Update for Rahe

[deadmemory]

I just spoke to one of Rahe's friends just now. She is out of surgery and is in recovery. Everything went really well and she is expected to stay in the ICU for 2 nights and spend the rest of the week in the hospital. I will post more if Rahe or her friend calls again!

[selmaS]

  I wish with each of the members here that runs into this issue we all were closer to lend a hand...all I can do is send u ((hugs)) and prayers that u get the help and sleep u need.....

Sleep was an issue for me too, but I did not have children at home to care for....u do need help and my wish is u get some soon <3

[Rahe28]

HI ! I am just now seeing all of this. My medhelp family is so awesome and important to me. I remember when I was at the  hospital in the room where you dress in your gown and they start your IV and stuff....I handed my BFF a paper with Krystals number on it and said...... YOU can't forget to send her updates, she will be updating everyone in the forum. She promised that she would make it the 1st call, since every1 else was there or would be updated my ny DH or my dad. I slightly remember trying to get to the forum from my phone the night after surgery. You all have been so supportive to me and so amazing, and I also rknow what it feels like to sit and wait on an update when one of us goes in. Aftern being put back in the icu, and then having an emotional breakdown......at the hospital....then home again, alot of things I dont remember. One thing I do remember was thinking...boy do I just want to sleep.....and I couldnt ....and still can't . I get up at about 7 and dont lay down to sleep umtil at least 10pm. I cant take naps, because I can not lay down with the kids awake. My oldest son Logan has been with my dad for almost 2 weeks, and from my understanding has no plams of coming home anytime soon. With the hurricane stirring in the gulf, San has to tend to her home and property and I just spent 4 days at my good friends home. I have for the most part run out of help.Thank you all so much for everything.
Krystal ~ thanks so much for updating everyone for me. It was truely, and honestly such a sweet act of kindness. Oh, and I am so glad to read that you are finally getting the medical attention that you need.

~ I think of you all often, and you all are always in my prayers.

[jiggle93]

YAAAY for awesome hubbys and Daddys! You have been blessed with both! I'm sure either one would go to the end of the earth for you! San sounds like a God Send!  Thinking of you missing the little ones, I know its hard. Selmas idea of the web cam/skype might be beneficial. They'll be back in your arms soon enough, rest so you'll be strong enough to enjoy them when they finally home! Much love to ya'll!
Jiggle

[selmaS]

  Look to the meds u r on, some meds make us prone to stones...u may want to review them and possibly change ur meds to avoid this from happening again.

I do not drink coffee or gatoraid, never cared for either one...lol... I like tea and water, got to have water...lol...

Well I am glad things r coming around for u, as I have often said it just takes time.

[deadmemory]

Thanks <3
Yeah, I read that diet is key with diverticulitis. I do try to avoid seeds/nuts. I am not sure why its flairing up but come to think about it, I didn't have one today.. I have the bowels of a middle aged man LOL.

Thanks for being so supportive and always giving awesome pointers/advice! Now I just need to figure out how to stop getting these kidney stones.. :)
I don't drink anything but a cup of coffee in the morning.. then its water or gatorade all day. My MSK is most likely the culprit.
I also hope this arthritis/DDD gets figured out soon. But I am happy that things seem to be going the way they should :)

[selmaS]

  Hi, never apologize when u need time to recover...

Just take care of u  : )

Glad u r getting answers...and u got rid of that stone, they can be very painful.

As for the diverticulitis, diet , is very important...avoid poppyseeds and things like that that can get stuck in those little sacs....

Back in the 70's  SNL did a skit called the whiners.....they would go out to eat and ask for mac and cheese bcuz they had diverticulitis...it was a funny skit at the time, then both my GM and my DH'd GM both were in agony with it....so I am aware diet can play a big part with this, now my dad also was dx'd with it as well...

  SO nething that does not digest, like corn,seeds...should be avoided.

  I pray all works out so u can go to the concert <3

[deadmemory]

Hey Sheila,

Hope you're feeling a little better today.. Sorry I didn't text you back, I don't want to wake you just in case you're sleeping :)

I just wanted to say that everyone on this forum is amazing. It's so cool to see so many supportive, caring people. Although having Chiari is no fun, I just wanted everyone to know that I feel very blessed to be a part of this Chiari family. It feels good to know that if I need to vent or complain or whatever, my Chiari family is there for me. I am sorry I haven't been on Medhelp for so long to be supportive to the ones who need it, I am still figuring out all my medical stuff. Just found out that on top of the multilevel DDD in my C-spine, I have arthritis too (C-spine and lumbar) the good news just keeps on coming ;) I am also going to look into finding out if I have EDS. From what I understand, my right hip bone is tilted forward and its causing L1 and L2 to reverse. No wonder my back has been killing me..
Also, I passed my kidney stone.. my ureter is still swollen and inflamed but at least the stone is gone :)
I hope that my new specialists will help me. Especially pain management. I feel very blessed that my new doc even made those referrals. He seems concerned. I have been having diverticulosis flair ups lately too. I don't know what I should do about it. It is quite uncomfortable. I don't know if I am mistaken but I think I read that people with diverticulosis usually has EDS.. and Mel said that my hip/spine issue sounds suspicious as well.
Sorry so long. Just wanted to update everyone. I am well, and I think of my medhelp friends all the time. I hope you are all well. I will try to get on more to lend suport for the ones who've shown support to me.
I appreciate each and every one of you.

Ps. Jake said if I am feeling better then he is taking me to see my fav band, Slipknot play on July 3rd.. I told him that I was feeling better (LOL) it will be my anniversary present. Jade and Jester (my pup) are doing great too.. both are growing like weeds.
Love, Krystal
Xoxo

[selmaS]

  Hi...I know what u mean with being comfortable...I can not imagine how u feel about ur little ones not being there, as mine as grown and I welcomed the quiet post op...I was so sensitive to noise....I did enjoy seeing her at the hospital tho...but also knew it was impossible for her to be at my place...so, different places in being a mom....

But back to the comfort...try using pillows to sit on while in the recliner...soften it up...I had to make it softer and it worked better.

Once u r comfy, u can close ur eyes and imagine the little ones there with u, and that should help u sleep...do u have windows live or google plus? they r free and as long as u and the person at the location they r at has a comp with a camera u can chat with them....

U still need to rest to get better, so try the pillows, and sleep zzzzzzzzzz

[Rahe28]

Thanks to all of you. I am having  a hard time today. There is so much that I want to do....and cannot....and that really isn't what is getting me down, I REALLY REALLY miss my two little ones.. I have my oldest son here with me, and that  is wonderful....but I miss them so much.....I just want my babies home. This is the longest I have ever been away from them.
\Thank you all for sweet thoughts and prayers. I know this is a long road. I am trying to sleep alot, but I cannot get comfortable anwhere...my bed that is stacked up like a hospital bed. My recliner...couch....NOWHERE.....So, I am VERY tired.

[selmaS]

  WOW... u do indeed have a wonderful hubby....
a lovely testament to ur relationship.

I am glad they figured out a meds schedule for u that is working, and sleep is the best thing u can do right now, and sleep is part of the  healing process.

I could not be separated from my heating pad post op either...still love it, it does help relax those tight muscles that can cause pain.

Keeping u in my prayers : )

[DechenDolkar]

Thinking of you and hoping you can get your pain under control. I hope with everyday you feel better!

[Viva001]

I'm so glad to hear that you are recovering so well, and that your hospital experience was so positive!  I think your environment has a lot to do with recovery, wherever it is.  
I hope you continue to grow stronger & have less pain every day.
Vivian

[zygy2]

Hopefully the new meds help you!!!  It really takes a while to feel better.  That is wonderful that your family is helping so much!!  That makes things so much easier.  I had valium after my second surgery and it really helped, they said it was also part muscle relaxer and I found it helped with the neck pain with less side effects than pain meds.  Sorry about the panic attacks, they are really nasty.  I had one in the hospital from all the trauma and pain and stress and it was the worst one I ever had!  That one even had my hands locking up and freaked my husband out because I could not move my hands/arms/face.. it just spread like wildfire... I don't remember much other than waking up slowly later with lots of people around me, guess they pumped with lots of goodies to get my body to relax and stop freaking out.  I hope i NEVER do it to that extreme again.  Panic attacks just stink!  Hopefully your new meds keep the bad attacks away!  Heating pad is always nice but I also really liked ice at times,  it just seemed to take the pain away more, I would alternate with heat and ice depending on how it felt.  It is a long haul but it sounds like you are being very positive!! Good luck with recovery!

[Rahe28]

Hi alll, Well, My DH again went down to the  hospital and demanded that they give me valium and xanax. becuase the pain was throwing me into panic attacks...and they did give him what he asked for. I have such an amazing husband. San and my DH have come up with a specific medication regimen that seems to really be working . Today I slept ALL day. Finially...I was so tired. My amazing dad spent the first night in ICU with me and and he literallly held my hand all day and night. Anything and everything I needed he was there. I am truly blessed to have him as well. Everyone around  me has been such a blessing and a help. Thank you to all all of you for your support. I love my heating pad....it is my new best friend aside from my purple travel pillow that my hubby got for me <3

[selmaS]

  I also had valium as a muscle relaxer post op, but what helped me the most was to move my neck and to use heat 15 mins b4 and after...I was using it as much as I could to help loosen the muscles....

And get plenty of sleep.

[cash242]

Hey you! I have been sending you lots of prayers.  Hang in there and hope your pain gets better.  I also had several muscle relaxers but every dr is different.  Just really dont do anything at all and just take care of your new self am glad to here that you already feel better.  Rest up!

[Rahe28]

No. They told me to take Norflex which is what I took from before surgery...and they weren;t working then. THe only script I was given was lortab and percicet and a stool softner.    They had me on valium in the hospital. TY for prayers

[Rylanesmom]

Are you on muscle relaxers?  I was given Valium to take with my pain meds.  Hugs and prayers!

[Rahe28]

Hi everyone. Thanks to you all for being so king and sending so many prayers. While I was in the hospital by Friday afternoon they had me on a medicine regimen ahat actually really worked...and then around 8 Friday I was sent to a regular room, Apparently they did NOT get a copy if the new pain and meds schedule and layout....so I spent much of  Friday evening in a LOT of pain. Then Saturday I was feeling a tid bit better because Dr walsh came in and set everyine straight about the meds...and I started to feel much better. Though still in alot of pain. Apparently the tinsils were wrapped around the brainstem and reached all the way down to C1 and a little past so they had to unwrap them and cauterize the tonsils. He said that from a surgeons stand point  it was a classic chiari surger and that it lierally was beautiful once all finished. He suspevrs lots of improvenents. I was discharged   by one of his attending NS's on his team. He had mentionerd that he may send me hime; I would be fine at home if the pain were not so nad. He felt that I would do better being comfortable in my own home and that in turn would lead to faster healing. He said I was already so much stronger than anyone he has seen  before  Ay 6 am Friday morning I was getting up and to the rest room with little help. I am glad that I am doind well in that perspectivve... but the pain is just so bad. I am on Percocet and lortab now. They did leave me to tak emy morphine that I had at home. His assistant said that if I needed anythign ellse I would have to talk to Dr Walsh. Well, he will be back n office come Monday morning so I am going to call Deidra, his nurse first thing in the morning. All in all I have to say that I think I should probably be in the hospital but at hime is more somfortable...The staff at the hospital though....ALL of them ...were absolutely WONDERFUL !!!!! I mean absilutely truely wonderful . My nurse while in ICU was posiytively amazing !!! He did everything and then some to help me out of pain.  Jsut wanted to say though t that the hospital itself really was an amazing hospital experience. They all made me laugh and were all so antenative. My ears have stopped rining and my legs areb;t numb anymore. , I still have ALOT of neck pain and stiffnes and it just hurts really bad. Nothing has relieved it other than the dilaudud that they gabe me in the hospital....oh how I wish I had some. I just want to sleep for a little while. Thanks for all of your well wishes and prayers . Any reccomendations on what could possibly help the neck pain....or should I be on spmething stronger this early in post  op

[bagheesmom]

Oh My Gosh! This doesnt seem right to me at all! I havent had this surgery but stories like this worry me so much. I sure hope she can get her pain under control and she gets some rest! Shes in my thoughts!

[selmaS]

  OMG...u r kidding me...from ICU to home? That does not sound right!

Y did they send her home? Oh my....please keep us posted.

[deadmemory]

Just spoke with Sheila. She was discharged today.. So that means she was only in the hospital for 2 days. She was sent home with only Lortab.. Her pain is out of control, she is miserable and her husband is trying to get her different meds right now. She is up walking with the use of a cane, and she wanted me to update everyone. She is not feeling well at all. I suggested she go back because she said she is all swollen and her pain is not under control.. Also 2 days in the hospital after having brain surgery is ridiculous!!!

[selmaS]

  Krystal thanks for the updates on Sheila, and I am glad to hear she was able to eat today....


Still sending prayers for her and the pain to get under control....


And so glad u have an appointment coming up as well, we do not hear from u much ne more and I know u r not feeling well, so I am sending prayers to u and some healing MoJo to u as well.

[deadmemory]

Rahe says that her pain is still not really under control, and she is still in ICU. She had some breakfast this morning, which is good to hear. Her dressing comes off tomorrow. Will post more if I hear from her.
Take care Chiari family.

Ps. I know this post is for Rahe, but just wanted everyone to know that my new doc referred me to pain management, neurology and endocrinology. I will be able to make appts next week.

God bless you all