My doctors have told me that I have a basilar invagination, which means my odontoid is flexed outward and my brainstem is pushed to an angle.
I went to the Chiari Institute where Dr. Insinga wanted to put screws and rods in my head and fuse together my skull with my first two vertebrae because if I have a regular decompression, the odontoid will flex even more and cause more issues requiring more surgeries. Then, I went to John's Hopkins where Dr. Jallo says I dont need that at all, all I need is a decompression and he said he has done surgeries on patients with basilar invaginations and they came out just fine.
I don't know what to believe.
Has anyone here had experience with a basilar invagination and had a successful or unsuccessful operation?
Hi...I also have an issue with my odontoid...but, I did not need the additional surgery, and my NS was Dr Insinga at TCI...so, I am sure if he feels u need it, it is a good possibility u do....but, u have to go with ur gut as to which Dr u feel more comfortable with.
I was supposed to go back for more surgery for another issue, but the issue with my odontoid was similar to urs and the same Dr I had to reply.
There was another member that was told they needed a surgery like this, and it was not done, the member was only decompressed, later had to get a shunt, and then decompressed again, and then have this taken care of....too many surgeries.
I agree I would not want all that hardware, but, why else did he feel u needed it...do u have Ehlers-Danlos...most that have issues with their odontoid do.....
U may want to ask if u can speak to some of the patients of each dr that had these diff procedures to see how they faired....
And when u do compare what drs r telling u, make sure they r looking at the same issues...ie- if the first Dr feels the issue is bcuz u have another condition that will result in the odontoid to flex, then ask the second dr if he acknowledges the same condition and how will he treat that.
It is true if a person just so happens to have an odontoid issue and no ehlers-danlos then it may not need all that hardware, Make sure u r comparing apples to apples.
I have not been tested for ehlers-danlos but i do have a bit of hypermobility. how do you get tested for it?
and i brought the odontoid issue up to the second dr and he said there is no reason I would need all of that hardware and it would be fine. he was very honest with me about the success rate with his patients and it was very good. he's only had one patient who has needed a second surgery. he seemed a bit too laid back though, and the first dr seemed to pushy so i dont know what to do. so frustrating!
my symptoms started worsening at the beginning of the year and it keeps going downhill so theres lots of pressure.
Well I was tested at TCI by the NL up there, and I still have to go to a rheumatoid Dr that specializes in EDS...they do skin biopsies at that next level...but during a basic NL exam they will be able to tell if u have EDS....if u r hypermobile at all it may be they saw that at TCI and took that into consideration. Those with hypermobility and a retroflexed odontoid tend to also have cranial instability and that would explain the fusion and hardware.U may want to ask them to go over this with u again...just to see what they say......and they have several Drs, mayb Insinga is not the one for u....but TCI has quite a few NS's to choose from and u can request one.( at least I know others that have)
Sounds like u have not found ur Dr....I would suggest checking out another chiari dr....what area r u in?
There are a few Drs in the Baltimore , MD area, and North Carolina.....I mention them bcuz I know u went to TCI....but again where u r and where u can go, is something u need to decide.
oh! yeah they did talk to me about cranial instability. again, Jallo didnt seem too worried about it, Insinga discussed it with me though.
I'm in Alabama. so i've had to fly to see both of them. i think i might go to birmingham and see a doctor there. i've heard good things. i'm just worn out already from traveling so much to see doctors. i dont know how chiarians that have seen tons of drs do it!
i did go to baltimore to go to John's Hopkins but that and TCI are the only only places i've gone to see neurosurgeons.
Is there another local place i could get tested for eds? does it benefit me any to know whether i have it or not? i'm trying to do anything i can to find a way around having to get a fusion since it's so permanent.
U deff want to know b4 u have surgery as it can affect ur recovery....u can see a rheumatoid Dr for more testing.
I know there is one that specializes in EDS in Baltimore , MD...but u may find one in ur area.
I know what u mean as I was also told I needed a fusion, I have put it off and I know I am getting to a point that I may need something soon...but, I do not like that idea either.
Hoping they find another way to help.
I use a big fluffy pillow to stabilize my head on long car trips...other wise it seems to bobble around...and I get a bad HA....
Did u see our list of Drs?..In addition to the Dr in North Carolina there is also one in Nashville, TN.....for chiari....
Use this list to research Drs, not as a referral-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
Researching Drs is frustrating, but so worth it to finally have the right one....
My decompression included a fusion and took care of severe basilar invagination. Dr. Fraser Henderson in Lanham / Bethesda, MD strongly recommended the procedure and adjusted the angle to its maximum. It's still not normal but it is greatly improved. He diagnosed the EDS during the visit. I do not regret the operation. A decompression alone would not have addressed the cranial instability or the BI.
The surgery did everything that it was supposed to. My therapist (who is awesome, shout out) is pleased with range of motion and my energy has increased to more than it was before the surgery. My neck is solid, aside from occasional pain at the fusion site and increased intracranial pressure when I move it too much. The increased ICP, I was told, was normal during the healing process.
The challenge has been building up endurance and dealing with pain with the graft site (rib). But, I am so much stronger and behaving more normally, though not where I was, say 2 years ago. I'm figuring out why I have trouble still with the stupid graft site and left side.
I think the most important things to consider is the surgical procedure and the surgeon. I have read that basilar invagination surgeries have been done through the mouth, but mine was done posterially along with the decompression and cranial stabilization.
When I looked up basilar invagination, I learned that it could be fatal. I was told during the first appointment that surgery needed to be done asap. At that moment, I learned why.
Realize your post is a couple years old ...my son is 4 last yr he was diagnosed with basilar and chiari. Went to drs all over - check out Dr Mittler in New Hyde Park. He is the only one I trust with my son.
I am reading your surgery and mine was done the same. I was diagnosed with basilar invagination, Chiari 1, and two herniated disc. They did all my surgeries posterially also, that was three of theem it took 8 to 9 hours for all three at once. So I have limited motion of my neck also. I can move side to side about 10 to 2 on a clock and move up about three inches and down about two or three inches. I am driving with the help of the blind spot mirrors and a back up camera on my car. I have two sets of rods in my neck area first ones are about four fingers long from my skull down and the others are at the base of my neck is about two or three fingers long. So metal detectors love me, hahahahahaha.
Thanks for sharing ur DS's Drs name, has ur son had surgery for his Chiari and basilar invagination?
We do have a list of Drs thread where u can add Drs names once u had surgery and were happy with the Dr...please note Drs name info and if he only treats children or children and adults....and if he is a Chiari specialist.
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