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This site is here to help take the struggle out of finding resources and information when someone is faced with a Trauma from a Polytrauma or Brain Injury, and the resulting conditions from those injuries (acute or chronic pain, symptoms, experiences, processes, etc) and various treatment options available.

Whether the result of that Trauma is from a Traumatic Brain Injury (TBI) such as a Sports Concussion, a Wreck (vehicle accident), Blunt Trauma from a Violent Act, Veteran from one of our Armed Forces with a blast injury, a multi-system trauma, medical procedure, or an Acquired Brain Injury (ABI) – like a shunt, medical event (like a stroke, surgery, aneurysm, tumor, seizure, etc)….or something not so seemingly simple/harmless as a slip and fall.

No matter who you are, if you are looking to have a better understanding – then this site is for you.

The most important thing you can do is advocate for yourself or others. You know your body better than anyone and that knowledge will enable you to get what you need. You have to be vocal and relentless. Sometimes you have to be a voice for the voiceless. We may have an invisible disability. That means the burden is on us to educate those around us – including the medical establishment – in order to have our needs addressed. And yeah, sometimes that sucks. However, you are not alone in this endeavor. Be brave, be bold, be proactive.

If you can find just one thing here in these pages that you did not know or might be useful, then here at HOPE TBI, our efforts will have been worth everything and made this all worthwhile.  So come on in, explore each tab, link, and written experience.       You are welcome here.

Introduction to HOPE TBI

Help One Person Excel – To Be Independent

13 thoughts on “

  1. A compelling story! Especially since you and my husband have so much in common. He is a former paramedic and was in a motorcycle accident in 2005. Fractured ribs, collapsed lung, probably a TBI, and a shattered scapula (4 pieces). Back then, the protocol was to immobilize the shoulder and a wait and see on the scapula healing properly. Well, it didn’t. There are different medical opinions on whether all the fragments joined but all agree there is deformity in the scapular body. Over the years since, we have consulted many times with different doctors and tried everything under the sun to stop the pain, nerve blocks, etc. Even the orthopedic surgeon at Vanderbilt who had worked with Dr. Cole didn’t want to attempt an ORIF as late as 2015 due to his concern about further loss of mobility. At this point, my husband just wants the pain to stop. He is on chronic pain medication (opioids) which is a whole another horror story nowadays. Our family doctor for 8 years was just shut down by the DEA so we have started back up with the VA in hopes of first, mitigating the pain and second, to see if they are willing to take the risk of surgery. The wheel is being reinvented once more. And thank you for your wonderful words about your husband. Being the caregiver myself, it has been tough, especially at my age (67). It’s all been so frustrating, stressful, maddening and downright horrible over the past 14 years.

    Liked by 1 person

    • Sherry, you are so very valuable. What a testament to your character for still being there….even still. What an encampsulation of devotion and immense sacrifice you have given as a caregiver and as his wife I guarantee he is thankful…even if he does not recognize it beyond the pain most times. You must also care for yourself as well though…remember that!

      It sounds like your husband is a walking miracle. You are a miracle too for finding the wherewithall to stick out his recovery with him.

      The dynamics of scientific breakthroughs…..every day Sherry…is enough to give me HOPE in the rrcovery and treatment options for anyone suffering chronic pain, or polytrauma like your husband.

      Dr. Peter Cole at Regions Hospital in Minnesota would be worth talking to if I may be so bold. He will be candid and honest about whether he feels he can do anything to help. He specializes in complex fractures and delayed treatment fractures. He is an artist in the operating room. I went to numerous well educated thoracic, orthopedic, and trauma surgeons who all told me nothing could be done and I would just have to live with the pain and limitations. . I kept hearing it couldn’t be fixed fir me (my scapula). Dr. Cole defied the impossibility thinking and made it possible. Even still, he is astounded at my level of recovery, and I remain grateful and attribute my reduction in pain from that injury….to him. His whole team Sherry is worth meeting.. If nothing else a simple phone consultation with Dr. Cole can let you know what possibilities may exist….even all these years later.

      Working with the VA can be hit or miss. Hopefully you are able to acquire a patient advocate for him there if necessary. I have lived through positive and negative experiences with the VA. You guys are your own best advocates.

      I was employed in EMS as well for a number of years. I have taught BLS and ACLS, proctored EMS classes, and have a deep passion for medicine still. However, am not able to do what I used to do all those years ago. My body just won’t let me.

      Thank you for reaching out….

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  2. I had brain sugery
    Now I battle with memory loss and anxiety. When experiencing any stress I cannot remember what I know.
    I also have a auto immune problem. Find I reacts to certain foods and other things.
    It is tuff to advocates for myself as I offten forget what I need to say. Offten I get treated as if I have no intelligence by certan doctors.

    Liked by 1 person

  3. My husband contracted Bacterial Meningitis. He is left with a NEUROLOGIC BLADDER CONDITION. presently Self Catheterizing. Hope to attend support group with his similar condition. We are also looking for solutions to reverse the self cath which is bothering his life quality for himself & our family. Hope to hear from you. Oh we live in West Covina, ca 91790 USA

    Liked by 1 person

    • Rose, Thanks for taking the time to visit HOPE TBI and share your medical journey regarding your husband. Finding alternative solutions can be daunting and sometimes feel overwhelming. It sounds like you care for your husband a great deal and are making every effort to help him continue making strides to developing a quality of life that brings support and solutions. I am glad to share any information I have come across.

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  4. Would you be interested in my sons story? He sustained a TBI 19/4/15 when a vehicle he was a passenger in was hit by a drunk driver. His scull was decompressed 25 mm the area the side of your open hand and his whole brain moved 3.5mm to the left side. He has started a blog called life less limits. Please have a look and if you think it would be suitable contact him on Facebook. Dylan czeladka he is 23 years old

    Liked by 1 person

    • Kath….thank you for checking out our website. To answer your question, we would be honored to share your son’s story. We welcome all brain injury stories….even yours…. as his mom and how this has affected you on a parent level. Your story may help other parents who have a child (regardless of their childs age). Please consider submitting yours as well. Thank you for reaching out. Never give up HOPE

      Like

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