T Is For Thoracic Disc Herniation Support Group #AtoZChallenge

t2017

Dear Readers,

In 2012 it was found that I had a thoracic disc herniation at T7/T8. I was told that the herniation was severe and without surgery ASAP I would become paralyzed from the waist down. That is a scary thing to hear. But you know what else was scary? Finding out that this is so rare that your Boston doctor has only done surgery on the thoracic area about 12 times in his 20 year career!  There are not that many people who have gone through thoracic disc surgery but I was lucky to have found Robin. This woman was a godsend! She had previously gone through the surgery and took the time to talk to me on the phone. She let me know what to expect and gave me some helpful advice. She even sent me a snail mail get well card. After my surgery I was lucky enough to find this Facebook community and the support is wonderful!

Today I am talking to the creator of the Facebook group, Thoracic Disc Herniation Support Group.

Please welcome Brad

Hi I am a 38 year old male, stay at home dad with a very small IT Business, married, with a 1 year old daughter, 4 year old Son, pet fish/snails, & Gary the female cat.

Thoracic disc issues started October 31, 2008
Surgery was October 20, 2010 utilizing the transpedicular approach at T7/T8 for a discetomy/laminectomy.

Cervical issues started April 2012
Surgery was June 2014 – fusion at C6/7

4 year battle with disability leading to chapter 7 bankruptcy & denial of LTD on a technicality & denial of social security due to age & education. I still suffer from chronic pain.

Besides that I enjoy helping others, boating (when not rough & I get invited), fishing, campfires, being outside, spending time with family. Hoping something turns around financially/pain wise ASAP!

Please tell the readers a little about the group.

Thoracic Disc Herniation Support Group (albeit a community Facebook page) is a social media worldwide resource. Thoracic is the medical terminology concerning ones midback/midspine. The page is used as a support group for questions, answers, and just venting about our condition (disc herniation of the thoracic spine). In the about section, I ask what has helped you, what has not helped you, and have you had surgery? I also included what I thought were useful links concerning thoracic disc herniation. We (I am just the creator and admin now) are now up to 241 likes with 235 followers. Most dialogue occurs between individuals from the U.K. and USA. Over the years individuals have posted Q&A’s, additional resources in the form of articles or videos, injection experiences, medication experiences, surgical experiences, even post operative photographs. The page photo is of me, post operation.

What inspired you to create this group?

October 31, 2008 I had excruciating mid-back pain and gastrointestinal pain. After many medical appointments, diagnostic examinations, it was determined I had thoracic disc herniation. I tried the full gamut of conservative treatment which eventually led to surgery on October 20, 2010. During the above period and after I discovered there wasn’t much information online concerning thoracic disc herniation. On June 11, 2011 I created a Facebook community page because I was not an organization, business, or brand and didn’t want to hassle with creating a group and determining if it should be open, closed, or secret; I just wanted to get information out ASAP!

What would you like this group to accomplish?

My goal has actually already been accomplished. I wanted to provide a resource to individuals battling this horrid pain I felt and provide a resource including my personal experience. This past year or so I have added multiple individuals as moderators (who have had surgery) to assist with OUR page. Recently, I thought about running an ad to collect donations to promote the site. We are a rare group, depending on the source only 2% of the world population has thoracic disc herniation or only 2% of the world that has thoracic disc herniation needs surgery. My pain was so intense prior to surgery I honestly wanted to die. Today, my pain is manageable. Many that have liked the page are now personal Facebook friends. Recently, I assisted an individual (now a page editor) via Facebook, texts, and phone calls with my experience which helped him through surgery. I knew after the aforementioned experience my work was complete, I truly helped another human being. My work is now OUR work.

Thank you Brad for taking the time to tell us about this much needed group. 

Click on the link to find this Facebook group – Thoracic Disc Herniation Support Group

*This blog post is part of the Blogging From A-to-Z Challenge (April 2017)

*The Internet is a useful tool for creating online support groups. Please lend a helping hand by sharing this blog post in the hopes it reaches someone who may benefit from this group.

*If you are interested in sharing your Facebook group with my readers please email me at pluckingofmyheartstrings@gmail.com

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*This blog post contains affiliate links.

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10 comments

  1. It is truly amazing how these support groups help Cheryl. I’ve got a lot of catching up to do on your posts which I will do – and glad to hear that you found Robin who helped you through your surgery.

    • I have always been an advocate for support groups. It sure calmed me a bit to talk to someone who had been through what I was about to go through. Thank you for your comment.

  2. I am absolutely impressed that there is a support group out there for back surgery. Back surgery, for me is scary as the first doctor I saw told me that my disc was so abnormal that it would cut my spinal cord. The doctor was looking simply to scare me into surgery, as my serious problem is in my lower back. Physical therapy has helped me… PHEW.

    The other doctors I saw said that surgery on my back would be extremely extensive as would be the recuperation. Then the #1 question would be whether I was in less pain before or after the surgery. Basically, I am inoperable because of the deformity of my discs. It is nice to hear that the surgery can be successful!

    • Some of my doctors (I see quite a few) were not happy about my having surgery. I sometimes wonder if I rushed into agreeing to surgery. But when you have been dealing with pain and other symptoms for over 10 years all you can think of is relief! The surgery was some what successful as he was able to get the disc from sticking into my spine. But he couldn’t completely fix the herniation as I had been under 2 hours more than I should have and they had to stop. None of my symptoms went away and now I have more. But I am not at risk for becoming paralyzed.

      • I notice that here AARP does NOT recommend back surgery, as typically one is worse afterward. I also wonder if your doctor was trying to scare you as my first doctor was. If you find the right physical therapist, they can work wonders with your back rather than doing surgery. I wish you luck without Pain!!

        • I sometimes wonder if the doctor only wanted that thoracic disc experience. I’ve never been so scared of an having an operation before (and I have had a few) I was told without it I would go paralyzed from the waist down and possibly could end up that way from the surgery. Not sure if I would ever have back surgery again…or should I say I won’t rush into it and find more information before making the decision. There are a lot of people that I have talked to that have said they were worse after….it’s tough!

    • From what I have been told many doctors don’t x-ray, MRI, ect the thoracic area because having herniated disc in that area is rare. I was told for years that my symptoms were Fibromyalsia. Makes me wonder if there are more people out there that have been misdiagnosed because doctors overlook the thoracic area.

  3. Can I just say that I love that he has a female cat named Gary? As for the group – so glad to read that this one helped you. And I can appreciate your nerves when you realized it wasn’t a common operation and your doctor hadn’t done that many. I had a learner doctor give me my second epidural. A needle that close to my spine held by someone who wasn’t super sure…. not my favourite memory. But she did great and was certainly ready to do it once she got going 🙂

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