7 years in...symptoms still not my friend

[klharmon]

Hi everyone..I'll be 23 in April and had my Chiari decompression surgery Dec. 15, 2005..I was diagnosed very young (4 maybe?) when I fell off my swing set. The doctor did an mri and found I had the malformation. Before the surgery I was in excrusiating pain for sometimes days..headaches that practically crippled me. I could blink too hard and it hurt so much I'd vommit, which made the pain worse. I had blurred and double vision. My balance was terrible..couldn't walk a straight line or stand on my toes with my eyes shut..all those silly but important test I failed. The surgery was very painful as I'm sure those of you whom have went through it know, but after months of healing I did notice my symptoms had went from horrid to almost mild except for a few of what I call presurgery headaches..with those it is as of I hadn't had any form of surgery at all. I was also diagnosed with psuedotumor cerebri and have to get lps done to check my pressures every so often..my latest will be this Wednesday after a new mri is done..I'm seeing a new neurologist and she seems very nice and eager to help me. My symptoms have been worsening again.  I've struggled to get help because it's so hard when the neurosurgeon who performed the surgery says (2-3 yrs ago) it looked ok so I feel foolish and as if no one will believe my pain. Praying this dr can help..so sorry this is so long but I do truly appreciate any help

I recently found out my pressures are affecting my eyes..left one most. My optic nerves are thinning and my iris (colored part of the eye) is flaking off and floating into some eye fluid thats  name I cannot recall..the neurologist also detected some straining when I looked to the left (follow my finger, pen, flashlight...whatever)...so parepheral (sp) damage is there..it could be from contacts the optomistrist said or could be my head and pressures...has anyone else experienced similar problems? I also still have issues walking straight and wake up with the back of my head hurting worse early in the morning along with neck pain/stiffness which I first assumed might have been cause from sleeping crooked in the night..I know acm never is "cured" only hindered from progression. I have read a great deal of your posts and see that the majority of you still suffer with the headaches...any suggestions on..well anything? I know I won't really know much until after Wednesday, but I do at least find some hope and comfort in knowing I'm not alone

[selmaS]

  I know some have had issues with the optic nerve...what the exact issue was/is I can not be sure...and not sure I have heard of the  lost of iris flakes?

That is not something I recall at all.....

No worries we have have issues with spelling and seems we r able to read it neway,.....lol...

[klharmon]

Oops sorry about the spelling..yeah she mentioned lasix (sp once again) as well...I will def let y'all know the day after tomorrow..

Plus...Selma or anyone that reads this..has anyone else experienced optic nerve thinning and/or lost flakes of your iris? The peripheral vision damage is concerning as is the flakes of blue eye floating around somewhere in my head (ha) but I know God will take care of it all..I just was curious if anyone else has this or similar issues?

[selmaS]

  Oh ,,,that is not good, but I am sure there r other diuretics that u can try.....TOPAMAX may help with HA's but not the excess CSF that builds up.

Do keep us posted on what this new Dr suggests.

[klharmon]

Selma thank you for your response..my phone battery is almost gone..I had one diamox pill the night before my surgery..I had a pretty bad seizure that night so they are not sure if it was the chiari pressure or an allergic reaction to the diamox...haven't had one since..this new nuerologist recommended it until I told her that...I might go back on topimax or something similar but not until she sees my mri and pressure level

[selmaS]

  Hi and welcome to the Chiari forum.

ICP also know as PTC pusedo tumor cerebri can manifest post op...for those that may not have had it prior to surgery.So u r not alone in developing this post op.

Have ur Drs tried DIAMOX?

AS far as memory issue, I always had it and post op it seems to be more short term memory issues that plague me...I can still remember my older sisters first day of school, but do not ask me what I did yesterday...lol..

When I was in school, I used to have to write down all important facts to help  remember them...just reading did not sink in,....granted that was all b4 I was ever dx'd...but the way I had to handle it, along with notes posted everywhere...lol..

[klharmon]

also..has anyone else experienced memory problems since surgery?? I know my mind is not the same and seems to worsen more amd more..I'm in college for nursing so studying is becoming more and more frequent because it's getting harder to remember stuff...even simple things..thank you all for any help