My Surgery updates

[leapyrtwins]

Marci -

see Laura's post on page 1.  It gives the site address, her last name, and the password you need to access Laura's "file".

Jan

[allegro17]

We're back in NY.  Everyting went very smoothly -- Skull Base Institute gives you four rides for your stay in LA.  The limo drivers are very nice, and very accustomed to transporting post op patients.  They are very reassuring and kind!   So they picked us up at the hotel and took us and all our baggage, which grew daily, to the airport.  Of course we had a wheelchair, but Laura did a good deal of walking today.   Also, she had 3 good meals across the continental US.   :-)    I think she is looking pretty well, and seems to be having longer wakeful periods  with more energy, but the dizziness and headaches and poor vision still persist.  We are not really worried, but impatient for them to lift, and I think that if it doesn't get much better tomorrow, we'll check back in with the doctor on Monday.   

We are all heading to sleep now, trying to get back to NY time.   Thanks again, and we will be in touch tomorrow. 

Rhona

[sgerrard]

I just went and checked, and the other Laura (Lauralynn) had surgery on the 14th, and her double vision cleared up the morning of April 27th, or 13 days later. So I'm sure Laura's will clear up one of these days too.

Being home will make a big difference. I would plan on lots of sleeping and napping, eating well, and gentle walking. In another week she will be feeling much better.

Best wishes.

Steve

[NancyMc]

Laura and Rhona,
My surgery was on a Wednesday.  I thought I would never drive again due to the double vision.  I couldn't tell which were the real trees.  The double vision vanished on Monday.  Have hope.
I'm sorry you are having to deal with headaches and dizziness.  Maybe all those steroids I was on kept them away.  But I paid in other ways . . . no sleep, bouncing off the walls, and driving my caregiver (as well as many on this forum) nuts.  I hope those symptoms vanish with the double vision.

our baggage, which grew daily

Did you do some shopping in LA?  Shoes?

Be well and enjoy the glorious spring in NY,
Nancy

[allegro17]

Hi everyone

I am sort of back in the land of the living.  I still feel really dizzy!  Its crazy, I guess i expected progress a lot faster than this.  Its 5 days post surgery and I feel like I should be home free! 
All in all things aren't too bad besdied the dizziness.  I have no facial issues which I amn so thankful for.  Still can't sit for very long a t a computer.  Sleeping is rough - how did you guys handle the whole 45 degree angle thing?  I havent figured it out yet.  My neck is still really stiff so i am gettting headaches - I am taking darvicet for it but thinking maybe this is making the dizziness worse, even though it does take the pain away!

Ok, thats all I can muster for now   Thanks for all of your thoughts!  What do I need to do with the scarf?  I would love to keep it, but I know there are many in need

Laura

[MAlegant]

Laura!!
Welcome back.  Please be patient with yourself (I know it's not easy).  Recovery has its own pace, and other than trying to eat right, sleep well (hah!) and get exercise, there's not much you can do to move it along.  5 days post-op is so early!   Finding a comfortable position to sleep was my biggest problem post-op and took a few weeks to resolve.  I even used a pregnancy pillow (surgery at 48  ) so that I wouldn't inadvertently turn onto my surgery side, which caused me to wake with horrible head pain.  I know folks on this site can tell you plenty about pillows!  Some have even slept on recliners.

Take care of yourself.
Marci

[Kate B]

Hi everyone

I am sort of back in the land of the living.  I still feel really dizzy!  Its crazy, I guess i expected progress a lot faster than this.  Its 5 days post surgery and I feel like I should be home free! .....
Laura

Hi Laura,
Welcome back to the land of the living!!!
 
Time will be the operative word here. You just had a major surgery and your body needs time to recuperate..  Think about progress as what you can do today that you couldn't do yesterday ( e.g...walk for longer spurts of time, sleep for "X" number of hours versus "y" number of hours, eat...etc.. eventually less dizziness should enter that list)

My dizziness came and went.  I remember thinking I was "past" dizzy about five or six weeks out and was getting my haircut only to stand up and veer right into the wall:-)  This was after just remarking to my stylist how good I felt---We laughed...

I agree, the sleeping part is hard particularly if you are used to sleeping in a position that is impossible after the surgery.  I remember thinking I can't wait to sleep on my right side again. 

All the best,
Kate

[leapyrtwins]

Hi, Laura    Glad to see you're home.

I can relate to your "I expected progress a lot faster than this" comment - I felt the same way post op.

Now you know why we always say patience is key.  As Marci and Kate said recovery takes time; your body has been through a lot.

From your mom's reports, and from yours, you sound like you're doing great.  A few months from now you'll be amazed how far you've come.

Keep the faith,

Jan

[NancyMc]

Hi, Laura.
From the AN treatments calendar it seems there is no hurry on the scarf.  Alicia and Carolyn are up next on the 19th and 20th.  So, when you get a chance, chose one and PM her to see if she'd like it as I did you and get her mailing address.  Better yet, wait until Lauralynn sends you the journal, fill in your page and then ship them together.  You could PM Lauralynn with your address so she can send the journal to you later this week.
As you saw, my only symptom has been facial, so I can't advise on any of your current symptoms.  I did not sleep for two weeks as a result of the steroids, so sleeping on an incline also was not an issue.   
Try to relax, be patient, treat the pains, eat well, and enjoy this time with your parents and friends.  You'll be back soon.
Nancy

[jerseygirl]

Laura,

I had major neck issues after the first surgery, and, knowing what tension headaches they can cause, I tried to keep the neck muscles loose after the second one. It can be done by massage (either by hand or a personal massager) and by turning your head from side to side a few times a day. Any muscle knots in the neck are best broken by massage. The reason you have neck problems is because your body tenses it in response to all the balance problems and dizziness as it tries to compensate. Just make sure you are sitting while you are turning your head, otherwise, you might fall. Also, if you use a massager, make sure you do not massage the scar. I guess you can ask Dr. Sh if you have any doubts.

Anyway, 5 days are still too early after surgery, so no marathons yet!
                                      Eve 

[Helga]

Happy to hear you are home and doing reasonably well. I can only imagine how you feel. After researching all the options, you finally choose the one that sounds least terrifying to you. Less invasive = quick recovery and less symptoms, right?, and now you are disappointed that it is too much like "traditional" surgery, after all. I guess there is just no easy way to remove an AN, have brain surgery one day and be back to your before-AN self in less than a week. Try to be amazed by all you have been able to do already! The massage ideas for the neck pain sounds promising, give it a try. Wishing you well, thinking of you all the time, glad we had a minute to chat at the brunch.
Helga

[MAlegant]

Oh yes, the neck!  You can try warm compresses--they really helped me.  I had one of those wrap around things that you heat in the microwave which I kept on quite a bit.  I also turned my head gently from side to side several times a day for many weeks.  I think that got me back to driving faster, as the doctor said I could drive as soon as I could turn my head.  I was motivated.
Marci

[Keri]

Hi Laura,
I'm glad you're home. I too think you're doing great for 5 days post op. It's really rough for a few days, can be for a few weeks, and off and on sometimes for a few months. I hope you are trying to take it easy as well as walking. I did get some awful headaches; seemed to be due to tension in my neck as well. I hope you can find relief soon - I do think you'll just keep improving. I don't want you to get discouraged. You did have major brain surgery! I still get fatigued and a bit tipsy at times and I'm 3 months post op now. I still really believe that running helps with this, although some people think I'm fatigued from running - it makes me feel better overall. You'll be there soon. I did my second post op half marathon yesterday. You'll be doing those in no time as well!
Take care,
Keri

[LisaP]

Hi Laura,


Best wishes on your recovery, think of you often, hope you get stronger eveyday.  You are in all of our thoughts and prayer, keep writing when you can.

LisaP

[texsooner]

Laura, I'm sure that you'll soon start to see the improvement you expected. Somebody already said it here, but you did have major(brain) surgery....it takes time to recover from this. Everybody's case is different. I really didn't like it when people told me to be patient....but you really have to be. Try to keep walking every day and before you know it, you'll be jogging and running again.

Keri, congrats on running another half.....you said that in passing like it was a walk in the park. I know it's not that easy. Good job.

Patrick