Recurrence of Chiari malformation

I was diagnosed with CM about a year ago while Iwas complaining of the symptoms as I recall when I was 9 yrs old; I'm 31yrs old now so imagine how hard & difficult time I have had. Anyway I had the decompression last March 2014 I my neurosurgeon told me that I would gonna still have some symptoms residuals after all as there is no such "cure" for the CM. I still have the headache on/off, nausea sometimes, dizziness & numbness too but I've been told that all of those symptoms are a result of the cervicogenic headache where CM has nothing to do with it. I'm afraid to be honest to have it all over again coz sure I'm not going to go through the surgery.

I can believe what a terrible time your all having with your GP's, when i visit mine he literally waits outside the room to see me, he says im the only person hes ever met with chiari malformation and he seems to be proud of that. I can honestly say im not but i feel very safe with hi knowing that he i generally interested and listens and helps with specialists, im a 25 years old female and since the age of 2 ive been in and out of hospital with scoliosis, syrinx, myclonus(which they thought was epilespy for a long time) and chiari malformation! Ive read up a lot on chiari malformations and read a lot of peoples storys with it to see how there life turned out, one lady i found in america has had decompression surgery 8 times as it keeps regrowing, its very scary and a total pain in the butt that theres no cure, drs and hospitals are never nice but i do urge you if you not happy with your gp or specialist then move a there are drs out there that care i have 3 different specialists and i feel totally at ease with all of them(this hasnt always been the case and i got second opinions and am now happy with the care i recieve) If anyones in the UK London and surrounding areas i will happily pass on the names of my specialists for you to see. i travel 2 and a half hours to see them but its def worth it

My 12yr old daughter has Chiari. She was diagnosed at age 3..4. She was asymptomatic for close to 2 yrs with 40cm is chiari . I began having concern that something was wrong with her when she was a toddler. She was 100% a tip toe crawler and walker. Doctors in New Orleans Louisiana and Houston Texas said I was overly concerned and it wasn't until a complete stranger that happened to be a physical therapist told me to demand a referral to a physical medicine doctor. Eventually a minor car accident whereby we were rear ended aspirated the situation that lead to her surgery.

For 6 yrs she has had no problems but with the accident she began to complain of headaches and her legs falling asleep. She had a great neurosurgeon and thank GOD everything went wonderfully. She has other medical issues but as for the brain surgery she was doing great so we were somewhat released from neurosurgeon and only scheduled from every year to every 2 yrs.

About 4 months ago she would occasionally complain of headaches she describes as "brain freezes" like her brain is tightening (increasing in tightness) to a slow release. The pain would last for a few minutes it freezes her thoughts and she cant speak clearly. sometimes I would give her Tylenol other times she would just stop in her tracks for a few minutes and keep going. The same way she behaved when she was younger prior to surgery. She also was complaining of leg pains and her legs would often fatigue. After a month or 2 of these complaints I took her into her neurosurgeon he ordered an MRI and gave us about 10 minutes of his time to discuss the results which he said shows slight change in her chiari bBUT he wasn't concerned so come back 6mos.

2 months later the brain freezes increased in frequency. Tylenol nor Motrin provides any relief. She is not a complainer. A VERY resilient little girl and doesn't like to miss school. In the past week she has missed 3 days of school. We saw the neurosurgeon last week WELL we went in but he didn't see my daughter he sent in a resident. She told us the neurosurgeon doesn't think it's the Chiari. That we should see a neurologist and eye doc.

She had a very thorough eye exam and the eye doc says everything looks good. He is the only dr that understands her pain b/c he has a son with very similar issues and docs didn't acknowledge his pain either.

today we went to Emergency room b/c she woke up with a very bad headache. Still no answer next week we see a new neurologist I don't know what I need to do to acknowledge that my child is suffering I've read another blog and patients with chiari all have the same complaints. I mean I don't want surgery and she already takes a lot of medicine for other issues. Right now I just want then to not treat her like she doesn't matter and admit her headaches are chiari related! I'm sorry for such a long story but I want you all to really get the full picture

Can I askwhat type chiari malformation you were diagnosed with? I was diagnosed with type 1, 4 years ago and I have had decompression surgery. The one question I have asked all along is if it will ever go back to the way it was before the op. Every neurosurgeon I have ever seen and spoken too have all said the same.... That once the surgery is done tbe correction has been made, so although my symptoms may improve (which they did) it also means that it will not go back to the way it was before the op, simply because they have taken the offending bone away so therefore this will not cause a problem again. If you take a problem away then it won't bevthere in the future to cause a problem?? i only ask as recently I have been having more of the same symptoms.im trying to work out wether it is me panicking and being anxious which is making me think it is worse or wether it actually is the malformation and that the surgeons have all lied to me?