Quick past history. Dx'ed with ACM Type 1 in 2000. Had skull decompression(?), they chopped a hole in the base of my skull the size of a silver doller, and covered it with, I believe they said cow pericardium tissue? Then had decompression of C-1, C-2, and C-3. About 2 months post-op, informed neuro-surgeon that issues of dizzyness, problems focusing visually, focussing mentally, myofascial pain, and numbness with tingling sensations weren't really disappearing. He stated that I was gonna have to realize that the surgical procedure in a scence caused 32 separate "controlled concussions". Apparantly that's how many times they had to whack the scull to chip out the required amount of bone?

A friend of mine, who is a registered MRI/CT Tech, said that she believes that due to surgery I could either have TBI or PCS. However I've found nothing that would support that assumption in the past couple years.

I would appreciate any input, info, or a point to a site that might help clarify ANYTHING. LOL, I'm very confuzzled over this particular point. Thankyou all, and God Bless you!!!

Hey Morning,

I don't know if anyone here is going to know what ACM type 1 is, or what any of those C's are, but I wanted to get you some sort of a response.

As far as I know, no one on this board has had their skull opened surgically, so I doubt anyone will be able to provide you with specific anecdotes regarding what you're experiencing, but if you indeed did receive 32 "controlled concussions" it's perfectly possible that you may have PCS as a result of them.

Regardless, what seems relevant is that your brain was put through a great deal of stress, and it's yet to recover from that stress. I personally don't feel that seeing a neurologist does a great deal of good for people in most cases, but in yours I might advise seeing a neurologist or a neuropsychologist (or your neurosurgeon, if you feel that he could help you) just so you can receive advice from someone who would be knowledgeable on the subject of the procedures your body has endured and the potential side effects those procedures are capable of producing, and how quickly people typically recover from those side effects.

And God bless you as well...

abbreviations *blushes*. ACM is Arnold-Chiari Malformation. In my case, personally, my neurologist believes it was a birth defect, where a part of the hindbrain (cerebral tonsils) herniate past the base of the skull (forem magnum), into the spinal canal, often times blocking Cerebral Spinal Fluid flow, and in my case putting pressure on the brain stem and the nerve bundle at the base of the brain/spinal cord. The object of the surgery was to increase the area to allow for more even flow of the CSF. Therefore, they "enlarged the braincase" by using a mallet and chisel to make a hole at the base of the skull, and then shaved off parts of the first 3 cervical (neck) vertebrae... C-1 C-2 and C-3.

Thanks for your input, though. Will definately bring it up at my next appointment. I thought my friend was kinda nuts, but when I saw this forum here, I though, hmmmm, wont hurt to ask what people who have it think. It might not be a TBI or PCS, but at least it sorta makes sense.

Sorry about the ranting. But once again, thankyou for your answer, and God Bless you and yours!!!

Dee/Dawn/whoever I am today hehehehe

HI there. Oh my goodness equivalent to 32 concussions in a row - if that had been me I think I would be totally out of it. You are doing amazingly well. I think it would be extremely possible that you would have after effects from that and more than likely PCS. The only evidence I have of TBI/PCS other than my sympton is from a QEEG - maybe you could start there. Mine was done by a neuropsychiatrist. Once you have a reason for the symptons I found life a little easier well - that could be an exageration but it does help you understand!. Keep us up to date with progress. Lucy

I have had the surgery you speak of and know exactly what you are talking about. I have an ACM 2 and had surgery in 1996.

I really think that any residual effects you are feeling are a result of your ACM and not a result of any PCS or TBI, but I to would ask my doctor.

Take care!

Hi MorningBroken, I can't help with any answers but do want to say I hope you get some help soon and get to feeling better.You have sure been through a lot and deserve some smooth sailing. Gaye

Hi Morning Broken,
I am familiar with the recovery of the surgery you had and do understand that it could lead to PCS/TBI symptoms. I work as a nurse in ICU, where alot of the patient's have had nuerosurgical procedures. Everyone responds differently and it is probable that 5 to 10 percent of the patients have PCS issues in their recovery, just as 5 to 10 percent of concussion victims have PCS. I would start with rest and I bet you will improve with time, be patient and see neurologist to get it written in a report, so you can get the needed support and rest that you will need for recovery. I am sorry for your troubles but you should get better in time. Do not push yourself too much.
Nancy

Thankyou all so very much for the input and opinions. I'm afraid, however, that "needed rest" is outta the equation for now, LOLOL. Stay at home moms of a 13 year old and a boisterous 4 year old dont seem to have much time to rest. (Least wise I dont seem to find it).

However, being able to come here and listen to opinions and read some of other peoples stories has become something I look forward to every day. This place is wonderful, the people are wonderful, and the whole feel is just amazing.

Zelda, honey, if ya wanna, I posted about my whole Chiari experiance over in the Arnold-Chiari forum. If not, believe me, I understand LOL, I rarely go back to that time if I can help it. About 4 months of my life its so hard to remember correctly. Two weeks just totally disappeared altogether. But I've never met other Chiarians who have actually had the surgery before, so its a pleasure to meet cha!!!!

I should know something (at least via my neuro-optho) either Thurs. or Fri. called today, but he was called for a consult in NewOrleans and wont be back till tonight, or early Thurs. morning, and the girls in the office werent sure if he'd be in Thurs. or wait till Fri. So will keep ya'll updated as we dig through.

Once again though, thankyou all for your input, and God Bless you!!!

is the skull smashing totally necessary? They cant grind or cut they have to smash? really? Sounds like the standard doc doing it this way because thats the way they were taught, and thats the ways its always been done.