So I am three weeks post op now and I thought I'd just give you all a little update on how I'm doing!
My incision is still healing extremely well (posted a new picture for you all to take a look at!), and I am starting to think it is going to leave little to no scar after healing completely. I do get an odd feeling of the skin being tight and being pulled....like it is still under pressure...is that normal?
That bump on the back of my head (I believe it is from the patch) is going to take some getting used to, it is quite odd, and I believe it will be a while before I can lay on it comfortably. I also have noticed that it feels extremely odd when I get colder....its like it is not the same temperature as the rest of my body, and starts to feel like a foreign object in my head, gets really uncomfortable and makes me feel all strange and want to take it out. I have also had some aching near what I believe are the edges of the patch...but it is nearly gone now.
My pain is pretty good, the spots that were really bothering me from the halo are healing and not hurting me anymore! I have slowly been decreasing my pain meds - my last couple have been about 9 hours apart - woot! Typically if I have been needing to take them more frequently it is due to back, eye, or leg pain (with a couple exceptions).
My neck mobility is pretty good - I am not certain if I can start looking up yet...when I saw the physical therapist before leaving the hospital I was told not to do it quite yet....does anyone know if I can now? Looking down both with just moving my head, and also by moving my head are the most painful and difficult for me - even though I do it quite a bit.
Post Op Symptoms:
My Eyes - I have mentioned this before, but my eyes are DRIVING ME NUTS! goodness gracious. They are not staying the same, I certainly hope this levels out and doesn't stay a continuous problem, I have been getting headaches because of this...worse headaches then from the incision. I also still have a nystagmus, but it seems to be slightly less severe than it was pre-op (it was nuts before!)...I am wondering if some of my eye problems are because I am looking at a screen for to many hours in a day...so if anyone has some suggestions of activities I can do that are easy on the eyes, I would really appreciate that (I have been filling my time with movies, computer, drawing, painting and playing guitar...all of which work the eyes)
Black outs - I have still been having these post op, especially if I stand up to fast....for a while the pain that accompanied them was worse than before surgery, but that seems to be subsiding....I just have to remember not to stand up too quickly.
Numbness in limbs - I have not had much of this at all (it happened once), in my hands with a black out after standing up to quickly...so Im hoping that this problem is not still a problem. Though as I am typing this, my right hand is being a bit tingly...hmm....
A tremor? I seem to have developed a slight tremor, it is not constant, but shoes up in my hands, and my right leg on occasion where they are just shaking...has anyone experienced this? It seems very odd to me....
The itching is getting better....and I am getting random "pricks" all over, like a random shooting of a nerve that pricks me, last only a second ...nerves reawakening?
A couple things that have concerned me...Is it possible to spend too much time upright at this point? How mobile can I be? My other struggle has been sleeping....in that I have been having trouble sleeping. I trained myself to be extremely active, because it seemed to be the only way my body would be able to sleep...most nights I have not been able to sleep until well after 2 AM, and even had some where I could not sleep until 6:00 AM...this is not good for recovery....so I am looking for ways to be active, without potentially hurting myself...any thoughts? When can I start doing things?
Wow...this turned into a very long post, and I feel like I missed some things...haha sorry...
one is my right ear...this happened per-surgery too...it seems to have gotten worse, but Im not certain its chiari related, so parhaps you guys can tel me if anyone else has experienced this....when I play music, or sing or listen to something musicish. my right ear begins to "crackle" like the sound is distorted...or like a broken amp...it is extremely irritating...I tried to talk to my family doctor about this once, but he simply brushed it off...so extremely frustrating.
The other thing - Singing! the first time I sang after surgery I cried - quite literally. For the first time in my life I felt like I had enough space to do it...and it didnt feel like I was pushing my eyes out of my head! =D I even sound different...its very interesting. It is still somewhat uncomfortable to do, with the incision healing and all - but i believe that will get better!
My coordination seems to have improved as well - I caught something mid air without even thinking about it...that was a jaw dropping moment.
U will continue to have changes in how u feel, and diff feelings etc.....
AS for activity, my DH and I went on walks outside to help me with activity....more then I get now...lol....but, it was important then bcuz of how long we r immobile.
And as for looking up, go about it slowly, do a little at a time, looking further each time.....I was told to go to where it was comfortable and then try and push just a little further even if it meant using my hand to guide my head beyond that point...being careful not to push on the jaw.....
Use a heating pad B4 ur neck exercises to help loosen the muscles and again after no more then 15 mins at a time....this really helped me.
I am not sure about the guitar playing as it would cause some pull on the shoulder and neck muscles...mayb just the way I play, but be aware of how u hold urself while doing ur activities.
My eyes r going crazy lately, and I had this issue post op and listened to audio books...back to the eyes, the weather does have a lot to do with mine I am sure...so see if the weather is playing a factor for u too.
And blacking out??? Um, did u tell ur Drs? Sounds like POTS...do talk to ur Dr about this.
Thanks for the suggestions with the walking and heating pads! I will most definitely do those.
The guitar playing seems to be fine, I have been making sure that I am sitting properly, and when I play I use little arm movement for strumming - most of it is in my wrist, and I have been avoiding certain chords that require me to use more pressure on the strings as I find them tiresome....the only kind of playing that seems to have bothered me be was when I was doing slap guitar (like....think August Rush, when he lays the guitar down and hits...haha)...I will not be doing that for a while.
And about the blacking out...yes I have talked about it with my doctor before...I did not bring up POTs specifically (or did I...I cant remember now...oh boy), but he asked me to explain them, and he thought it be chiari....I will explain them now...haha...
So I stand up, since surgery I have been trying to just stand still for a moment, till it passes. In the 15 seconds after I stand the back of my head (right where my incision is..) begins to pulse, sending waves of pulsing through my head, into my eyes. There is pressure all over my head....sometimes it makes a sound like crickets whispering (thats the best I can describe it its kind of like a "hush hush hush" nose....cricket....)...
pre surgery if the cricket noise came it would with the pulsing the pulsing would ache funny (starting at the back of my head) and spread into my limbs...it didnt really hurt, and I could still use my limbs, (except for one or two times...)...but it felt odd....
at this point, I would sometimes have a feeling of not knowing where I am in space, though it was not common. It was always here that if the eyesight was going to go, it would go....there would be excessive pressure on the eyes, like something was pushing on them from the inside of my head, and they would stop working
About 15 seconds later I would be "equalized", everything would go back to normal and I could go on my merry way.
I did not experience any of this immediately post op. It began when I started standing a bit more, after laying down for so long. Initially it would hurt like I'd never felt it, and the back of my head would pulse and hurt like crazy, and it would last about a minute instead of its typical 15 seconds - it hurt like hell. Since then, the occurences of this have been decreasing, but it is still happening....the pain has decreased significantly, and it is now only lasting a couple seconds (though it typically still takes about 15 seconds to start, or sometimes I feel the pressure building up, I think its going to happen then it just equalized its self.)....I had one where my vision went away for a couple seconds.
I'm not certain what to think...I have read about pots before...and while I have some of the symptoms of it, the vast majority of them overlap with Chiari symptoms....I also have not had any of the fast beating heart rate upon moving or changing elevation....
Based on this description, my Dr. made a note of it, and suspected it was most likely due to the Chiari, and CSF not being able to move properly...like I said these occurrences have been getting less frequent and less severe, but the fear that overcame me the first time it happened was very really and still lingers when it happens...
I have read that sometimes our symptoms reoccur as we recover, so I have been hoping and thinking that that is what this is, and have been waiting till my follow up appointment to talk to the Dr....perhaps I should bring it up then?
I think he mentioned ICP before hand as a possibility, based on my description - but I could not remember the name of it....good thinking about keeping a record, my ophthalmologist (who led to my dx's of chiari), had me doing that years ago, but I'd forgot it..I will start that again and see what the dr. says at our appt.
I'm seriously hoping that I've simply got the "reoccurring symptoms" thing early...will have to figure it out...hmm....sometimes I find the fact that we are physical beings completed irritating lol.
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