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Chiari Malformation Community
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6346533 tn?1441302647

NS convinced its not my chiari causing my symptoms anymore!

I had decompression surgery for my chiari in oct 2013 and still gettin all my symptoms now.
They went away almost compleatly for a litte bit but a month or so after my op the started slowly coming back and now its the same if not worse sometimes than it was before the op!
At first i just thought it was me recovering from the surgery..
Then it got worse not better so went to see my NS and he told me it was my sinuses that were the problem now making me so poorly and in pain.
He said he was convinced thats what it was and sent me to ENT.
Well i went to ENT a few days ago, and he did tests, put a camera up my nose and down my throat, and had a chat with me about my symptoms and he says its not my sinuses.
He said the most of the symptoms im getting are not even sinus related. :S .. He said he is convinced its not that!
But put me on yet more antibiotics anyway for a month this time to see if it has any affect at all, but i have been on 3 different ones already in last 3 months :( ..
And i have to go back and see him when ive finished them but he wants to send me for more scans on my head to see whats going on as hes sure its not my sinuses.
Grrr .. Frustrated.. Confused.. And a little nervous now..
Has anyone else had the same issues? What was the out come?
My NS seems sure my chiari is not causing it now but its like i never had the op!
But i feel like he doesn't belive how much pain i am in and just thinks because ive had the surgery im all better now!
But im not.. And all i want to feel better ..
Even just a little bit would be helful but feeling worse than ever now :(
10 Responses
620923 tn?1452919248
COMMUNITY LEADER

  It is possible to have symptoms return depending on a few different causes....one an underlying relater or non related condition....or u could have something that resulted from surgery, and last u over did it and caused a set back.....

May I ask what is the worse issue u r dealing with, is it the same symptoms as pre op or are these new, but just u feel as bad as pre op?
6346533 tn?1441302647
Hi thankyou for replying..

Mostly the same symptoms as before my op, the same headaches that drive you to tears and pain in the neck and top of the back, the dizzyness, feeling like i have no energy and no matter what i do im in pain, feeling sick, hearing noise no1 else can and i really struggle to concentrate more so when reading things.. there are more but these are the worst and most consistant.

I do seem to be getting more pain down the middle of my back than before thats kinda new like right down my spine. i didnt get that often before and now seems almost every day i have it for atleast a couple of hours.

Also the concentrating is worse now than before it really cant seem to keep focused when reading, the words just dont seem to register i my head at first and i feel i need to squint but had my eyes checked out and nothing is wrong i have been told.

The headaches at times feel worse now than before but not all the time, i constantly have headache but the intensity does vary day to day.
620923 tn?1452919248
COMMUNITY LEADER

  When did u notice the issue with reading?

Do u notice if the HA dissipates if u lay down?

What do u do on a daily basis?....What activities are u back to doing?
6346533 tn?1441302647
Noticing it more and more over last couple of months really,

It doesnt seem to make a differance if im laid down, sat down or stood if its hurts bad, it hurts no matter what.
But sometims if i lie down i can feel it banging more like it has its own heartbeat.

And i work from 10pm to 2am, so usually up about 10am, have breakfast, watch some tv for a little bit, go for a walk usually in the afternoon sometimes to the shops (10 mins away) or to my dads (15 mins away) or my friends (10 mins away) if its my dads or friends i stay for a couple of hours usually have a cuppa, go home make tea and get ready for work. Thats about it. sometimes more, sometimes less depending how i feel.

I did try doing a little more excersise than just walking but found it made me worse so stick to walking now.
620923 tn?1452919248
COMMUNITY LEADER

  At what point post op did u go back to work and what do u do there, what are ur duties, Sorry if u already told me, but I do not recall.

It could be u were doing too much too soon....how many hrs a week do u work?
6346533 tn?1441302647
I had my op in october 13 and returned to work almost 6 weeks ago now in feb 14,
I work in a warehouse but have had my duties amended as i can no longer be a picker with all the heavy lifting and bending for 8 hours a day was no longer an option.
I now sit at a desk and scan in and out watches to colleuges and put them away and charge the batteries ect.
I have been doing part time hours building up slowly from 12 hours for 2 weeks to 16 for 2 weeks then 20 hours for 2 weeks starting at 3 days building to 5 days.
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