Does anyone have experience with this? I am really starting to worry/obsess about this result from last week.
Trying to understand more about diminished csf flow as well.
I don't have a syrinx at this point and am not sure no flow in the 4th ventricle can cause one or even hydrocephalus. I am trying to get second opinions before jumping into the PFD surgery. Tough to find experienced Chiari NS in Detroit area, though, they can all do this procedure and I if this is the year I'm stuck locally due to insurance. Unless I can convince HAP HMO that an expert would be in both our best interests.
Did u look into Dr Frim? I believe he is in Chicago.....most of us do need to travel to get to a chiari dr.As u said there r not that many, so we all can not have the luxuray to live near one.I am going to NY and I live in PA.
Blocked CSF can cause several diff issues...a syrinx to form...intercranial hypertension....hydrocephalus..and intense headaches. If ur blockage is not a total block I doubt it will cause the hydrocephalus, but it will cause issues.
Try sending ur copies to Dr Oro he will give an opinion and it may be able to be used to get the insurancce onboard with a specialist.
I haven't heard back from Dr. Oro, but did hear back from the chiari institute in Wisconsin. I will consult there as well and am definitely willing to travel. TCI-Wi were so nice to deal with, they are going to try to work the insurance issue since there are no specialists around Metro Detroit. Gotta love 'em...
As far as my csf, it states on the report "the CSF flow in the fourth ventricle and foramen Magendie could not be detected."
I am becoming over worried about that statement. I'm afraid if anything major will happen to me because of it before I see a specialist.
I think staying calm with this stuff is the best way or else you just cause more pain for yourself.
I was diagnosed in 06 with a 7mm chairi 1 malformation. I had the decompression surgery in 07.
My symptoms returned with a vengeance a few months after surgery. Severe headaches that often send me to the er, severe neck pain, and to many classic chiari symptoms to list here without leaving you all with a full-fledged novel, lol.
I have seen countless drs and finally found one who did a cini mri 2 days ago.
Now he is recommending a second decompression surgery asap as there is csf blockage seemingly caused by the chiari. The space that was opened in 07 isn't the same size as it was after the first operation- now it appears to have become smaller, and there is a csf blockage. THey want to remove MORE bone to decompress my brain further.
I am wondering if anyone out there has had to undergo a second decompression and if so, did it help? Did the symptoms return? And what could possibly happen if I decide not to allow them to do this 2nd decompression?
I've researched online but haven't had any luck finding anything regarding a second decompression surgery for chiari 1 and csf blockage, nor have I found anything indicating there to be a possibility of chiari herniation descending further down after a decompression, blocking csf flow requiring a second decompression...
Any comments would be welcome as I am trying to decide if the 2nd surgery should be done, and if so, how quickly I should be having it scheduled... I've been there once, lol... I want to know if anyone out there has had a 2nd decompression and benefited from it, or would otherwise recommend steering clear of a second operation.
We have had several members that have been decompressed more then once....the reasons stem from the same as urs to being over decompressed, the bone removed was too much and the member results in having cerebral ptosis....
Make sure this NS that is suggesting more surgery is also ruling out other related conditions as they can also affect how u feel and heal post op.
My cini mri shows a pretty significant csf blockage...
The NS indicated that the first NS did not decompress my brain enough the first time, stating the while he did decompress the lower tonsils by removing the lower pieces of skull, thus opening it up for better flow of csf, he did not take enough bone. He showed me images on my mri that showed how squished my brain still is above the tonsillar herniation... does that make sense?
While the first decompression showed increased space and movement for csf fluid around the cerebellar tonsills in 2007, the new cini mri actually shows that space as being smaller than it was after it was done.
The NS believes that the cerebellar tonsils may have 'fallen' further, and also seemed to think that the lack of space back there has my (cerebellam?)brain 'pinned' against my lower skull...it was this issue that he indicated was the main culprit behind this csf blockage.
I am worried, however, about them taking too much bone out... but I also don't really know what could happen if I refuse the surgery with my csf being blocked in 2 out of the 3 channels it runs through in the brain.
DO those who've had the second reoperation feel better? Did it helpwith the sypmtoms? Ie: Severe headaches and neck pain, dizziness, ect...
Thank you for such a fast response.
I honestly don;t know what to do!
Hi Ali, well one of the things is u can have too much bone removed which can allow the cerebellum to fall...this is called cerebral ptosis or brain slump, so taking more bone away may not be the answer, they may need to pt a sling of sorts to help hold the cerebellum in place.
Other related conditions can be Ehlers-Danlos Syndrome...which is a connective tissue disorder which can cause joint pain, hyper mobility, scoliosis, heart issues depending on which type u have, but also healing issues, med issues, absorption issues....
Sleep apnea, is another issue, tethered cord, syringomyelia,retroflexed odontoid.....
I am not sure I got them all, but u can see there can be a few things going on along with Chiari and many have similar if not the same symptoms....
But with ur issue that there was space and now the brain has fallen down, it could be cerebral ptosis...so do be advised to ask ur Dr about this possibility.
I will definitely do that. My dad asked the NS about brain slumping with the removal of more bone, and the NS said it 'shouldn't' be an issue... but I don't know why else that space would have gotten smaller. It could also be swelling? Idk...
What symptoms and issues does brain slump cause? Heaven knows I hurt severely enough now- meds don't seem to help very much considering I am on a really large dose of 2 pain meds...I don't want to trade one really bad medical issue for one that is equal to or worse... I did that the first time around and ended up with neck issues... and now that the chairi and csf issues have worsened significantly, combined with my neck problems,I really don't know if I should do the surgery or how damaging it could be if I don't.
Thank you for taking the time to talk with me...
I have to call the surgeon soon, but think I will schedule an appt with him again before committing to anything- that way I can ask him about all this one more time, as also about these other conditions.
The other thing is mayb consult with another NS one u know is a true Chiari specialist....there r many NS's that will do this surgery, but they r diff from those that specialize in they do research and only work with Chiari and Chiari related conditions.
I never had it, so reading thru some of the older threads on this topic may help u better with this, but I understand it can feel worse then b4 surgery and many of the same symptoms still plaguing u....
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