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Chiari Malformation Community
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Avatar universal

CSF build up

i am 2 1/2 months post op chiari decompression surgery. i have had a ton of pressure on my left side, pushing against my ear. i also have a pinching pain behind my left eye. it hurts to move my neck back and forth. even to put a hand, just touching my head it makes it hurt. inside my head when i lay down, it hurts but also feels like there is a ball inside my head, buy i dont really feel anything on the outside. i cant lay or sleep on my left side or my back, only my right. i have a lot of discomfort laying down, and a lot of pressure. should i be worried? or am i crazy? i have been extremely tired the past few weeks.
7 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

WOW u r close to me....I don't get many Chiarians on here that are so close in proximity to me.....

I have to ask, have u been doing neck exercises (moving ur neck everyday) since surgery? The muscles can get tight if u do not keep them moving, and I found using a heating pad b4 for 15 mins and also after helps loosen those muscles and helps strengthen them as well.

And may I ask, are these new or the same symptoms u had b4 surgery?

Try sleeping in a recliner or elevate the head of ur bed....it can take time for ur body to adjust to the new flow of CSF if u had a obstruction of flow, and usually around 3 months post op we do experience some return of symptoms and this is a typical healing process.

Since ur issues are more when u lie down it sounds like low pressure as high pressure feels better lying down.....

It also takes time with sleep positions....and I found staying in the recliner post op a help.

Do look into doing neck exercises and use some heat as well, unless u have swelling....use ice  on that area....but for me heat worked well in getting  the tight muscles to move...and we need to keep them moving.

What has ur Dr said to these issues?
When do u see ur Dr agai?
Avatar universal
Thank you! we are very close! Is there a support group in the Allentown area? I move my neck quite often, yes. Sometimes i get symptoms close to what i had before, but other symptoms are completely different. The pressure, pushing against my ear has been going on for a few days, i feel like the left side of my head is going to explode! i saw my doctor two weeks ago, which he then sent me to a neurologist for just "migraines". i saw the neurologist last monday. He says it sounds like a combination of three things, migraines, chiari, and damage of the occipital nerve. Thats the pinching pain from the back of my head to up behind my left eye. The pressure had just started getting extremely bad, where nothing helps. heat works only when i have it on, as soon as i take the heat off the pain comes back. i see the neurologist again in May.
620923 tn?1452919248
COMMUNITY LEADER

  There was one that met in the Bethlehem area, but I think it fell apart as they use to hold the Chiari walk, but nothing the last 2 yrs...so not sure what happened there....I never did get to a meeting but I use to get info....

Hmmm could be all  the rain we have been having....weather will affect how u feel especially so close after surgery....

U may want to see a Neuro Optho...to see what all is going on with ur eyes.....

The weather is to dry out this week, see if u feel ne better....other then saying it could be one of 3 things, what treatment plan did the NL suggest?
Avatar universal
Thr neurologist put me on amitriptiline. He said if it didnt work he was going go up the dosage, and if that doesnt help, a nerve block was going to be discussed. I hope it is just the weather!! my whole left side of my head is numb, as my right is healed already. i know it can take long, but thats something my neurologist said worried him about the occipital nerve being damaged because the pain shoots up my head to my eye. May i ask where you had your surgery done at?
620923 tn?1452919248
COMMUNITY LEADER

  I went to TCI in NY.....as they were the closest specialists for Chiari and Chiari related conditions I could find.

Everything went well with my surgery...and I was well pleased...not only with my Dr but the care I got.

Do u know is the nerve damage due to surgery or how long it was compressed?
Avatar universal
They dont know if the chiari caused the damaged nerve, or if during the surgery it got damaged. I honestly think it happened from the surgery, because i never had the pinching pain and discomfort before. i honestly dont know how to explain my symptoms i had before my surgery because ive had so many since i have gotten the surgery, they replaced
the old symptoms. sometimes i get the same feeling, but i dont even know how to describe the pain!
620923 tn?1452919248
COMMUNITY LEADER

  Keeping a journal of symptoms and a daily log of what u do to see how they might affect how u feel..etc...and u can use this to see if u r getting worse and to show the Dr what all has been going on and less likely to forget if it is all written down.

If u feel worse, call ur Dr and let him/her know what is going on.
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620923 tn?1452919248
Allentown, PA
987762 tn?1331031553
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