Different surgical approaches from different Dr.s?

[Kaveman232]

Hello.  I have recently been diagnosed with Chiari 1 Malformation with 6mm tonsils. I do not have a syrinx.  I am having debilitating side effects. I told my Neurologist all my symptoms prior to MRI..headache, dizziness, cognitive issues, hoarseness, extreme fatigue all over, neck pain, facial numbness, arms, shoulders & hands numb and tingling, blurred vision, nausea, etc.  He ordered an MRI which revealed the Chiari.  He wanted to "watch" it and wanted me to take topamax for headaches.  I wasn't satisfied & went to see a Chief Neurosurgen at Emory in Atlanta since that's close to home.  This neurosurgeon review my MRI/reports, symptoms, etc. and said there was no doubt my symptoms were caused by the Chiari and recommended surgery.  His explanation of how the surgery went was..make incision, remove piece of skull for decompression, make incision in Dura to expose tonsils, use electro cautery (cauterize) the tonsils that are hanging to make them draw up to free up space for fluid to flow, then sew cadaver material (outside lining of a cows heart) in his words in place of in incision on Dura and sew me up.  The cauterizing thing scares me.  I asked if cauterizing that part of the brain affected anything & he said no.  I then went to a more local neurosurgeon where I live and got another opinion.  This Dr. Said the main thing this surgery would help would be the headache & dizziness.  He said the extreme fatigue was related to stress.  His approach/procedure to surgery was to remove the small piece of skull to decompress the tonsils, then he would do an ultrasound on the. Cerebellum/tonsil are to see if there was sufficient CSF flow and if there was, sew me back up.  If there wasn't enough CSF flow, then he'd make an incision in the Dura and sew a patch in place of incision in Dura to allow more room for the tonsils.  I asked him about cauterizing the tonsils and he said "no, no, that's viable tissue and we won't mess with that unless absolutely necessary.  So I guess I'm hung on which procedure?  Do I get 4th opinion?  Just wondering the different procedures others others have had done since all neurosurgeons have their own way.

[selmaS]

  Hi and welcome to the Chiari forum,

Well to answer ur last question first each Dr will have a different approach, some remove the tonsils all together and sometimes there is no choice but remove them once inside if they are wrapped around other structures.....

May will remove a piece of bone from the skull and also chip away some bone from C1 and C2....along with that adding a dura patch to give more room to allow CSF to flow.

It is important while considering all this to also rule out ALL related conditions as they can have a direct effect on how u feel and heal should u go forward with surgery.

Many with Chiari also have syringomyelia,,,,many Drs only check the cervical spine for a syrinx, but they can form in the thoracic and lumbar spine as well....plus by doing the lumbar it can help rule out tethered cord, and disk issues..... Then many have sleep apnea, ICP, POTS, and ehlers-danlos and if u do have that it is possible to have CCI and also reject the dura patch ,....for that reason my NS harvested tissue from my scalp and used that instead of cadaver, bovine or symthetic material...I also had my tonsils cauterized and it will be 5 yrs at the end of this month.

DO make sure ALL related conditions are ruled out and u trust and are comfortable with the Dr u choose.

BTW- cadaver is not from a cow, bovine is.....JFYI.....

[mmaggard20]

Hi. Not sure if my experience with Chiari 1 is the answer you are looking for. But, you might find what I've been told by two neurosurgeons interesting.  I am a 46 year old female with 15 autoimmunes, asthma, mrsa & Chiari 1. Last Aug. I was admitted with for what they thought was a stroke, but turned out to be MS. During the gamut of tests & imagery, they discovered the Chiari protruding slightly further than yours. I too suffer headaches, but more than that, fear the potential nerve damage the Chiari can cause, especially in light of my MS, which is a degenerative nerve condition. Because of my predisposition to autoimmunes, I am proactive in trying to treat the cause vs symptoms. While I cannot treat ms with a surgery, I know Chiari 1 can be done with a relatively simply procedure by inserting what is essentially a hammock under the toncils which simply left them out of the CNS & back into their place. My neurologist is the same Dr that diagnosed me in the hospital, and contrary to my wishes, he won't recommend Chiari surgery. I'm told that Chiari is a birth defect that normally is found by accident when looking for something else, and, it's not caused me problems thus far, and therefore won't likely be problematic in the future. I sought a second opinion from ucsf's world-renowned ms hospital and they told me the same thing. PersonIlly,I am disappointed in both opinions I received, as I would rather just fix it and not have to worry about it. I know that doesn't really answer your question. But, for what it's worth, both of my lengthy discussions with different neurosurgeons involved the hammock procedure and at no time whatsoever did cauterization come up.

[desertstorm2009]

Yes, they all do have different procedural preferences. This is due in part to their individual training and beliefs. Secondly, it is due to the I do usual needs of the patient. In my opinion, IF we are fortunate enough to find a GOOD NS, we pretty much have to trust their technique, that it will be what is best for us. We can't do their job for them. (Although sometimes I wish we could).
P.S. Lol Selma, thinking of the bull;-)

[desertstorm2009]

* individual (I hate auto correct)

[selmaS]

  Hi and welcome to the Chiari forum.

We have had several members that were 1- misDX'd with MS when it was ALL Chiari 2- members that had both....

I appreciate what u shared as it shows no matter our DX we have a run around trying to get answers and treatment.

@ Lisa....lol...yeah it is bull....lol... ; \

[Kaveman232]

Thanks for the replies!