Need basic advice (reassurance): is roller coaster to be expected?
 

Four months ago, my wife had a major accident, suffered a moderate-to-major TBI (right side, front to back) and almost died. Things were touch and go for a short period of time, and then she started making a remarkable recovery. Within a month, she was released for intensive rehab. She's 48, incredibly smart and healthy, and has been fortunate in all sorts of ways. For example, her memory is perfect (better than mine) and she tests off the charts for vocabulary. In the first few weeks, she gained strength in her left side and was walking comfortable for as much as a mile. For the last two months, however, things are a little diminished. She has more left side weakness today than she did when she left the hospital, and much less than the couple of weeks after she was released. Her executive functions have been affected and I think at this point they're about the same or perhaps worse. I've tried to talk to her neurosurgical team, a neuro-opthamologist (her left optic path is badly damaged), and her rehab doctors about this, and get little meaningful feedback. The first time I brought it up, we were told to get an emergency CT scan, which revealed nothing (it was "unchanged"). The rehab team worries about the apparent losses, which in turn makes me worry. My question is really a simple one: will there be losses, as well as gains? Will she occasionally have re-swelling of the brain until things settle down? Incidentally, the lead neurosurgeon has postponed replacement of her skull flap until late this year, which I believe implies things haven't settled down yet.

Roller coasters seem to be common here
 

Hey jpwilkins! Welcome to the board - I'm a relative newbie here myself and I know there are many others who will be able to provide more extensive information. I do want to let you know that your wife's ups and downs seem to be the norm for most folks that post here, me included. Not sure if the setback occurs as a result of one feeling better and being overly-ambitious about getting back to our old way of life but it seems a lot of us often "pay for it" later when we feel we're making progress.

I'll let the folsk with more experience address the specifics but I wanted to reach out and let you know this is a great source of information and I hope it will be helpful to you and your wife both!

Best,
Crystal

Information about new symptoms
 

Recovery from TBI is never a straight line. In your wife's case the uninjured left side of her brain (which is dominant for language and verbal memory) is showing superior performance with vocabulary and memory - consistent with her pre-injury status. This creates the false impression that the injured right side should be working just as well. The right side of the brain (which was highly traumatized) controls movement of the left side of the body as well as such things as spatial perception, emotion, non-verbal expression, and behavior. As you get farther to the back of the brain you reach the area of visual processing. As time goes by and your wife attempts to resume all of her normal activities she may well encounter seemingly new problems from her TBI which are simply being unmasked as she faces new challenges. It's very important for her to ongoing assistance from a neuropsychologist and from rehab people skilled with regard to right-sided brain injuries. I wish you and your wife the best of luck.

from bad to worse
 

After I posted my initial question, my wife went in for clavicle surgery (a break related to the initial accident). When I saw her in recovery, I took off her helmet and noticed that her brain was obviously swollen. The effects are dramatic and frightening. A woman who was walking nearly a mile within weeks of the initial accident now cannot walk. A little over a month out from the initial accident (three months ago), she wrote articulate and funny notes to her friends and colleagues; now she can no longer read and can only speak with difficulty. The surgery is the obvious precipitating factor, but the fact is that her trajectory has been steadily downward. I've gone over the CT scans with the neurosurgeons. The fluid in her brain has expanded the right ventricle significantly (thankfully, the skull flap is not on). Right now no one has a clue as to why this has happened and what will happen next. I learned the phrase "sub-acute therapy" for the first time and my heart sinks. I don't suppose anyone here can say what might be up, but if I'm wrong I'd love to hear. I'd love to hear anything encouraging--"this happened to me and three months later everything is on the upswing"--anything at all.

Hi there. I have experience as a Neurosurgery ICU nurse so mostly i deal with the patients that are immediately post op to about a month after depending on their symptoms. Occasionally we have patients come back months later with their further surgeries and flap placements. Have they discussed putting in a VP shunt? It would draw the extra CSF from her ventricles down into her stomach and help decrease the pressure in her brain. Obviously with the flap off, her brain has room to expand....but maybe there is too much fluid in her brain that is causing a change in her symptoms. They may need to do a Lumbar Puncture to get an idea what her intracranial pressure is and maybe drain some fluid temporaily to see if once her ICP drops and fluid has been drained off, she may regain some functions that have been on the decline. It is definetly a rollercoaster ride, that is for sure. But the important thing is, she survived a very horrible injury and has had improvements, so their is a good chance she will bounce back once again. If you feel like her neurosurgery team is not on top of her current downward spiral, it may be worth getting a second opinion. ANd yes, the flap needs to stay off for a while longer so that it is replaced once she is past all of these major ups and downs. Hope this helps.

Thanks so much. It's a good neuro team, and I'm grateful for that. There have been stitches dropped, but not so much that I've lost faith. I'm curious, though, what does getting a second opinion mean in a large health system? Does one seek a second opinion from another neurosurgeon in the same system or request one from someone in another system?