Adult Life after a Traumatic Brain Injury (TBI)

Hi. I just recently contacted mayo. I had to have part of my temporal lobe removed 11 years ago. I've been having worsing cognitive function since then and no one can figure out why it'd getting worse. Any advice about my appointment with mayo?

Left temporal lobe? It would be good to have a list for the mayo doctors on what cognitive functions are declining and how. Such as finding words or other left temporal lobe hits. How is your short compared to long-term memory recall, and any other changes that may or may not be related (balance, emotions, ...anything different). Any changes in your EEG or MRI compared to the past? Would cognitive therapy be useful for you? My moderate TBI was 33 years ago and it nailed by left temporal and basal frontal lobes; I haven't noticed any declines yet other than age associated (I'm 70), and some minor neuropathy.

Right temporal lobe. Both my short term and long term memory are gone. My long term is a little better though. I have problems with memory, speaking, cfs, balance basically everything cognitive and nerve related but there's no change is any test, blood work, anything. The problem is is that new symptoms keep arising and getting worse. I'm losing hope that anyone can help.

Hopefully Mayo can do more detailed investigation in case there is something other doctors missed (a common occurrence based on my experience) in your brain, hormone, autoimmune, or other tests.

I had a TBI and 8 hour brain surgery. Now I have memory problems, vision impaired and epilepsy. I can't see anything well enough to do anything fast. I have no depth perception. I carry my address and phone # in my purse because I can't remember it all. My family is all dead from cancer and my friends all moved out of this expensive shit-hole. When I applied for disability they denied me!! This is in Vancouver, Canada. I wrote them a scathing letter back explaining why I can't work. I had a good job. I wouldn't quit so I could lie around and do nothing! I am 57 years old today. They Federal government gives me $1200/month which pays my rent and the Provincial government gives me $300/month to buy food, cleaning products, pay bills and take the bus. It doesn't add up. I was homeless before but now I share an apt with a room-mate I hate. I live off my credit card until I can't make that bill payment. I just want to say to the Feds, Pierre Trudeau and the BC provincial government FK U! I hope you get old, lie around in dirty diapers and have bed sores. If you can't pay the enormous taxes that we pay here, the government literally wants you dead.

I feel this. I concentrate on what I can do, not what I can't.
I'm having success with Brahmari Breathing 10 minuteS per day. I do it first thing in the AM in bed. See Life Spa com and John Douillard in Boulder, CO

Wow, oh, wow! Dear(s) @dawnpereda & @beauregard & @kayabbott & @crawford & @gwen72 &Otherd,

All of us are probably different of brain problems of us are TBI people. Memory is a big problem - the past and . I lost the past memory from my family like in Christmas also lost when I was a manager plus at my city; how about playing music again or driving again; how about names in my mind and on.

How about physical problem like swimming again, but I did not control parts of my body like the right-side of my leg.

Well, thx folks,
Greg D.

Fortunately, I had only a MILD TBI, followed by symptoms of dysfunctional nervous system....now 9 years since the initial injury to my spine during a traumatic hip replacement surgery. Is this the appropriate support group?

Hi, @cd8 - hi, and welcome to Mayo Clinic Connect. This is indeed the correct group, the Traumatic Brain Injury support group in a discussion called "Adult Life after a Traumatic Brain Injury (TBI)."

You mentioned an initial injury to your spine during a traumatic hip replacement surgery and then symptoms of a dysfunctional nervous system. Will you tell a bit more about what types of symptoms these were?

In the hip replacement surgery recovery room (August 27, 2015), when I woke up,(groggy from the anesthesia) I was covered in sweat. My first night out of the hospital (in the "re-hab center), I woke up in TERROR at 3am, with severe PRESSURE in my head, dizziness, slight frontal headache, ringing in right ear [my nervous system was reacting to vibrations of the wall in my room from an oxygen concentrator up against the wall in the adjacent room=first symptoms of CENTRAL SENSITIZATION SYNDROME--hypersensitivity to most all sensory stimuli: sound, light, smell, temperature, motion/ vibration, touch/pain etc. As days progressed, I had neck pain/upper left jaw pain, difficulty concentrating. unable to focus on a task, (BRAINFOG) excessive sweating episodes, waking up in the middle of the night with "linked" severe pain in HEAD and "new hip", (not knowing what was triggering what). I had vision problems/blurred vision, had several falls, difficulty swallowing/choking, difficulty with abstract thinking (unable to continue with my garment design & implementation endeavors), unable to get restorative sleep, PTSD episodes---- most all this continues 9 years post-op!! With the post-op rehab process, I was so hypersensitive, physical therapy was NOT effective/too much hip pain. [Surgery team discounted my symptoms/refused MRI/refused to schedule my 12 month appt at 12 months post-op, & abruptly departed in February 2017/denying my symptoms] 2nd opinion orthopedic MD diagnosed "severely eroded gluteal tendon at the attachment point in March 2017 (but too much pain to proceed with PRP). 2nd opinion hip surgeon commented " trauma to the SPINE". TBI neurotherapist Phd [author of book: Understanding Mild traumatic brain injury] diagnosed MILD TRAUMATIC BRAIN INJURY April 2018, but retired shortly thereafter & not replaced. Neurologist diagnosed post-traumatic cervicogenic headache, basilar migraine in Feb 2018. Chronic centralized pain diagnosed Nov 2019. Behavioral optometrist diagnosed "Post-trauma vision syndrome" in Nov 2021. ENT MD diagnosed hyperacusis in April 2022 . [new PCP in Nov 2018, verified (in April 2023 "most all symptoms lead to "AUTONOMIC DYSFUNCTION/DYSAUTONOMIA"); 2d opinion neurologist diagnosed "Functional Disease of Central Nervous system", & PPPD (motion hypersensitivity) May 2023.