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620923 tn?1452919248
LIST YOUR SURGERY DATE - PART 2
Hi all,

As you are scheduled for surgery please add it to this thread so we know when it is.Please also have a contact person update us on ur progress until u r up to rejoining us.
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Avatar universal
October the 18th
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620923 tn?1452919248

  Good luck and I hope u have someone able to post updates on ur progress!!
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620923 tn?1452919248

  Please list an upcoming surgery on this thread so we can post a prayer thread for u...and have someone post updates on ur progress : )
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Hi folks! Met with Dr.Oro and found that they have a GREAT group. Everyone of their team was very understanding and knowledgeable. Docs from my state could learn a lot by going to Colo. and hanging out for a while....Found I had blockage issues. They were very thorough! Only fix is the surgery so we scheduled it in late Nov.  I wanted to be in charge of it instead of it grabbing me at the wrong time. A little nervous but I know that I will be in great hands. Hopefully this will not only take me out of the danger zone but it will also get rid of these stinkin' headaches, memory problems and balance issues ect.... I will let you know how it goes. Thanks for all of the info.
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620923 tn?1452919248

  So happy for u that u found a Dr that is right for u and a course of action that is right for u as well.

Please post ur surgery date when u have it so we can keep u in our thoughts and prayers.

Godspeed

   "selma"
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1823499 tn?1370093889
What tests did dr do to find the blockage?
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decompression at johns hopkins on december 13th!
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620923 tn?1452919248

  Know that we will keep u in our thoughts and prayers...and ask that u have someone post updates on ur progress : )


   Good luck

    "selma"
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1724911 tn?1323371940
May I ask who will be doing ur surgery at Johns Hpokins?  I am going there in Nov. I have Chiari -  many, many problems, many many falls and head trama.

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Dr. Jallo will be doing my surgery.
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1663373 tn?1333639589
I am having my fusion surgery for c5c6 on Nov 29 2011---
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620923 tn?1452919248

  Know we will keep u in our thoughts and prayers : )


    "selma"
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Surgery date with Dr. Oro, November 29th. Ready for it ........I think.
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1703929 tn?1307469046
Good luck and a speedy recovery! Can't wait to hear how it went for you.
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Thanks! I will post as soon as I can afterward to keep everyone in the loop.
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620923 tn?1452919248

  Thanks for adding ur surgery date...know we will keep u in our prayers.

If u can, have someone post updates on ur progress : )

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620923 tn?1452919248

   Bumping up
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620923 tn?1452919248

  Please post ur surgery date here and please have someone post updates on ur progress.....
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1873663 tn?1322929091
24th of November 2011 - a week tomorrow. OMGoshly.
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620923 tn?1452919248

  Bumping up so those that have scheduled a surgery date can post here so we have a way to keep track of when someone will be going in so we can keep u in our thoughts and prayers.....please ask someone to update us on ur progress : )
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Hi everyone,
I am one week post op by Dr. Oro and other than the typical pain issues associated with brain surgery, I am doing really good. Dr. Oro and his team are some of the best that I have ever seen and the hospital staff was amazing! After care has been excellent and I know that I am in great hands as I walk through recovery. Never ave I seen a medical system like the one in Aurora Colorado work as well as it does. They are truly a "Whole person" medical system. We flew back home on Saturday and things are progressing well!
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620923 tn?1452919248


  YEAH !!!...so glad to get an update from u and such a positive one at that .....looking forward to more : )

take it one day at a time, very slowly, and no matter how good u feel, do not be tempted to do things u should not, not bending, lifting etc.....rest, and walk and exercise ur neck to avoid scar tissue.....

  "selma"
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620923 tn?1452919248
Bumping up for those scheduling surgery to post here...please have someone post updates on ur progress : )
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Jan 25th
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620923 tn?1452919248

  Thanks for letting us know, I hope u have someone that can post updates on ur progress...know we will keep u in our thoughts and prayers.

   "selma"
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620923 tn?1452919248

  Bumping up for newly scheduled to post their dates here : )
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979826 tn?1389039958
shunt revision tomorrow the 15th with dr henderson
molly
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1755089 tn?1376057155
I'll have a prayer for you.
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Sorry I posted separately before I found this thread... Jan 16th with Dr Popp in Boston
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620923 tn?1452919248

  No worries, it is easier for me to keep track with them all in one place....but I write them down when and if I see them...so it is best to post them here...lol....

Thanks and good luck
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Jan 31st at TCI
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620923 tn?1452919248

  Thanks for letting us know, please have someone post updates on ur progress the day of ur surgery.....

  May I ask which Dr will be doing ur surgery at TCI...I also had mine done up there.....

   Know we will keep u in our thoughts and prayers : )
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620923 tn?1452919248

  Bumping up for members to add their surgery date, and also a reminder to have someone post updates on ur progress when u r in the hospital....

I use this list to create the prayer threads to keep u all in our thoughts and to send good wishes for a speedy smooth recovery,.
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1903798 tn?1333908888
I thought I posted here...surgery is 2/9 in Aurora Co by Dr Oro:)
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1974023 tn?1325984002
Good luck with that I was fired from my when I informed them I was having surgery.
Debbie
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620923 tn?1452919248

  
  If u were qualified for FMLA they could not fire u, did ur company have more then 250  employees and did u qualify?
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1910752 tn?1329493822
January 26th I will go to Albany Medical Center for decompression surgery with Dr. Matthew Adamo.

Wish me luck!!
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620923 tn?1452919248

  BUMP
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My surgery date is the same as Rylanesmom Feb 9th!! We are the zipperhead twins :D
It will be done at Harbor View Medical center in Seattle Wa, performed by Dr. Richard G Ellenbogen and team!!

5 More days!
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1413972 tn?1305583364
my surgery is 29th feb! :-S at the QE bmingham under dr flint.

I jus feel numb, i ask meself is that cus im scared. Mayb!

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620923 tn?1452919248

  Thanks for adding ur surgery Dates, know we will post a Prayer thread for u....ask a family member or friend to post updates on ur progress.
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620923 tn?1452919248

  Bumping up
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I finally scheduled my surgery for April 6th Dr Trumble @ Florida Hospital Orlando

Dawn:)
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1979553 tn?1330318091
Saw the neurosurgeon today. My surgery will be Monday, February 27th at 9:30 am in Amarillo, TX.
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620923 tn?1452919248

  Bumping up for more to add newly scheduled surgery dates
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1947337 tn?1331427490
My surgery date is March 6, 2012..at Harris Hosp in Ft Worth, Tx with Dr. Alford! Little nervous, but sooo ready to get this thing done! Thanks to everyone for all of your support!

Sheri
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620923 tn?1452919248

  We will post a prayer thread for u....best of luck...and a speedy recovery.
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620923 tn?1452919248


      Please list ur surgery date on this thread and ask a friend or family member to post updates on ur progress post op : )
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620923 tn?1452919248

  To date I have one person having surgery on April 12th????

                 Anyone else?
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My surgery is April 10.
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620923 tn?1452919248

  Thanks for letting me know, we will have a prayer thread posted for u...sending good thoughts ur way : )
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620923 tn?1452919248

  Do we have anymore surgeries this month?...next month?

Please list it here so I can add it to my list to post a prayer thread.....and do ask someone to post updates on ur progress : )
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June 20th, TCI...PFD and fusion c1-c3
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700067 tn?1332992883
April 23rd. Dr. Andrej Choutka Ashland, Kentucky
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620923 tn?1452919248

  Do u mean Dr. Ondrej Choutka, MD ? want to make sure I am thinking of the  same one....

  Good luck....

Actressmouse...I have ur date thanks
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700067 tn?1332992883
It's the same doctor but is spelled different ways. His card says Andrej but his website says Ondrej. Either way, he's located in Ashland, Kentucky.
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620923 tn?1452919248

  Thanks for the clarification  : )
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620923 tn?1452919248

  Hi all I only have one person listed for surgery in May and it is for a foot surgery on the 16th....do we have ne one else having surgery this month?
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I am! I've been meaning to update everyone, but I have been feeling very  quiet and contemplative in the last month.

I'm scheduled for decompression on the 15th of May.

I know you guys like to have someone post to keep you updated, but that probably wont happen here. I just don't see it being realistic, the people I could ask would either see it as irritating and inconvenient, or are dealing with life, or just don't quite understand this all. But, I am generally okay with that, I will update you all when I can.
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620923 tn?1452919248

  Congratulations on the surgery date!!

  And I understand ur being a bit quiet so close to surgery....

If u want to set up a way to post updates u can PM me and I can help u work out something....and if there is ne thing else we can help with at this point, please let us know.
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I think my quiet actually has more to do with being busy with the end of semester assignments, finals, concerts etc...that being said now that is all done and I am starting to feel jittery, doubtful and nervous.

Any tips of dealing with that?
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620923 tn?1452919248

  Well for starters know that is normal, if u read my journal on my surgery experience u will see as I was waiting in the OR I wanted to jump up and run out of there...it is normal to get scared...but, I had a wonderful anesthesiologist that spoke to me and made me feel so comfortable with him, that helped me focus on all I did to get to that point, and what I had been thru pain wise and Drs not understanding to finally getting here...and I was relieved. and I just relaxed....another friend on MH told me about this bird...and as I closed my eyes after getting the meds to go to sleep I envisioned that bird taking flight....and it helped me knowing I had all these friends here....they all knew what I was going thru...that helps : )
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See, I feel like i can manage my pain...I mean I have weeks where I cant think straight or see straight...but it comes in cycles....and even those cycles im not 100% sure are from the Chiari - they don't always fit the bill....so pain wise I am doubtful if I actually need the surgury....that being said

That being said, my MRI showed blockage....I don't remember how much...but it was definitely a concern. I have been having more and more problems with my limbs, exercising causing extreme pressure, blacking out and my balance....like its ridiculous....practically falling over every time I stand up....XD I could be a circus act of clumsy.

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620923 tn?1452919248

  I was dealing with the pain too, it was the falling that got to me, not knowing when or where it might happen....and one fall resulted in 2 surgeries....so, I knew I had to do something....the Drop attacks scared me more then the surgery....

  Having pain my whole life I am not sure if I would know what it would be like not to have pain...so I just deal with it....and yes, mine cycled as well, where I had days that were worse then others....and I had times I did not think I was in need of surgery....but those drop attacks, and needing those surgeries for the injuries was the breaking point.
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Yes the drop attacks are AWFUL....I have always feared that I will get when while performing or in a concert or.....many other scenarios run through my head. My drop attacks begin with a sudden rush of pain/pressure in my head, then sometimes my eye site goes out..then I loose control of my limbs, and drop...but most of the time I can get myself to the ground safely before my limbs are completely out of my control because i can recognize when its going to happen. Except that one time it was like a seizure....then i did not have any warning or anything...but i typically remain conscious throughout them....sometimes i can talk, other times i cannot. Does that sound like yours?

The other thing that gets me is weakness in my arms and legs...I play guitar and draw and paint....and love playing sports. It is also the singing - which I feel is a silly really....getting a surgury so I can sing....but it is my love...and one of my gifts....I cant stop doing it even though it leads to black outs, migraines and just overall pain....I just cant....

But drop attacks...yeah....bad. Balance....bad....so bad...I do both kickboxing and yoga...(less and less in the last couple months though :( ) and many it is a site to see.....XD Oh boy....today I have been falling over (but usually able to catch myself) every time i move...its rediculous....ususally that is accompanied by slight amount of pain too...and my eye site...problems there

But surgery is not garunteed to help any of these things...I dont know...
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620923 tn?1452919248

  Actually, no, my Drop Attacks did not give ne notice they were coming, I would be standing one minute feeling fine and be midfall the next second...aware I was falling but could not react to stop the fall or call out.

If I had gotten some sort of feeling it was coming it would have been a little easier to deal with, but I felt fine...I would just drop....and one such drop resulted in injuries that required surgery...2 of them one on my knee one on my ankle....all b4 I got my chiari dx.

I understand u questioning surgery, I did as well....but I will say this month I will celebrate my 3 yr post op zipperversary and no drop attacks : )
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I'm scheduled for surgery June 27th w/Dr. Rosner.
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Btw, sometimes my comments aren't posted, then when I think that I need to sign in, medhelp doesn't recognize me.

I've been feeling poorly, but I HAVE to fly to Philly on Saturday to attend my daughter's graduation as a NP from UPenn.  Well, if I'm very sick, at least I'll be surrounded by nurses!
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1968463 tn?1374761413
Hi all. My surgery is scheduled to be at Tulane Medical Center in New Orleans, the week of May 21st. I will post the exact date and time sometime this week :)
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620923 tn?1452919248

  I am not sure what the problem is with ur comments.....when u r signed in, use the contact us link at the bottom of the screen to contact MedHelp techs to help u.

Let me know if they were able to figure out the problem.
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620923 tn?1452919248

  I am not sure what the problem is with ur comments.....when u r signed in, use the contact us link at the bottom of the screen to contact MedHelp techs to help u.

Let me know if they were able to figure out the problem.
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After just posting yesterday that my surgery was going to be June 27, I had it moved up to the next nearest appointment, June 13.  I think I'm pretty tough, but I had to admit that I'm suffering.
Can anyone imagine what this used to be like to endure?
Vivian
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620923 tn?1452919248

  I am glad u were able to move it up....but so sorry u r not feeling well,....try to rest up and take it easy.....

Do read our threads on tips for the hospital stay......and if u have ne questions ask....
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1968463 tn?1374761413
May 24th at Tulane Hospital New Orleans with the amazing Dr. Walsh !!!
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620923 tn?1452919248

  Yea !!! So happy for u sweety, know we will keep u in our thoughts and prayers and do ask someone to post updates : )
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1968463 tn?1374761413
Ty so much selma. I went through what felt like a heart attack a few minutes ago. They had asked me tocall in the beginning of the week...so I did..over 15 messages later...someone decides to call the office for me. She proceeds to tell me I have an appt with Dr. malgar on the 15th and that he is a specialist and Dr walsh reffered me to him because he doesnt do chiari surgeries anymore. I was in peices. The nurse from Dr Walsh's office called me and I could barley talk to her. She asked me why I decided to see Dr. Melgar? WHAT.....the receptionist took it upon herself to make an appointment with him and cancel dr walsh !!! The nurse called Dr walsh and explained what happened...and he was FURIOUS !!!! How dare they put my patient through that and since when does she say what operations I can perform...oooohhh....somebody is in trouuubbblllle. :)-  Just happy that it all worked out. His office never recieved any of the 12 messages I left. Dr. Walsh is having his phone lines transfered in two weeks becasue of this.

My DH said that he will make sure and update you guys for me frequently....he knows what you all mean to me :)
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620923 tn?1452919248

  OMG...I will tell u office staff is a huge problem...Drs need much better personnel...how dare she do that, I hope that fire her butt...lol...and what  a scare that was for u....goodness.

Glad it is all worked out now....and ur DH will keep us posted : )
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Went to Dr Menezes today and am scheduled for surgery on June 29  I am so excited and scared at the same time. 2 days of tests and MRIs  and all with a little 3 yr old tagging along made it interesting to say the least but I hope this is the light at the end of the tunnel.
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620923 tn?1452919248

  Hi. congratulations on ur surgery date!!...I know it is scary, and we do have a list of tips for the hospital stay, see the health Pages as it has several tips of things u will want to take along....and do ask someone ti post updates on ur progress and know u  will be in our thoughts and prayers : )
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620923 tn?1452919248

  Bumping up for members to add their surgery dates so they r in one place, it helps me with the prayer threads....

Please ask someone to post updates on ur progress : )
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2173983 tn?1337443861
I HAVE A PRE- OP DATE  OF JUNE 18TH AND MY SURGERY IS JUST AFTER THAT. IT WILL BE AT GEISINGER MEDICAL CENTER  IN DANVILLE, PA    BY DR SHELLY TIMMONS
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620923 tn?1452919248

  Hi and welcome to the Chiari forum.

Congratulations on ur surgery Date! For many of us it is a long journey to dx, and finally treatment so this is a big long awaited step.

Do have someone post updates on ur progress post op : )
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2173983 tn?1337443861
No I don't have anyone to do that. I just got a new cell phone so maybe I can do that for myself.   I getting kind of nervous; but my hubby has been my biggest supporter. He was the one that really suggest the surgery. He pointed out all the signs and symptoms to me and noticed them more that I did.     I want to say that our families suffer from this disease as much if not than than we do. Because they can only watch.  They are only helpless bystanders; who want to help. But are not sure how to help.

If there is any advise you can give to me before my surgery.....please give it to me!!!!!!!!!!
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620923 tn?1452919248

  Hi...the best advise I can give u is be sure u have the right Dr.....and all the testing for related issues were done...like for a syrinx in all areas of the spine, disk issues, ehlers danlos, sleep apnea,

Ask as many questions as u can about ur surgery, what is planned, type of surgery, lamenectomy, with dura patch if with a patch which one?

How long ur Dr typically keeps patient in the hospital, does he place them in ICU...will u have a pain pump,the more u know the better u will feel.

  Look at our Heath page of tips for the hospital stay, as u will want to get a pill box with days of the week and times on it to sort out ur pain meds, stool softeners, and the like so u do not forget a dose....get some  J&J baby shampoo as it is gentle and should not dry the healing skin out.

Get some one dish meals made in advance and in the freezer  and help for a few weeks for house work as u will not be able to lift, bend, push or pull......

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2173983 tn?1337443861
What is a Ehlers danlos? I will be ICU for 1 day and then a step down room.  I should be in for only 2 days as long as I eat and use the restroom; but she said I will be able to stay longer if needed.  She didn't say what kind of pain management yet because at my last visit is when I was told it was my choice about the surgery and to let her know.  My NS is 3 hours away.     I'll know more at my June 18th visit.   Any advise for the car ride home?  
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620923 tn?1452919248

  Ehlers-Danlos Syndrome is a connective tissue disorder and too many only look to see if u r hypermobile, but there r many types of EDS and many with chiari have it.

It can cause u to heal slowly, bruise easy, and be hyper mobile of the smaller joints and larger joints, u can have fragile skin, very soft velvet like skin, stretchy skin, skin that scars easy, tears easy, and for those reason u want to know b4 surgery as it affects how they approach closing, and the dura patch as we  also tend to be prone to rejection of foreign matter. See the EDS group here on MedHelp for more info, there is a thread with links to video clips by a EDS dr who also has it-http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

I took a big fluffy pillow and sat in the passenger seat with it slightly reclined
to help balance out the pillow so u r upright, and the pillow keeps ur head from bobbing all over.....I had a good 4.5 hr ride home as we had to stop at te pharmacy.

Surgery is always our choice unless our health is in danger ....so some have had emergency surgery.
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1968463 tn?1374761413
Ok....Let's try this again....

June 7th is my new surgery date....
I am asking everyone to please pray that this it and that surgery will actually be on this day. I at least get to be at my little girls review and get her dressed myself. However, I can't get put off again...it is miserable right now and I am desperate for some kind of relief. ...
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620923 tn?1452919248

  I think things worked out as u were worried about the review, now it is settled and u will be there...just take things slow and easy till then.

Praying this is the date no more delays : )
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I am really paying for my trip to Philly last week to see my daughter graduate as NP.  Of course I wouldn't have missed it for the world, but I got through it(all!) on sheer will power.
I'm sorry for your delay, but I'm glad that you'll be there for your daughter's review.

I've been trying everything lately--small meals, more salt, ice cream (to make my mouth happy), more coffee, less coffee, alcohol.  Finally I took some Ritalin today (which I have for driving), and I actually got some relief, and I was able to cook a couple meals in advance.  I had been playing a lot of solitaire & just looking at catalogs.

I presume "the dying feeling" is dysautonomia, although I'm not sure.
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Hi! My name is Tara and I am scheduled for decompression surgery May 31 in Chicago Il with Dr Awad.
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620923 tn?1452919248

  Hi Tara, thanks for letting us know......I hope u have someone that can post updates on ur progress....

Know we will keep u in our thoughts and prayers.
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1413972 tn?1305583364
2nd may 2012..
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Thanks selmaS.. I will try to have my fiancé update everyone. I'm pretty nervous
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620923 tn?1452919248

  It is normal to be nervous.....I was too....just imagine all of us here holding ur hand....
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2173983 tn?1337443861
sorry, I've been gone from here just too much to do with work and trying to things sround the house...............but my surgery is this tuesday june 26th, in Danville pa...with Shelley timmons
I will try to keep you up dated.
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620923 tn?1452919248

   Thanks for the heads up on ur surgery, know we will all be keeping u in our prayers and will look for an update when u r up to one : )

Just remember, rest, rest, and then rest some more post op.....<3
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620923 tn?1452919248


  Hi all I only have one surgery penciled in for July...do we have others?

Please post ur surgery date on this thread so they r in one place and no one is over looked....and if possible have someone post updates on ur progress....

and do not feel compelled to post urself, it is ur time to rest , rest and then rest some more : )
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620923 tn?1452919248

   Please post ur surgery dates on this thread so I have one place to look : )

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2178416 tn?1337617593
I don't have the exact date  yet, but my strabismus surgery to correct my double vision ( hydrocephalus caused 4th cranial nerve palsy)  will be in late August. yay!  Can't wait to see again...and pray I only have to have one surgery.  15% chance I will need 2.
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The 27th of this month has been scheduled for my surgery, but I'm going to be inpatient 23 maybe 22. They scheduled my flight for the 22.
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620923 tn?1452919248

  Got it ...I hope u have someone that can post updates on ur progress : )
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620923 tn?1452919248

  Post ur surgery dates here please and ask someone to post updates on ur progress so u can rest : )
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620923 tn?1452919248


  BUMP
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620923 tn?1452919248

  So far I only have 2 members listed for surgery in August....do we have ne others?
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1823499 tn?1370093889
My surgery is aug. 20th with the wonderfull dr oro in colorado. Boy am I more scared the second time around, but I know I'm in good hands:)......Dana
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620923 tn?1452919248

  Yup I have that one...and we have one on Aug 1st and that is it for Aug so far......
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979826 tn?1389039958
my surgery for icp bolt monitoring is aug 1 im nervous but ready for answers
molly
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620923 tn?1452919248

Got ur date too Molly...will be sending u all the prayers and well wishes too: )
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620923 tn?1452919248

  We r up to 3 that I have dates for......for the month of August.
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Hubby's surgery is Wed Aug 1.  Decompression, Craniotomy, C1 Laminectomy, Duraplasty.  Possible shunt to drain syrinx.
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620923 tn?1452919248

  Thanks I have him listed on my list <3
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3112631 tn?1356657157
Surgery scheduled for Thursday, August 2nd. Thank you all for welcoming me to this community!
Claire
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August 16th....and it cant come soon enough. I have been horrible lately and I am hoping for relief. Something has got to give.
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620923 tn?1452919248

  I have ur date on my list, please ask someone to post updates on ur progress post op.
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620923 tn?1452919248