Reviews and Testimonials

This is where we get to hear how we are doing with this Site and what you think about your experience here.  Have you found something that has been helpful?  Has there been something meaningful you have gained or now understand by exploring this site?  Is there anything you would like to see discussed on the site that is not yet on here?  Is there something you would like to see more information on?  Do you have a favorite Blog post, page, or topic that is on here?  Are you signed up as an email follower to get new Blog posts or you enjoy reading all the newly submitted stories?

We would love your feedback as this helps us keep the site current, fresh, and focused on not only what we are learning and passionate about, but allows us to share in knowing what you are interested in learning about as well.

 Thanks for being an integral part in bringing awareness to Polytrauma and Brain Injury. Remember to share the link www.hopetbi.com everywhere.

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24 thoughts on “Reviews and Testimonials”

  1. Met a man post surgery that confessed he has had thoughts of suicide daily since his surgery. That confession sparked an interest in knowing the support or follow up for brain surgery patients.

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  2. I think I had the same Dr that moved out of state. Sounds exactly like him. I won’t use his name but initials….E. E. Ran into almost the same problems. It only took about 5 months to finally get my rib fixation surgery, he said workman’s comp doesn’t like to pay unless it has been 4-6 months since the accident. Wouldn’t listen when I told him the ribs were constantly moving and causing pain. From the time of the accident to the time of surgery was a total of 8 months. 5 months after was still in pain so he referred me to a pain specialist…..after nerve blocks, ablation, still no relief…..

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    • Robert,

      First of all I am truly sorry this was your experience. Having to deal with this type of an experience with lack of treatment or proper attention is life altering. Having a good advocate can often make the difference in those long wait times. The whole “squeaky wheel” theory. That being said, there is always a lot of red tape around insurance companies and even workman’s comp which sometimes is just out of the provider’s hands. Yet, the providers do often have the ability to err on the side of caution for the patient instead of catering to their allegiance to the companies who don’t want to provide exactly what they are supposed to be providing – payment.

      The doctor I had for my rib surgery had different initials than your “EE”. Negligence and causing harm are unacceptable though – regardless of initials and hopefully over time this dynamic will change in the patients favor.

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  3. I enjoy the site and the stories of the journey of the survivors. It is good to see people and family staying together after their BI.
    Seminars are good, Your site is good for information, help and leading to attain good information.
    Your are doing a good job in helping.
    My development is different for common people. So my thinking is different. I had no one to help me, The one I did have, I was taken away from. It is good that others has not went through what I went through.
    I was thinking , I have a difficult time understand what other understand easy, yet also I understand easy what other have a difficult time understanding.My development was in institutions, So no social development,
    Yet building and working with numbers, is common sense for me, I understand more then others. I have leaned , i have attachment disorder, So my social skills is next to none. I don’t like the drug they want to give me for reason, I reduce my ability to function.
    With all my different disabilities that elevated from my BI, The last thing I need is my mind to slow down. My Brian need to be clean and always thinking to keep control of all my thoughts. This is why I medicate with marijuana., for marijuana help my brain take a break, then when the side effect wear off. My brain can get back to common thinking to control my thoughts. These doctor don’t understand this. I have learned the worse thing a doctor can do, is attempt to slow my thought. This act causes more problems.
    I receive all the notice for new post and do read them.
    Have good day 🙂

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  4. I have wanted to help people for a long time with my experience, but have been made to think it was no big deal, and that I was just feeling sorry for myself. 
    I became an organ donor as soon as I got my drivers license. For many years after that, I struggled and really worked hard to make a good life for my kids and I. When they were grown, I decided to write a book about my experience . The first publisher I talked to about my experience, took it on. 
    When I asked people about their experience during the first year of my healing, I was told that I was just a bitch and that I was just feeling sorry for myself, and that any one can write a book.
    I could never get it published due to lack of money.
    But, when Caren first messaged me about the importance of getting my story out there, it was definitely a WOW moment. Caren made me feel like my story really was important.
    I can really help people with my experience before I die. 
    As I was telling Caren my story, she could actually put my feelings into words. She was so patient with me and all my edits. She took the time to understand me. She was able to put my feelings and my struggles into words.
    I can really help people before I die!!
    Thank you so much Caren!! You have made me so happy to tell my story!!!

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  5. I am so beyond grateful I got the opportunity to share my story and help other people going through something similar. The team behind Hope TBI is absolutely incredible and the support/resources they provide are extremely helpful!!

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  6. Caren’s beautiful Hope TBI site provides such a beautiful and supportive opportunity for those of us on the path to recovery from TBI to share our experience, hope, and support with others.
    Thank you for this site Caren! 🙏 Blessings to you! 💚💚💚

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  7. I am so glad to have been given the opportunity to share my story with this wonderful brain injury community at Hope TBI https://hopetbi.com/the-survivors/jj-hemmestad/ as I hope to inspire others to know that brain injury can leave a person be even better than before, and to have that self-assurance. I’ve had two novels published, and a third set to come out in August by publishers https://aelpress.com/ – something I would never have done without the depth and perseverance I’ve known via my brain injury. Thank you so much for allowing me to share my story!

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  9. HOPE TBI is the perfect name for such an informative site! Such great resources for anyone that is recovering from a brain injury. Keep up the great work Caren and thank you for everything that you continue to do! Dawne – Crash Support Network

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  10. Having hope is probably one of the biggest challenges to those of us whose lives were changed by TBI. On my own I couldn’t do it or see it at all, in my new normal, but through the help and support of a lot of good people and terrific programs/sites like HOPE TBI I’ve grown to accept things that I couldn’t before. I don’t feel alone but I feel the support and care in places like this and that allows for unexpected hope. Thanks very much for everything you do.

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    • We are honored to be able to help you feel not so alone Michael. We are pleased to continue to care and offer support in a multitude of ways….including of course…..a healthy does of HOPE.

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  12. Sherry:
    “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.”

    HOPE TBI
    May 23, 2019 at 3:13 am
    Sherry, you are so very valuable. What a testament to your character for still being there….even still. What an encapsulation 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 recovery 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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  13. Margie:
    “I had brain surgery
    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 often forget what I need to say. Often I get treated as if I have no intelligence by certain doctors.”

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  16. Rose:

    “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”

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  17. Dr Margaret Aranda:

    “Beautiful site, with wonderful feelings of compassion that emanate at each turn. Really glad to visit here, and I will refer others to swing by. It’s really nice, and congratulations on doing a fantastic job!”

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  18. Lisa Jones:

    “I am looking forward to have a look at all ur pages 🙂 i think its really good how u knew its mu son that had a brain injury:
    Lisajanejones1996@gmail.com”

    H.O.P.E TBI
    April 30, 2017 at 3:29 pm

    “I hope you are able to find something useful in these pages. Please let us know of any broken links or questions you may have. Thank you for visiting.”

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  19. Kath Czeladka:

    “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”

    H.O.P.E TBI
    July 5, 2016 at 1:06 pm

    “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”

    Dr Margaret Aranda
    May 14, 2017 at 9:03 am

    “Compelling story and Dylan, you are a star!”

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