stage 1 of chiari malformation does it get worse

[lollypop28]

type 1 chiari malformation, does it get worse and is it heredity?

[waxlips55]

I just read your post. I hope you have reconsidered surgery by thi time. My son had Giari surgery when he was 21 yrs old. His complaint were pain severe in his right arm and neck which was twisting to one side. He was told by a Chiropractor that she would not touch him after Xray was done. Referred him to a Neurologist. This doctor told us that nothing could be done to go live your life. And, although he made very negative remarks about the claims made by Stanford Hospital regarding their ability to fix this condition.....he suggested we try  long to short,
that was 25 years ago! He was the first compression, removingthe back portion of top two vertibrae, opening the foreman and the used a donor dura. There was therefore no shunt required. In one month the cyst in his spinal cord was completely drained! We were soooo happy and relieved.
His life is normal, he still has some residual pain in his arm. He is a very active man living his life!
So please rethink surgery...find university hospitals that have these expertly trained specialists. It seemed that, 25 years ago , neurologists had attitudes on this due to lack of knowledge. I was told that a physcian may come across a giari patient once in his or her entire practice. Good luck and God bless.

[selmaS]

  Hi and welcome to the Chiari forum.

This is an older thread so you may want to post on a more current one or create  a new one.....

Many of us do have continued symptoms and issues post op as surgery is not a cure and so many of us do have related conditions....EDS being a connective tissue disorder could be a cause for your disk issues....

And a disk that is bulging can cause the same disruption to CSF flow and create many of the same symptoms we had prior to decompression....

I am not sure if a CT would show everything....it really depends on the strength of the machine and the slices and or angles they took....

Is this a spine specialist?

[punkin56]

I had decompression surgery for Arnold Chiara Malformation in 2007 and now am having really bad headaches with nausea and spells of almost passing out.  I had neck surgery on 2 ruptured discs in 2009 and in 2011 a MI showed the disc below those was bulging and there was restricted csf flow.  My neurologist just wants to a CT scan which I had one last week at the ER and nothing showed up.  Will a CT scan show anything?  Frustrated

[selmaS]

  Hi  and welcome  to  the  Chiari  forum,

  I  would  suggest  more  testing....even  tho  your  herniation  is  small, the  issue  is  is  it  creating  a  CSF  obstruction.,..??  Chiari  and MS  have  many  similar  symptoms  and  it  is possible  to  get  a Miss-DX  or  have  both.

  It  is  also  possible to  have  other  related  conditions  to  Chiari  that  can cause  many  of  the symptoms  even  if  the  herniation  is  not  causing  an  obstruction....Syringomyelia, Ehlers-Danlos,  ICP, POTS, sleep  apnea,  and  a  few  others....and  we  get  a  DX  of  chronic fatigue, and  migraines....

We  are prone to auto  immune  and connective  tissue  disorders....

May  I  ask  what  area  you  live  in?

[Cathy0]

I just had a cervical MRI and one of my spine.  I recently had surgery on my back and neck, and I'm still having pain both places, so he sent me for MRI's.  I also was experiencing numbness in my calves and feet.(Mostly in my left foot.)current  First of all you need to know that I had laser surgery which is minimally invasive. Well, I have a recurrent disc protrusion in my lower back.  In my neck there is a development of a left paracentral disc protrusion at c5-6 contacting and minimally indenting the ventral margin of the cord.  Also what I found very interesting was a minimal cerebellar tonsillar ectopia measuring 2 mm.  I know that's small, but I have read that it doesn't matter how badly herniated they are for the symptoms your having or not having.  I have been having all kinds of symptoms for a very long time.  I was diagnosed with fibromyalgia many years ago and I'm not even sure when I was diagnosed with chronic fatigue syndrome.  I haven't been sure that I really have fibro. for a long time.  To be honest, the more I talk to other people with it the less it sounds like me.  I really thought I had MS.  I had a brain MRI and it show two areas of white matter measuring 3 mm. but my neurologist believes they were caused by my migraines.  I also have a brain aneurysm that I need to get checked every 6 months.  I have no idea what if anything caused that.  But when  I started reading your question and answer forum, WOW!!  This really sounds like me too.  I don't know what to think.  I'm afraid my husband is going to think I'm crazy.  But, the doctors in our area stink!!!!!!!!!  And if I don't do my own research I feel like I will never find out what's wrong with me.  I have also been extremely weak off and on the last four years, but it's getting progressively worse.  These doctors are doing nothing to help me, and I have three children to take care of.  What do all of you think?  I am 44 years old.  I have always taken good care of myself and sometimes I think that works against me, because the doctors take one look at me and think she's not that bad.  I don't know what to do.

[selmaS]

  Those of us with Chiari are prone to auto immune disorders and connective tissue disorders.,...those can be checked with blood panels....as well as malabsorption of vitamins and minerals....

Which can lead to anemia....and I had been told many times over the yrs this was an issue for me...so I always have B12 on hand....and I try to eat more things with iron as taking iron is too hard on my system as I also have IBS.