Any thoughts?!?

[Deulley87]

I was going over my post op mri (decompression 4-18-13) Without being a doctor or speaking with my doctor yet, I'm seeing this phrase and have been trying to debunk it.......

CM is present with .7cm of tonsillar ectopia and obliteration of cisterna manga. CFS flow study demonstrates pulsatile flow and prepontine cistern, ventral to the cord at the foramen magnum. No identifiable flow in cisterna manga or with discontinus flow to posterior to the cord. No identifiable flow to the fourth ventricle or foramen of magendie.

I know we are not doctors, but we are very educated people. But was wondering if anyone has heard of this or know what it means. Just and inpatient woman trying to be ready. P.S. I will be seeing my doctor to discuss the results with him.

[selmaS]

  Well that can lead u to think the worst....keep an open mind for now and see what ur NS has to say.....good luck.

[Deulley87]

So my NL look over my mri's and had his nurse call me to tell me......"go see your surgeon". She didnt have any helpful insight from him except, "he said it doesn't look good." I have an app on the 8th with my NS :(

[ninigrli]

Thank you Selsma

[Deulley87]

Thank you eveyone sooooooooo much!!!

[selmaS]

  Yes, it is called Links (resources...it had a link for the Chiari Pillow and links to several non profits that will fly u if u qualify....do check into a few as they have diff qualifications.

http://www.medhelp.org/health_pages/Neurological-Disorders/Links/show/538?cid=186

[ninigrli]

Selma, do you knw what link to look for?

[selmaS]

  To address the travel expense, there are non profits that will fly u to Dr appointments and to location for surgery...do check out the links in the Health Pages for more info.

[ninigrli]

I know what you mean about having the support. I have my hubby and family but they don't seem to understand. Its always nice to go with someone even if its not family that can help with support and also ask questions that u might not think to ask. I went with my hubby and till today shocked at the question we didn't ask and offcos the NS never bothered to menttion. Hmmmm these Docs worry me. If your alone they tend not to share much but your doin the right thing by reading about it before your appointment so you knw what to expect.

I ddidnt read about it as I was sure my CSF flow was great as I had very little symptoms. I had all stages of the surgery done (removal of skull bone) but my NS never stated who much bone he removed and I question thhat cos I have heard of a thing such as removal of too much bone causing more problems. I also had my C1 shaved then dura was opened up and a bovine patch was sew then a mesh was put in place.

I will check out ur MRI pic.
I knw you don't want to spend money to travel. It is not easy but its soooooo important so another surg is not required.

[Deulley87]

No he did not open the dura or place a patch. My NS had told be once he did everything above and used an ultra sound, fluid was flowing again.

Thanks for the start of another direction :)

[selmaS]

  Was ur dura opened?.....

I am so sorry u r facing this surgery again....we do have a few others that have also faced this and came thru quite well....u will want to talk to a few of them....

If u use the search this community feature and indicate more then one decompression. U should find other threads and the members that have been thru this.

Wishing u all the best.

[Deulley87]

I have also uploaded a side by side of pre and post op mri photos on my profile, if anyone wants a look :) They are not proportionate to each other, but they get the point across, lol.

[Deulley87]

The numb spot in my face started oct of last year (before the decompression) and is still growing.

As for prior obstruction of fluid, yes, there was minimal flow to the 4th ventricle and no flow in the back of my head. To go and compare that to my previous, things are worse.

No one comes with me to my apps. I don't have a strong support system, besides me. It sometimes bothers me, but if it weren't for believing something was wrong and fighting for my self, things would be way worse. So I hold my head as high as I can, lol.

[Deulley87]

Thanks, I do plan to ask my doctor lots of questions, but me being super inpatient, left me requesting the results my self so I could see what was going on.

Unfortunately my NS is not a specialist, there are none in my area and I cannot afford to travel. After searching for someone I could trust to perform a decompression, I was left with a doctor Goel. He's great and knowledgeable at least, but I will be calling him to set up an appointment to go over the results.

[Deulley87]

In my surgery (in short terms) they opened the hole about 3 more cm, removed a tendon off my cord that caused compression, and removed the back arch of c-1.

This mri was 1 year after the first and 6 months post op. All issues that were there before this have not left with some getting worse.

[ninigrli]

Hello,

Not sure what to make out of ur MRI result but it does seem like there are some obstructions in CSF flow "no identifiable flow". Did you have an obstruction prior to the surgery? Was the obstruction in the same places? Do you have your previous MRI report so you can compare?

I knw we tend to want to knw right away but I think your NS will be the best person to explain but in the mean time you can write down all your quetions so you don't miss anything out tto ask.
Also I hope you are going with someone to your appointment for support?

I was reading some of your postings and couldn't help but noticed you sstated that you were having numb spot on your face.

I am one year post surgery and I too have been having all kinds of strange feelings on my face. It started on one spot and now more sections but not entire face yet. I also have been having strange feelings on my forehead like pressure like feeling movement. Strange movement burning senation on or in my head I can't even explain, dull arching pain at the back of my head that comes with serve nausea and the list goes on.I have been asking my NS for a CINE MRI for a while now and for some strange reason, he has not ordered any.

Wishing you all the best and keep us updated.

[frankie_rush]

I wish I knew what that meant.  I read mine and was the same way.  I did find out one thing.  If you don't know and want to know ASK.  They are glad to tell you.  When I ask my doctor he set there and explained everything from the moment the started tehe surgery to the final stitch the did.  He expained it in easy terms that I could understand.  That is one reason I love my doctors is because he does take his time with you.  Yes we are educated people, I have a BS, but mine is in the technology field.  I can tell you how a computer systems work down to the minute you see it on the screen.  It would look like that to somebut but to me wold be second nature.

[selmaS]

  Hi....well I am not sure really it seems u may still have an obstruction....sorry I do not recall what all was done during ur surgery to know where to start as a possible issue...

Is this going to be ur 6 month post op visit and do u have some issues lingering?