I knew nothing of this congenital deformity I have been living with until May of 2006
I had Chiari surgery in 1974 at age 17. I never noticed anything different while growing up till I was 13. I think what started
things was a very hard hit in football practice in 8th grade I wound up with many problems up till age 17 between my Jr. and
senior year they found the problems after being misdiagnosed by several Drs. the headaches were just terrible plus other symptoms
which were caused by chiari. The surgery which was quite complex but was very successful for many years. I was told by my NS then
that I would learn my limitations in life as I went along. Lifting things were always very difficult but I continued to work but
things got more difficult as the years went on.
In the year 2000 I went back to see my NS who did my surgery I told him things were changing for the worse he gave me injections
in my neck which helped little or none. He reminded me then that he fixed things as good as he could and that things were quite
complexed. He retired shortly after that things continued to worsen but I continued to work my balance, dizziness, legs, neck,
and back continued to get very bad along with Fatigue.
I went to my new NS as referred to by an eye Dr. who seen a problem with my eye he had ordered a MRI when I told him of this surgery
I had called Chiari in 1974 which I still new nothing of I went to the NS but he wanted me to have a complete spine MRI (I just had a
brain) I did he noted there were problems related to the surgery in 1974 saying I may need another surgery saying something about a
Syrinx and basilar invagination.
He sent me to Indiana University Medical Center they also noted the problems and did something called Digital x-rays which also
noted the problem of Basilar Invagination problem saying the Odontoid (C2) was superiorly displaced possibly from the
Basilar Invagination they decided against surgery at first they talked about putting a shunt in there to divert the spinal fluid
that is occluded because of the Cervical Syrinx.
I had an appointment to go to The Chiari Institute in N.Y. in Nov.2006 but was forced to cancel it due to my Ins.
(Medicaid of Indiana). Due to my problems with Chiari I haven't been able to work since Feb. 2005 the headaches get terrible
when standing over ten minutes I also get very dizzy and can not lift hardly anything my legs ache a lot and I am very Fatigued
I also have troubles sleeping because of my neck I do take a sleep med. which enables me to sleep 5-6 hours soundly most nights
as apposed to waking every hour on the hour without which made me feel more tired then when I went to bed to go to
I am just hoping for a better quality of life and the ability to walk much better then now (my balance is so bad I stagger
like a drunk man) when I get up in the morning my mid to lower back feels as if it has a knife stuck inside it. My neck is very
stiff and aching and burning. As the day goes along I get so fatigued my legs feel as though they have weights attached to them
and my neck feels as though it has a concrete block on top of it. I walk about a 1/2 a mile most days but I have to walk at a slow
pace if I walk at a normal pace I can't walk but about a block then I must rest because of dizziness and achiness in my legs.
The Doctors say I have a lot of nerve damage due to the pressure on the brain stem (Basilar Invagination) also the Cervical Syrinx.
Chiari Surgery 1974 (At Age 17) : Suboccipital Craniectomy : Removal of the Arches of C-1 and C-2 : and also the Scarred Cerebella
Tonsils and did a Wide Graft of the Area. It was also assumed I had a Syrinx but of course at that time there were no MRI's available
so the status of the spinal cord was unknown. I do think this Surgery was very successful and definitely necessary.
I've never posted on the CM forums before, as my son was just diagnosed in February, but I would like to share his story, as
his case is very complicated and may help others who are experiencing symptoms. Here it goes...
My son, Alex, was diagnosed with Arachnoid Cyst in left middle cranial fossa at age 3, after vomiting since age 4 months and
misdiagnosed several times w/ several diseases to include chronic ear infections, tonsills removed, adenoids removed, asthma, etc.
1st surgery was a fenestration to drain arachnoid cyst in 2/05. Fenestration failed (closed back up), he became sick again
with extreme episodes of vomiting, severe headaches, lethargy. His NS placed a CP shunt 4/05. In July 05, Alex became very
ill with extreme episodes of aggression, emotional instability, extreme headaches, nausea, vomiting. At this point, Alex
was unable to leave the house, if he were to stand up/sit upright, he would have severe pain and vomiting. Surgery in 8/05,
after lumbar drain revealed increased ICP and cisternogram revealed fenestration remained closed and CP shunt had come out
of his cyst draining his sub arachnoid space. Surgery in 9/05 followed to place LP shunt after Pseudotumor Cerebri was
diagnosed due to shunt tap of CP shunt and spinal tap revealed 2 different pressures indicating "global" pressure as well
as "cyst" pressure. LP shunt revision completed 3 weeks later in 10/05, codman programmable shunt placed. Alex did really
well for a while with only vague symptoms every now and then...7/06 required LP shunt revision due to shunt malfunction.
Again, Alex did well for some time period until he became very ill with same symptoms as increased ICP (nausea, vomiting,
aggression, behavioral changes, severe headaches worsened by any activity) - LP (his 18th spinal time) revealed over draining
and yet again another shunt malfunction. Surgery scheduled for 2/14/07. MRI prior to surgery (for yearly MRI) revealed
Chiari Malformation type 1 13mm. LP shunt revised 2/14/07, programmed to 16 (his last setting where he was doing good)
...2 weeks of misery followed, spinal tap revealed still overdrainage - pressure at -10 in standing position @ this time,
codman shunt programmed up to 20 @ this visit - symptoms continued with same as before plus additional symptoms to include
severe headaches, nausea, vomiting, photophobia, sensitivity to sound, blurred vision, numbness/tingling in both arms,
extreme weakness (mostly legs)...f/u appointment with NS found weakness to right side of body, scheduled CINE flow MRI.
CINE flow MRI indicated little to no flow around brainstem due to Chiari Malformation with decreased function of the pons
and cistern "problems". Surgery in 4/2/07 to clamp off LP shunt. His Chiari is considered acquired due to over drainage
of LP shunt, by clamping off LP shunt, he is now suffering from symptoms of increased ICP, as well as Chiair Malformation.
Hopefully, with some time, the Chiari will reverse after the over drainage was stopped. He still has a functional CP shunt
to drain cerebral spinal fluid, as well.
Well, that is my son's story. He is now 6 years old and still suffering most days with severe headaches and nausea,
as well as other symptoms that are very worrisome. Please email me with any questions. I only hope that his story will
help others not to have to go through what he has been through in his short time. Prior to being properly diagnosed with
Arachnoid Cyst, he had 2 surgeries that were completely unnecessary due to misdiagnosed with Ear Infections (Ear tubes
placed twice @ age 7 months and 17 months) and tonsillectomy and adnoidectomy at 17 months. Thank you so much for doing
everything you can to bring awareness to this condition. Take Care.