to help you.. I strongly suggest that you contact one of your doctors, who you can trust and tell them everything, and then go
from there.

--- Ron DiLauro, Spine-Health System Moderator : 12/07/13 22:54 /b]



  • EnglishGirlEEnglishGirl Posts: 1,825
    edited 12/13/2014 - 3:25 PM
    I'm so sorry. I know this can all be incredibly frustrating dealing with ALL the different aspects of spine pain & it's treatment. Ugh!!

    Diagnosing my SI was quite simple for me. They injected (with X-ray guidance) a numbing agent into my SI & it temporarily took the pain away. I have lots of damage & pains but the suspected SI pain vanished! They then put some steroids in but they didn't do much. We are going to follow-up with a scan because the specialist (Ortho) said I have an excessive amount of bone spurs around that whole area. You're right. If its your SI joint & standard lumbar MRI will not show that.

    Have you had previous diagnostics of your lumbar spine that didn't show any problems in that area? Do you have a lot of pain in your back, bum, hips or legs?

    I've seen board certified neuro spine surgeons & I think they're the best at diagnosing & recommending the best course of action. I hope things work out ok for you.
    Osteoarthritis & DDD.
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