Titanium plate reconstruction - go or no

[Sabbynal]

I have read about the titanium plate that is used by some NS to reconstruct a sort of "false skull" that covers the decompressed area in the CM1 decompression surgery. It makes sense to me that it would add protection, and help with the human barometer sensation of having your brain hanging out.

The NS I saw today does not use the technique. I am trying to get another consultation with a NS who specializes in CM. My question is, for those who have had the decompression, and maybe the titanium plate too, what are teh pros and cons? Why wouldn't al doctors do it if they could?

Also, doctors seem to differ in opinion of electrocautery of the tonsils in some cases whereCSF flow is especially a problem. It leaves me confused, and I am a CM1 patient, I didn't need more confusing, really.

Now that I know decompression is inevitable, I am curious to know what to look for in the NS who will do it. I have checked the lists. The one I saw today is not on it, though he does about 15 a year in this area. I don't want to rush into a decision if better choices are out there. I am trying to get in with a Chiari specialist in Arkansas, but I don't have all the tests he requires in order to get an appointment, (working on that). I have also submitted a request to see a doctor in CO, and I should hear from them next week re:scheduling.

Please advise if you have any experience with some of the side effects/outcomes of the procedures in the surgeries. It's mighty helpful to have someone's real life experience to consider.

Hope you are having a "good day".
Thanks, Abby

[Karma1973]

I totally agree with several comments re: finding the right NS AND using a plate.   I went 3000 miles to see and have surgery by the pioneer of the plate: Dr. Oro in Colorado.  He actually did my 3rd surgery just about 3 weeks ago.  My first surgeon convinced me it's a "super-easy" surgery and that 90% of my symptoms were from fibromyalgia, not CM 1 (after my symptoms were worse a few weeks post op).  He literally nearly killed me.  I am lucky to be alive. The worst part is that I am (or was) a surgical nurse practitioner who specialized in belly operations. I listened to another surgeon and didn't research how many chiari surgeries my first surgeon did each year.  It turned out that he had only done a few!!!!  And he let surgical students do most of my procedure.  I will not name names, but just say that you MUST research the NS and RUN (as someone else said if they say it is an easy surgery or will cure you).  After becoming septic and having pus on my brain, I nearly died.....then after a second surgery by my surgeon's partner, another MRI with CINE showed 100% CSF blockage after less than a year......and my old NS said it was "read incorrectly by the radiologist."

I then did real research and suffered with worsening pain, vision worsening, nystagmus, tinnitus, balance problems, memory problems, inability to understand spoken language, etc, and found Dr. Oro in Colorado who agreed to see me after faxing all my records and most recent MRI with CINE (6 months old at the time).  By this time, my pain doc and PCP were begging me to find the right NS ASAP before I lost so many neurological functions permanently.  Dr. Oro is the best in my opinion.....and you will find so many others with the same opinion.  He does these surgeries every day and knows what he is talking about.

I am now nearly 3 weeks out from my surgery and I am almost 100% symptom free!  Of course this probably isnt standard......but my vision is cleared up, NO MORE HEADACHES, good balance, improved memory, better word finding, no more swallowing or breathing difficulty, etc. Even longtime friends have noticed the changes in me.

I wish I had done my research first......and had Oro first.  Now.....for my note on the plate.  One of my pain causing issues was that my muscles had fused to my dura and I could not move my neck without severe, shocking pain.  washing my hair was a nightmare!  So he put the plate in....and found that my previous craniectomy was large enough to require a large plate to prevent ptosis.  

Beyond his surgical skill, he will gladly take the time to answer every single question you have.....and never acts like its a bother or waste of time.  He acts like a normal, sweet human being and treats his patients with compassion and concern. oh, and he takes all of your concerns seriously.....unlike some surgeons I've had or worked with.

I don't know if I will ever work as a nurse practitioner again.....which saddens me so very much.  But I have my LIFE! And I have HOPE that I have a future that wont involve daily pain meds!!! Im already weaning off my meds (under the direct supervision of my pain doc)........and that is so darn exciting I can hardly stand it!  Imagine being able to take Tylenol or Ibuprofen for a "headache"!!

PS: I am under no delusions that I am cured......but if my pain no longer requires narcotic meds, then I am damn excited!!!!!

[*Stormy*]

I'm not sure if this is the same thing but in a book I read, they is a new procedure they are experimenting with, putting a mesh plate in place of the skull. The reason is not for protection but to give the neck muscles a place to reattach to. One of the complications they are finding is that sometimes people's neck muscle attach directly to the dura causing muscular neck headaches. I can definitely vouch for that as I have them all the time HOWEVER I have no idea if that is the cause, I have to wait to have my MRI. As far as the plate goes though...I am with Selma, I have only heard that being used in a second surgery to fix the problem of too much skull being take out. Pam is right too, if you have the option of getting several opinions or seeking out a true Chiari Dr, then that is what I would do.

Good luck!
Stormy

[pamk5]

Hello,

I am scheduled for surgery next Wednesday with what I consider to be a pioneer in the field of CM.  He does not use a plate.  He also does disect the tonsils.  What I look at as far as NS goes is have they been published on the subject of Chiari? Will he give you a list of patients who have had surgery and are willing to share their good experience?  In his clinical interests does he list Chiari as his specialty? 15 surgeries a year doesnt seem like alot to me. What is his complication rate? If he tells you that surgery will cure you.... RUN!  If he tells you this is an easy surgery.. you know just open and shut... RUN!  Dr Heffez is in Wisconsin if that is close enough for you?  Or Dr Oro in Colorado?  Just suggestions!

I hope this helps.  Good luck!

Pam

[selmaS]

  Hi, I had the decompression and no titanium plate.....if the surgeon knows what they r doing, and the bone that is chipped away is not too much a plate is not needed.The plate is more in need for re-do's for cerebral ptosis.

I do know of someone that has a plate and needs to have it removed as it is causing problems post op.

U also want to rule out EDS, those with it may have issues with rejection and a plate will only cause infection and other problems.

"selma"