Questions about surgery

[Eveinoda]

I had a blunt head/neck trauma about 1 year ago.  I was first diagnosed with depression because my feet started to ache so badly I couldn't walk, then I went to another doctor.  I was diagnosed with a 9mm cerebrel tonsil about 6 mos ago.  I am in constant pain.  No sleep.  Complete change of personality (I'm not nicer :D )  Loss of limb function.  Did I mention pain, all over.  Oh yeah, and I have memory problems.  My family physician and the MRI report are saying I need surgery.  My neurologist is saying that you are born with chiari malformation and other things sag with age but not your brain.  

So, now me and my family are trying to find information, ready ourselves, and find some sanity in all of this.  I am hoping for a few questions to be answered (or my sanity returned).

Does the surgery help?  (I have tried to find some statistics on pros/cons and results but am not finding alot)
Is there other ways to reduce pain besides medication? ( This bag is getting heavy)
What are some general questions to find out if my neurologist is the right person to be speaking to?

I have probably got millions of more questions but for some reason I think I lost my brain again and must start on the search to find it again....

[P.S. I am not trying to make light of chiari.  Sometimes you have to make yourself smile and add a little humor if you are going to make it through the next minute, hour, day, month... and if I can't make myself smile, no one can.]

[Eveinoda]

I read the poem by Dr. Oro and then read it to my family.  Its a beautiful heartwarming poem.

:) Yeah, I'm done with chiropractors.  

Thanks.

Eveinoda

[selmaS]

Hi....we have all asked that...if u didn't already read the poem at the top of the forum by Dr Oro.....
and yes it is in ur head...that is where ur brain is and that is where chiari is.

The problem u r having is uninformed drs.Once u get to a chiari specialist u will understand, and u will see a big difference.

And stay away from the chiropractors.

Good luck
"selma"

[Eveinoda]

To all,

Thank you for all of your comments.  I do not know if I have a CSF blockage.  I have had 3 MRI's and don't know if they will show that or not.  I am still waiting to go back into my neurologist to find out the results from her battery of tests.  After my first consultation she drew 11 viles of blood, did a oxygen test, some kind of electro test and another MRI.  (My mother is treated by the same neuro, she has fibromyalgia and aneurisms.) My primary said that she thought my neuro was looking for MS as I am having problems now with lack of balance/equilibrium but there are no lesions on my brain.  My primary is really pushing for the surgery and my neuro wants to find out more before she pushes me down that road.  I am getting quite confused by the two.

I have read many of the articles here and the one article I found a list of symptoms.  Me and my fiance were astonished that I could check off almost every symptom on the list.  In the last year I have went from someone who was highly energenic, physically fit, and level headed to someone that does not want to move because of pain, cannot physically perform 90% of the physical activities I have always done (because of a week of payback), my personality has changed completely, and I am being told that all I have to do is fall or get hit and I could be paralysed.   I don't like using medication and I literally have a bag full. I have gained almost half of my original weight when this started.  I'm at a complete bewildered standstill.  I can't figure out if the pain is just in my head and I need to overcome it or if I need to listen to the doctors, not lift or do physical exercise, take precautions not to fall or get hit, take my meds and wait to get the surgery so I am not paralysed.  

I was also told that I barely have chiari malformation I by both yet from what I am reading 9 mm is not "barely".  I was told by a chiropracter basically to "suck it up" when I tried to go for some relief from the pain in my body, especially my spine and neck.  (I didn't go back)  But all of this really does start a person to wonder if all of the pain is in my head or not.

[Shane99]

As a a general rule, Chiari is consider congenital. There are things that can cause Chiari-like symptoms, but basically Chiari itself is defined as congenital. Sometimes an accident "kickstarts" the Chiari into growth, but we've always had it. You mentioned a blunt head/neck trauma. I was in a car wreck about 6 years ago. These were probably what kick-started things.

It can also be considered hereditary. Not always, but it's not uncommon for a parent and child to both have this.

9mm is a pretty big herniation (just shy of a centimeter - Sherimom, 17mm is closer to 2 centimeters. 20mm is 2 centimeters). At that size it often starts causing a lot of problems, including spinal damage. This can lead to nerve damage and even paralysis.

I found out I had Chiari last April. I had a 20mm herniation and was operated on at my Neurosurgeons first available opening (3 weeks after first hearing the word Chiari).

The concept of brain surgery is very scary and can even be surreal, but I recommend it.

You can have Chiari your whole life and never even know it, but when it becomes asymptomatic, it's time for the operation.

It helps tremendously. Now, understand that there is no cure for Chiari. The surgery helps, but even it doesn't get rid of it completely. You can still have problems. But they are much less and the pain is much more managable, as a general rule.

I still have some problems, but mine was caught so late that some permenant damage had already occurred. This is why I suggest you have the surgery. The longer you wait, the better chance of serious repercussions.

The best advice has already been given (selma and sherimom:) - make sure you have a chiari specialist as a neurosurgeon. I see you're from Michigan. I don't know any Chiari Specialists specifically from around there, but surely there are some. I'm sure someone will pipe up with some info.

Another thing I advise people to do; Get a notebook. Write down all the symptoms, some may not be related, but you never know - for instance, swallowing problems can be a Chiari symptom! Write down all the questions you come up with. When you see your Neurosurgeon (and PCP), go down the list - this way you don't have to rely on memory. When he/she answers, write it down and make them spell any unknown words. Much easier to research when you know how to spell words like Chiari, syrinx, syringomyleia, hydrocephelus etc.

Another bit of advice, make sure you are happy with your Primary Care Physician (PCP). You're going to spend more time with this Doctor than all the specialists combined and he/she will be in charge of your over-all health.

[crystalhanzelka]

I was told by my neuro ( I do not have Chiari, I have pseudotumor cerebri) that Chiari is not necessarily congenital.  If the pressure inside your head gets too high, your brain can herniate. (like Chiari)....  

[sherimom]

I forgot to ask....where do you live?  A lot of people here have had experience with doctors and often know of specialists in different areas.

[sherimom]

My son is scheduled for surgery in about 2 weeks for a 17 mm herniation. He was diagnosed, I don't about 4 or 5 years ago originally. I was told it was about "a centimeter" and not a big deal if he is not having problems with it. Little did I know at the time that 1 cm is actually pretty large - "about a centimeter" isn't too far off from 17 mm. This was a neurologist that he saw at that time. He started having symptoms recently and I assumed that it had grown until this neurosurgeon said they don't usually "grow". When I checked the earlier report, I realized that it has been that size all along.
Needless to say, i was pretty upset. One thing that I learned from this is that he should have seen a neurosurgeon rather than a neurologist in the beginning.

I'm certain that a lot of people have had good experiences with a neurologist, mine just wasn't.  My current doctor is the one who said to see the NS.  

So, in my opinion, I think a neurosurgeon is the better option and one who is a specialist with this condition. Hope that helps, hang in there.
Sherimom

[selmaS]

HI again.....Chiari is congential....and there is no cure. Please read the welcome message at the top of the forum. It can explain alot about this condition. Shane99 wrote the message and I feel he did a great job putting all the info into a message that we can understand.

Ur herniation is considered large.The question is do u have a CSF blockage?
As to does the surgery help...everyone is different and it depends on when u have the surgery if u had any nerve damage already.

We have several scheduled for surgery, and some that recently had surgery. I am sure thay'll pop in and tell u about their experience.

Always number one is to get a chiari dr...and u have started that already. Next, get all the tests done to see exactly what is going on.....

Check CSF flow....look for a syrinx...tethered cord.

Please look thru the Health pages in the forum here for more info...and just reading thru the threads here u can learn alot!!

Godspeed
"selma"