Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
Hi All!
I was decompressed in July of 2009 - unfortunately the headaches and migraines and other symptoms have gotten worse. I was in the 20% category where the surgery didn't help, but I had to try - the headaches were so bad. I'm now on disability and can't work anymore. Dizzy spells, muscle and joint aches and pains, blurred and double vision are just some of my issues. I've had six lumbar punctures and my fluid pressures range from 31 at its highest opening pressure (24 was the lowest opening pressure I've had). My neurosurgeon has said he'd do a shunt.
I'd really like to hear from those of you that have had shunts - both the good and bad - so my husband and I can make an informed decision.
I've tried Diamox and can't take it and I just don't know what to do at this point.
Thank you all for your help and suggestions! I wish you all a pain free day!
I was decompressed in July of 2009 - unfortunately the headaches and migraines and other symptoms have gotten worse. I was in the 20% category where the surgery didn't help, but I had to try - the headaches were so bad. I'm now on disability and can't work anymore. Dizzy spells, muscle and joint aches and pains, blurred and double vision are just some of my issues. I've had six lumbar punctures and my fluid pressures range from 31 at its highest opening pressure (24 was the lowest opening pressure I've had). My neurosurgeon has said he'd do a shunt.
I'd really like to hear from those of you that have had shunts - both the good and bad - so my husband and I can make an informed decision.
I've tried Diamox and can't take it and I just don't know what to do at this point.
Thank you all for your help and suggestions! I wish you all a pain free day!
I've had both the lumbar shunt and the ventricular shunt. After one of my ops (Ive had about 10), I developed hydrocephalus but also had meningitis so they couldnt operate and had to do a lumbar drain to relieve the pressure. After releasing me, my headache symptoms didnt improve so they did a lumbo-peritoneal shunt.
My lumbo-peritoneal shunt didn't work, I had even worse headaches after the operation and basically couldn't sit or stand up for more than a few minutes without experiencing what they said were low-pressure headaches. They thought that the shunt was being too efficient.
I went back in for surgery to close the shunt and, unfortunately, they botched that one up a bit. My neurosurgeon didn't do it himself as it was considered more of a minor op. Basically, they couldnt find the thing and had to go digging around for it. In the end they did an x-ray (while I was still under and they had to drag my neurosurgeon out of his other surgery for advice) and found that it had wiggled itself loose and was just hanging around in there. So, they left it! Now, if I ever go for an x-ray, I look like a spaghetti junction with all the silicon tubes that show up.
Shortly thereafter they put a ventriculo-peritoneal shunt in. I was told this was the most dangerous of the ops Id had so far because of the potential for brain damage. They made me stay lying down for at least 24 hrs before the op so that my ventricals would open up. From my point of view, it was the easiest op Id had! The recovery was relatively easy and it actually worked! I know my surgeon used a very advanced shunt (this was in 2000) but couldnt tell you what it is. It basically only works when the pressure builds up enough.
It took me months, perhaps years, to figure out what the different types of headaches I was experiencing were. After so much surgery, there was a lot of muscular and nerve damage so I couldnt tell the wood from the trees.
Now, it is nothing more than a lump in my head that I have to warn hairdressers about!
If you have any other questions please let me know. I hope this helps :)
Do your research before accepting this last ditch effort by the NS.
Try it again beginning with very small dose and increasing it very slowly. You can get a pediatric syrup for even smaller dosing. The prescribed dose is too high for most in regard tolerating the side effects (as if you aren't sick enough) But, it you do it slowly and back off doseage till you build up some tolerance the drug will work and the side effects are minimal. Another thing you are not told is that the time release is better tolerated than the short acting tablets.If you can afford name brand, use it. And, don't take your last dose after 4PM or it may interfere with sleep. Drink OJ and keep up potassium. Takes you longer to get relief but you can avoid surgery and the shunt merry go round. Best to you.
PS Back off the LP's, really bad for you. Instead make sure you are not under or over decompressed or have obstruction.