Chiari Malformation Community
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Avatar universal


Hey everyone,

thought I'd post another update here. I'm home now - actually I was home yesterday. Originally they were going to keep me for five days, but obviously that didn't happen haha. I think that's a good sign...but now that I am home I am facing a few new obstacles

First off is getting comfortable...I cant seem to get comfortable...I have never been able to hold still long - and I am finding that staying in one place for any amount of time, let alone comfortably is difficult. I am also wondering if I should be avoiding leaning on the back of my head for some amount of time...I have not been told much of anything at all regarding that.

I am also finding myself a bit depressed...is that normal post op? Just not sure what to do with myself, how to keep myself occupied etc....

My other concern is my incision, I am told it looks very good and that is has been well and looks very clean etc...yet I am finding myself paranoid about it. My biggest source of paranoia at this point is that I am not on any ant-biotics to prevent infection at this point....is that normal? I know right after surgery I was on clyndamyacin (sp?). However it was only for the first day, and I maxed out on it, broke out in rashes and they stopped...nothing since then. Is this normal? Like I said it is a big source of paranoia right now...(if someone could please address this....it would really help....or hinder depending haha)

My memory is still recovering at the moment, but I was told that would take time, and the OT I saw yesterday (seriously lucky - I wasnt going too...but he came in briefly to talk about some other things and we spoke....he was very kind and helpful....) He said that part of the reason they may not have thought it was necessary for me to see him before is because at the moment my memory is on par with what I would consider "normal person", but he gave me a referral to Him or another OT in case it is not back up to what I expect from myself in a couple of weeks.

Good things - I can already move my eyes easier....and I COULD WALK IN A STRAIGHT LINE! haha, so simple yet for me such a big deal! Serious moment of joy - it was like I had won a million bucks, just being able to walk straight haha.

So if anyone has any tips for recovery, comfort and the anti-biotics. movement...keeping clean....etc...anything I would love it....

I have one more bit of story to tell...but I'm going to go eat some eggs now.
17 Responses
1968463 tn?1374757813
SO glad to hear that you are already home <3 and doing well !!!
620923 tn?1452915648

  So glad u r home, and yes u will feel depressed at times, this is normal post op.

AS for getting comfortable, do not lay on the back of ur head just yet, I laid on the side...and I slept in a recliner as I did not like being flat...for 2 reasons , my reflux which flared bcuz of all the drugs used during surgery and bcuz of surgery....lol...

Find old movies, or crochet  or audio books at this point, but u will sleep alot, allow urself that so u heal.'

  AND make sure u do the neck exercises to avoid scar tissue from forming and help ur neck muscles from getting tight and in knots and spasms.

  Take ur pills on schedule to keep ahead of ur pain, once u have it, it seems the  pills can not knock it back down....

Also take ur stool softeners so u do not have to strain and with all the meds u had in ur system, u may have an issue.

Keep ur scar covered in the sun light with a scarf or hat do not allow this area to burn.

Use J&J baby shampoo when u wash ur hair, but do not wash too often as it will dry out the skin and pull on the scar.

Expect some symptoms to return as u heal...and ur moods and emotions to run amuck....

And ask about nething if u r not sure : )
Avatar universal
That is one thing....they did not give me much in the way of neck exercises...I have turning from side to side, and looking down...but that is it....so if you guys have any more recommendations that would be wonderful....I'm doing not bad with them......still limited with how much I can move, but not bad....so if you know anymore that would be very helpful.

I have been sleeping a lot....it is true haha....

As far as the pain killers I am on...well I'm not on much haha....just Tylonal 3's and Advil...but I am honestly so confused about how often to take them and stuff right now....uhk...so confused. Typically if the pain gets to be too much, I have been sleeping it off, until the painkillers work...I need to sit down and get a schedule figured out....

As far as the stool softeners go..they haven't done a thing for me...I am so plugged up and bloated right now...so if you have any more suggestions regarding that....it would certainly be helpful . The only thing that has helped if getting someone to manually push things down....but that has only given me gas really haha....oh boy.

My biggest concern at the moment is the lack of anti-biotics...thoughts on this?
700067 tn?1332989283
My surgery seemed to be a lot different than a lot of folks'. I didn't get pain medication post-op in the hospital unless I specifically asked for it and I just got sent home with Tylenol 3, nothing else. My instructions are to take them "as needed." I got more pain relief following my wisdom teeth removal.

I get constipated very easily so that's been a big problem for me. Like you, the stool softeners don't do anything for me. I take a little bit of milk of magnesia, easily bought over the counter. I also had some dulcolax left over from a previous surgery I've had this year (so far, this has been my third surgery this year) so I take it as well. But the MOM helps the most. Also, and I know this sounds weird, but for bowel movements I have found that things seem to flow a little easier if I can get them started when I am standing rather than sitting. Of course,I have to hurry up and sit down so as not to make a mess. :-)

When things get really bad I drink about 1/2 tablespoon of olive oil. It's better if it can be a little bit warm, although you might want to be careful about burning yourself. Yeah, it's kind of nasty when taken alone but it is a natural softener.

I have made a stack of pillows behind my head when I am laying on my side so that I am not using any muscles to hold myself on my side. That way, I can also lean back a little bit without actually putting any pressure on my head.

I was in the hospital for 2 1/2 days. I wasn't in the ICU at all. I've been out of surgery now for about a month. It wasn't what I expected at all. I'm worried about my incision, too, as well as the patch. I was hoping that since I have EDS they would use my own tissue for the dura patch but they didn't. My surgeon only uses bovine. So I hope it holds!
Avatar universal
Sennalax tea works wonders.  I was not on  antibiotics after surgery at all, my incision healed quickly.  I also did a lot of sidelying in bed, rested and watched food channel.  I will have to go back to work in 2 weeks, which will be total of 3 months off.  I had a laminoplasty of C5-C7 done at the same time.  The pain of that procedure is worse then the decompression.  Don't overdo things, you will regret it.  Get outside to keep spirits up.  Take care.
700067 tn?1332989283
Oh yeah, I didn't have any antibiotics after mine, either. I had forgotten about that.
Avatar universal
Haha, thanks for the reassurance about the anti-biotics....it really helps my paranoia

So far, I have been doing a lot of sleeping...a lot. Though I managed to play one song on piano....woot. I'm hoping either today or tomorrow I may be able to do some painting or drawing.

bledpub - I didnt really get much for painkillers either until I asked for them. I remember lying in recovery, them saying they weren't giving me any yet and asking how my pain was. I wasnt breathing normally or anything but I remember thinking "huh...this feels like one of my really (not even extremely...just really) bad chiari headaches....how high is my pain tolerance?!?!" haha...I was also sent home with just T3's and the instruction to take them as needed...so far I have been alternating them with advil....and it is managable so long as I keep doing the exercises (which id still like more ideas for), move around enough, and keep on a decentish schedule for the painkillers. Though Im kind of paranoid about OD'ing on them.

The nurses were saying that my incision looked really really good, especially in comparison to other incisions they had seen...very clean. so that is comforting I suppose but still...its nerve wracking when they don't tell you specifics about everything and stuff....

Last night was especially rough...I was in a lot of pain from being constipated, and the painkillers weren't helping with the uncomfortableness of that. When I was trying to swallow a pain killer it got stuck in my throat....which led to vomiting....hurt like nothing else man. Has anyone ever had that problem? Tips for that?

Also....it would seem that my eyesite has changed a bit...Im certain I still need glasses but I am finding myself getting headaches when wearing my glasses (and when not), however I am typing this without my glasses, and was reading things that I would have never been able to read without glasses before earlier today...has anyone ever experienced this?
Avatar universal
one more thing....about the bowel movements haha

since the stool softeners did no good (I am sharing this in case anyone else may need it) I did a couple of things....one was put myself on a "soft foods" diet. Things that would just pass through me. e.i. fruit, water, quinoa...and while fibre is good it doesnt really speed things up, just keeps things moving once its moving. I also, as weird as this sounds, quite literally got someone to push my bowels down....haha...Im not sure it helped that much, but I could definately feel the rigidness in the abdomen go away and here things moving (from the outside...) and I could feel it working, I just didnt have the strength to bear down after all that...

one more thing...I am slightly nervous about washing/drying my hair...but id really like a shower (i havent had one since I left the hospital) any tips?
1306714 tn?1327257080
I don't know if you have staples or stitches, but I also suggest getting Johnsons baby shampoo.  The shower is the best after surgery,  I had a shower chair which helped so much so you won't be off balance.   I loved getting into the shower after surgery.  It helps feel better.  Hope you feel better soon.  
Linda :)
Avatar universal
I have heard baby shampoo...but getting that is not an easy thing for me...so I am hoping what I normally use will do the trick.
700067 tn?1332989283
I can't use Johnson's so I just used my regular shampoo. It doesn't have a lot of chemicals in it and it was fine. I had my husband wash my hair for me. I sat in the bathtub and he used the hand held shower unit to wash my hair. Although baths are not suggested post-surgery the real risk for them is infection. (I've had a LOT of abdominal surgeries so I've asked a lot of these questions.) they tell everyone not to take a bath just to be on the safe side because they have no way of knowing what the cleanliness level of the person's home is. However, if you wash your tub with bleach and/or Lysol and scrub it good, it's perfectly safe. You just want to get rid of any harmful bacteria that might be lurking. We do this the day before I have any surgery so that it will be ready when I come home.

If you go here http://www.mayfieldchiaricenter.com/chiari_surgery.php and scroll down to the bottom, under "recovery" you'll find some post-op exercises that might be helpful.

I wouldn't dry your hair unless you absolutely have to. Just one less thing to worry about. I let mine air dry anyway so that's not a problem for me, but it might be for you if you have to go out somewhere.

I agree with Linnie...although I am still too weak to stand in the shower, the beating of the water on my neck relieves some of the tension and helps a whole lot. That's been one of the best things for my pain. The water on my head hurts just a little bit, but i've had bad sunburns and taken showers that have been more painful.
620923 tn?1452915648

  U may want to try a pro biotic to help with ur bowel issue, it helps get ur digestive track back in natural balance...it has magnesium in it and should help since the stool softeners r not working for u...and do drink plenty of water.....even fruit smoothies should help.As for the pushing, I found it is helpful to have someone press down on my right side of my back from the top down and then along the lower back from right to left...it has always helped me and my DD when she was a baby ....it gets things moving : )

I took baths post op, as I could not stand the water beating on my head from the shower, my DH was very good at making sure it was clean...and like mentioned above by bledpub as long as it is clean u should be fine.

  I also wanted to say as I forgot, I was not given antibiotics post op either, I did have oozing, and later got a topical antibiotic ointment from my PCP for just in case....and I did not get an infection.

Avatar universal
Thanks everyone you are all so helpful - I have had a bit of luck with the bowel stuff now....been more careful what I am eating and stuff....

as far as the bath shower goes...I took a bath/shower....I KNOW my bathtub is not clean enough for a bath/shower post op, its a fact....and I could not clean it myself at this point. I am a bit nervous about it, but I admitedly suffer from paranoia. What I ended up doing was sitting for cleaning my body, and then stood (with assistance) to do my hair. It worked quite well, but I am not having a bit of itching on the incision....it most likely has nothing to do with the shower but....slightly paranoid...is it normal to have some itching? I really hope showering/bathing like that was okay...I did not see any other option...but like I said, I was concerned...I know my tub is not clean. I feel like the itching is probably just hair starting to grow back...but it certainly is irritating.

I was going to ask another question...but I forgot oh boy.

Oh, I also seem to be experiencing some pain/numbness around my skull, where they "locked" my head in place...also some swelling in those areas...any tips for that....

and neck exercises...if you guys have anymore....
620923 tn?1452915648

  U will have a lot of itching...it is the hair growing back as well as healing that is going on.....

The points that the halo was attached to ur head to help hold u still during surgery may be sore, but will heal with no intervention...just do not pick at it and it should be fine.

As for neck exercises I have a chart in my profile page, but u do have to read to see which ones I was told to do, as not all on the chart r appropriate for chiarians.
Avatar universal
Thanks, the will be very helpful!
Avatar universal
if I can find it....what album should I look under?
Avatar universal
never mind, found it!
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