LIST YOUR SURGERY DATE - PART 2 - Chiari Malformation

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LIST YOUR SURGERY DATE - PART 2

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cynderski

Feb 28, 2011

Surgery Scheduled for March 8th with the awesome Dr. Barth Green at Jackson Memorial Hospital/ University of Miami.

selmaS

Feb 28, 2011

To: cynderski

Hi...wishing u all the nest for u upcoming surgery...I hope u can have someone post updates on ur progress post op.

Know u will be in our thoughts and prayers
<3
"selma"

cynderski

Mar 02, 2011

uggghh...
Surgery postponed to June because my job will not approve my leave of absence until then.
Fingers crossed that this is the last hiccup for me!

selmaS

Mar 02, 2011

To: cynderski

U r kidding me, what type of job do u have that they can refuse u this surgery?

DId ur dr feel it was ok to wait?...do u have pressing issues with ur chiari that waiting would cause u harm?

"selma"

selmaS

Mar 06, 2011

BUMP

lynn06072010ATL32

Mar 12, 2011

Sorry I haven't been here for a while, just wanted to share my news with you guys. After 9 months of fighting with w/c they finally approve my surgery and it will be MARCH 31,2011,
Can anyone tell me what do I need to bring with me to the hospital on the day of the surgery.
Now that my surgery is schedule I'm feeling very scared but I know this is the only way that I could feel better and hopefully have my life back.

Stephiec79

Mar 21, 2011

It seems absolutely crazy for me to be posting to this thread. I think I'm still in shock. Decompression surgery scheduled for June 27, 2011!!!
~Steph

newgirl72455

Mar 22, 2011

To: selmaS

My surgery is scheduled for Tuesday, March 29th at St. Vincent's Hospital in Little Rock, AR. Dr. Ali Krisht will be performing by surgery.

selmaS

Mar 22, 2011

To: lynn06072010ATL32

we have a list in the Health Pages...Tips for the hospital stay...here is the link:
http://www.medhelp.org/health_pages/Neurological%20Disorders/Tips-for-the-Hospital-Stay/show/1136?cid=186

Wishing u all the best !! : )

"selma"

selmaS

Apr 06, 2011

BUMP

ritamarie2011

Apr 08, 2011

To: Setphiec79

I had that surgery by Dr. Heffez in Wisconsin ( I live in Florida) I felt better within 3 days than I had felt in 5 years - amazing. It's been 11 years out and I am totally fine and enjoying a full life symptom free!!!

pamk5

Apr 08, 2011

To: ritamarie2011

I am so happy for you...it is awesome to hear success stories.

pamk5

Apr 08, 2011

To: everybody

Surgery is April 20th, 2011 with the brain whisperer... Dr Rosner. Lisa Clark gave him that nickname and I just love it.

Pam

Sweetheartsluv

Apr 08, 2011

My surgery is scheduled for May 3rd at The North Shore-LIJ Hospital my surgeon is Dr. Paolo Bolognese from The Chiari Institute. I'm very nervous but- can't wait to hopefully start feeling somewhat normal...

pamk5

Apr 08, 2011

To: Sweetheartsluv

You are going to be in great hands... and I am with you on feeling somewhat normal. I just wonder what that feels like? We will know soon enough. Keeping you in my prayers.

Pam

Sweetheartsluv

Apr 09, 2011

To: pamk5

Thanks Pam. I'm sure you are gonna do great too. You go before me so f you are up to it let me know how you are feeling, I will be thinking about you. Praying we both get to experience what somewhat normal feels like very soon.

Krista :)

Sweetheartsluv

Apr 09, 2011

To: pamk5

i meant to say * If you are up to it let me know how you are feeling,

selmaS

Apr 13, 2011

BUMP

Sweetheartsluv

Apr 23, 2011

BUMP

zygy2

Apr 23, 2011

Surgery #2 to fix a pseudomeningocele scheduled for June 27th! Not really looking forward to doing this AGAIN.

selmaS

Apr 23, 2011

To: zygy2

I know u r not happy about the 2nd surgery, but it should help u feel better : )

STL5

Apr 23, 2011

I had my surgery April 7th and was in the hospital for 4 days. I will be attending physical and occupational therapy next week. Not much relief from my symptoms yet but probably need more time for the syrinx to go down in size. I had LOTS of help from family and friends with my 4 kids for which I am so grateful! Recovery has been a bit stressful. My oldest child just got a DUI and totaled out my vehicle and we were just hit by a tornado (missed my street) but seeing the devestation all around is heartbreaking.

selmaS

May 02, 2011

Please list ur surgery dates and have some1 post updates on ur progress : )

soccero

May 04, 2011

surgery #5 is may 12 with dr Henderson at shady grove hospital
Molly

Sabbynal

May 05, 2011

To: selmaS

Hey there, my surgery is scheduled for May 9th. That's the day after Mother's Day, so a second lease on this life is my gift to me.

FYI - I had to have a stress test on my heart to rule out complications from an abnormal EKG, and because I obviously cannot walk the treadmill, they chemically stressed my heart, and it knocked my right out. I told the tech beforehand that if my blood vessels dialate, with all the pressure on my spinal cord, the dilation in my brain could make it worse. Didn't really believe me until they tried it. Just a note for the pre-surgical clearance tests, sometimes they need to know what we know about Chiari. Remember, many medical people are under educated. Better safe than sorry.

selmaS

May 05, 2011

To: Sabbynal

Hi...I also had to have my heart checked out b4 surgery too......with an echo it was found that my heart was ok and I did not need to do the stress test on the tread mill...which I knew I would not be able to do....so I was lucky...but u r sooooooooo right, we have to educate all the drs we come in contact with about all our conditons.

Brooklynn07

May 07, 2011

Well I am scheduled for surgery again. (Last time we had to postpone it). So now comes the nerves again. June 13th for me. Hoping for relief, but not perfection!

Angel1781

May 08, 2011

I have surgery in 3 days! It is scheduled for Wednesday May 11th

soccero

May 10, 2011

srry but my surgery got changed from may 12th at 10am to may17th at 2pm with dr henderson at shady grove hospital

kmk431

May 11, 2011

Chiari Decompression Surgery and Duraplasty scheduled for May 24th.

selmaS

Jun 27, 2011

Please post ur surgery date...and have some1 post updates so ur friends here on MH can follow ur progress : )

selmaS

Jul 10, 2011

List ur surgery date...doesn't have to be for chiari, but if u r a member here we would like to know when to keep u in xtra special good thoughts and prayers....

We also ask u have someone post updates on ur progress as we expect u to rest : )

jenniferk86

Jul 12, 2011

Chiari Decompression Surgery and Duraplasty with titanium plate scheduled for August 9th 2011 at 11am with Dr. John Oro at the Medical Center of Aurora in Aurora, Colorado.

christianirc

Jul 13, 2011

My first (and hopefully last) decompression on 8/15/2011

selmaS

Jul 19, 2011

To: christianirc

Remember to have some1 post updates : )

Mannas

Jul 19, 2011

I am scheduled for July 25th for my decompression, duraplasty and possible laminectomy.

selmaS

Jul 22, 2011

Do u have someone to post updates??

If not let me know...I am sure we can figure something out : )

zygy2

Jul 22, 2011

July 14th I had my Third Chiari surgery, June 27th was my pseudomengecele repair surgery. May 26, 2010 was my original decompression. I know I am posting late but my emergency surgery was unexpected. Zipper times 3 now.

Joy35

Jul 23, 2011

Hello All,
My decompression surgery is next month (Aug.22) followed by tethered cord surgery. My surgeries are with Dr.Dan Heffez, has anyone else had their surgeries by Dr.Heffez?

selmaS

Aug 05, 2011

To: Joy35

We have several members that had surgery with Dr H...I am sure they will let u know who they r...and as a reminder, please have someone post updates on ur progress : )

"selma"

amisoup

Aug 15, 2011

I have surgery scheduled September 9th with Dr. Trumble in Orlando, FL. I just want it over!

Sparklyjojo23

Aug 23, 2011

I just had my consultation and am going to be admitted tomorrow and have decompression surgery on thursday 25th.

2 days away! I'm slightly in shock. At the very least I was expecting a week and that was me being optimistic!

selmaS

Aug 23, 2011

To: Sparklyjojo23

  Congratulations on getting this taken care of...but WOW that is fast!!

May I ask y they felt they had to go in so quickly?...and who is ur NS?

   Know we will keep u in our prayers : )

     "selma"

fblea

Aug 30, 2011

To: selmaS

Hello All -
Decompression/Duraplasty with Dr. Heffez (Wisconsin Chiari Center) on September 26!

selmaS

Aug 30, 2011

To: fblea

Congratulations...know we all will keep u in our thoughts and prayers.

Please have someone post updates on ur progress : )

"selma"

Grimalkinmao

Aug 31, 2011

To: selmaS

So....surgery tomorrow....saw NS, Dr. John Hudson of Intermountain Neurosurgery in Denver, CO, last Wednesday. He said he thinks this surgery will really make a difference and kind of geeked out about the surgery...was very enthusiastic about this being one of his favorite surgeries. Which I love....that he is excited to do the surgery. And that is apparently how I got such a quick surgery date. Still seems surreal that one week after seeing the NS I am having the surgery done. Am very excited and hopeful. He said he is going to spend extra time on the Arachnoid membrane, because he thinks they have overgrown or something and by cutting them it will help with the flow. Decompression and Arachnoid clearing. I have to go pack...eep! I'll let y'all know how it went soon :)

Samanthab259

Sep 01, 2011

I will call my surgery part 2 of making me feel some what normal again :) Sept 21st is my surgery date. I turn 25 on the 22nd so this year i can honestly say I forgot my birthday! Lol

selmaS

Sep 01, 2011

To: Samanthab259

What surgery r u having done this time since it is part 2?

selmaS

Sep 08, 2011

Please list when u r having surgery so we can post a prayer thread for u, and let us know who will be sending updates on ur progress : )

selmaS

Sep 15, 2011

BUMP

tracylb13

Sep 15, 2011

Had surgery January 27,1993. Very good results until a month ago. It has returned after 18 years. The pain that is.

soccero

Sep 15, 2011

brain surgery redo first thing wed morning dr henderson
molly

lydelia

Sep 23, 2011

To: all

October the 18th

selmaS

Sep 26, 2011

To: lydelia

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

selmaS

Sep 30, 2011

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 : )

mikecell

Oct 03, 2011

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.

selmaS

Oct 03, 2011

To: mikecell

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"

Sexybare

Oct 05, 2011

To: mikecell

What tests did dr do to find the blockage?

thrice3

Oct 09, 2011

decompression at johns hopkins on december 13th!

selmaS

Oct 10, 2011

To: thrice3

  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"

sissie195

Oct 15, 2011

To: thrice3

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.

thrice3

Oct 15, 2011

To: sissie195

Dr. Jallo will be doing my surgery.

cash242

Oct 19, 2011

To: selmaS

I am having my fusion surgery for c5c6 on Nov 29 2011---

selmaS

Oct 19, 2011

To: cash242

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

"selma"

mikecell

Nov 04, 2011

Surgery date with Dr. Oro, November 29th. Ready for it ........I think.

murryj

Nov 04, 2011

To: mikecell

Good luck and a speedy recovery! Can't wait to hear how it went for you.

mikecell

Nov 09, 2011

To: murryj

Thanks! I will post as soon as I can afterward to keep everyone in the loop.

selmaS

Nov 10, 2011

To: mikecell

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

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

selmaS

Nov 12, 2011

Bumping up

selmaS

Nov 14, 2011

Please post ur surgery date here and please have someone post updates on ur progress.....

amelia133

Nov 16, 2011

24th of November 2011 - a week tomorrow. OMGoshly.

selmaS

Dec 03, 2011

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 : )

mikecell

Dec 06, 2011

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!

selmaS

Dec 06, 2011

To: mikecell

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"

selmaS

Dec 11, 2011

Bumping up for those scheduling surgery to post here...please have someone post updates on ur progress : )

sunnyset

Dec 11, 2011

To: selmas

Jan 25th

selmaS

Dec 12, 2011

To: sunnyset

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"

selmaS

Dec 14, 2011

Bumping up for newly scheduled to post their dates here : )

soccero

Dec 14, 2011

shunt revision tomorrow the 15th with dr henderson
molly

drewlevas

Dec 14, 2011

I'll have a prayer for you.

megthp

Dec 19, 2011

Sorry I posted separately before I found this thread... Jan 16th with Dr Popp in Boston

selmaS

Dec 19, 2011

To: megthp

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

gatorcc

Jan 02, 2012

Jan 31st at TCI

selmaS

Jan 02, 2012

To: gatorcc

  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 : )

selmaS

Jan 06, 2012

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,.

Rylanesmom

Jan 06, 2012

I thought I posted here...surgery is 2/9 in Aurora Co by Dr Oro:)

huskys2

Jan 07, 2012

To: cynderski

Good luck with that I was fired from my when I informed them I was having surgery.
Debbie

selmaS

Jan 11, 2012

To: huskys2

If u were qualified for FMLA they could not fire u, did ur company have more then 250 employees and did u qualify?

ljturner5366

Jan 13, 2012

January 26th I will go to Albany Medical Center for decompression surgery with Dr. Matthew Adamo.

Wish me luck!!

selmaS

Feb 03, 2012

BUMP

deadmemory

Feb 04, 2012

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!

emza1910

Feb 05, 2012

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!

selmaS

Feb 08, 2012

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.

selmaS

Feb 21, 2012

Bumping up

shortyw3kids

Feb 21, 2012

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

Dawn:)

JJWalk

Feb 21, 2012

Saw the neurosurgeon today. My surgery will be Monday, February 27th at 9:30 am in Amarillo, TX.

selmaS

Feb 28, 2012

Bumping up for more to add newly scheduled surgery dates

Sheri817

Feb 28, 2012

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

selmaS

Mar 02, 2012

We will post a prayer thread for u....best of luck...and a speedy recovery.

selmaS

Mar 27, 2012

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

selmaS

Mar 28, 2012

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

Anyone else?

honeydew21

Mar 28, 2012

My surgery is April 10.

selmaS

Mar 29, 2012

To: honeydew21

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

selmaS

Apr 12, 2012

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 : )

actressmouse

Apr 12, 2012

To: selmaS

June 20th, TCI...PFD and fusion c1-c3

bledpub

Apr 12, 2012

To: actressmouse

April 23rd. Dr. Andrej Choutka Ashland, Kentucky

selmaS

Apr 12, 2012

To: bledpub

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

bledpub

Apr 12, 2012

To: selmaS

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.

selmaS

Apr 14, 2012

Thanks for the clarification : )

selmaS

May 03, 2012

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?

SilentSong101

May 03, 2012

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.

selmaS

May 03, 2012

To: SilentSong101

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.

SilentSong101

May 03, 2012

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?

selmaS

May 03, 2012

To: SilentSong101

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 : )

SilentSong101

May 03, 2012

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.

selmaS

May 03, 2012

To: SilentSong101

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.

SilentSong101

May 03, 2012

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...

selmaS

May 07, 2012

To: SilentSong101

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 : )

Viva001

May 07, 2012

To: selmaS

I'm scheduled for surgery June 27th w/Dr. Rosner.

Viva001

May 07, 2012

To: selmaS

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!

Rahe28

May 07, 2012

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 :)

selmaS

May 07, 2012

To: Viva001

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.

selmaS

May 07, 2012

To: Viva001

Viva001

May 08, 2012

To: selmaS

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

selmaS

May 08, 2012

To: Viva001

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....

Rahe28

May 09, 2012

May 24th at Tulane Hospital New Orleans with the amazing Dr. Walsh !!!

selmaS

May 09, 2012

To: Rahe28

Yea !!! So happy for u sweety, know we will keep u in our thoughts and prayers and do ask someone to post updates : )

Rahe28

May 09, 2012

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 :)

selmaS

May 09, 2012

To: Rahe28

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 : )

shawn90

May 09, 2012

To: selmaS

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.

selmaS

May 09, 2012

To: shawn90

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 : )

selmaS

May 18, 2012

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 : )

STAINEDMASH70

May 19, 2012

To: selmaS

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

selmaS

May 19, 2012

To: STAINEDMASH70

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 : )

STAINEDMASH70

May 19, 2012

To: selmaS

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!!!!!!!!!!

selmaS

May 21, 2012

To: STAINEDMASH70

  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......

STAINEDMASH70

May 21, 2012

To: selmaS

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?

selmaS

May 21, 2012

To: STAINEDMASH70

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.

Rahe28

May 25, 2012

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. ...

selmaS

May 25, 2012

To: Rahe28

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 : )

Viva001

May 25, 2012

To: Rahe28

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.

Tharris85

May 25, 2012

Hi! My name is Tara and I am scheduled for decompression surgery May 31 in Chicago Il with Dr Awad.

selmaS

May 25, 2012

To: Tharris85

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.

emza1910

May 25, 2012

2nd may 2012..

Tharris85

May 27, 2012

Thanks selmaS.. I will try to have my fiancé update everyone. I'm pretty nervous

selmaS

May 27, 2012

To: Tharris85

It is normal to be nervous.....I was too....just imagine all of us here holding ur hand....

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