Originally Posted by Mark in Idaho

Donna,

Wow, what a story. Sorry to hear about your struggles but glad to see you found this place. You will find many helpful people on this board. Your first TBI paragraph sounds a lot like me just you are a bit worse.

Can you help me with a few details? What was your first serious injury and the latter moderate injury?

#1--> on my 5th birthday, I fell off an upper floor fire landing outside a gym 3 stories head first onto solid concrete, directly impacting on the right frontal & temporal lobe, closed head injury with 3 inch skull fracture, diffuse axonal injury with sub and dural bleeding. I was unconscious until the next day. They only had xray back then and had no idea about the extent of injury other than external indications at the time. Bleeding was diffuse, my father said I was urecognizable, my had swelled to 3 times its normal weight. I had nerve shearing. I was in hospital for 3 weeks, then they sent me home with no medication, and told my parents I would need bedrest for 2 months. That isn't how it worked out. Instead, I had cranial hypertension and periods of sympathetic storming for another 8 months. I was not medicated for this; the doctors told my parents to just keep me in bed, don't let me sit up or have contact with anything that might excite me. No playing or talking to anyone or movement until I was almost 6 years old. I had serious behavior problems from the first year after
the accident--all impulse control and unable to understand & comply with social conventions, like I was always singing from a different hymn book. I thought everyone else was strange.

Physical coordination was a problem, and I was always having accidents, and immune system was pretty useless. I got everything really bad, and was sick a lot. Outwardly I looked like other children, and I was book smart, could read really well and write, but processing information would drag sometimes and other times it didn't but it wasn't as bad till I hit puberty.

#2-->Age 11 was 2nd injury, struck same side of my head by my dad (back-handed me), knocked me to the wall and fractured my jaw. Didn't go to the hospital for 2 weeks; mom was afraid my dad would get in trouble. But my jaw was worse and I couldn't eat and was having headaches and they took me for xrays and saw the fracture.

I first learned that I had abnormal eye pressure before I was grown, with no family history of glaucoma. I had glaucoma by my late 20's & 30's had my first glaucoma surgery. I'm going to have another one next year. They now believe that it was also caused by had injury.

#3--> Age 24 had 3rd injury, 2nd serious TBI: home invasion, was severely assaulted--all in the head & face--had concussion, in and out of conciousness, lot of bruising and swelling--same side of my head, but that's all I know about the injuries other than what I could see on the outside.

Lots of severe depression after that, untreated PTSD, had to leave college for years. Hormone changes affected me severely. Started developing strange joint pain, inflammation, swelling, frozen shoulder & arm, couldn't use my dominant hand, both knees had inflammation but labs were seronegative

#4--> Age 36: 4th TBI-rear-ended in car accident, whiplash, then began chronic pain, severe depression, couldn't sleep, couldn't move, eventually diagnosed with FMS, all the meds were making me sicker. Meanwhile I was trying to get through law school, and they took me off everything till after law school, then they started adding drugs.

39-49: hired after law school into good corporate job; was really good at my job, but medical problems piled up, many surgeries, much damage, worked mostly from home when I could to manage pain but I probably had amost 3 years worth of medical leave till the last one a year ago, when they laid me off.

Believe it or not, I had a very positive attitude, until the RA symptoms suddenly showed up (already had Raynaud's, secondary scleroderma, and additional inflammatory things that they haven't understood yet). I'm still seronegative, but xrays show characteristic erosion in early stages. Inflammation, swelling stiffness, and color & temp changes happening in shoulders to hands & hips to feet since the inflammation happened earlier this year in hands & feet.

For years my docs have said my body was strange, nothing has made sense and they have maybe been more frustrated than me, because when they try to treat me for things (meds, surgery, etc.), something always goes awry and left me with another permanent complication. I've got three serious impairments from surgical attempts to fix me now. Irreparable bleeding ulcer precludes NSAIDS, am taking prednisone which aggravates it & plaquenil. Can't take FMS meds--pardoxical reaction, same for joint pain or sleep aids.

I've had other tumbles, but these 4 were significant based on what followed. The drugs during surgeries really damaged me badly, and impaired my mental function and I was afraid that I wouldn't be able to recover it. I have recovered function, but not consistently, and I have more periods of fog and mental fatigue than before, although I rest better at night now. I have to take lots of rest periods, and am not able to exercise due to inflammatory response (until the last couple of years I was body building; now I can't hold a pot lid with one hand). Not exercising aggravates everything else, and I've had a lot of muscle wasting. Chronic eye inflammation, too.

Hormones: I had a total hysterectomy during one of the reconstructive surgeries in 2006, so went through surgical menopause. I took estrogen patches for a while after that but stopped.


I had a serious concussion at 10 YO, a few moderate concussions and many mild concussions since. My critical mass of brain dysfunction hit me at 46 after a mild concussion.

How is you vertebral health? Unresolved cervical and upper thoracic injuries can cause many of the symptoms to mention. Are you peri-menopausal, in menopause, or post menopause? Hormones can wreak havoc, especially during the mid life years.

Vertebral health: I've had one xray that showed degeneration in my neck and had severe symptoms for a long time, lots of chiropractor visits, periods that I couldn't turn my head but lately that has been overshadowed by the other stuff. Shoulder impingement is creeping up again, got cortizone shots again recently.

How are your nutritional habits? Do you take any supplements?

Digestive/diet: due to abdominal surgery complications, my stomach, small intestine and part of my colon were permanently damaged and are dysfunctional. I've gotten used to it now, but I have great difficulty with tolerating food since 2003, but I do best with very raw foods, not processed or fatty or sugary. I can't absorb a lot of nutrients well from food, but I take tons of supplements, get injections and prescriptions of iron, V it D, and have labs run at least every 3 months, which fluctuate but are currently good. I get sick easily so eating out is iffy. I have a poor appetite and have to make myself eat, but I haven't lost weight in a month.

What kind of environment do you live in? family? noisy? busy and chaotic household? air pollution/ respiratory allergies? food allergies?

Home environment: it is chaotic in terms of housekeeping. I was the main housekeeper, and can't do much now. Husband tries sometmes, but mostly lets things go. I have taken over the den so I can have quiet space and have things to do that are accessible, so that room works well for me for waking time. When others are making noise around me, I have some airport type headphones to block out noise so they don't have to tiptoe around me. My husband is really sweet and we're very close, but stressed with the situation, and his restless legs & snoring disturb my sleep so I sleep alone these days, but I have a clean and peaceful sleeping environment now. Money is a problem-I was the main breadwinner, and we've consumed our reserves. My doctors have urged me to apply for disability (again), and this time I finally applied. While I can find ways to cope wth the physical discomfort, this time I couldn't regain enough function to resume a career. I can't even handle a lot o daily living functions on my own now, I know it may sound odd to say, but I am really grateful for what I can do. I just don't want to lose more mental function if I can help it.

Do you react to over-stimulation? auditory, visual, tactile, olfactory (smell)

I have ADHD (always have) and was constanly in noise (which was miserable for me), but it helped me drown out the noise in my head until I got on meds last year, then my head stopped being so noisy inside, the I have kept things quiet ever since and really can't handle noisy places for long. I have a LOT of sensitivity to light, sound, smells, tastes, touch now. I have had central auditory processing dysfunction since the fall as a child--very hard to discriminate sounds, understand speech if there's any other noise. My mom thought for a long time I had hearing loss because I talk loud, too, but I was tested about 10 years ago, and they found out that my brain has a severe processing problem, but my ears work correctly.

Where do you live? Somebody may have a good local referral for you. It is very hard to find good medical help for mTBI?PCS, especially when you are high functioning.

I live in Durham, NC in central NC. I wish I knew a good neurologist to work with. The psychiatrist has a background in treating people with brain damage, and she wants me to have some good studies done, with the chronic pain and other stuff, she wants to get someone to map out my current state, and have a baseline for tracking deterioration. I'd really like to understand as much asI can about risk factors, what can be predicted based on what they already know, and if there are safe meds of any kind that might help me at least with the autonomic dysfunction so my SNS can get a break. I have gotten really good at managing emotional stress, and even mental exercises for managing pain perception and limiting stress responses to it, but I think I could use some medical help with quieting SNS and activating PSNS better.

Are your doctors following any specific published methodology? i.e. Dr Amen, Dr Eric Braverman, etc.

Not to my knowledge. If you have some references, I would love to plug into it.

Have you had a neuro-psychological assessment? What are you memory and cognitive impairments?

It's been a long time since it was measured, certainly not since my 20s. I'd like to know what they look like now.

Any other neuro-rehab you've undergone?

No, unless you count having a big tens unit for my neck and spine. I would like to know more about what kinds of rehab they do these days?

Lots of questions to answer. Take you time. It has taken you fifty years to get to where yo are today. It will take even more time to find directions for you to take.

btw, I am dad to three grown kids with three grandkids. Some people say insanity is hereditary. We get it from our kids.

My best to you.