Two weeks to surgery and counting.

[MAC2917]

Any advice would be helpful.

[zygy2]

I am hoping they make gorilla glue for neurosurgery :) LOL    He does not know what to expect.  When I had the synthetic patch and he went in to repair he found multiple leaks, the synthetic patch is out and now I have my own tissue and hopefully it is just one leak this time!  I hope he can stitch or glue it and just get it closed.  He is going to check that this patch is not stuck to the cerebellum like the synthetic one!  I sure hope it works!!  Yeah, I hope we go the path of Diamox if needed rather than a shunt... I hate hate hate this thing!! Can't wait to have it out!!!  Thanks for the good wishes!!!

[Joalexa]

Good luck with your surgery!  How frustrating to keep having these leaks.  What is your NS going to do this time to make sure this is successful?  A different patch?  Sewing it on?  Superglue?  Trying some Diamox to reduce pressure while you heal?  In any case I am hoping the shunt is GONE forever.  Lots of good wishes coming your way!

[zygy2]

Good luck on your surgery, hopefully your first will be your last!!!  I wish I knew exactly why I have had problems.  I am thinking either unlucky or perhaps EDS, I have not been diagnosed with it as of yet but it is looking more like a possibility.  I started with a synthetic patch, it leaked so I had a repair surgery, had complications from that and had a third emergency surgery and then that patch leaked so this will be my 4th surgery and it is another repair surgery plus they are going to externalize my shunt and remove it if possible after the repair.  I get a minimum of five days in the hospital.  I got out of the 1st stay in 48 hours but I don't think most get out that quick.  I was lucky that I did not have any vomiting after surgery 1.  It seems to go very differently for everyone, it was a long recovery and not fun but I was happy to be home quick to recover in my own space!  ICU is so LIGHT and LOUD!!!!  Very strange to go home not being able to move your neck an inch!  Felt like someone put concrete in there!!!  Good luck to you!  -zygy

[Viva001]

By "dropping back" of the meds, I meant going off the schedule to prn.  Some days were such that I would have to go back on a schedule.  It's a learning curve (which keeps changing!).

I sincerely hope you are fine in 6 weeks & off the meds.  I still take an occasional Percoset--my NS gave me 100-- & ibuprofen more frequently.  

[MAC2917]

Also I do luckily have someone that is going to stay in the hospital with me to monitor the medications. Thank you though, I didn't realize how important it was until my mother in law told me.

[MAC2917]

What do you mean by dropping back? My NS said I should be fine in 6 weeks and I should be off the meds in 2.

[Viva001]

Big ditto on having someone oversee the meds!  I thought I understood it at the time, but was really out of it.   I dont even remember much of the hospital stay at all.   My DD had to decipher the meds for me, & set the timer.  Also the calendar, to stop the steroids.

Then it's weeks & weeks of dropping back, and--frankly-- months of experimentation w/drugs.  I looked at it like a mystery that needed to be solved.  :)

[MAC2917]

Dude, my body is doing the same thing. I have never had symptoms as bad as I have the last few days.

[MAC2917]

Thanks! I hope to have that all done to. Trying to get everything clean and some new books and movies to watch.

[MAC2917]

Thanks! I am confident with my decision because I have pretty severe syringomyelia as well so I kinda have to have surgery. But you are right that I just have to have confidence in my decision. I do find comfort in that.

[MAC2917]

Mine is on Oct. 9th! Though it is my first surgery. Why have you had so many?

[selmaS]

  Congratulations on having a surgery date scheduled....please post on our surgery date thread as to the actual date so we can post a prayer thread .  

We do have a list in the Health Pages- tips for the hospital stay....http://www.medhelp.org/health_pages/list?cid=186

Make sure someone is there to oversee ur meds in the beginning as u will be out of it and things can get messed up by all the diff staff at a hospital...

My biggest issue was I didn't want to pay for the TV and phone when I knew I was not going to use it, my DH used his cell to contact those that needed to be contacted and my DD did the same for me for those on here....that will save money....and I found it loud and I could not take too many sounds all at once...so once in a reg room the roommate had her TV going...all I wanted was quiet...so ear plugs r a must, wish I had some ,...lol...

  Please take a look at our list in the Heath pages as there r some good suggestions.

[tink_0427]

Like Viv, my surgery couldn't come quick enough. The last few weeks before surgery were miserable for me! I honestly think it was my bodies way of reassuring me that I was doing the right thing at the right time. My body was just like, forget this, I'm done fighting all these symptoms, bring on the surgery!!
My hospital stay was 48 hours and all I used of my stuff was my cell phone to send text messages and to call my oldest son because he is a worry wart like me and even though my husband called him as soon as surgery was done he wanted to talk to me! I also used my pillow but not til the next day after surgery (the first day I just didn't care about it and was worried that it might get yucky from my incision but it didnt) and also I brought my own socks with the grippies on the bottom because I HATE those stupid hospital socks they give u to wear!
That's all I used and then of course I had a change of clothes for going home in. I had a whole bag packed in the car but never used any of it. My NS told me 4-6 days in the hospital so I had numerous changes of clothes in case I had visitors and such, but I did extremely well and was out of there in 48 hours (my NS gave me the choice to stay another night or go home and I peaced out...I'm not comfortable in the hospital).
Hope this helps and u will be in my prayers!!

[Viva001]

I suppose a lot depends on your personality, and how you feel.
I was so sick that I was looking forward to surgery with hope, not anxiety.

I knew I wouldn't want anything in the hospital, so I focused on welcoming myself home.  I had books & movies ready.  I bought new pj's & made pillow cases.  I bought a new toy for my dog, so that she would leave me alone; that lasted 3 min.  (I wish I had boarded her, because I had to shut her out of my room, which wasnt good for either of us).

I had food in the freezer, although we ended up getting a lot of takeout.  (something about having it put in front of me helped me want to eat it).

Probably the most important thing is having your support in place.

[irislita]

Hi...the two last weeks before surgery are an emotional rollercoaster.its normal if u get anxiety and confused about ur decision.try to distray your mind.u have to have faith in ur ns and ur decision.vent and share with us.

[zygy2]

My surgery is in two weeks too!  (Oct. 8th).  This will be my 4th on my head so I am an old pro now :)  There are a bunch of links on here and we all seem to have different ideas of what to bring to the hospital.  My first surgery I don't think I used anything other than my chapstick and pillow, second surgery I was happy to have my cell phone, toothbrush, deodorant, and a notebook to remember what questions I wanted to ask!  Third surgery was emergency from complications and I ended up in there for 9 days and I had my own pillow, my own blanket, ipod for music, my own snacks!  Things were brought to me as I needed them because I had not been planning on this surgery but because the stay was longer I just was able to use more things!  This surgery I am booked to start with five days so once again I will bring more items.  Usually I have the one bag that I need the first night and I leave things I might want in  the car so my husband can bring them in if I want them!  After decompression I was just so sore that I did not do much of anything but I was able to go home in only 48 hours so it was pretty fast for me.  If I had been there longer I probably would have wanted more of my things!  Good luck with your surgery!  -zygy