Traumatic Brain Injury: Come introduce yourself

Welcome to the Traumatic Brain Injury (TBI) group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who know first-hand about living with a traumatic brain injury. Together we can learn from each other and share stories about challenges and triumphs, setbacks and the things that help.

Pull up a chair and connect. Why not start by introducing yourself? What is your experience? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Traumatic Brain Injury (TBI) Support Group.

@mugglemary

Hello, everyone! I’m Mary in St. Paul. I’m a bit late getting here, so I promised Anne the last time I spoke to her I’d join up.
My injury happened on 11/28/18. I live in a condo building with townhomes to our south and apartments to our north. I regularly walk around this area for exercise, using the fire lane between the town homes and us. There are also paths from each building leading to the fire lane.
I had set out for a short walk, and was returning to my building via the fire lane when I suddenly was on the ground and didn’t know why. Turns out it was black ice. I couldn’t get up, so I lay there yelling help until one of my neighbors came by and helped me onto a nearby bench. I’m pretty fuzzy about things after the ambulance arrived.
They gave me the choice of go to the hospital or just go home. I opted to go home, because I know how expensive it is to get an ambulance ride. The next morning I was in so much pain that I called a friend to take me to the ER. I was immediately admitted because I had 2or 3 bleeds, I’d gotten a concussion, and the doctors were wondering where I got my 2 black eyes. Oh, and I’d broken two bones in my ear, which made all the health care professionals say “ You really fell, didn’t you.!” was admitted immediately and had xrays of my brain a couple of times a day. I was also on anticonvulsants and had these things on my legs that were rolling up and down.
I was in the hospital for 3 days, then transferred to a in-between old folks home. I got home about a week after my accident. I hadn’t been eating because I was so dizzy and nauseated. I didn’t get any sort of aftercare suggestions, and felt pretty lost when I got paperwork for MBI and went to a gathering there. They helped me get in touch with Mayo, and here I am.
I’m pretty angry that the hospital and transitionary places left me with no aftercare other than a couple of appointments for follow up.
I’m so glad I’m able to access the members and directors of the study! I’m getting PT and speech therapy plus I was getting acupuncture as well.
I forgot to mention that I was rear-ended pretty hard In February, and I was referred to a concussion doctor who made me realize that I needed to be getting other treatments.

I have no sense of smell, which makes me really sad. Taste is okay. And I discovered later that I’d broken my elbow as well.
I’m glad I’m here, and look forward to discussions with the group!

Jump to this post

Hi @mugglemary, welcome to the group. I, of course, have to ask, Are you a Harry Potter fan?
Your story of poor followup after a head injury is unfortunately not an isolated one. It sounds like you have taken charge and that you are now getting some rehabilitation help with PT, speech therapy and acupuncture. I'd like to invite you to share more about your experience with acupuncture in this discussion:
- Alternative Medicine https://connect.mayoclinic.org/discussion/alternative-medicine-1/

What other treatments have you been encourage to get from the concussion doctor? What TBI effect or effects are you finding the most challenging?

REPLY
@mugglemary

Hello, everyone! I’m Mary in St. Paul. I’m a bit late getting here, so I promised Anne the last time I spoke to her I’d join up.
My injury happened on 11/28/18. I live in a condo building with townhomes to our south and apartments to our north. I regularly walk around this area for exercise, using the fire lane between the town homes and us. There are also paths from each building leading to the fire lane.
I had set out for a short walk, and was returning to my building via the fire lane when I suddenly was on the ground and didn’t know why. Turns out it was black ice. I couldn’t get up, so I lay there yelling help until one of my neighbors came by and helped me onto a nearby bench. I’m pretty fuzzy about things after the ambulance arrived.
They gave me the choice of go to the hospital or just go home. I opted to go home, because I know how expensive it is to get an ambulance ride. The next morning I was in so much pain that I called a friend to take me to the ER. I was immediately admitted because I had 2or 3 bleeds, I’d gotten a concussion, and the doctors were wondering where I got my 2 black eyes. Oh, and I’d broken two bones in my ear, which made all the health care professionals say “ You really fell, didn’t you.!” was admitted immediately and had xrays of my brain a couple of times a day. I was also on anticonvulsants and had these things on my legs that were rolling up and down.
I was in the hospital for 3 days, then transferred to a in-between old folks home. I got home about a week after my accident. I hadn’t been eating because I was so dizzy and nauseated. I didn’t get any sort of aftercare suggestions, and felt pretty lost when I got paperwork for MBI and went to a gathering there. They helped me get in touch with Mayo, and here I am.
I’m pretty angry that the hospital and transitionary places left me with no aftercare other than a couple of appointments for follow up.
I’m so glad I’m able to access the members and directors of the study! I’m getting PT and speech therapy plus I was getting acupuncture as well.
I forgot to mention that I was rear-ended pretty hard In February, and I was referred to a concussion doctor who made me realize that I needed to be getting other treatments.

I have no sense of smell, which makes me really sad. Taste is okay. And I discovered later that I’d broken my elbow as well.
I’m glad I’m here, and look forward to discussions with the group!

Jump to this post

Hi Mary,
It's depressing the state of our health care system. There are many gifted and caring individuals but the overall system is messed up. I was just reading that a CT scan costs $140 in the Netherlands where it can cost $1000 here. I am fortunate to have fairly good health insurance through my employer. Still I get worried when I have a headache - "is my brain bleeding again, should I go and ask for another scan? Am I being a hypochondriac?" My experience was similar to yours in that I fell on ice and fractured my skull. I had some complications and a brain bleed over a month after my fall resulting in surgery to remove the hematoma.
I hope you will continue to improve and it's good to hear that you are getting connected with resources.
Best Regards,
Jim

REPLY
@icydecember

Hi Mary,
It's depressing the state of our health care system. There are many gifted and caring individuals but the overall system is messed up. I was just reading that a CT scan costs $140 in the Netherlands where it can cost $1000 here. I am fortunate to have fairly good health insurance through my employer. Still I get worried when I have a headache - "is my brain bleeding again, should I go and ask for another scan? Am I being a hypochondriac?" My experience was similar to yours in that I fell on ice and fractured my skull. I had some complications and a brain bleed over a month after my fall resulting in surgery to remove the hematoma.
I hope you will continue to improve and it's good to hear that you are getting connected with resources.
Best Regards,
Jim

Jump to this post

Hi, Jim. I've dealt with health cares' idiotic rules and regulations for many years. Like one year I discovered they wouldn't cover my depression meds because I had had 6 months worth and the next 6 months prices were up to me. I also had to fight vigorously to keep my private health care secret, because a company treasurer was going to open it and I insisted she not open it.
It's been one nightmare after another. Getting in this study has been such a blessing to me, to have access to information and treatments I need. My concussion doctor also recommended deep tissue massage, but that's not covered.

REPLY
@colleenyoung

Hi @mugglemary, welcome to the group. I, of course, have to ask, Are you a Harry Potter fan?
Your story of poor followup after a head injury is unfortunately not an isolated one. It sounds like you have taken charge and that you are now getting some rehabilitation help with PT, speech therapy and acupuncture. I'd like to invite you to share more about your experience with acupuncture in this discussion:
- Alternative Medicine https://connect.mayoclinic.org/discussion/alternative-medicine-1/

What other treatments have you been encourage to get from the concussion doctor? What TBI effect or effects are you finding the most challenging?

Jump to this post

I remember him saying that acupuncture, massage, PT, OT and Speech Therapy, and also said chiropractic care would help. I really tried to follow all his recommendations. My father was an MD, and had a very large problem with chiropractors. It's pretty common among physicians and their families.
Most challenging: No sense of smell. Walking like I'm drunk. Walking slowly. No short term memory so I forget why I went from one room to another, and also misplacing things. like my stapler, of which I have 2 regular, but are no where to be found. I try to relax and say it's no big deal, but I still get overly mad. I also forget what task I'm doing, and start another, and another, but I just say I'm not stressing over it, because I'm getting tasks done, eventually.

REPLY
@mugglemary

Hello, everyone! I’m Mary in St. Paul. I’m a bit late getting here, so I promised Anne the last time I spoke to her I’d join up.
My injury happened on 11/28/18. I live in a condo building with townhomes to our south and apartments to our north. I regularly walk around this area for exercise, using the fire lane between the town homes and us. There are also paths from each building leading to the fire lane.
I had set out for a short walk, and was returning to my building via the fire lane when I suddenly was on the ground and didn’t know why. Turns out it was black ice. I couldn’t get up, so I lay there yelling help until one of my neighbors came by and helped me onto a nearby bench. I’m pretty fuzzy about things after the ambulance arrived.
They gave me the choice of go to the hospital or just go home. I opted to go home, because I know how expensive it is to get an ambulance ride. The next morning I was in so much pain that I called a friend to take me to the ER. I was immediately admitted because I had 2or 3 bleeds, I’d gotten a concussion, and the doctors were wondering where I got my 2 black eyes. Oh, and I’d broken two bones in my ear, which made all the health care professionals say “ You really fell, didn’t you.!” was admitted immediately and had xrays of my brain a couple of times a day. I was also on anticonvulsants and had these things on my legs that were rolling up and down.
I was in the hospital for 3 days, then transferred to a in-between old folks home. I got home about a week after my accident. I hadn’t been eating because I was so dizzy and nauseated. I didn’t get any sort of aftercare suggestions, and felt pretty lost when I got paperwork for MBI and went to a gathering there. They helped me get in touch with Mayo, and here I am.
I’m pretty angry that the hospital and transitionary places left me with no aftercare other than a couple of appointments for follow up.
I’m so glad I’m able to access the members and directors of the study! I’m getting PT and speech therapy plus I was getting acupuncture as well.
I forgot to mention that I was rear-ended pretty hard In February, and I was referred to a concussion doctor who made me realize that I needed to be getting other treatments.

I have no sense of smell, which makes me really sad. Taste is okay. And I discovered later that I’d broken my elbow as well.
I’m glad I’m here, and look forward to discussions with the group!

Jump to this post

Welcome to the group Mary, It seems that Ice, cars and stairs are our worst enemies. I've also noticed how many of us have had a second incident after our TBI. Your fall happened just 18 days after my tree incident, so timewise we are close.
You must have hit hard to break bones in your ear. That's a new one for me. Didn't know it was possible.
Sorry you are having so much trouble getting good medical care. I would think the insurance of the person who rear ended you would be responsible too, but then you just have two insurance companies trying to push things off to the other.
I can't imagine what it is like not to be able to smell, Just a cup of coffee would not be the same. My sense of taste has changed, I can no longer drink my coffee black.
Like all of us, we are lucky to be alive, and as long as we are making progress, that is a positive thing. Celebrating our improvements, surrounding ourselves with caring and understanding people and being patient with ourselves and knowing and working with our current limitations are keys to making the most of our life with our new circumstances.
Keep you chin up, thing positive thoughts. We're all in this together.

REPLY

Hello Mary and welcome. I would like to echo Kevin's comment that we are lucky to be alive...and that is probably true for all of us. Every Doctor I went to said the same thing....so indeed I do feel lucky. That always inspires me when I am down, frustrated and my progress has slowed to a snails pace.. I also realized that a majority (if not all) of my stress was avoidable. It is one thing I can now control and the benefits are significant. Indeed...stay positive.

REPLY

Join me in welcoming Sarah @sseiker to the group.
Hi Sarah, glad you could make it. Click VIEW & REPLY and you can read through the past messages and get to know the other members of the group.

Pull up a chair and tell us a bit about yourself. How did you get your brain injury? How goes your recovery and how are you today?

REPLY

Hi Colleen , thank you for the nice introduction. Well to answer your question about how I got my traumatic brain injury was it was a year ago October 12th I was coming home from work and I was involved in a car accident. I was t bone and I thought I has a bit more time to pull out and I'm very thankful that I didn't pull out any sooner than I did. If I had I wouldn't be here today. So with the impact of the truck that hit mr my head went through the window on the drivers side. So I feel my recovery is going well and I'm to what I call my new normal. Just in the last month I have started getting headaches on the left side of my head. So now trying to figure out how to treat them and move on with my life.

REPLY
@sseiker

Hi Colleen , thank you for the nice introduction. Well to answer your question about how I got my traumatic brain injury was it was a year ago October 12th I was coming home from work and I was involved in a car accident. I was t bone and I thought I has a bit more time to pull out and I'm very thankful that I didn't pull out any sooner than I did. If I had I wouldn't be here today. So with the impact of the truck that hit mr my head went through the window on the drivers side. So I feel my recovery is going well and I'm to what I call my new normal. Just in the last month I have started getting headaches on the left side of my head. So now trying to figure out how to treat them and move on with my life.

Jump to this post

Hi @sseiker, I'm glad you found your way to the TBI group. Wow, that sounds like quite the accident.
Interesting that you're starting to get headaches at this time. What works for you to relieve them?

REPLY
@sseiker

Hi Colleen , thank you for the nice introduction. Well to answer your question about how I got my traumatic brain injury was it was a year ago October 12th I was coming home from work and I was involved in a car accident. I was t bone and I thought I has a bit more time to pull out and I'm very thankful that I didn't pull out any sooner than I did. If I had I wouldn't be here today. So with the impact of the truck that hit mr my head went through the window on the drivers side. So I feel my recovery is going well and I'm to what I call my new normal. Just in the last month I have started getting headaches on the left side of my head. So now trying to figure out how to treat them and move on with my life.

Jump to this post

Welcome Sarah. Good to hear your recovery is going well. My accident happen just a few of days after yours. My recovery is also going well but I think your comment about a "new normal" is right on and applies to us all. Accepting my limitations (hopefully just short term) has really lowered my stress level. Stay positive!

REPLY
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