Need advice

[Eisele]

I was diagnosed with ACM1 with 18mm in December 2008 by accident. I was told it would be best for me to have decompression surgery even though my only symptom was a chronic headache. So in January of 2009 I had the surgery and was basically shoved out the door. However my experience was wonderful at the time. No one ever recommended me to have physical therapy or any sort of idea what recovery would be like. All they had me do was return for an mri, which they said looked normal even though they "lost" the image and couldn’t show us. 3 years later I feel fine. I still have reoccurring headaches, just not as severe, but i have also noticed my memory is horrible. I can hardly remember the past life events, cannot focus on anything for long amount of time, and forget what day it is, what I did last week, or even the day before. I feel so absent in life. December of 2010 I wasn’t feeling the best and scheduled the mri. Everything came back normal. Recently I have been having a weird pulsation in the back of my neck where my scar is that does not hurt but its almost like my voice will echo in my head and the pressure within my head increases abundantly. Like someone is squeezing my brain. Has anyone else felt any of these? have any idea? I am debating going back to the doctor. I’m 20 years old now and I hate costing my parents money. I would think my doctor would have wanted me to check up with him every year but again we were kind of shoved away after surgery

P.S they told me the surgery I had was literally the easiest that could be done. I was only diagnosed with Chiari and because of my condition they had no need to open up the Dura

Please any recommendations would be helpful.

Thanks!

[selmaS]

  A virgin spine is one that was has not yet had surgery....u have.

I would suggest u have a MRI, many times when a Dr does the  less invasive decompression a second surgery may be in the future.....

Use the journal feature here in the profile page to record ur symptoms and issues and see if u can find what triggers ur symptoms to worsen.

ANd do use our Drs list to research Drs to find one that has more experience with chiari.

[Eisele]

they did do a less invasive surgery but honestly I can not remember anything that was said of what there were going do. I think it was Posterior fossa decompression or bony decompression. My NS was not and ACM specialist. I had the procedure done at doernbecher in Portland, OR but I dont remember his name. Last mri was december 2010.
daily rountine consists of waking up, going on a run, and working ( i am a barista, and saleperson, so not alot of physical work) then I hit the couch until night time. I am able to get a full nights sleep everynight and maintain three meals with a bunch of snacks.

I have not tried a journal. and I am not sure what an HA or virgin spine is.

[selmaS]

  Hi and welcome to the Chiari forum.

Not everyone will lose their symptoms post op, can some gain more, while others can develop new related conditions as a result of surgery.

U mentioned they did not open the dura, so did they do a less invasive procedure?...Do u know what was done? When was ur last MRI?

There are related issues u should have rules out as well, not sure if u did or if ur NS was a chiari specialist, but since u had surgery already it can be diff to find a Dr to look at u, so a true chiari specialist is the only way u will be able to go at this point, which is what I would suggest ne way...but just so u know since u had surgery u no longer have a virgin spine/back.

May I ask what ur daily routine consists of.,...?

Do u keep a journal to see if certain activity causes more flare ups of symptoms be they HA's or memory issues?