CSF Blockage

[Nina_Kicking_Chiari]

Was diagnosed with Chiari Malformation in Oct. 2013, Received results from CINE MRI on Thursday (5/22/14).  Dr. says have complete obstruction of CSF flow, the movement of any CSF is not noticeable.  Wondering if anyone knows the possibilities of symptoms and if it is dangerous to wait for surgery.  I am already having numbness in my right arm and hand and have recently been having issues with my left foot (pain, swelling and hard to walk on)  I am holding a Conquer Chiari walk in my area in Sept. and don't know if I should schedule my surgery before and hope to recover in time or if waiting would be ok?? I just don't want to push my luck and form permanent nerve damage.  I understand that you are not medical professionals, I guess I'm just needing some support right now.  I was determined that I was not going to get surgery, but with this new information I have reconsidered.  Thanks for any input you may have towards this subject.  

[selmaS]

  No worries...

Not many Drs even NL's and NS's know how it can  and does affect us....they are not well informed and go by the fact a syrinx may develop in the cervical spine as a result of an injury as it is the weakest area of the spine....so they expect to find one there....but this is not due to an injury...and they think it will only happen up near the herniation for some reason....we have had far too many members with a syrinx in the thoracic and lumbar spine for it to not be routinely checked and ruled out.

ICP = intracranial hypertension...excess CSF build up

POTS= Postural orthostatic tachycardia syndrome  is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadedness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.

CCI= cranialcervio instability....it is a weakened area of the cervical spine...many times made worse by decompression surgery as a lamenectomy is done which chips away at the C1 and C2

Ehlers-Danlos Syndrome or EDS is a connective tissue disorder...the tissue that hold our joints together get lax....our muscles work harder to hold us together...so we tend ot have all over joint and muscle pains, and also tend to be hypermobile ...some describe it as being double jointed...but there is more to the condition then being hypermobile.

[Nina_Kicking_Chiari]

Sorry for the duplicate post :/

wow thanks for the info, I was wondering about the MRI, why do they seem to drag these things out instead of just doing the entire spine to begin with?? I will ask for a more thorough MRI of entire spine.  Also I have not been tested for sleep apnea, I have only been asked if I have it.  Forgive me but I am not aware of what ICP, POTS, CCI and ehlers-danlos are, but I will begin to do some research on them. I am open to any info you may have for me, as these are big decisions to make, and I don't want to go into this thing blindly. Thanks again.

[selmaS]

  A syrinx can develop in any area of the spine,not just the cervical spine so u will want a MRI of the thoracic and lumbar spine as well and these will help rule out disk issues and tethered cord.....

Testing for sleep apnea, and ICP, POTS, CCI and ehlers-danlos are all important b4 discussing surgery.

[Nina_Kicking_Chiari]

thank you for your welcome and your comments. Yes I live in Ft. Myers, Florida and drove all the way to Cincinnati, OH to see a Chiari specialist.  they said I have a complete obstruction and did recommend surgery.  currently I have numbness in my right arm and hand and I have been having some nerve issues in my left foot.  Along with all of the more obvious and common side effects of chiari, dizziness, fatigue, headaches, etc.  I have not had an experience with drop attacks as of yet.  They did a cervical MRI on me the last day I was at the doctors I have not yet received the report to know if I have a syrinx.  I feel like all of this has happened to me so fast I just found out about the diagnosis in October and now finding out about the obstruction.  I'm just not sure of the severity when they say you have a complete obstruction.  Again thank you for listening I hope you have a great day

[selmaS]

  Hi and welcome to the Chiari forum.

If u have a complete obstruction, I would be concerned waiting as the obstruction can cause the formation of a syrinx if u do not have them already and it can also cause drop attacks....again, if u do not already have them.

Were u tested for ALL related conditions?

It is very important to know about these related conditions as they can affect ur recovery.

Even if u can attend the walk, but not actually walk, if ur Dr feels u need surgery do it as soon as all ur testing for related and non related conditions is complete.JMHO