Medication and "acquired" type 1 CM questions

[Roxy4356]

My question is this.  Has anyone else had good relief of symptoms from an antidepressant called venlafaxine?

I've had excellent results.  It took about a month and my headaches did some weird changing from what they were to something else until now they are VERY manageable.  It has also helped with my drunken gait, I'm able to walk straight again and not fear that I'm going to fall down the stairs without holding on securing or bracing my shoulder against the wall.  Not to say there aren't some other side effects but my quality of life has greatly improved.

Here is my story as short as I can make it.  I've struggled with symptoms 10-15 years.  3 years ago I had a seizure or so they say, I came to, listening to my son talking to the 911 operator and cute firemen coming to my rescue and again fainted or whatever in the hospital and was sent to the NL.  Had tests done to find a baseball size cyst on my tailbone on the underside so in my stomach cavity.  Brain showed nothing.  I had a shunt put in since they said they couldn't fix it, to try and drain off the CSF from the cyst into my abdomen. Symptoms increased tenfold until this August when I returned to the NL and said I can't live with this anymore.  She ordered a repeat MRI and my brain had herniated to 9mm.  So now I'm told how I'm such an unusual case and I have "Acquired" type 1 CM.  I think I have been a type 0 and the shunt excelerated my herniation. So now I'm doing some more diagnostics to help prepare for the shunt removal and what to do with the cyst and stop the herniation (the shunt is acting like a vacuum pulling my brain down) and then decide on brain surgery.

I understand that surgery won't "cure" everything only stop the progression.  That is why I mention the antidepressant as it really has helped me feel half way normal again (not perfect but way better)  

I so appreciate this forum and people discussions it has helped me along the way to understand this thing called Chiari, I only wished those that have improved spoke up more to give encouragement to those facing a new diagnosis.  Hearing only the bad and worse just makes you want to run and hide although its helpful to know things can go badly too.  ok thanks for reading my little blog and responding to the questions.


Does anyone else have this type of problem?  If so, what treatments have you done to help with your problems?

[Roxy4356]

thanks Selma and linnielou for your comments.

they think the shunt is acting like a vacuum so I'm assuming acting like a tethered cord.  They have not been specific.  I think the cyst is a syrinx (but I am not a doctor)

myleogram is on 10/28/11, I see Dr on 11/2.  I will post my results.

If anyone is curious I have posted my 2008 and 2011 MRI pics of both my brain and lumbar cyst.  its interesting if nothing else.

[linnielou232]

I just want to say WOW your right.  I have never heard of this before, and I pray that you will find the right doctor to help with your issues.  I was really scared when I first came to this site to looking for answer's, but for me.  I am so  blessed that I have a Chairian family to turn to and talk to.  We all understand what you are going through.  Even though your's is a little different.  It's still the same.  We are here for you.  I wish you the best and hold on to your faith.  You are at least now finding some answer's.  There is a doctor out there who will be able to help.  You just have to find him.  It's like hide and seek.  Not funny, but it seem's like that when you are trying to find some answer's.  I had a friend help me with this saying" Don't give up, and keep being persistant".  Then you will find the right doctor.  It worked for me.  I pray it works for you.  Good luck.

[selmaS]

  Well the acquired chiari is assuming the Drs r right and that this cyst developed when u fell.

This cyst do they say it is causing tethered cord*?....I have heard this can happen as well from an injury or scar tissue....or is that ur syrinx?Sorry I am confused.

Please keep us posted on how ur CT myleogram goes.
    "selma"

[Roxy4356]

I was really hoping there were others like me as there isn't much if any information out there on what I got.

I have no dimple.

21 years ago I fell on my tailbone (which is not straight and neither is my neck) and I thought maybe I had micro tears from that fall that caused the cyst.  the doctor insists that I most likely have had the cyst since birth and I said but 21 years is a long time too, to have developed this cyst.  Although he agreed he's standing firm that I was born with it and it probably has just progressed as my symptoms have and the herniation was excelerated by the shunt causing even less flow.

My doctor says he has treated some Chiari patients although when I googled him it doesn't specifically say he is a specialist in it but does say a specialist in epilepsy.  He and my NL seem to be on the same page and say alot of the same things that I see you and others encouraging us to ask about.

I do feel confident he can handle the issue regarding my back and cyst.  When we move on to discuss my brain more I probably will get a second opinion as I want the best possible outcome when it comes to surgery.  I still have lots of "interview" questions for him like exactly how many CM patients has he operated on as I don't want to be a test model for him.  I'm already a good candidate for a "case study" since I'm rare.  lol  

I was just hoping others had good reviews regarding this medication it has nasty going off the medication problems and I have worried about the symptoms returning and the drug being ineffective but so far so good and that is good for now.

I've had brain MRI's prior to shunt surgery in 08 and after in 2011.  I've got lumbar MRI's from 08 and 2011. I have some xrays, cine MRI and now I'm getting a cervical MRI to check for sprinx (spelling isn't correct) and an xray to show the doctor exactly where the shunt is as he isn't the same NS who put it in and finally a CT myleogram.  It will involve puncturing the lumbar and injecting dye so they can determine the cyst communication better he feels it may be a different cyst than what I was originally diagnosed with and if it is then there would be different options to decide about.

think that answered all your return questions.  I only hope this helps others like me searching.

[selmaS]

  Hi and welcome to the Chiari forum.

Well, u r the first member here to have acquired chiari in this manor...most of us have congenital chiari...which makes it a bit diff for us....

I have to ask, the cyst at ur tail bone, could it have been bcuz u have tethered cord?...do u also have a sacral dimple?

Do these Drs know how to deal with chiari?

  I wonder since u r saying the treatment for the cyst caused the chiari...I know if u already have chiari this can happen from a LP if it is done incorrectly....

Surgery is not a cure , but a means to restore flow...and depending on  how long flow was blocked will also affect whether or not perm nerve damage happened as a result.....

Most meds given r in the family of antidepressants....but, they do not help all that much...some may help at first and then lose effectiveness.

  Have u had a MRI of ur lumbar spine recently?

    "selma"