So happy to be alive!

[steph9803]

Well God's given me another day...I'm on so many meds that I'm either wide awake or passed out. At the moment I'm on Morphine, Percocet, Decadrone, Keppra, Zofran, and I'm pretty sure there's something else. :P I tried uploading pics all day yesterday, but it's not letting me on this site. I'll try again later.

Dr said yesterday I should probably be out by Monday..so we'll see! I'm totally exhausted when I'm up.

I really thought I posted on here the other day, but can't find it so I guess I forget?

[rumpled]

Take care! I fell recently (and I flunked out of PT for balance... ack) so I get the whole weakness and balance issues thing...

I hope you can hang in there. We know it is hard but we are here for you. Sorry you are sad but understand.

[tiredbuthappy]

Thanks for updating... I was starting to wonder. I forgot about the Caringbridge, and may try to find you on FB.

Funny, I'm beginning to wonder if I may be having partial simple seizures as well. Not frequent, thank God, and only 3 "episodes" of whatever it is so far, but it is scary.

I spent the first few months with my butt on the couch, and just small shopping excursions. You are working your butt off (well, they are making you) so you are not getting the rest and recuperation i did. I realize it is critical you do all of those therapies now, but you have to to expect that that kind of work would slow the recovery of even a person who does not have complications.

At some point in time, when you feel you are ready, you may want to see a therapist if you aren't already. It seems to be helping me cope with everything.

[steph9803]

That brought a few tears to my eyes too...I wish there was a way that I could repay all of you for everything you've done for me. This would have been a million times harder if I had not had you girls to lean on. Things aren't going too great but it could always be worse.

I'm so sorry I haven't been on more. I try to update my FB and Caringbridge as much as possible if anyone wants those links let me know. Eric took the kids to the Dr. so I have some time to come on here and really focus to update. Pretty sure I'm having seizures now. So I'm trying to get in with a neurologist here.

I still have a Cognitive Deficit in addition to the weakness and balance issues. PT just came and evaluated me for insurance. 28 is the highest score and anything below 24 is a fall risk..I scored a 16 :(

I'm now on Zoloft which I think is starting to help with the sadness which started a couple of weeks ago. Miss chatting with you all..

<3,
Steph

[horselip]

Steph-
I think that it is great the you've got tbh here to help and compare notes with. But realize that your situation is your own. If you are in pain, please get relief. You are healing still. I had no idea how invasive the craniotomy would be. I am learning from you. How this has affected your whole being is something I had no idea would happen before your surgery..I am so so sorry that you are facing such a mountain to climb. I can't wait until you can just open your jaw more and walk on your own with more strength.You are a hero. You are so so brave.

My own situation was so different than yours because of the type of surgery that I had. When you get to your hormonal issues then you find that those of us that had the transphedoidal surgery will be able to help you more.

Sending you positive thoughts, hugs and even a few tears!
Horselip

[tiredbuthappy]

My jaw improved a lot between 3 and 4 months, and by 4 months I could open it normally again.  At 5 weeks my jaw was still very sore, and some days I couldn't even open 2 fingers wide.
Try to gently extend it open using your fingers several times a day. You can't do damage as long as you gently pry it open. Keep it up- in time it will help. Chewing gum also helps.

By 5 weeks I think I had pretty much weaned off of most meds- maybe an occasional percocet if I really over-did it. At that point, most of my pain was nerve pain (back behind incision) and I found OTC pains meds didn't do much for it. Sometimes I did try meds with some success. I was surprised to find tylenol worked better than motrin in many instances. Reclining and ice seemed to be the only thing that made a big difference. I still had the constant dull pain- i just dealt with it (and complained plenty). But, I also wasn't doing PT. I noticed most of my problems occurred when I did too much, and the PT may be doing that to you. Do you experience less pain on the weekends when you get a break?

Also, are you sleeping upright? Many people report having to sleep very propped up to get some relief. Some continue to sleep in a recliner, others put a wedge under their pillow or use lots of pillows to keep themselves at a big angle.

[steph9803]

It's been an okay week..some strange things have happened though so I'm going to have to break down and call NS Monday (promise :P). PT kicked my but this week! I'm so happy I don't have it again until Monday. I've been trying to make a list of things that have been going on so I can just call once.

I did want to ask if any of you were still on pain meds 5 weeks out? I am taking 3-4 percocet's a day..not sure if that's the norm or not though. I do have pain still so..I tried several time's to go overnight or most of the day without them but I end up having a hard time.

tbh- I remember you having said you had problems with your jaw..mine still won't open more than 2 fingers. My TMJ is locked the PT told me..but she can't work on it until my brain has healed more. How is yours doing?

Anyone else have problems with their jaw? I read that it might have to do with the anesthesia too.