Hello all.. I am wondering who has had the decompression surgery without having a CSF blockage. I was diagnosed and suggested surgery by a NS. I then went to get a second opinion. He ordered a CINE MRI and it came up negative for blockage so he wont do the surgery.. what are your thoughts?
I didn't have any issues with CSF.
I had the surgery on Sept 30th 2011... I had the basic boney decompression and C1 laminectomy. I had a 5mm herniation and severe symptoms, the surgeon wasn't confident that surgery would fix all of my symptoms (he didn't think the GI issues would go away) but he proceeded with the surgery and it did fix everything... I went about 2.5 years symptom free.
I had the surgery with a 17mm herniatian and had actually two desperate decompressions done by different doctors. 1st doctor removed C1 vertebrae and shaved down 2nd. And moved to Washington… I live inColorado (you def want to live here now that pot is legal lol) I found my 2nd surgeon on extreme home makeover the mother on the show was a chiari person as well. Neway they have a chiari clinic here now as well. Dr. Zorro preformed 2nd surgery. He removed 2nd vertebrae and shaved down the ogsibital(sp?) bone. And I’ve as well have had 2.5 years symptom free. Idk about you but I’ve gone back and forth regretting and being appreciative. I don’t faint as much as I had prior to surgery but I’ve also had a rough time being on pain management since 15 now 26… and an abusive relationship and divorce later. Also after much life trauma… house fire. Homelessness… and now know of family history of drug abuse and dependency… gosh trying to balance drug dependency and addiction is VERRY HARD.
*two different decompressions
Yikes sorry for typos. *Dr. Orro
I did not have CSF blockage, but had severe headaches, neck and shoulder pain, speech and memory issues, and other symptoms of Chiari. My neurosurgeon performed my decompression three weeks after my initial diagnosis because he felt that the pressure on my brain stem was too advanced to wait. I was so miserable that I looked forward to the surgery.
Wow, Megan, I'm sorry for all you've been through! But it sounds like you've come through with a great attitude, and that's all that matters!
Kathy said:
I did not have CSF blockage, but had severe headaches, neck and shoulder pain, speech and memory issues, and other symptoms of Chiari. My neurosurgeon performed my decompression three weeks after my initial diagnosis because he felt that the pressure on my brain stem was too advanced to wait. I was so miserable that I looked forward to the surgery.
I had decompression surgery without csf. But 3 weeks later my spine shifted and I had csf blockage. Went in to emergency surgery to straighten spine in neck. I was great after first surgery but after second. There was damage to the nerves in my neck. I lost all feeling in my left side. They thought I had a stroke during surgery. I have regained control and feeling everywhere but my left arm/hand. And have other problems also.
I had a CSF Flow Study which was reported as negative in any blockage/obstruction by radiologists and that particular NS at the time said same...no blockage (not sure she actually looked at the study or just read the report). Took that same study to a NS consultant and he agreed no blockage anteriorly but concerned posteriorly there was a blockage.
Same study reviewed by top Chiari NS and he said yes there was a blockage but surgery was not suggested at this time. During that appt. there was also a conversation that took place that CSF flow studies are not really the "gold standard" to diagnose a blockage.
A few things I have noticed in these recent years of trying to get a dx of what the heck is going on. NO at the top hospital in my state disregarded anything Chiari related even with the herniation and had no clue what was causing my problems other than migraines which were laughed at later by the specialist. The NS consultant was the best decision that I made as he knew exactly what he was looking at. Too bad he no longer performs surgery but if he wasn't a consultant I never would have had confirmation to the problems I was having. Sad thing is he used to run the NS department at that top hospital for decades. At least I sought out the right person. Finally getting to the Chiari specialist was amazing and although I was ready for him to perform that operation, I fully trust his decision that surgery was not necessary at this time and could actually make the situation worse. Although I do believe if I had surgery it would correct my problems.
What state do you reside in?
The Cine MRI is not the gold standard. The actual value is actually still being debated. There are other studies for CSF flow that are far more dependable. A cine MRI basically measures the flow per heart beat. To quote the fact sheet from CSF (link in the menu above) - Aim of surgery: return cerebrospinal fluid circulation as close to normal as possible, thus relieving symptoms
If there is doubt about the studies one should wait until they are repeated. The compliance of the intracranial compartment is too high, causing similar symptoms when the brain sags downward on standing, and floats back upward supine. A cine MRI wouldn't pick this up but a doppler might. When there is doubt there is a move towards other tests including MRI myelography or radionuclide cisternography.where tracer was injected into the lumbar region and an image is taken immediately after and follow-up images were taken 1, 2, 4, 6, and 24 hours after the injection. The only "gold standard" pretty much involves lumbar puncture.........
There are surgeons who will do the decompression surgery without low flow or blockage, but they are declining in number.
I had surgery and I never had my CSF flow measured. The neurosurgeon I saw felt that it was a redundant test and did not use it. There are other structures in the spinal cord that can be damaged by pressure.
Ihad the decommppression 2&1/2 yrs. so far things have been a lot better for me. It is not perfect by far,there’s some symptoms that are still with me.I had no CSF as far as my NS has found with a CAT Scan,there are ringing and gushing and some pressure that causes me to wonder if there might be some buildup,the ringing is really the thing that almost drives me crazy.In my case I had a craniectomy,laminectomy,1&2 vertibrae and dura.The herniation was almost a 0 and the surgeon that did my decommpression is one of the best in this field and that is the most important consideration.The NS needs to be a specialist in chiari. I would not have gotten help in my area.I had seen so many Dr.s and they were of very little help,in a period of 27yrs of searching.Hope you get answers soon,just keep looking for it,keep on keeping on!