Not the news I was hoping for....

[huskerfan71]

Ok I am going to do my best make a long complicated story understandable.  I currently have 2 NS (one for Chiari and one for my pituitary tumor).  I had decompression with duraplasty, C1 laminectomy and a titanium plate in January of this year.  My follow up MRI 6weeks after surgery looked good.  Room for the CSF along the back and still some swelling in the front.  Dr was happy, headaches were gone.  

Fast forward to June.  My headaches started to come back, only with more pressure than before.  Called the NS they had me try fioracet and then hydrocodone.  Neither really helped.  My pituitary NS ordered an MRI for both.   Saw him yesterday and the pit tumor is not changed (woohoo- some good news!) however, I now have good flow in the front, but all along the plate there looks to be no room.  It is really tight.  Ahhhhhh...

Yes, I am sending the MRI to my Chiari dr, but in the mean time I wanted to see what you guys thought about this.  Is this something that happens regularly?  How could things get so tight so quickly?  

Any input would be appreciated....

Thanks!!

[selmaS]

  The  only  question I have is did they rule out EDS  and what  type of patch will they use.....

  The rest sounds standard for your issues....

A 2nd decompression IMHO is better then a shunt....again just MHO....sometimes they are needed...and I  am not saying not to have one....but they can  be high maintenance...malfunction...etc....I just feel a 2nd  decompression may help without the added stress of the malfunctions....

Keep us posted.

[huskerfan71]

Ok.  I finally got to talk to my Dr. about my most recent CINE.  He confirmed that there is something disrupting my flow.  He doesn't think it is scar tissue, instead he thinks my tonsils are just really fat and are causing the problem.  However, he wonders if it could be iih (I think that's right) causing some swelling which in turn would be making my tonsils fatter.  I hope I said that right.  
Anyway, the plan of action is a LP (which I am NOT excited about at all) as it is the only definitive test to rule out increased intracranial pressure.  If the pressure is normal, then we proceed with a 2nd decompression and he will shrink the tonsils this time and I believe he said make the patch "bigger".

I am extremely nervous about the LP, as I have read so many things about not having them with Chiari, by my Dr. is really good and I don't think he would've recommended it if he didn't feel it to be necessary.  And I don't want another decompression if I don't really need it!  Right.....


Ahhhhhh...  :)

Thanks for the support and replies everyone!

[kristy12]

Usually when chiari progresses the spinal cord is pushed to the front by the cerebellum. First, posterior flow quits, then lateral and anterior at he end which means hydrocephalus. When there is no lateral flow, the tonsils wrap around the spinal cord leaving two jets stream in front.

[selmaS]

  And I hate to say,,No....surgery this surgery the decompression of the posterior fossa is done to restore CSF flow...

so yes, you are  right there...that is why we have surgery....

  The one thing you will have to do is look at what all was done for your surgery...keeping in mind scar tissue can form and slow flow post op....

But sometimes not enuff room is made...so, knowing if you have a dura patch and if it was with laminectomy...as there are less invasive procedures that are also called a decompression but it is a bony decompression....sometimes these procedures need to be redone as a full decompression opening the dura and chipping away some bone.... Some Drs try to avoid a CSF leak and making the opening too large and then it is understated and does not help....

Good luck  and let me know....I would think this may be scar tissue...

[huskerfan71]

Is it (I hate to say) "normal" for someone to have a CSF obstruction AFTER decompression?  I mean isn't that one of the main reasons we have the surgery?  That's the part that has me totally confused.  

I know that surgery isn't a cure, but isn't restoring the CSF flow what it is supposed to do?!?!  I am a little frustrated.   Sorry.  

I'm curious if others have had this happen as well.

Anyway, thanks for the response and confirming what I was reading into the report.  I will definitely let you know what my Chiari NS thinks of this.  Hopefully sometime next week!

THANKS!!

[selmaS]

  Hi Hayley....yeah I get that you have ok flow in the front which most with Chiari do....but less in back...and some issues on the sides...never seen that one b4...so not really sure on that will have to do some research....

  Do you have a syrinx?....did they check for one?

The craniocervical junction is where the base of the brain and spinal cord connect....so the flow is diminished there on the sides as well???Sorry I can  not locate info on this or really understand it....

As far as I can follow you have a CSF obstruction .....something affecting flow.....

   Wish I could tell you more...do let us know what your Dr says so I know too : )

[huskerfan71]

Ok.  I just got my CINE MRI results.  I will be sending the CD and radiologist report to my Dr. tomorrow.  But in the meantime, I wanted to share a portion with you and get your thoughts.

"CINE evaluation of the craniocervical junction demonstrates appropriate anterior CSF flow.  There is a very small amount of posterior CSF flow at the craniocervical junction extending into the upper cervical canal, although the posterior flow is diminuitive.  There is similar dimunitive lateral CSF flow at the craniocervical junction."

I think I get most of that....  I think it means good flow in the front, little flow in the back.  But I am stumped on the lateral flow.

Thanks for any thoughts you may have!

Hayley

[Elisaandbucky]

You are certainly not weird for finding your surgeon's report interesting. It's cool to read about your body - especially your body in surgery. I have emailed my surgeon twice to request his report of my surgery. He has not replied, and I am beating a path to the mailbox each day (in case the report is mailed). Inside my house, I am always checking for his name on an incoming email.

We will be thinking about you for the next few days when you have the test. Please post back with any information.

[selmaS]

  Hooray !!!!  So glad you have a CINE scheduled....

Fingers XXXX'd

Keep us posted when you learn more....prayers sent your way <3

[huskerfan71]

I will be having my CINE in a few days.  It just took me almost a month to get in to see my chiari specialist.  I am anxious to get the CINE done and to find out if I have a blockage.  I felt so good for a few months post surgery it's baffling and a little defeating to be having the headaches again.  I feel like something is blocking the flow.  I guess we will know later this week!  I will post the results when I get them.

Oh ya,  I do have a copy of my surgical report.  I got that at my follow visit with my PCP after surgery.   It was pretty neat to read.  (Is it weird that I found it interesting). Lol

The fioracet seems to be providing some relief for the headaches.  I am glad about that!!  Today was not too bad.

[Elisaandbucky]

I am reading the previous responses to your original posting and noticed the dates were 8/7. Then I think you responded an hour ago, so I hope I am timely in responding. By the time I am writing this, you may have had your procedure. I really like to read about post op stories. You have great truth above when Selma suggested that you call the hospital (previous surgery) for surgical notes. I am waiting for my own. If you have a copy in your file it will prove valuable for later decision-making. Because you wrote about a month ago, I am interested in what progress you've made with a neurosurgeon who has read the cine-MRI. Post back if you can.

I do hope you are feeling better these days.

[huskerfan71]

Went to see my Chiari NS last week and he thinks its possible that there is a blockage or I have elevated intracranial pressure.  I am having a CINE MRI this week.  If that looks ok, then we will try a lumbar puncture to see what my pressure is and go from there.  

I am anxious for the CINE results.  At least maybe now I will get some answers.  

Keeping my fingers crossed!!

[selmaS]

  You can call the hospital for an OR report....this will be more in depth details...( I did not get one) some feel this is best when they do have issues post op in case they end up going to another NS they have all the info right there.

The scar tissue is not always seen and it may take a certain view ( slice/angle) to be able to rule it out.

No worries.

[huskerfan71]

I don't know how much he removed.  I guess I didn't think to ask.  LOL.  My NS is a Chiari specialist, so I hope that's not the problem.  I asked about scar tissue when I saw my NS yesterday, he said he didn't see any.  I don't know how accurate that is.  This is the same guy who didn't think my Chiari was a problem (hes the pituitary tumor guy).

I am anxious to see when my Chiari NS says.  I will keep you posted.

Thanks for your input!

[huskerfan71]

Thanks.  I will be anxious to see what the Dr says.  I sent my MRI overnight so I would think I would hear back from them next week sometime.

[selmaS]

  Hi I am so sorry you are having this issue....it could be a number of things....what all was done during your decompression?

You mentioned a plate, do you know how much bone was removed...sometimes too much is removed and it can cause what is known as cerebral ptosis or brain slump....

Another possibility is scar tissue developed and is causing an obstruction.....

Keep us posted on how you are doing and what you find out.

[kristy12]

Usually, when there is no flow at the back, the speed is increased at the front (compensation). So I think the next step is just cutting up the tonsils.
It happens, when no too much room is to be accommodated at the back - it's probably the reason why you have the plate.