Experiences with Dr. Oro

[ninigrli]

I saw Dr.O last week after no relief from previous Decompression surgery a year ago with another NS which included (bone removal, C1, Duraplasty and titanium mesh “not the plate but the mesh”). Actually I was better off before surgery.

Short of a long story, a 3D CT scan of my skull was ordered, Neck Xrays was ordered by NP and CINE MRI was ordered by Dr. O

Bone/Skull
Dr. Oro measured the amount of bone removed; slightly more than he removes but no great concerns. I don’t know if the would be a concerns later.

C1
Dr. Oro also measured the amount of C1 removed, slightly more but no concerns.

Dura
I have a bovine patch placed. Dr. Oro reports that it works for some people and does not work for others.

Titanium Mesh
The mesh placed only covered the upper portion of bone removed and not the entire bone. Actually, it didn’t even cover much of the upper opening. I inquired about this because I have real concerns since I have been having pain at the back of my head since after surgery. My understanding, not from my previous NS but from reading and researching is that the importance of the mesh is to give the muscles something to attach to so what use is it if it did not cover all. I can’t remember what Dr. Oro thought about this but I am awaiting his call about my CINE MRI result and I will be asking him again.

Dr. Oro and I talked about Occipital Neuralgia. I will be taking neurontin and doing physical therapy at a sport center. If that does not work, then nerve block or stimulator.
Dr. Oro and I also talked about Cervicogenic headaches
Dr. Oro and I also talked about Pseudotumor Cerebri

Experience with Dr. Oro was great. I traveled from one coast to the other just to meet him. It was worth the money. I will do it over again (travel) if I have to and if I could turn the hands of time, I will not let anyone touch my brain/spine but him. He is very patient. Very knowledgeable, very detailed. I was very nervous about my results before meeting with him. When I was done meeting with him, I felt like everything would be okay regardless of what the situation was as long as he was my Doc/NS. I prayed to God to direct my feet to the right doc and I can honestly say he did.

Questions for anyone willing to answer or share before I talk to Dr. Oro and ask him.
1) Does anyone have the mesh and if yes, did it cover all the opening of the bone/skull removed? Not sure I have heard of only a portion of the bone being covered. I know some people done have the mesh and do fine without it.
2) I had a CINE mri. NP said it looks ok but Dr. Oro will review and call. From looking at my CD, they did a neck MRI with flow study instead of a Brain MRI with flow study. It does show the back of my head and my entire neck. I have had a Cine flow study done before and it was a Brain with flow study and showed my entire brain and just a lit bit on neck showing the tonsils and all. Does any one have any experience with this? I was told that even though it doesn’t show my entire brain, it still shows the base and spine area and that is sufficient.

I welcome any questions as this is just a short verson of my 3 day visit. I saw Dr. Oro on the 3rd day. I met with NP on 1st and 2nd day.  All Staff was very nice and friendly.

Thanks all.

[selmaS]

  Hi and welcome to the Chiari forum.

U can see my Drs name in my profile but I went to The Chiari Institute in NY...and had a wonderful experience .

  TCI has several Drs and I did not get to choose which one I got....but as I said I was well pleased....u may not like the Dr I had and u may love him as much as I did....for this reason it is best for u to see a few Drs and compare them...they all should be Chiari specialists other wise u really can not compare apples to oranges...as they are different.

If u have ne other questions please let me know : )

[gregsch]

Selma, I am curious when you had your surgery and who you used, since it sounds like it went very well. You can private message me if you would be willing to share.

[desertstorm2009]

Nina...
Sorry, didn't see your question until just now. My ON symptoms are scalp tenderness/pain from the occipital portion of my head that travels up to points at the mid, and sides of my head, eventually reaching the top. My head is so tender to touch and hurts if touched. It also seems to go hand in hand with the extreme pressure feeling like my head is going to explode!

One day I looked up a picture of the occipital nerve pathways, and it was like a road map of my pain. You should check it out. Dr . Oro says I may the ON in addition to the Chiari. I can't help but wonder if the Chiari isn't causing the ON. Either way it's hard to believe the hell of all this, at least for me. But I'm trying :-) Lisa

[ninigrli]

Hello ladies,
Thank you for taking the time to read and respond. I will def let you guys know what Doc O says about the mesh.

Selma, I know some people do well with and without it. I think I'm just concerned that my previous NS only covered a tiny bit of the upper opening of the bone removed. Not sure why as he (NS) who did the surgery did not explain. Also since I've been having pain @ the back of my head.

Lisa, thank you for letting me know about doin the shots with a neuro pain doc. I didn't even know where or whom to go. I decided to sstart out with the neurotin and if that doesnt work will do the blocks. R u goin to have the decompression surgery? What r ur symptoms for the ON?

[selmaS]

  Hi,....I too am interested just as an observer as I do not have mesh or a plate and am doing well without it....

I know Dr O uses the mesh  and has his reasons for using it....my NS said it was not needed and that it could possibly cause me more issues since I also was DX with EDS.

I am 4.5 yrs post op and I have not had an issue in the area where some have the mesh placed.....so I am sure it depends on the surgeon and how they do the procedure...and the patient on if they can tolerate the mesh or plate.


Glad ur visit went well and I hope u get ur reviews from Dr O soon.,

[desertstorm2009]

(((( Nina )))))
It will be interesting to hear what Dr Oro says about the mesh! Please do keep us posted. His attention to detail is amazing. While I know it wasn't completely the news you wanted, at least you are getting some answers and have some peace. Dr Oro says I may have the Occipital Neuralgia as well. So try the nerve blocks but with a neuro pain specialist. They give these shots all day long. I was scared when I did it, but it was nothing more than a flu shot, just on the head. Great questions by the way :-) Lisa