Chiari Malformation Community
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Desperately looking for positive ways to live with Arnold Chiari

Hi everyone!  I've been reading other patients stories for awhile now, but this is my first entry.  I have Arnold Chiari Malformation, Syringomyelia, Scoliosis, and recently added Degenerated Disc Disease. I had the decompression surgery in August 2014.  About 6 months post op all of my symptoms started to return.  I have these horrible constant headaches daily, my left leg is always numb and has a burning feeling, memory loss, insomnia, and terrible back pain.  I've tried physical therapy and different medications with no relief. I forgot to mention the loud ringing sound in my head that never goes away.  My NS moved out of state and my neurologist referred me to a pain management doctor.  To me it sounds like those doctors would just mask the pain instead of trying to figure out the actual issue and work on that first.  I keep getting referred to all kind of doctors, and am still waiting for any sign of hope to feel even a little better.  This is effecting my quality of life and I'm miserable.  Is there anyone on here that has a similar story or positive inspiration for me?  Any advice would be greatly appreciated!
5 Responses
620923 tn?1452915648

  Hi and welcome to the Chiari forum.

Those with Chiari are prone to other conditions some related and they can affect how we feel and heal post op....so it is helpful to know b4 surgery if you have any of these conditions...we tend to be prone to auto immune conditions and connective tissue disorders....these can cause disk issues, healing issues , allergies to meds, GI issues,all over joint pains.....

Also it is important to know if the syrinx shrunk post op and remained small or non existent....if it came back that could explain your return of symptoms....

And what all was done during your surgery...do you know if you had a laminectomy and dura plasty during your surgery and if you had a dura plasty what type of patch was used?

I had my surgery back in '09..so 6 yrs ago this month....and I am doing better each yr that passes....I did not have a syrinx, my surgery was done to help one from forming...I do however, have tethered cord, Ehlers-Danlos, and CCI.....I do have symptoms due to these other related conditions...but since I knew about them b4 my surgery and my NS knew precautions were taken so surgery would not exacerbate those other conditions..

If you have not had these related conditions ruled out, that could be an issue or it could be the syrinx.....

I am not sure if your original Dr was a true Chiari specialist but since  you have had surgery most NS's will not touch you....you will need to be seen by a true Chiari specialist to see what they can do to figure out what is the  cause of your continued symptoms....
Avatar universal
Thank you so much for responding! I did have C1 and C2 removed and a mesh patch was placed, but I'm not sure what kind. My NS put a lumbar drain in afterward and it leaked 2 days post op while in the ICU. I'm trying to remember as much as possible to try to answer my own questions. My NS wasn't a Chiari Specialist, but I will be seeing Dr. Hefeez soon. How was your recovery? Did you have any vision problems after? There aren't many people II know that are familiar with this so its refreshing in a way to chat. Thanks again!
620923 tn?1452915648

  Are your  sure they did not just remove part of C1 and C2....they do not remove them completely.....if mesh could be titanium mesh?

My vision is not a major issue ...it has gotten to the point I need glasses...but I am sure that is age....I had some floaters b4 surgery and they resolved...

My biggest issues vision wise is my depth perception....and night vision...which I had b4 surgery and continue now....

Recovery took a long time....I remember having some oozing up into 9 months or more post op....

On the 28th I will be 6 yrs post op and I am so glad I had my surgery and would do it again if I needed it.
Avatar universal
Selma S,
It is great you got the courage to ask here. I developed symptoms in 2005 and saw like 8 Dr's before I could be diagnosed. I had decompression and duraplasty and a titanium plate put on my right side of brain/head??? Before all this I was a healthy lady. Boy have I seen my life change!!! I had no syrinx but the CFS fluid was blocked. I am a trained Psychologist and because of Chiari complications I lost my job since 2011 Nov when I had brain surgery. I have severe neuropathy and I have taken all sorts of narcotics and no help. I got nerve blocks shot through to my head at the base of my skull. I had a stimulator installed in me and it failed. I had spinal nerve blocks that failed to stop the pain. My right side is in pain daily. Then I changed Pain management Dr, and was put on Gabapentin for the Neuropathy. It has worked well until now it has started giving me side effects where my short term and long term memories are getting bad. I had to start wearing glasses due to my eyesight getting worse... I cannot believe Chiari has done this to us but remember you are not alone. We are on a journey and you just started. When I can find no relief I turn to prayer and music. I was denied social security benefits even when I went with a lawyer to a hearing. This is my new normal and you please find your new normal. I came out here on the forum looking for how to quit Gabapentin because I do not want to get Alhzheimer's. It is our health and we have to make choices that favor us if the Dr's cannot. I am looking @ B12 and magnesium as mentioned here to see if they are to help. Hang in there and be ready to fight.
620923 tn?1452915648

  Hi and welcome to the Chiari forum.

Have you talked with your Drs about stepping down off the gabapentin? I was on it , but not that long just a few months when I stepped down, ,as I was having side effects and could not continue on it.....

I also had to start to wear glasses but my Drs claimed it was age related...I was late 30's when that started...

I am also curious if you were checked for ALL related conditions to Chiari and if they may be the cause of some of your continued issues/symptoms and once DX'd with one of them, it may help your SSID claim.
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