Big Bump in the road :(

[cynderski]

I had decompression craniectomy with duraplasty on 6/16/2011. For the first 3-4months post-op I was doing great and felt better than I had in a long time. After decompression my blurred vision and buzzing in my ears resolved. My headaches are improved from previously although I still get HA's almost daily but the seem to be more manageable with just excedrin. I still have numbness and tingling in my left arm, hand and fingers. About the same as previously but my NS said this may improve or may not. Fast forward to now...
I have been in contact with my NS's nurse because over the past 2-3 months I have experienced a "zapping" or electric shock sensation intermittently through my entire body mainly when I turn my head side to side and more recently the feeling of a constant lump in my throat and trouble swallowing. My neck and shoulders have been killing me again too :( We scheduled my follow up CINE Mri early to evaluate the CSF and check if anything had changed or worsened etc.
I received and email from my NS nurse yest to overnight the CINE CD to them for the NS to review and she forwarded the radiology report which show's something new and that I need to come back to address this problem.
The surgical site is fine, the chiari and cerebellar tonsils are well decompressed and the CSF flow has been restored below the foramen magnum. HOWEVER, there is complete blockage of CSF flow below c2-3 all the way down as far as the study can see which is T3. IT states that I have cervical stenosis, congenital narrowing of the cervical spine and possible arachnoiditis?????
Well, this would explain the new symptoms.  
I am waiting for the NS to review the images and hope to hear back on Monday. Either way I have to plan another trip to Miami to address this problem. Which I am afraid is more surgery :(
Part of me is relieved because I new something was wrong again. Part of me is heartbroken at the thought of more surgery. I went on a 10 minute tearful rant last night because I am so angry that I was given the runaround for so long! Dr's telling me that everything is normal when I KNEW something has been wrong with me for a long time!!!!

Any thoughts or experience with this ? Help??

[selmaS]

  I did not take u as harsh and I know it is hard to know and understand what is typed here at times...we all have typos and forget things, but, I try to make each answer fit neone that reads it....not just who I am replying to....so, if it seems I am saying, something contrary to what u r saying, that is y...so no worries : )

  So many of us have been made to feel this way as well....and get the brush off....and validation with a dx is so welcomed : )
I understand what u r saying all too well.

[cynderski]

Selma, I greatly appreciate your input. Sometimes it is hard to judge someones tone online but I did not mean to harsh at all! For me it was more about having symptoms but no diagnosis that fit my symptoms. I now have a diagnosis that makes sense. I am so grateful for your knowledge and love that you make yourself available to everyone!
The pieces of the puzzle are finally coming together for me. I am finding so much relief that there are actually answers to my ailments, I am not crazy, It is not all in my head. I have been made to feel like a whiner or hypochondriac for so long (as most of us have) that I can now say I am getting answers. It is actually kind of empowering! :)

(this is more of evidence of my emotional roller coaster right now. Up and down)

[selmaS]

  I was adding to the info here, not implying u may have a syrinx....I try to reply for those that read the post as well as the person that wrote it.....suggesting there r more then one reason to get that symptom.

As for EDS dx, yes, while at my NS's office I was seen by the NL they work with and the NP and they did a  clinical exam which revealed EDS....Barbinski scale  1-9 if u have a 3 or 4 u have hypermobility I had a 7 only bcuz the last 2 points were for bending and laying my palms flat on the ground, I could not bend over at the time without falling,so I refused to try.
Here is a link to JHS and how they test.....keep in mind not everyone  is able to flex their joints like this, but still may have EDS of some type.

http://www.reumatologia-dr-bravo.cl/para%20medicos/crit%20y%20diag/DIAGCRITJHS.htm

[cynderski]

Sela,
How is EDS diagnosed? Is there a test that can detect this or is it diagnosed by physical exam? I have suspected this for a while but not tested or diagnosed with EDS (yet). Should I ask to be tested at my next appointment?

As far as the electric shock, yes I have heard that syrinx can also cause this but I have never had a syrinx so in my case arachnoiditis may be the culprit. It is somewhat relieving to find the reason why I am feeling the symptoms I feel.

[selmaS]

  I know this can all be overwhelming....and it is hard to not let it get us down...but come here and vent....get it off ur mind and chest so u can release that stress instead of keeping it.

Thanks for that bit of info on the arachnoiditis...I was doing research on the electric shocks too since we did have a few others mention it....and I did find that cerviocranial instability can also cause this symptom....

And a few  have reported having it as a result of a syrinx.....

  I really feel it is any of the above issues impinging a nerve.....so a syrinx can be the culprit as well as the instability or the arachnoiditis.

[cynderski]

Thanks for the replies Selma, your situation sounds a lot like mine.
I will patiently wait until tomorrow when I should here back from the nurse after my NS looks at the images.
Had a pity party today (all by myself) Tired of dealing with all of this and just want to be done. The possibility of another surgery has me feeling pretty emotional.

Just an fyi, I posted a question a while back, and I have seen a lot of questions lately, about the sensation of "electrical shocks".
I did a little research about arachnoiditis since it was mentioned in my mri and found this is a pretty common symptom. Prior to this, I couldn't find any info about this.

[selmaS]

  I have the same thing...and it is the reason I was told no driving..it is the obstruction that can cause drop attacks and since I had them b4 surgery, they do not want me to drive until it is resolved....the disk obstructing CSF can cause the same symptoms as the tonsils blocking CSF...

I also have mild scoliosis and cervical instability( a EDS issue) and had whip lash so loss of cervical lordosis as well....

My second pinch of CSF flow did not occur until 6 months post op....the disk that was bulging shifted further.

[cynderski]

I knew that I had neck "issues". I was told I had scoliosis, loss of lordosis, disc bulge at c5-6 and cervical "instability". On the new MRI the area at c2-3 looks as if the cord is squished, I don't think It could be visualized that the fluid was not flowing at c2 because it was pinched off above this point by the chiari.
Does that make sense? I think I am trying to say is it was pinched off in two areas. At the foramen magnum (chiari)  and at c2-3

[selmaS]

  Hi...I too have spinal stinosis...and mine has gotten worse post op as well bcuz I also have a bulging disk that shifted out into the area of stinosis....

I know the reason the disk shifted is bcuz I also have EDS a connective tissue disorder which holds everything together....

I knew about the disk and the stinosis b4 my decompression, and I knew I would need surgery at some point for it...but, it was the PFD that needed to be done first....did u know  nething about these issues b4 ur surgery?