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.
HOPE TBI 
The articles have been very helpful. Thanks HopeTBI. I wish there was a Spect scan in a city near where I live…Burlington, MA
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Ellen, Good to hear you are getting some helpful information. It seems like the closest Spect-CT near you is through Cerescan in New York at MRI of Orange, 505 Rt. 208, Suites 14 & 18, Monroe, NY 10950 https://cerescan.com/locations/
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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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Thanks Dawne. You are a great advocate also. We can never have too many helpers on the road to recovery.
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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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Hope TBI gives you just that…. hope! With a severe brain injury, I have been forced to count on those around me for support and places like Hope TBI did just that!
Thank you!
Murray
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Murray like the song says….you can count on me like 123 to be there….keep up surviving and thriving. Let HOPE be that beacon that guides you to your best self.
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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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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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Austin Robinson
“my mom made this.”
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Benjamin Robinson
“I love this site considering I’m the son of the one who created this blog.”
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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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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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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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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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