How many zipperheads? - Chiari Malformation

Chiari Malformation Community

How many zipperheads?

Post a Question

« Back to Community

About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

View community archives

Font Size:

Background:

Search this Community:

245 Comments Post a Comment

Viewing 201-303 comments:

«1

Most Recent

BekahDarling

Aug 25, 2010

A week from today (Wednesday), I'll be in surgery...
I ended up making my own version of a Chiari pillow; got my button-up/v-neck tops, and managed to get my "hospital bag" packed & ready, so that I'm able to relax before-hand.
Thanks for all the support.

selmaS

Aug 25, 2010

To: BekahDarling

HI Bekah

Know we will have a prayer thread for u on the 1st!

We will be thinking of it as u get ready to leave....and know we will be with u in spirit : )

"selma"

LisaM46

Nov 26, 2010

Official zipperhead as of November 8, 2010. I spent one night in ICU. Nausea & vomiting for three days & it took four days to get me on my feet! (I think mostly due to over-medication.) On the first night, my pain pump stopped working, but at that point, I had a good nurse who actively worked to try & get it going - and when she couldn't, she made sure to get one that did work. I had some trouble with my oxygen levels dropping too low a couple of times. I went home on the sixth day, and seem to be improving every day. I am able to walk around the block every day, but I do get tired. I don't have the pain, cramping & vibrating I had in my hands & feet prior to surgery, and the pressure is better in my head. (Still having some pain at the lower back of my head & incision site.) Staples taken out on the 11th day post-op.

My doctors were - Dr. Holly with Dr. Batzdorf attending, at Santa Monica/UCLA Medical Center. I am very happy with both doctors. I'm due to go back for a follow-up mri at the three month mark.

Lisa

selmaS

Feb 19, 2011

bumping for newly zippered to add their names

jennylynch

Feb 20, 2011

as of 2-16-2011 I am now a zipperhead also

selmaS

Feb 21, 2011

To: jennylynch

Welcome to the Zipperhead club Jenny !!!

selmaS

May 18, 2011

Bumping up for those that have recently had the PFD to add their names to the
ZIPPERHEAD CLUB !!!

Samanthab259

May 19, 2011

Im a proud Zipperhead as of 8-23-2010.

itsy1

May 19, 2011

I'm a 2 time Zipperhead! I got a "brain lift" in '91 complete with a spinal shunt for syringomyelia. Then, 19 years later in '08 I got my second decompression; this time I followed it up with a detethering of an occult teathered cord. Apparently my ft was so tight it looked like a guitar string instead of the normal spaghetti thickness they're supposed to look like. It had pulled everything down again. Now that it's cut, hopefuly I'm done.

Recovery was much easier at 19 in '91. This time it took a bit longer. Of course this time I had a family to take care of too ;) As of today (5-2011) I'm doing well.

I wish all my fellow Zipperheads well :)

Thanks for this forum Selma!

pixiedust77

May 19, 2011

Its weird to say I am a Zipper-head but its kinda cool too''' might as well be proud right... I am a Zipper-head as of Feb.05 2009

Lnileski

May 19, 2011

I am officially a "zipperhead" Had surgery on Jan 3, 2011 & will find out next week if we have to do surgery again :(

selmaS

May 19, 2011

To: Lnileski

Hi and welcome to both the Chiari forum and the Zipperhead club!!

May I ask y u may need surgery again?

"selma"

NicoleEspinoza

May 20, 2011

I became an official zipperhead 3 weeks ago..4/27/11...

selmaS

May 20, 2011

To: NicoleEspinoza

Welcome to the Zipperhead club Nicole !!!

  How r u doing? When u r up to it u may wan to post ur experience from surgery in ur journal......

  Praying ur recovery goes smooth

   "selma"

NicoleEspinoza

May 21, 2011

To: selma

i am doing well...i have been feeling great aside from some neck pain i feel good.. I got my first migrane (migraine) last night and woke up with it again this morning so today hasnt been all that great..hoping tomorrow is a better one!

selmaS

May 21, 2011

To: NicoleEspinoza

Hi...keep in mind weather and stress can play a role in how u feel...plus, u will experience symptoms as u heal.

anna326

May 21, 2011

I am an zipper head had decompression Jan 21 2011 for Chiari and syrinx repair

selmaS

May 22, 2011

To: anna326

Welcome to the ZIpperhead club Anna !!

cash242

May 22, 2011

To: NicoleEspinoza

I too am a zipperhead as of 2/9/11! What a unique thing to say we belong too. Am glad I found fellow zipperheads to share this journey with--good luck!

selmaS

May 22, 2011

To: cash242

Happy to welcome u to the club as well...not happy u had to join, but happy to include u : )

selmaS

Jun 01, 2011

Bumping up for newly zippered to add their names......

pamk5

Jun 05, 2011

Joined this club on 4/20/2011. Dr Rosner was my surgeon and I have done remarkably well. So glad it is over.

selmaS

Jun 11, 2011

Congrats and Welcome Pam !!!!!

selmaS

Jul 01, 2011

BUMP

momto3kids

Jul 01, 2011

To: selmaS

2 time zipper! 07/08 & 12/09

Doodlebug61

Jul 22, 2011

To: zipperheads

I am in the Fort Worth area, has anyone had word done by Dr. Thomas Ellis? He is my specialist and I'm very nervous.
Surgery for September.

cynderski

Jul 22, 2011

I am proud to join the "zipperhead" club :)
PFD w/ duraplasty (among other things) 6/16/2011
Dr. Barth Green, University of Miami

selmaS

Jul 23, 2011

To: Doodlebug61

  Hi and welcome to the Chiari forum.

I am not familiar with that name...but, that does not mean all that much...I am sure u did ur research...and being nervous is to be expected...if u weren't I would be concerned.....

As long as u r confident and comfortable with ur Dr...then it should all be ok.....try to relax.

Do post in the surgery date thread  when u r having surgery and have someone post updates on ur progress : )

   "selma"

selmaS

Jul 23, 2011

To: cynderski

Welcome to the zipperhead club : )

selmaS

Aug 18, 2011

BUMPING up for newly zippered members to add their names : )

jenniferk86

Aug 19, 2011

Officially zipper head 8/9/11!!

selmaS

Sep 01, 2011

Welcome to the zipperhead club Jen !!!

jenniferk86

Sep 03, 2011

thanks! I am also an artist and thinking about designing a tattoo of my spine being opened up a little more down about halfway with my spine bones showing and small purple butterflies flying out each with my childrens name on them and a zipper at the very bottom and maybe a chiari ribbon on one of the butterflies. I may post the design once I have drawn it.

selmaS

Sep 03, 2011

Sounds like an very interesting design, one many chiarians may like to have : )

selmaS

Nov 02, 2011

BUMP

Sexybare

Nov 03, 2011

Official zipperhead since aug 10 2011

selmaS

Nov 03, 2011

To: Sexybare

Welcome to the Zipperhead club : )

lydelia

Nov 19, 2011

As of November 18th of this year, I officially joined the zipperhead club.

I noticed my symptoms (numbness, tingling, head pains, headaches, and various other things) over a year ago. After seeing a few doctors, and settling with doctor Cheng, we decided surgery was my choice. So I started keeping a symptom journal and noticed that things were getting worse and then I started having trouble swallowing, so I went back to Dr. Cheng and we decided to do surgery.

I stayed in the neuro-icu one night and then was moved to a step down room in the same area, where I stayed for two more nights. My dr was Dr. Joseph Cheng at Vanderbilt Hospital in TN.

lydelia

Nov 19, 2011

oops .... hit enter too soon. To continue .... after the surgery I woke up from anesthesia hard, and sick and had to stay in the recovery area for a long time waiting for a bed on my floor. They got the nausea under control and then when I got upstairs, the pain. The pain was the hardest thing to deal with. It took them the night to really figure out what was going to work for me, but when they finally did it was managable. Once I got to talk to my family, and Dr. Cheng, they said (and he said) that he was glad the did the surgery. My cerebellar herniation was not going down my spinal column a lot, instead it was pressing on my brain stem, so it was good that we did it when we did. He also said that it went text book perfect, so I was happy about that also.

Coming home was a little rough. I couldn't turn my head at all for awhile, and still (at five weeks out) don't have full range of motion but it is getting there. For the the first two weeks, I had a lot of trouble with nausea and pain. There were days I couldn't eat one meal or another because of pain and nausea. Those days weren't all the time, but good and bad were about 70/30. If I slept wrong, I woke up in a lot of pain. If the weather changed suddenly, pain, and a lot of it. Those first two weeks, were the most painful of anything I can remember even with all the pain meds, and I have had two c-sections. Dizziness and a LOT of fatigue and sleeping was an issue too, but I was told to expect this. Dr. Cheng said the first two or three weeks would suck, and then after that I would notice a big difference, and he was right. The only thing I did not expect were the balance issues I had. I called my Drs office and they were sort of shocked about them too, since I did not have them before surgery, but they started to wane.

I stayed with my grandma for two weeks, and then back home to hubs, housework and kiddos. Still taking it as easy as I can (did some things I shouldn't have and paid for them and learned, like no vacuuming). The first week back with hubs and kids was hard, but it's getting better week by week. I am at five weeks out, and I still get really really really tired if I do too much, but I just nap and that takes care of that. Balance is still a little off, but getting better daily also.

Slowly I am lessening my pain meds. I skipped my suppertime ones today, and have not had any issues other than a dull headache, and some neck stiffness due to skipping a muscle relaxer, which makes me groggy, but I can handle that. I have been having trouble getting off of pain meds due to to how much pain I was in at first. I have never really been a wuss, but I am afraid of that level of pain, so it is hard for me to cut down on pain meds. I am afraid of it coming back. It was so intense.

I feel like I am progressing well. I am scheduled to return to work 11/29, but that is not going to happen I am sure. I have a very labor intensive job and feel that I am going to need some more time off.

Having said all of that, right now I am glad I had it done. I could immediately tell a difference in my body, when the pain meds were working so I could think :D My body has felt more awake than I can remember. I don't think I really realized what all was going on with my body and for how long until I had this surgery.

I have a post-op appointment this coming Monday (Nov 21), and I will update again then. I still have some headache/head pressure pain, and some pain around my incision and some nerve re-working pain up the back of my head, but that is getting less and less.

Also, selma .... if this post does not go here, feel free to move it. I know there is a thread for operation stories, but I couldn't find it.

selmaS

Nov 19, 2011

To: lydelia

U can post this here, but may I suggest u also put much of this on ur profile page in a journal and add to it as u go so it is easy to locate...that way other members can also find ur surgery experience by going to ur page : )

Oh and don't u mean Oct 18th of this yr???not Nov....lol....

"selma"

lydelia

Nov 19, 2011

To: selmaS

oopss ..... lol. I meant Oct 18, lol. I will put it in my journal. Thanks for the tip.

selmaS

Dec 20, 2011

Bumping up for recently zippered to add their names.....

thrice3

Dec 20, 2011

new zipperhead as of 12/13/11! woo!

selmaS

Dec 20, 2011

To: thrice3

Welcome to the Zipperhead club!!!

irislita

Dec 20, 2011

Hi...i had my surgery done 2months ago.my symproms started all together in may. From one moment to the other i was really dizzy,had tinnitus couldnt handle noises,lights anymore and got this migraine on a pain level out of the normal. Well the first nighr after my surgery i woke up in pain and couldnt sleep.the next day i was asking for pain meds each second and they brought me up from icu to a private room.it was hard and painful showering,but i forced myself.after 5
Days i went home crying in the car of pain and nauseas.
Well my back head pain and migraine first disappeared...migraine now comes back by well overdoing if u can say so.i am able to move,my scar does hardly cause me trouble...it healed till now perfectly and they did not shave a single hair!but my balance is horrible,i get blurred vision and confusion in stores and restaurants and feel more tired than before.but i noticed i hardly get spots antmore since surgery and not go to the toilette have of the times i went before.i am still on early stage of healing,but i know i will have to live with symptoms forever...its a long way to go...but i dont regret surgery at all...i dont wanna know what more symptoms would have come up without surgery.i am still not able to work...which is hard for me...u just loved my job and my colleagues...good luck for everyone...i hope the best for you all

selmaS

Dec 20, 2011

To: irislita

  Welcome officially to the Zipperhead club....


  May I suggest u start a journal of ur chiari journey so we all have one place to go to read  as it is hard to remember which thread something was posted in.....

  It helps to be able to read others experiences, thanks for sharing : )

selmaS

Feb 12, 2012

Bumping up for all newly zippered to add their names......

linnielou232

Feb 12, 2012

To: SelmaS

I can't believe I didn't see my name on the zipperhead club. Zipperhead as of June 9, 2010. Had zipper reopened on 8-10-10, 3rd zippered split on 9-27-10

selmaS

Feb 12, 2012

To: linnielou232

Welcome to the official zipperhead thread : )

Rylanesmom

Feb 12, 2012

As of 2/9/12 I too am a zipperhead:)

selmaS

Feb 12, 2012

Welcome to the official Zipperhead club : )

ljturner5366

Feb 14, 2012

Zipperhead as of 1/26/12

selmaS

Feb 16, 2012

Bumping up to allow our newly zippered members to add their names : )

IlianaK

Feb 16, 2012

Hi new to the forum! Been a zipperhead since Feb. 3, 2010.

Ginaginapilotina

Feb 17, 2012

To: linnielou232

Dang! You're my hero! Sounds like you've really been through a lot! Why did they have to redo your surgery a month later?

Gina

Ginaginapilotina

Feb 17, 2012

To: Ginaginapilotina

I am a Nurse, and found out one day at work (on the Neuro floor I was working on), that I had in fact a Chiari Malformation. My MRI was misread for 2 years and 2 coworker neurologists overlooked it. Finally I broke down one day after an opening pressure of 40 from a spinal tap to the Chief of Neurosurgery. He told me at 10 am - 2 hours into my shift that I needed to have surgery right away. I had a Chiari Malformation and syringomyelia.

Zipperhead official on 7/14/2010.

Dr. Heffez said to me yesterday in Milwaukee that I need a titanium plate because the first neurosurgeon took out too much skull. Who supports Dr. Heffez, and also titanium plates!? HELP! I'm scurred and totally shocked that the first guy "messed up."

selmaS

Feb 17, 2012

To: Ginaginapilotina

  Hi and welcome to the Chiari forum.

I would suggest u see a couple other NS's....b4 u settle with that one....as u want a few opinions b4 u choose.

Knowing someone that had the plate , then had to have it removed...concerns me, but cerebral ptosis is bothersome too and needs to be treated...

Scroll to the bottom of this screen and locate the link to the Health Pages and see the one with the list of Drs...do some research...I understand ur first surgery was quite quick... but take some time and find the right dr for this repair.

    Good luck to u

     "selma"

deadmemory

Feb 17, 2012

I became a zipperhead February 9th 2012 by Dr. Ellenbogen and team at Harborview medical center =)

selmaS

Mar 11, 2012

Congratulations and welcome tot eh ZipperHead club Krystal !!!

selmaS

May 02, 2012

Bumping up for all newly zippered to add their names : )

JessiLinn

May 07, 2012

Zipperhead as of Feb. 10, 2012!!!

selmaS

May 07, 2012

To: JessiLinn

Congratulations on being a ZIpperhead!!

How r u doing post op?

Rahe28

Jun 21, 2012

I am officially a part of the zipperhead club as of June 7th, 2012....and proud to be a part of such an amazing group of people !!!!

selmaS

Jun 21, 2012

To: Rahe28

Congratulations Sheila !!! Welcome to the Zipperhead club : )

selmaS

Sep 19, 2012

Noticed this has not been added to for a while...please add ur name if u have been Zipped and r not on our list : )

Sexybare

Sep 19, 2012

I have been zipped twice now, so does that make me a double zipperhead lol

czpdx

Sep 19, 2012

Four time zipperhead here! First zip June 2005; most recent August 2012.

shawn90

Sep 20, 2012

Zipperhead as of July 2nd 2012.

Joyce0218

Sep 24, 2012

To: Ginaginapilotina

Heffez totally blew my daughter off. Waste of a trip up to Milwaukee. Doctor was interupted several times during her appointment. Now find out that my daughter does need surgery.

selmaS

Sep 24, 2012

To: Joyce0218

Hi, may I ask who she is being seen by now?

Without naming names and getting too detailed about the bad experience can u tell me how u r getting her the help she needs?

Viva001

Sep 25, 2012

My neck was zipped in 2000, & my head in 2012. I have a very loooong zipper.
No regrets, at all!

selmaS

Nov 25, 2012

Bumping up for newly Zippered to add their names to the Zipperhead club.

BlessedOkie

Nov 27, 2012

To: Community

Zipperhead as of 9 Oct 2012. Doctor Oro performed the surgery which included inserting a titanium plate he designed.

selmaS

Nov 27, 2012

To: BlessedOkie

Hi and welcome to the Chiari forum.

....and to the Zipperhead club......I hope u plan on sharing ur chiari journey with us : )

Viewing 201-303 comments:

«1

Most Recent

Related Discussions

Chiari Malformation (48 replies):
Hi everyone! I'm 16 and I have Chiari Malformation type ...[more]
Multiple surgeries for Chiari?? Even years later?? (34 replies):
I am scheduled to have decompression surgery for my Chia...[more]
Surgery recovery time? (49 replies):
I am a 25 year old male and I had decompression surgery ...[more]
am i crazy for wanting surgery? (16 replies):
I was just diagnosed last week w/ Chiari's after being r...[more]
Post surgery headaches (96 replies):
Hi Guys! It's been 4 weeks since surgery for the malf...[more]
Decompression Surgery Questions. (9 replies):
I am meeting with a neurosurgeon Thursday after being di...[more]
Chiari Malformation Surgery-i'mScared! (10 replies):
I have recently been diagnosed with Chiari Malform...[more]
sugery (17 replies):
I would like to know how many people had surgery and the...[more]
LIST YOUR SURGERY DATE - PART 2 (367 replies):
Hi all, As you are scheduled for surgery please add i...[more]
scary thinking of surgery June 10 (12 replies):
I went to the Doctor on the 26th and thank's to all of y...[more]

« Previous Next »

< Back to Community