So as i was driving to my doctors appointment (PCP) i found my self wondering (since people insisted on driving 20-30 mph below the speed limit) about me, and the things i been going through or dealing with and that got me to wondering if anyone else who has had decompression surgery (or hydrocephalus as complication) have started getting different "symptoms" that were not necessairly present at the time when chiari was running ramped in your daily life.
So I decided i would ask and or share. things i have noticed since decompression,
1. movement in my perrifal (?sp) vision really messes with my eyes (sometimes i think i need to wear a horse blinders on-lol)
2. ears seem to ring a lot longer and have almost a deeper tone (not as high pitched)
3. tremors have returned but not only do they come to me after too much walking/standing,but have lately been noticing them when i wake up in the morning or when i sit up from resting on the sofa
4. rocking/quick movement really bothers me
5. chewing food causing me to have neck/facial pain
6. i seem to have a really hard time with swallowing certain foods
7. not sure if this one is caused by meds but recently been noticing this film like coating in my mouth especially in the mornings, i thought it was from the acidolphilus pills i was taking but i had stopped them and its still present but not as awful..along with this i have also noticed that some sweet/sugary (but not all) foods gives me almost a tingly feeling in my mouth.
8. and this one is related to the shunt but lastnight everytime i laid on the right side of my head it would hurt along the cathader tubing and i didnt sleep well but woke up with one heck of a headache which got progressively worse as the day went on.
*********so food for thought....lol***************
We have a lot in common. I had decompression in 2008 and also developed hydrocephalus afterward. I have a VP shunt. I, too, have developed completely different symptoms than what I originally presented with. I have the trouble with my eyes, trouble swallowing, twitching (not tremors), pain in catheter tubing, very dry mouth, facial/jaw pain. I didn't have any of these prior to the shunt/decompression except trouble swallowing. I don't know why we have these problems now. I don't get it. I had a CT and xrays to check my shunt last week because I've been experiencing all of these things. I see my surgeon next Tuesday to get the results. Hopefully, it will just require a shunt adjustment. I hope it won't be that my shunt needs to be replaced. I don't want any more surgeries!
i was thinking thrush too--I had it after my decompression and it took forever to get rid of that swish and swallow med didnt work for me-actually it made me vomit- i convinved them i need a pill- but everything does point to thrush--UGH
Have you had anymore episodes, Julie? You definitely need to keep track of everything and maybe talk to your doctor about all of this happening now. I always have dry mouth, sometimes worse than others, but could it be thrush or just from meds? I wonder why I have it so bad the past few months. I hate it.
Carla
Julie H. said:
Hi Lisa,
I am 10 weeks out and I am noticing some things that seem different from before the surgery. I'm not sure they are Chiari related or not, but they are neurological in nature and *not* comfortable! :(
I'm having more ringing in the ears. I didn't experience too much prior to surgery but this has definitely increased. I have a lot of sharp needle like pains in the back of my head and I'm not sure if that's just nerve regeneration or what.
The past few days I've noticed I'm more shakey than usual and starting to feel unsteady.
I am also experiencing tremors.
I sometimes have a hard time swallowing..even my own saliva and will suddenly swallow the wrong way and have coughing fits.
Your #7 sounds like thrush. Is it possible you could have thrush? I had that horrible after surgery. The doctor gave me some medicine and it went away quickly.
I just suddenly have a lot of pain all over my body. My pain in my hands is worse..and burning in my back and hips.
I sound like an old lady! LOL I hate feeling like this though. I want to move on and forget everything and it's definitely hard when you don't feel tip top!
Carla- i hope the scan comes back OK,good luck plz let me know how it turns out, when you have a shunt series of xrays do they ever ask you how to do them? Ive had a few xray techs ask me and i always say I am not the tech YOU ARE---Oh which just reminded me of something when you have a Mamogram done make sure you let them know you have a shunt and the cathader tube runs down your chest-when i had my mamo i forgot to tell them right away til she came back in saying we see something weird and i was like oh it is a tube looking thing? she said yeah i said Oh thats the cathader hose--LOL--- so YES it is seen when you get a mamo-live and learn haha...
I was told by the NS who done decomp- i need another one for the cervical stenosis i have but to this point i am not where ready to do it again, atleast mentally i am not prepared for another one. But the funny thing is NONE of the doctors here NOR the Techs who read MRI's & CT's have said anything about cervical stenosis and will NOT agree i have it!........which then brings me to another question, Are these "symptoms" related to chiari or cervical stenosis----Sometimes I am SO CONFUSED!--lol
Carla Jo Stone said:
Lisa,
We have a lot in common. I had decompression in 2008 and also developed hydrocephalus afterward. I have a VP shunt. I, too, have developed completely different symptoms than what I originally presented with. I have the trouble with my eyes, trouble swallowing, twitching (not tremors), pain in catheter tubing, very dry mouth, facial/jaw pain. I didn't have any of these prior to the shunt/decompression except trouble swallowing. I don't know why we have these problems now. I don't get it. I had a CT and xrays to check my shunt last week because I've been experiencing all of these things. I see my surgeon next Tuesday to get the results. Hopefully, it will just require a shunt adjustment. I hope it won't be that my shunt needs to be replaced. I don't want any more surgeries!
I , like Carla had my decompression done is 08.......before operation I had some visual issues but ususally only when i had the classic Chiari H/A..
Now , however..I have 5 different strengths of reading glassing...but the Neuro Opthomologist says my vision is fine...had no explaination for needing different strength readers...periphial (sp) is off too, which is new.
I am wondering if NS is looking for a bad disc as well as cervical stenosis.....B/c many w/Chiari seem to have disc problems in cervical spine...I have had a total of 4 cervical discs fused and feel better in that area.
Take Care,
Love,
Lori
PS: I shared the poem with my elderly/sick mom today..she loved it and wants a copy...she wanted me to thank you for her.