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

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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.
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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"
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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
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   bumping for newly zippered to add their names
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as of 2-16-2011 I am now a zipperhead also
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  Welcome to the Zipperhead club Jenny !!!
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  Bumping up for those that have recently had the PFD to add their names to the                                                              
             ZIPPERHEAD CLUB !!!
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Im a proud Zipperhead as of 8-23-2010.
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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!
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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
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I am officially a "zipperhead"   Had surgery on Jan 3, 2011 & will find out next week if we have to do surgery again :(
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  Hi and welcome to both the Chiari forum and the Zipperhead club!!

May I ask y u may need surgery again?

   "selma"
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I became an official zipperhead 3 weeks ago..4/27/11...
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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"
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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!
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  Hi...keep in mind weather and stress can play a role in how u feel...plus, u will experience symptoms as u heal.
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I am an zipper head had decompression Jan 21 2011 for Chiari and syrinx repair
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  Welcome to the ZIpperhead club Anna !!
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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!
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Happy to welcome u to the club as well...not happy u had to join, but happy to include u : )
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   Bumping up for newly zippered to add their names......
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Joined this club on 4/20/2011.  Dr Rosner was my surgeon and I have done remarkably well.  So glad it is over.  
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Congrats and Welcome Pam !!!!!
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  BUMP
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2 time zipper! 07/08 & 12/09
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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.
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I am proud to join the "zipperhead" club :)
PFD w/ duraplasty (among other things) 6/16/2011
Dr. Barth Green, University of Miami
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620923_tn?1416285879

  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"
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   Welcome to the zipperhead club : )
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   BUMPING up for newly zippered members to add their names : )
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Officially zipper head 8/9/11!!
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  Welcome to the zipperhead club Jen !!!
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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.
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  Sounds like an very interesting design, one many chiarians may like to have : )
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    BUMP
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Official zipperhead since aug 10 2011
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  Welcome to the Zipperhead club : )
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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.
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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.
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  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"
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oopss ..... lol. I meant Oct 18, lol. I will put it in my journal. Thanks for the tip.
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   Bumping up for recently zippered to add their names.....
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new zipperhead as of 12/13/11! woo!
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  Welcome to the Zipperhead club!!!
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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
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620923_tn?1416285879

  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 : )
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  Bumping up for all newly zippered to add their names......
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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
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   Welcome to the official zipperhead thread : )
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As of 2/9/12 I too am a zipperhead:)
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   Welcome to the official Zipperhead club : )
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Zipperhead as of 1/26/12
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  Bumping up to allow our newly zippered members to add their names : )
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Hi new to the forum! Been a zipperhead since Feb. 3, 2010.
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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
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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."
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620923_tn?1416285879

  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"
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I became a zipperhead February 9th 2012 by Dr. Ellenbogen and team at Harborview medical center =)
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620923_tn?1416285879

  Congratulations and welcome tot eh ZipperHead club Krystal !!!
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  Bumping up for all newly zippered to add their names : )
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Zipperhead as of Feb. 10, 2012!!!
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  Congratulations on being a ZIpperhead!!

How r u doing post op?
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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 !!!!
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  Congratulations Sheila !!! Welcome to the Zipperhead club : )
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  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 : )
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I have been zipped twice now, so does that make me a double zipperhead lol
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Four time zipperhead here! First zip June 2005; most recent August 2012.
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Zipperhead as of July 2nd 2012.
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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.
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  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?

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My neck was zipped in 2000, & my head in 2012.  I have a very loooong zipper.
No regrets, at all!
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  Bumping up for newly Zippered to add their names to the Zipperhead club.
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Zipperhead as of 9 Oct 2012.  Doctor Oro performed the surgery which included inserting a titanium plate he designed.  
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  Hi and welcome to the Chiari forum.


....and to the Zipperhead club......I hope u plan on sharing ur chiari journey with us : )
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Hey guys, official zipperhead as of 16th April, in recovery and trying to take it easy on myself and stay in control. It's been a long road and my thoughts are with all of you xx
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620923_tn?1416285879

  Hi and welcome to the Chiari community and to being a Zipperhead !!!

  It is a long road and to help with ur recovery...rest, rest and then rest some more...do not be  tempted to do too much at this point....allow ur body to heal and take ur time b4 u try to do typical house chores no matter how good u feel .....wait !!

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July 25, 2012
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I am going to be a new zipperhead as of July 2nd, 2014. I've been doing as much research as possible, but I know to focus on the good things, not the bad stories! Any advice as I get ready to join the Zipperhead club?
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  Hi the best thing I can tell you is relax...have patience and do not rush to get back to your normal lifestyle.

   Keep positive and us posted : )
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I became a zipperhead on August 4th 2014.

Had Decompression surgery, a C1 laminectomy, and Duraplasty .

Dr. Michael Stechison was the fine surgeon that did my surgery. Spent 3 days in the hospital, then went home. My legs feel like brand new.

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  Hi and welcome to the Chiari forum and to being a Zipperhead.

Please add your Drs info on our Dr list thread.....

  Glad you are seeing some benefits already...just remember do not over do it at this point as you can suffer set backs,...take your time getting back into daily routines.
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Taking 5 weeks off of work and I am planning on relaxing the entire time other than a couple of short walks every day that they told me to take just to expand my lungs. I felt the benefits right in recovery. My legs have felt like they were mildly cramped for the last 5 months, but when I woke up in recovery they felt brand new.
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  Much of how you feel in recovery can also be the meds so be careful....it is also possible for symptoms to return as you heal....so again, take it slow....

Only 5 weeks?...I am not sure that will be enuff....

Do keep us posted on your recovery process and when you go back to work how you do with it at that point post op.
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I'll be stir crazy way before 5 weeks are done, but I'm going to go really easy and heal for those 5 weeks. First post-op follow-up with my surgeon is this morning.

I'm an active person who works out daily and likes to get up every day and go to work. I'm in great physical shape, and got into even better shape in preparation for the surgery by really cranking up my workouts for the 5 weeks between scheduling surgery and having it. I'd say I was in better shape at 48 before my surgery than I was at 28.

My work load is already planned as "very light" when I get back.
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  Good luck to you.....I pray it all goes according to your plan.

Keep us posted.
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Doc said everything looked great today. Trimmed a little knot off the end of the scar on my head.

Cleared me for regular showers.
Cleared me to drive since I have most of the movement back in my neck.
Said no heavy lifting, and return visit in 3 weeks.

Been weaning myself off of the pain meds already,Tylenol seems to work fine for pain, and I have muscle relaxers that I take in the evening.

Spent most of the morning with my wife, we went grocery shopping, put gas in the vehicle, etc. Ate lunch and had a nice 2.5 hour nap.
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  Good for you....I was not doing much at this point post op.....

I went for walks...but not grocery shopping....I have issues with florescent lighting...so I avoid stores still today....

Glad it is all going well for you and pray it continues to go as well.
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