Not understanding

[d0ug]

So I am a per who has had 2 CM surgeries and think I am on my way to my third.  I keep doing the research but feel that I again am being treated like I am crazy.  At least my neurologist this time has requested my information from my previous surgeries 21 & 15 years ago.  But I am lost again because I don't understand what all the medical terminology is.  Here is a copy of my last findings on my MRI and what prompted me to go is that I am having the same symptoms again.  

There has been a posterior fossa decompression and posterior C1 laminectomy. There is no residual crowding at the skull base. The cerebellar tonsils are mildly pointed in appearance. Cine images demonstrate CSF flow both ventral to the cervical medullary
junction and dorsal to the cerebellar tonsils.

IMPRESSION:
Unrestricted CSF flow ventral to the cervicomedullary junction and dorsal to the cerebellar to

[selmaS]

  Not necessarily.....with younger children many Drs use to do a decompression that did not include opening the dura...those benefits were short lived and  eventually a redo was needed.....

Another possibility is that too much bone was chipped away during the lamenectomy and you developed cerebral ptosis...also known as brain slump....

So it could have been either of the 2 I mentioned above.....

Do you know what hospital you were at? It may be possible to request copies of reports from your surgery and any testing ...ie: MRI's done back then...it could take 2 weeks or better to get them....but worth it as the info will be helpful to you now.

Sinus issues is something many of us have as the sinuses are in close proximity to where we have the compression and  narrow space due to the Chiari.....


But the related conditions  should be ruled out...as you mentioned a syrinx....which is known as Syringomyelia.....and they can form anywhere in the spine not just the cervical spine....

Another possible related condition which is known to develop post op is ICP....Intracranial hypertension...in which the body stops absorbing CSF fluid or too much is made and we have that added pressure.....typically a shunt is placed to help drain off the excess fluid....but the symptoms would be similar to Chiari.....

You really need a true Chiari specialist to help you sort thru all of this.

[d0ug]

I don't mind at all.  I have had the migraines/dizziness/balance issues and more for about 3 months now and have been on several different meds before my PCP finally sent me to a neurologist.

I don't honestly remember back that far as to what was done with the first surgery but I do know that the second surgery, if I can remember, my parents told me that the surgeon said my CM had started to decend down in the spinal cord again and he had to "relieve" the preassure the was building up.  However, I am thinking that the second surgery was basically done to correct the first one, but now if I have a 3rd surgery does this mean this is something that I will have to have done for the rest of my life?  I was really young when I had my surgeries and didn't have these types of questions back then and I don't think my parents thought about these things.  I have been reading up on other things as well and I want to ask my neurologist about the EDS, sphinx (spelling), and when I was working as a home health aid in 2011, I threw out my lower back and the workmans comp doctor did mention something about spinal bifoda, but this was the first I've heard of it.  I have my disc from that MRI so I am taking it with me to my next appointment in a week and half.

I wish I knew more information about my first 2 surgeries now....kinda that saying "if I knew back then what I know now"  

I have also been told to mention something about sinuses???  A lady I work with told me that her daughter had migraines for 3 months straight and her neurologist end up doing some kind of surgery on her sinuses and it cleared up the migraines.  

LOL I am willing to try anything at this point because I live in constant pain and I feel like I have thousands of knives in my head everyday...yesterday was the worst and all I could do was just lay in bed and cry because the pain was so bad.  I'd cough and my headache would get worse (I do remember this from the previous 2 surgeries.)

[selmaS]

  May I ask, do you know what was done during the 2 surgeries and why the 2nd one was needed?

There are different types of decompression that are done....some do not open the dura...and the benefits may not last long...

Some Drs can remove too much bone when doing the laminectomy which can  cause cerebral ptosis also known as brain slump.....

And those with EDS can have a rejection of the dura patch or if they also have CCI those symptoms can increase post op. .....and some can have tethered cord with symptoms that worsen after a decompression surgery.

Just wondering what was done for your first surgery and what the 2nd  intended to correct....

[d0ug]

Hello selmaS,

Thanks :)  I will have to research the Ehlers-Danlos because I have never heard of that at this point.  That is good to hear because I really don't want to have another surgery at this point in time, but those things I can't judge as to when it happens.  I was diagnosed back in 1994 and had my first surgery in September.  It wasn't until the summer of 2000 when I started to have the same symptoms as before. At this time I was too old to see my previous surgeon as the first one was diagnosed by a surgeon with Children's hospital in Cincinnati OH but he did refer me to a great surgeon at University of Cincinnati's Hospital where he did the MRI in the summer of 2000 and wanted to do the surgery then but I was able to talk him until waiting until my winter break in college that December.  Now its been 15 years later and I having the same symptoms again and just now going through the testing phase for CM.  

My first surgery I was just a freshman in high school but I did what my surgeon told me to as far as resting.  I didn't return my freshman year but was home school by a teacher that year so that I could still continue to my sophomore year.  After that, I was very active as I was a member of marching band, color guard, and on a dance team while holding down a part time job.  

My second surgery I was a freshman in college but at that time I was only going to school full time and working a full time job.  

Currently, I work full time and that's about it.  

[selmaS]

  Hi and welcome to the Chiari forum.

According to what your MRI  imply's is  you  had decompression surgery and there is no obstruction to CSF flow and no overcrowding.....

So it does not appear Chiari decompression surgery is warranted at this time from this info.

Have you had Ehlers-Danlos and ALL related conditions ruled out?

How long after your surgeries did you have symptoms return?

What are your activities  post op?