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.
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.
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 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!
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.
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.
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.
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....
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
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."
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.
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 !!
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?
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.
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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