3 years later and having new issues? Anyone else?

[fingerscrossed2012]

My chiari decompression surgery was in Dec of 2012 I was told in Oct 2012 what was wrong with me and with in 2 months I was in surgery. But here we are 3 years later and I'm still with a pain management Dr. I also see a Neurologist. A Dr for my depression. A Dr for my TENS unit. A Dr. for any and all kinds of injections you can think of....plus I have ALL kinds of IV infusions. I started having some kind of "seizures" within the last 6-8 months so now I'm going threw tons of new Dr's for all kinds of new tests to try and find why I'm having them. My headaches seem to have gotten worse in the last few months. My vision has been screwed up. Here lately it even seems like my ears feel like they are full of water? Leg cramps and feet cramps are unbearable. But as I tell my Neuro Dr all these things he just looks at me like I'm crazy? Is anyone else having health issues after surgery?

[KerriC1]

Well my dent probably isn't quite large enough to fit a fist in but 3-4 fingers wide and the entire length of my incision. I'm with Selma totally, it sounds like that's way too large. The cine MRI is a spinal fluid flow testing to see if you have any csf obstruction. It's like a normal MRI but they put a clip on your finger to monitor your heartbeat because csf pulses with your heartbeat. Sounds like you need to look into having that checked to me. Good luck!

[fingerscrossed2012]

I am female I have not done anything to my profile yet...lol. Yes your seizures are by the sounds of it what Im having and I did not have them before my surgery but now I am. Yes I have the dip in my head that you could fit a fist with wiggle room into as well. Im sore all the time with a stiff neck. Im going to ask a stupid ?? everybody talks about a cine mri what is that? I just had a head contrast mri Monday. What scares me is here lately my head has been hurting so bad I cant stand it...my throat is so sore and swollen. I hope you as well find answers...

[KerriC1]

My apologies fingerscrossed. I just assumed you were female but your profile says male!

[KerriC1]

Hi ladies! I was reading the post and thought I'd comment. I'm 9 months post op and have had this huge dent on the back of my head. I'm not sure if it's similar to yours but it's deff not supposed to be like that. Also, I had childhood seizures. It was long before MRI's so no testings were done on me for it. Thankfully I outgrew them. But before my surgery I had what I dubbed leg freeze where my legs just quit and I couldn't walk at all as if I were paralyzed. And when I was able to use them they were shaky weak and trembly and I walked in the sides of my feet. My husband would have to carry me to bed. This has started back again and it's frightening me. On top of all the other strange symptoms I'm just scared..... I have a cine flow MRI coming up soon and I hope and pray I'll find out what's causing all this. I pray you do too. It's a really scary position to be in

[selmaS]

  I agree with seizures you should not drive in town or out.....

That area sounds far too large......mine is two fingers in width....size of a quarter......

Sounds like a petti mal seizure.....I think that is what they are called my sister in law use to get them...and we believe hers were emotionally related....she has Downs and her parents just divorced when hers started....they subsided and the only other issue she has had was when her dad passed she started dropping to the floor and staring again....and it was short lived too....Not to say all seizures are emotionally related just think hers were....There are many triggers for seizures as there are triggers for Chiari symptoms.

[fingerscrossed2012]

Sorry Forgot to tell you....what they are calling "seizures" is My face will start to tingle and have pins and needle effect then my arms and legs go super heavy where I cant move them and I cant speak to anyone I can hear you and see fine.( We have been timing them) and I sweat just like I had taken a shower with all my cloths on. Once they are done it takes me a few minutes to get me P's and Q's together figure what day it is what time it is where I am and Im really shakie in the legs (which I have vertigo) they don't last long but they feel like they have lasted hours...

[fingerscrossed2012]

The Dr that did my surgery told me the place he removed was as big as the palm of your hand. If you take your fingers and push for the "dip" of the skull like where a normal person is in the center at the neck...mine is now in the center but almost even with the top of my ears and you can feel the edge of the skull if you use your middle finger place the knuckle on your hand at your center of you curve of the ear and then my finger nail is past the edge of my skull already on both sides. (make sense?) I'm driving but I have had 2 work physical and at both the ladies put in writing I should not be driving so I'm just waiting on someone to tell me no more...I only drive in town if I go out of town I'm the co-pilot...

[selmaS]

  How large of an area of bone?....wow that could be the problem....there is a condition called cerebral ptosis also known as brain slump when too much bone is remove the brain literally slumps down onto the spinal cord and brain stem causing many more issues then may have been present b4 surgery.

I did not have anything placed either ...as the muscle should cover over the area and protect it....but the area should not be that large.

I was on Topamax for a while post op....but am off  it now....it helped for  a while to change the type of headaches I got but the adjustment to that med was crazy.

My Dr did not want me driving until  I took care of a few other issues and to date have not....so I am still not driving....BTW- my surgery was 8 hrs....I had tissue harvested for my dura patch.....and was in ICU for 2.5 days.....

Did PT have you doing neck exercises?

The seizures are not uncommon and if you do have cerebrall ptosis that could be the reason for them......

[fingerscrossed2012]

I had a Laminectomy involving C1 and C2. I also have bone spurs at C5 and C6. Pinch nerve at C6. Along with Arthritis. I had NO conditions before surgery like I'm having. Only thing I had before surgery was blackouts, blurred vision and double vision. I started to have TIA which got me to having surgery to help the pressure as their thinking was all the pressure was causing the blackouts and vision issues and headaches. No patch. I have repeat MRI yearly. I just got the call today which I wasn't given much detail except from my MRI a year ago to the MRI I had yesterday there has been changes due to my Chiari? The surgeon did not replace the back of my skull he left it uncovered which just amazes me...LOL. He ended up removing a piece about the size of your palm or bigger My surgery was 9 hours long My hospital stay was 9 days my physical therapy was a year long and I was unable to drive for almost a year and half. I have always had the stiff neck and sore like you slept wrong on it all night long...but here lately its down in my shoulder and shoulder blades. My fingers tingle and are numb. And the "seizures" are new they started in the last 6 to 8 months??? Im to have a 3 day EEG next month which I get to do at home. Im due for a memory test the first part of June due to my memory is leaving me...(which I think that a lot of that is Topamax) :(    Thank you for talking with me...

[selmaS]

  Hi  fingerscrossed and welcome to the Chiari forum.

May I ask were ALL related conditions ruled out b4 surgery? I would think not since your DX and surgery were so close together.
Did you have a MRI post op? If so, ,at what point post op? Have you had one since?

And do you know what all was done during your surgery? Laminectomy, dura plasty? If a dura plasty was done what type of patch was used?

I had surgery in '09 and do not have the issues you are having so I know it is possible to get better with this surgery.