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Chiari Malformation Community
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11509747 tn?1418868111

Post Chiari I malformation surgery.

Hi, I am a 44 year old woman whos had Chiari I for most of my life, I've learned to deal with my headaches and all the pressures that I had in my head.  So on Oct 2 2014 I finally had to have my surgery because the choking reflex was happening more often than not. I also was having terrible spasms in my head, that were very very painful like a charlie horse in the brain. I love to laugh in even to do that it was painful. Also the paralysis of my left side was becoming more and more visible.

Now that I have had the surgery my head pressure has decreased however the headaches were bad before and they were always there, now they come often but they are intense!!! Im like what in hades is this. I also have the tremors even I have a tough time holding stuff in my hands and my memory seems to really be bad. Im always tired even with my b12 vitamins. My sleep is restless, the scar itches like a mother and the area of my head is still so very very sore. It hurts or bothers to even touch the back of my head and I can't sleep on my back.  Im waiting to see what my normal will be cause right now this is just so uncomfortable.

The Neurologist just think im making things up but I have learned to ignore them and continue to pursue my normal because this is truly hindering me from even working at a pace that I was once used to.
6 Responses
620923 tn?1452919248
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
It is possible to develop a CSF leak,or a related condition may be flaring.
Did they rule out all related conditions? Do you know what type on dura patch was used?
620923 tn?1452919248
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
It is possible to develop a CSF leak,or a related condition may be flaring.
Did they rule out all related conditions? Do you know what type on dura patch was used?
11509747 tn?1418868111
Hi Selma

No i don't know what type of Dura patch was used, However i will definitely ask when I see the neurosurgeons. Thanks, Im hoping there is no leak, I will be scheduled for another MRI in January also. it just hurts a lot and my skull is soar. I had to cut my hair because it felt as if i had a ton on my head.
4816750 tn?1368808270
If it is your scar itching, mine did that for several months after surgery.  I asked the doctor and he said that was a good sign means it is healing.  For the soreness is a different story.  Like Selma said ask your doctor. Sleeping to me sometime, cause I had to find the spot that was "mine".  Went from seeping on back or left side to the right side with my arm up.  Now comes the fun one.  Being tired, even with B12.  I take them also.  There are days I can't keep my eyes open.  Then are fun when at work, they tease me about being asleep.  Then you have the days you feel like you have tons of energy.  There is a lot of things you have to learn to do a different way but you can do them.  Remember every person is different and does things different.  So what may be good for me  may not work for you.  Remember we are here for each other.  Have a Merry Christmas.
9432311 tn?1432828685
I am sorry to hear about your recent symptoms, as it sounds like you are really struggling. The intense head pain is probably your worst to deal with on a day to day basis. But then not getting sound sleep must just makes the pain worse. Some days - not always though - I drink an extra cup of black coffee. Sometimes caffeine makes me feel better. Another interesting thing I get from ****'s sporting goods. Usually at the cashier line they have jelly beans with caffeine in them for runners to use for energy. Do you use any meds for headaches? The other odd thing that seems to soothe my headaches is cold water on my head as I lean back in the sink to get my hair washed when I get a haircut. I could never take a cold shower, but cold water only on my head feels good. There are so many people here at this forum who have great ideas about coping with pain. Just collect all the ideas and see which one(s) work well for you.

You also mentioned having tremors. I don't know any relief for those. But if you find one, please share it with me because I suffer from those in my hands and legs. I hope some of this is helpful for you.
620923 tn?1452919248
COMMUNITY LEADER

   I  felt  the  same  funny  how  hair  can weight  so much  but  it  can  cause pain  .....I  kept  mine  tied  up  on  my  head  and it  was  only  to my  shoulders....plus,  post op  it  was  on  to my  shoulders  in  front  of  my  ears....lol....the rest  was  shaved,.,....so  not  as  heavy.....but  it  did  get  heavy  with  time.....

  Talk  to  your  Dr  about  related  conditions  like  Ehlers -Danlos*  as  it  may  be  behind  your  tremors  and sleep  issues....I  found  taking  an  antihistamine  helps  me  with sleeping  and  relives the PND  issues  I  have  always  had,,,,,

  As  for  the tremors...EDS*  can  cause  malabsorption  of  vitamins  and minerals....so  have  blood  work  done  to check  B12's  and  D's  as  well  as  magnesium  and  potassium  levels....

  Hope  that  helps....keep  us  posted  on  your  progress.
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