"it's the nature of the beast"

[Viva001]

I asked my NS's nurse today, why the symptoms wax & wane; she answered above.  Any theories?  Anyone, anyone?  Selma?
:)

[Viva001]

The good news is that brains do heal, given enough time.  My ex has TBI from a bicycle accident several years ago.  I saw him recently at our daughter's graduation, and i was amazed at how well he was doing.

[selmaS]

  That is the norm for most of us, we get thru the day most of the time or feel it late in the day. but almost  always feel it the rest of the week...yrs ago, it was more delayed for me, when I was younger and did not have my dx....as I got older I noticed the revenge started sooner,  as in a long day at work...I could go in  and not really need my cane...walk fine , but at the end of my day I hurt so bad and leaned on the cane to the point it hurt my wrist as well....

We r all diff in how this affects us...and some things r similar....and it seems to remain the same post op....as we heal we have to be just as careful not to over do it....or we pay for it....@ 3 yrs post op I find I can do things longer again, and the payback is delayed not so immediate as it had been....walking is getting better for me....it all depends on what I did hte day b4....if u know what I mean : )

[geebug]

Well, it's only a vague sort of predictability.  Not enough to really be helpful.

And I seem to have a delayed reaction to things to.  The last time I did a lot of lifting, I felt fine that day, but awful the rest of the week.  

[selmaS]

  Well, the way I understand it is the fix we want would be to correct the size of the skull that is the problem it is too small, they do make a bit more room to allow CSF to flow, but scar tissue can form slowing it back down, we can develop bulging disks that will also slow CSF flow...

And u can also have some perm nerve damage....some of the nerves may have been compressed too long to rebound....so some symptoms remain.

And then even more of us have related issues, such as tethered cord, or ICP, or ehlers-danlos...these combined add to how we feel post op.

  But many do feel better and surgery slows progression and that is a start...right?

[Viva001]

If I had predictability I could handle this condition!
Maybe.
Seems like there's always a delayed reaction for me.

Selma, I wonder why surgery doesn't "fix" it then.

[geebug]

I've noticed that my back and neck seem to bother me more as the day wears on.  I told my gf it's like my neck gets tired from having to hold my head up.  I bought myself one of those little travel pillows that sits around your neck last night, and it seems to help.  We'll see how well it works when my back is really acting up...

My activity level seems to affect things to.  If I overdo it on a good day, I'll feel it for day's afterward.  I always feel worse on rainy days too.

But aside from specific factors effecting things throughout the day, I've noticed my symptoms seem to cycle pretty consistently.  They're almost predictable.  Not sure why that is...

[selmaS]

  Many times it is head movement and or position bcuz of the way it shifts all that is inside and holding up the head....

I am trying to figure out how to show u in a more physical way, how this can happen, and if u can bear with me, I hope this makes sense.

take ur first 2 fingers and point them together, now take the thumb and pointer finger of ur other hand and circle them around the 2 so that the ring is at the first knuckle...keep the pointer finger of the 2 inside still, but move the longer one next to it, see how open spaces disappear and how the space inside gets tighter...this is what happens inside  our necks and this puts pressure on nerves....so as u move it changes how the pressure is applied.

[Viva001]

Have you detected what causes symptoms?  For me, all I can tell is head movement or position.

[selmaS]

  Hi..well the way I understand it it goes with the way our inflammation occurs, so it cycles....it can be due to diet or how active we are....

The more inflammation we have the more the symptoms affect us.

It is also dependent on if there is compression of the nerves, and some of us have bulging disks that will also affect this, and our activity will affect it as well....this is y I always as what u do on a daily basis when u mention new or increased symptoms (by u I mean the royal u)...lol..

Weather also has an affect on us, so it is outward  as well as in ward things that r in constant flux and change.....

Hope that makes sense.