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  • Drice
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    Post count: 2

    I have been suffering from lower back pain since 2007. It all started when I had pain in right hand and pains down my arm and began getting a raised bump around the C6-C7 area. It turned out to be a cyst. It was 4cm and it was right down to the fascia. That was taken out in 2014. Then it came back the next year, and this time it was 6cm. That was taken out in 2015. Also, after years and years of “no clue” visits to the doctor, I insisted that it was in my rectum. Finally, it was discovered I had a large arachnoid diverticulum, that had been missed for several years, because they never went down far enough on the MRIs. Apparently I have had this for decades. All the while, I lost my urinary abilities, I have pain in the groin, hip pain. The neurosurgeon, who is 80 years old went in originally to do a laminectomy and saw that this arachnoid diverticulum was pressing severely on my nerves I have had no pain care at all, just sent away with “Failed back surgery syndrome.} I insisted that, for the third time, I felt the C6-C7 on coming back. So I had a full series of MRIs on Feb 14, 2017. The findings say “there is a new enhancing mass and it’s already 1.6 x 3.5. It says this lesion does not have the typical appearance of a lipoma. The differential diagnosis would include a recurrent lesion that is higher grade or possibly an infection. I looked at it and it looks like a jellyfish with tenticals (this is the third time this one has came back and now it’s more advanced. ) Also I had a large arachnoid diverticulum, that had been missed for several years, because they never went down far enough on the MRIs. Apparently I have had this for decades. All the while, I lost my urinary abilities, I have pain in the groin, hip pain. The neurosurgeon, who is 80 years old went in originally to do a laminectomy, and saw that this arachnoid diverticulum was pressing severely on my nerves, and his statement says it has caused severe disabilities, but won’t actually say them.

    Now, the MRI I had two days ago, the first one post surgery of 2015, says “There is enhancing tissue within the sacral canal and posterior parasacral soft tissues in keeping with postoperative granulation tissue/fibrosis.

    I hurt so bad. I have been fighting for my SSDI, as I used to be a courtroom stenographer. After all of this misdiagnosis they made me out to be a drug seeker, when I haven’t had anything like that since 2012.

    I can see that I have arachnoiditis in my MRI when I compare it online, but they won’t say it!!! Also, they are giving me shots in my spine currently, which are not helping, and have put me on Suboxone. I am in such pain, and I cannot get a proper diagnosis or any comfort in life. I think the reason I cannot get a diagnosis of arachnoiditis is that they are all affiliated with one another.

    I have no idea what to do. I have been on the couch and a heating pad for four years now,. I have cysts everywhere in my body, including ganglion cysts on my hands. I have gained 40 pounds and live with the depression of it all. No one seems to be familiar enough with all of these different cysts and the affects of them; therefore my care has been lacking, to say the least.

    I forgot to mention, I also have one at the C3 level, which hasn’t even been addressed yet.

    The large one, the arachnoid diverticulum eroded my sacrum. The neurosurgeon just went ahead and operated on it while he was in doing a laminectomy, and I had no idea when I woke up why I was sliced all the way to my buttocks, and asked for an explanation. His first surgery ever for that type of thing.

    Right now I would just like to get a proper diagnosis and proper care. I cannot find a radiologist within my budget to read all three MRIs as a second opinion, cervical, lumbar and sacral. I really don’t understand why it’s so hard for them to give you something solid to go by.

    I guess my question in all of this is: Is there someplace for someone like me, who has been bedridden and is not rich, to get a second opinion on my MRIs so I may move forward in my life? Thank you.

    Donald Corenman, MD, DC
    Moderator
    Post count: 8656

    Arachnoiditis is unfortunately not curable. Treatment has to focus on management which includes medications, certain therapies, electrical stimulation and activity modification. I cannot comment on whether you do or do not have this disorder but if you have any questions, you can always ask a spine or neuroradiologist (for a fee) to review your films and give a separate opinion.

    Dr. Corenman

    PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
     
    Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.
    Drice
    Participant
    Post count: 2

    For a fee is the problem. By time you get four years on a heating pad and couch, you don’t have that kind of money, $200 per scan, to pay out. I am just in so much pain, and I cannot get anyone to understand it. They want to sell me a spinal cord stimulator. I’m almost 47, and I have reservations about something like that in my body. I cannot seem to get any pain control at all, and I haven’t been able to four almost four years now. The lack of education in this area, cysts…I’ve had 5 so far….is lacking. Every time I try to explain to the doctors, what is textbook Tarlov Cyst Disease, etc., they want no part of hearing it. I’ve been advocating for so long that I am at the stage of giving up. I swallow at least 15 Aleve a day. I know that sounds awful, but I have no other choice. I just wish I could find a doctor, like Dr. in California, that would take an interest in me. :) Thank you for responding.

    Donald Corenman, MD, DC
    Moderator
    Post count: 8656

    Chronic pain from nerve injury is difficult to treat. Tarlov cysts generally are painless but impressive looking on an MRI. Spinal cord stimulators can be helpful to certain patients. You might be focused on disorders that might not be the cause of your pain. Talk to a chronic pain doc.

    Dr. Corenman

    PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
     
    Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.
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