Decompression surgery is recommended for me at this time Because of my severe symptoms which are only getting worse and causing some neurological and physical issues. As many of you, I am researching the surgery pros and cons obviously. I am finding there are different opinions whether to remove the lower part of the tonsils during a decompression surgery and some doctors will only open up (remove) the skull bone as decompression surgery.
The neurosurgeons that remove the partial lower part of the tonsil say this is the best way so later on they don’t have to redo the surgery and there is better flow for the CSF. What is everyone’s experience or opinion on this? Obviously I have my concerns as many of you.
Thank you so much for your advice and honestly I don’t know where I would be without this site and the friends That I have made throughout the country. Have a blessed day.
By the way I did attend the CSF Southeast chapter in Miami Florida at the University of Miami neurosurgery department last week. It was very informative and interesting. Www.csfinfo.org
All three of the NS's that I went to for opinions, shrink the tonsils. They all recommended decompression, duraplasty, and tonsillar resection. My surgeon, Dr. Khaleed Aziz (Pittsburgh), said that decompression only, in most cases, will not correct the issue and restore CSF flow, thereby leading to another surgery. Also, if the tonsils extend down far enough or are fat (which mine were), that will block the CSF flow regardless of if the bone was removed or not.
It is a catch 22 because if they do decompression only, you are at risk for another surgery if problem is not corrected. If you have the duraplasty, then you are at increased risk for pseudomeningocele ( I have a small, stable 2 cm one) and also meningitis.
My NS did the tonsillectomy,duraplasty,and laminectomy,he said the tonsils have no real important function.Surely there must be some purpose if God gave them to us.Does anyone know what that purpose might be? I have been pleased with what was done in my case,it has been a God send.I did developed Dysautonomia it is a condition not unusual to chiari patients.I wish that wasn’t happening,symptoms are unpleasant but still better than the chiari symptoms,and can be treated.
Good luck in your search for answers,hope you find your way to a happier and pain free life.Praying for you.
My NS told me that the function of the tonsils is to move back and forth to propel the CSF. He said in many cases, they are not doing that, are are static. If they are above the foramen magnum (which is where they should be), they can move freely. But with Chairi, they are down in a crowded space where they shouldn't be, therefore they do not function properly.
My NS did the duraplasty and the laminectomy but left the tonsils alone. He said he decides once he's in the surgery whether to shrink them depending on how well CSF flow is restored. I've got to admit I was relieved that he didn't have to do anything with mine. It seems no one really knows their actual purpose but like Lynn said I feel that must have one.
I had the duraplasty and the tonsils shrunk. My feeling is that if you decide to go the duraplasty route, why not take all steps to get the complete package? I’m glad I had the dura opened because there were adhesions they found and were able to cut away.
Jozy, I think you are so smart for taking your time to really understand your options. Whatever you decide, I think the best decision you could make is to get the most experienced surgeon with Chiari. Different surgeons have different incidences of CSF leaks and infection. It is absolutely a risk with any surgeon, but some have less of an issue with them. I did not have a leak or infection, nor would I have ever known my tonsils were removed had they not told me. That being said I still have symptoms and don’t why yet. I think I have CCI but will find out soon. Hang in there friend!
As Jenn said and as you and I have discussed, knowing your options and getting several opinions is a good idea. You have to be 100% sure that you can trust and feel comfortable with your surgeon and your decision. It is interesting, but the "Chiari Surgeon" in Pittsburgh, is not who I chose. He wanted to operate without even ordering a Cine' flow MRI or really looking at my regular MRI and spent 5 minutes talking to me. I finally narrowed it down to 2 NS's that spent hours with both me and my husband on more than one appointment outlining everything. I called a couple of doctors that I know at the hospital and chose the one that they felt was the best brain surgeon in the area and who they would send their loved ones too. Having worked in the medical field for so many years, I know to always ask doctors who they would have do "their surgery, or their family members surgery" ---- that is usually a good way to narrow down your choices.
I didn't matter that I chose who is supposedly the best, I am nearly 5 months post-op and have a small CSF leak and a pseudomeningocele. I truly think this happened right after surgery when I vomited for the first 24 hrs. - I can't imagine that is good for the patch!!!! I had so many anti-nausea drugs, but they do not work - I cannot handle anesthesia and pain meds. I am hopeful and pray that this leak will seal over and the pseudo will resolve, but if for some reason I have to have another surgery, I will insist on a nasty Naso-gastric tube so that I cannot throw up.
Having said that, I think that you have to be prepared for anything. Also, remember, the surgery is not a cure. I think all most of us want is to feel better and get some normalcy back to our lives. I know that I will never be 100% and I didn't go into surgery expecting that. Although I have this pseudo and still have dizziness & vertigo (which may or may not get better), I DO NOT have a headache every day. Believe me I am so grateful for that. To the surgeon, that means success. Also, he saw the CSF flow restored after he shrunk the tonsils, and that is the goal.
So, Jenn had no complications from surgery, but still has symptoms. I have a pseudo, but 1/2 of my major symptoms are gone. Everyone's outcome is so different and there are no guarantees. It is a tough decision to make and the recovery is not easy. You have to get to the point where the pros outweigh the cons (at least that is what I had to do).
I having been praying that you find the right surgeon and make the right decision. A well informed patient is the best kind, and that is definitely you. You have to be the advocate for your health as no one has as much at stake as you do.
Cranio cervical instability- in the setting of a connective tissue disorder (this why it’s so important to know if you have EDS, or hypermobility syndrome) lax ligaments can allow abnormal movement of your vertebral joints and cranio vertebral joint. With this abnormal movement there can be cord compression,and or medulla compression. Basilar invagnation is also considered an instability- odontoid angles into brainstem. Abnormal clivo axial angle- odontoid angles into brainstem, brain stem and cord Become stretched. These problems can all mimic Chiari symptoms. If a patient has CCI, a decompression alone will not relieve symptoms- a fusion must be done. A fusion and decompression can be done in one surgery/ anesthetization. A video with Dr Henderson on the CSFinfo.org site states that an estimated 30-40 % of decompressions will “fail” due to untreated/undetected CCI.
You can google the Brighten test and the Beighton test.
Plain X-rays and MRIs are not sufficient imaging to determine if you have this. You would need: a physician who adept in this diagnosis (not all brain surgeons do this), upright flexion extension c-spine MRIs, and rotational neck CTs.
My tonsils are 2cm, I asked my pcp if I could have them removed & he said, not unless I had bouts of strep throat, etc. I had a stroke/TIA, last May, I wonder if this had to do with that. I truly need a 2nd opinion. Hope everyone is having an easy day.
jenn