Retroflexed Odontoid

[billyz123]

I finally got a meeting at The Chiari Institute with Dr. Bolognese this past thursday. He said that in addition to posterior fossa decompression, that I would need a couple rods screwed in to put my skull in the right place because of the retroflexed odontoid. I would lose 50% mobility in my neck. I have no problem with any of this but I had some questions...

Is this still the standard procedure for this type of case?
Have any of you had this type of surgery? How are you doing and would you recommend it?
Any other NS recommendations for this procedure?

Thank you<3

[selmaS]

Hi and welcome to the Chiari forum.

We do have a list of Drs that the members here have been to and liked, the list is not a referral nor an endorsement, it is here for u to use as a tool to research Drs.

See the Health Pages for the list and more info on Chiari and related conditions.  http://www.medhelp.org/health_pages/list?cid=186

[doodlebug123]

where is the best hospital /doctor to diagnose cranial settling or retroflexed to the odontoid .I have been to Cleveland clinic no help.I have such pressure in head ,Neck instability.Please  help me!! Had spinal tap in August 20012.Never been same.Have EDS!

[MicheleTxRN]

I agree the two are related..EDS and CM1...My point is that Dr. Oro's office may not be the best place for a 2nd opinion on this. Sexybare mentioned at one point she had the same, or very similar response from Oro's office ..and she also has EDS.  I would make sure your 2nd opinion is from someone you are certain is familiar with the relationship between EDS and CM1. I was disappointed in this aspect of my visit to Oro's office in CO...I just assumed all of this would be covered because he is a specialist. I was wrong.

[actressmouse]

Sorry...I haven't been on this board in a while....

Retroflexed odontoid process caused a "pannus" (a fancy word for a callous) to develop on my brain stem.  So, to put it plainly, my brain stem was getting compressed from the front (due to the Retroflexed Odontoid) and from the back (due to the cerebellar tonsil herniation-- mine was 6 mm but really, really FAT).  My brain stem on my last pre-op MRI looked like an hour glass.  I also have the connective tissue disorder, but will be returning to Dr. Francomano next summer as during our last phone consult, she said she may have missed something...now thinking I have EDS over Stickler's (due to no eye involvement).  

I do know that your odontoid should be parallel with your brain stem....TCI has a new protocol that adds the fusion procedure if the odontoid is retroflexed more than a certain degree.  Mine was WAY over, so that's why I had the added fusion.  

I hope this helps...I learned a lot by reading all I could from various sources.  The EDNF (Ehlers-Danlos National Foundation) has some great info as does the CSF (Chiari and Syringomeielia (sp?) Foundation - www.csf.org

Good luck to you!

[selmaS]

  Hi...I was told that EDS and Chiari go hand in hand and I had both and also had instability as a result.

I know u can go to wikipedia and find them say the 2 r related....and EDS info  sites as well.....

[MicheleTxRN]

SO does your mri report say the words "retroflexed odontoid and cervicocranial instability?  When I met with Kimberly in Dr. Oro's office..she shrugged off cervicocranial instability and said they had seen only one case of it every...and also said EDS has no significance in Chiari...Has anyone else had this experience?

[selmaS]

  Hi and welcome to the Chiari forum.

I did not see Chiari as a dx of urs, but I did see Menieres which Drs thought I had at one point too....did they rule out Chiari? Do u have copies of ur MRI and the reports?

RO or BI what ever u call it can be the result of having EDS, and not all are aware of this issue b4 they go for Chiari surgery, so I am impressed ur Dr has indicated this issue for u.

What info do u need I have posted what this is on another thread and can link u to it if u have not found it yet.

Know that u r not alone, and that we also have an EDS group on MedHelp too. : )

[HeatherElizabeth]

I actually just had a MRI of my brain done monday... it shows a RO... I know very little about it and trying to find info on it... my doctor also thinks i have EDS as well as other things going on... any more info or limks u might have will b great thanks, Heather

[actressmouse]

I am almost 7 weeks post-op PFD and fusion c1, c2 done at TCI.  I, too, have a connective tissue disorder, most likely Stickler's syndrome or a very weird presentation of EDS plus a retroflexed odontoid process.  

I got 3 other opinions before deciding on TCI and they recommended the fusion to the severity of the angle of my odontoid....TCI now has a new protocol in which patients with over a certain angle of retroflexion of the odontoid, they automatically recommend the fusion.  This is because they found that most people with the retroflexed odontoid and the connective tissue disorder end up needing fusion down the road.  I was initially scheduled for fusion to C4; however, once in there, my NS deemed it only necessary to c2.  Believe me, I asked A LOT of questions before going forward.  

I am now almost 7 weeks post op and I FEEL GOOD....I still have some surgical pain, but no HAs and my sleep has improved greatly.  Sorry to hear that your experience was so very different.  Everyone reacts differently to the surgery and heals differently.  I honestly would do it again...no regrets.  

[selmaS]

Hi and welcome to the Chiari forum.

Thanks for sharing ur experience with the fusion surgery as well as ur PFD.
I saw u also have EDS, which I assumed when I saw u had instability, so I wanted to let u know we do have a EDS group here on MedHelp u may want to stop by there as well as posting here : )

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

[chaserpaul]

I had a retroflexed odontoid & craniocervical instability - due to Ehlers Danlos Syndrome. I had my PFD done for my Chiari at TCI. They wanted to do the PFD & be cautious before doing the craniocervical fusion, to not be too aggressive. They wanted to wait a year. When they were doing the PFD they saw how bad my instability actually was, & I ended up having my craniocervical fusion 7 days after my PFD. I was fused down to C6 & lost most of my mobility. If they said you'd only lose 50%, & mentioned "a couple of rods", I'm guessing they don't want to fuse you too far down. That's a question you definitely need to ask. Each level makes a difference! I had an extension done by Dr. Henderson in Bethesda last year, & am now fused down to C7, the last cervical junction. Now I have practically zero mobility. I have a lot I can share with you about what it's like, so if you'd like to email me offline, feel free to. My email address is (delete all the spaces) atlanta vegan at yahoo *******. Good luck!

[billyz123]

I hope so too darling<3 good luck

[thrice3]

i understand! and yeah i had it done dec 13.. in terms of recovering from the surgery i've been doing surprisingly well. my symptoms havent really changed yet, but hopefully they will with time.

[billyz123]

yeah that idea freaks me out too. But so does most every waking moment at this point ugg :)

Thanks for all that info<3 So what did you end up having done? How have you been feeling?

[thrice3]

sorry i miswrote that. Johns Hopkins is ranked number 1 in neurosurgery and neurology. Dr. Jallo is in the top 1% of neurosurgeons in the nation

[thrice3]

I have a retroflexed odontoid also. I was recommended that surgery by a NS at The Chiari Institute. like selma said, you should definitely seek other opinions since thats a very serious and possibly unnecessary surgery. I ended up going to Dr. Jallo at Johns Hopkins. he is ranked number 1 nationally as a neurosurgeon and he thought it completely unnecessary for all the equipment... he is all about being minimally invasive. i also saw a third neurosurgeon who did not recommend it either.
maybe there have been successful surgeries this way, im not sure but the idea of the rods and permanent fusion freaks me out.

[billyz123]

No, I'm fairly certain I do not.

[selmaS]

  Yes, that is what I was told I would need, but was not done at the time of my decompression.....

From what I heard from others there is another technique out there, and I had limited mobility for yrs do to my condition and got so much more post op...and not sure I want to limit it again unless there is no other choice.

I also need to look into tethered cord release surgery....again, something that was scheduled, but changed....but I still have the issue...

Do u also have Ehlers-Danlos?

   "selma"

[billyz123]

thank you very much Selma :-)
btw -The surgery I was trying to describe - I think it's called craniocervical fusion?

[selmaS]

  Hi...I also had a retroflexed odontoid, but I did not need that done when I had my PFD...I was told I needed to have another surgery as I also had cervio cranial instability and a few bulging disks.

I also had my surgery at TCI...but, I would suggest u get another opinion as to how another NS might handle this...like Dr Henderson in MD, or Dr Rosner, or Dr Oro...any of them could give u a 2nd opinion....as all chiari Drs do not approach these surgeries the same and it may give u other options.

TCI does their own research and are top in this field for chiari...but, it never hurts to validate what u already know by talking to another dr....

  Not sure if that was what u were looking for, but the best I can offer at this time.

    "selma"