Neurofatigue / brain injury

General
#1

http://www.braininjury-explanation.com/unseen-consequenses-of-brain-injury/neurofatigue

I thought this would be of help to the group to explain as to why we feel so different post-op. It's 4 years for me and I felt great the first 3 years but this last year I have very little energy, interests, etc. I also have depression for which is explainable due to personal issues that I have no control over. The "normal" people just don't understand nor accept the post-op issues we go through.

Anyway, this article is very easy to read & understand. The comparisons of a normal person verses the brain injured person is so informative.

BTW, are we considered a brain injury person even if the aneurysm is "repaired"? I've often wondered about that.

For myself, my neuro did tell me I have some brain damage and when I asked what it was I was told that the brain is to complicated to pinpoint the specific's.

#2

This website looks like a very good resources that explains things in a way patients can understand, Jeanne. Thank you for sharing.

#3

Jeanne...thank you... thank you...for this site...

Moltroub, here in 'discussions', set up the Resource Section w/brochure from the Rehab in Florida...

My research/additions, are more anatomically related...particularly, the Limbic System...

It has been 'almost' 12 years...and, I will address only my first 1.5...of coiling...

After the first procedures to discharge...I did think I was getting better...After the first f/u (my 11th Anniversary)...everything began downhill...8 months was the next and last angio f/u...and, it all went further downhill...from worsening vision, and down thru the GI system... all did exist from the first...but worsened recovery... The implanted stents were off-label/off-record...except billing and some images my tech was able to locate...all to a later date...now only time and changes...from diagnostics to f/u's...

Back to you / your article...do you have family/friends who will read it? Many of us do not...

BTW...(hey, I learned that on-line...initiated by you!!!) ...I have continued research for site data...and, it emotionally exhausts me...fatigue....even after 12 years...where recovery occurs...aging also advances...

One of interest (to me)... relates to Craniotomy.. (the external procedure...not the internal access...)

http://www.betterhealth.vic.gov/au/bharticles.nsf/pages/Craniotomy ...the 2nd/3rd page notes: Long-term outlook...and other connections...i.e. "acquired brain injury"...

Another: http://www.everywhereist.com/20-things-you-can-expect-after-brain-surgery

Well, from what you were told..."too complicated to pinpoint..."... makes me wonder if it was too complicated to get to the right spot...whether externally, thru the skull...or internal from the groin up?

And, on the internal, IF they will explain which artery was torn apart at what location...or just bill for the stents?

#4

My neuro saw the damage on my follow-up craniotomy following the clipping. By the way, my aneurysm was NOT ruptured and 7.5 mm. Post-op for a very long, abnormal amount of time I had excess fluid in the forehead area, compounded with 3 months of 24/7 severe bedridden migraine Just my opinion but I feel that is what caused any damage that there is.

No my little bit of family never took any time to pre or post read anything about aneurysms, nor ever asked any questions, even with my surgeon when he walked out of the operating room. The 2 family members never asked him 1 question even about aftercare. Absolutely no interest except the week of my craniotomy once I got home. Just a quick call to see if everything was going okay. Not everyone has loving, caring family members. I am happy for those that do. Support can make all the difference in the world when recovery is going on. I'm not referring to pampering, mostly taking the time to understand and have patience with the patient.

I will add that I have yet to hear of any studies done on patients post surgery with craniotomies or coiling, etc. If they did these studies or even read our concerns and complaints here then they could compile all the information and see how many of us go through the same post-op problems. If there are studies, then I am unaware of them. I have yet to hear from 1 researcher or my doctors as to my recovery.

Anyway, I found this article so informative and it helped me but its my family & friends that I would prefer to be a bit more patient with me. For example, fast talking people lose my attention fast cuz I can't keep up with the conversation as fast as I could pre-op. When this happens, my brain literally "scrambles" into one big mess. People tend to think I am not listening but in reality the conversation just got lost in my brain. I finally realized I just have to accept what is and do the best I can. Until someone walks in another's shoes no one understands. I am probably guilty of that with other people's issues too.

I am going to check out the links you posted tomorrow. Thank you for them. My day is over for today or I should say, my brain is done for the rest of the day to comprehend anything I am not familiar with. Thanks again and have a great evening. (<:

I would like to add that if not for this website I probably would be crazy. It is here that so many of my concerns and questions were answered. Along with that was the support given. Made me feel so good and felt more like family than what I do have. I have tried to return my experiences or help anyone I could too by what has helped me.

#5

I haven't been on this site for awhile and feel guilty, but I haven't felt well. My memory has gotten worse and my multi tasking is non-existent right now. My basilar tip annie was unruptured and I was coiled/stented successfully. I did have neuro psch tests in April and found out the results several weeks ago. I was diagnosed with neuro cognitive disorder that the Dr. stated he suspects is from the aneurysm and the surgery. He showed me a very fascinating photo of the electrical circuits in the brain that they have just recently discovered with new technology. I had told him that my neurosurgeon (not my original surgeon who moved 2 years after my surgery) told me that my memory and cognitive problems could not be from my annie because of the location and he told me that some of this new technology is showing otherwise. Anytime anything happens in our brains, the electrical circuits are affected.

You might see if your doctor will refer you for neuro-pschy tests. I am waiting for the letter detailing the results of mine and he also wants my GP to refer me for out patient rehab for cognitive therapy. Your complaint that people "see" us the "same" before our annies and surgery is one that most of us can relate to. You might also try medication for the depression - if you find the right one, it can make a real difference.

Thanks for the article, Jeanne. I look forward to reading it. Take care, Sherri

#6

I just wrote back a long reply to you Sherri and its not showing yet on here. I will check back in a bit. UGH!!! lol, I know I wrote it or is it my brain playing tricks on me.

#7

Not sure whats going on but I reposted a 2nd time and still not showing.