I got diagnosed with Type I in February 2012 and realised I'd been living with what I thought were normal maladies for everyone, that had never come up in conversation, since my pre-teen years; when many of the symptoms became active. I just went back for 1 year from diagnosis scans along with some of my symptoms getting worse and after a lot of fear and research, am going under the knife March 20th 2013.
Honestly soiling myself about the prospect. The thought of someone cutting my head open, however skilled (Did loads of research), makes me want to vomit. I've only had the chance to speak to 1 or 2 Chiarian's and was just wondering:
1) If anyone who has undergone surgery has a post view pre-surgery check list. One of the main ones I keep getting back is lots of extra pillowcases. If you can provide anything like a detailed list of stuff to take care of pre-surgery and items to have on hand, things to aware of during recovery at home, road trip home etc.
2) I was additionally diagnosed with sleep apnea at the same time, ironically they think is very likely caused by me having Chiari. As I'm also an insomniac this has been life changing for me, as being on CPAP has helped reduce the number of migraines I get and better quality of sleep for the limited amount I get. However, I'm told I obviously won't be able to use my mask, as the back of head, where the straps go, will be my surgery site. Anyone been in the same boat and know how long it was before you could start wearing the mask again without it bothering the incision site. Yes the hospital is already aware I have apnea ;-)
3) I've probably had this multiple times before diagnosis and just always thought it was something I ate, I occasionally get this really nasty metallic taste in my mouth, that is can't be related to my food as I typically eat the same relatively healthy stuff over and over and there appears to be no pattern and it's v doubtful its meds as I'm only on a Nasonex and Zolpidum Nitrate for the insomnia. Nothing I do mouthwash or brushing gets rid ot it and eventually it goes away. Its amazing the myriad of symptoms of random stuff that I have that I look up that turn out to be potentially Chiari related. Anyone experienced this, thought etc. 23 days and counting.
Once u have the right Dr it is a little easier, but it is a scary venture, and if u were not on edge about it I would wonder about u : )
But as I said with the right Drs, that r well experienced with Chiari and all related conditions u should be ok....it is a major surgery and sometimes u can have set backs or need multiple surgeries,....
Talk with ur surgeon and make sure all ur concerns are addressed.
If u have ne questions feel free to ask...as for ur symptoms the sleep apnea and insomnia are all chiari related....
It sounds like u may have a CSF leak...did they look at u for that?The metallic taste could be CSF....so ask about that.
The taste has fortunately departed again. I've maybe noticed it 6-12 times in the last year and I have pre-op consult shortly that I'd going to discuss it on.
In terms of of the pre-op \ hospital stay \ post hospital tip check list, the one you provided was useful but was looking for something more along the lines of comfort tips etc 'specifically' related to the decompression surgery. Again the main one I got previously is either lots of extra pillowcases from leakage or pillowcases with the stitching removed put on top of other pillowcases so if you leak and stick you can at least pull your head up and then lightly shower the offending pillowcase section to remove; vs it pulling the surgery site when you move your head.
Well, I thought there was info on there as to using a deep V neck shirt to sleep in as it is easier to get over the head....and the hospital is very warm so light PJ's so u r not too warm, most hospitals give u slipper socks but if u want something else for ur feet. Also ear plugs for at night so u can sleep.
Hand sanitizer and ne wipes for wiping u face off etc....toiletries...
I also took my CD player to listen to music and audio books....I did not pay for the phone or TV as my DH had his cell phone and I did not want to be getting calls..and my room mate had the TV on, I could not deal with 2 so I opted not to pay for that...but $ is helpful in the even u do not like the food provided....I had my DH and DD go to the deli in the hospital and get me sandwiches.,...that was great to have.
I also took a pillow along that I knew would help me be comfy.
I hope this helps.ask specific questions and I will try to get u more info.
I noticed in several other discussions over time that you mentioned that patients with Chiari and EDS are at a higher risk of rejection that other Chiari patients without EDS. I was wondering where you got this information as my wife who works in the hospital I'm as an documentation\ stats analyst and myself have been unable to find any clinical information to support this online.
I was diagnosed as having hyper mobility syndrome about 15 years ago and its only as of the Chiari recently that have seen the argument that its the same or sub related to EDS Type 3 hyper mobility type.
Surgery is only a couple of weeks out and I'm in final pre-op stages and currently hoping to bring this it the attention of my NS as duraplasty is only going to be decided during the surgery and if so I'm scheduled to have a cadaver pericardium for the patch.
Hi...my NS told me, and he was careful to use my pericardium for my dura patch...I did not have issues, but it appears all members here that had issues were not aware of their EDS b4 surgery and have had issues ...with the dura patch that was either bovine or synthetic or cadaver....
Even those with EDS tend to be allergic to shuts or the material they r made of and then produce even more CSF....I know of a case where they finally discovered the issue after they removed the shunt.
This is all newer info and it may take a while until the stats are posted...but if I were to journal all I have seen in the last 3 yrs alone it would be enuff to convince neone...but I have been watching this for 5 yrs now...I am not a Dr, but I know what has happened and EDS is always the common factor.I have looked for info online as well to back up my statements, I could not find them either....
Well again this was my Dr and he is a Chiari specialist and this group does all their own research on these issues.
Do keep us posted as to ur surgical date.....we have a thread for dates so we know to post a prayer thread....
As you'll hear over and over, it's different for everyone. I've had four surgeries and have found that I'm totally down for the first 6-7 weeks and don't leave the house for anything but medical appointments. For the first 2-4 days, I like to have someone right next to me when I get up. I have a cane handy for the first couple of weeks because I get really dizzy when I get up and don't want to fall (hard lesson learned from first surgery!). I also like to have someone sitting very close by when I shower the first couple of weeks as the hot water makes me pretty dizzy. I typically am ready to start driving short distances at about 10-12 weeks post op.
Things I find useful post-op:
- help with meals from friends or family
- shower seat (you can get one for $15-20 at a big box store -- totally worth it)
- hand-held shower sprayer, with suction attachment to hang shower head at proper height for sitting on your shower stool
- chair in the bathroom to sit on while you're brushing teeth, etc.
- gel or clay ice packs (these are crucial for me!)
- access to streaming movies (I love reading but can't do much of it for the first few weeks post-op)
- compile an email update list for friends and family, and have someone in charge of sending out updates (keeps your phone from ringing off the hook!)
- I like to have a bed set up in the the living room before I go into the hospital (gives me a place to collapse into right when I get home)
- as best you can, set yourself up for peace and quiet the first few weeks and have help so that you're not tempted to do any lifting or bending too early
As far as the hospital goes, I like to have:
- my toiletries kit
- pajama bottoms (they wanted me in a gown but were fine with pj bottoms or sweats)
- cell phone
- lip balm
Forgot to mention...I had sleep apnea (central apnea, not obstructive) that was almost completely resolved by decompression. When my first decompression failed, my apnea returned. Now that I've got my head sorted out properly, I'm not dealing with apnea at all. I'm glad about that because there is no way I could tolerate the CPAP straps anymore.
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