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Chiari Diagnosis from CSF Leak ?
Hello....Has anyone been diagnosed with Chiari Malformation as the result of a spontaneous CSF leak ?
If so, can you please provide some information on your situation/symptoms.
It's been 3.5 years and finally dx as this is the problem. My CSF fluid no longer leaks from my nose however after review of my medical records this is the theory they are going with.
Small spontaneous CSF leak which more than likely herniated the cerebellar tonsils to 3-4mm. Could be right, could be wrong at this point, I suppose. Could have been born with it, could have acquired it. So many questions and never any answers with this being the most reasonable thus far. Would be great if I had an MRI prior to the neck trauma.
Crazy symptoms with inconclusive test results.
Blood is always great....pcp says I look great on paper but knows otherwise
Tilt Table Study - not positive but symptoms suggestive of Orthostatic Hypotension
Irregular Heart Beat - short PR syndrome...(extra electrical pathway) PALPITATIONS
Low Blood Pressure
Visual Disturbances with black spots occuring
Shakiness
Bilateral Weakness in legs
Bilateral Weakness in arms
Migraines
Neck Pain
Fatigue - Major
Weakness and Fatigue upon Exertion
Gastroparesis
Blurry Vision
Sensitivity to Light - Severe
Heat Intolerance - No hot showers and No outside time in the summer heat :-(
Difficulty Breathing...originally dx with asthma....cardiologist gave me pulmonary function test NEGATIVE results
Acid Reflux - but then again, everyone is dx with this anymore.
Did cervical/thoracic facet injections and they eliminated migraines, dizziness, light sensitivity, blurry vision. Still kept weakness and fatigue. 3 weeks later symptoms eliminated are back but this was to be expected as they were done as a diagnostic measure only
If so, can you please provide some information on your situation/symptoms.
It's been 3.5 years and finally dx as this is the problem. My CSF fluid no longer leaks from my nose however after review of my medical records this is the theory they are going with.
Small spontaneous CSF leak which more than likely herniated the cerebellar tonsils to 3-4mm. Could be right, could be wrong at this point, I suppose. Could have been born with it, could have acquired it. So many questions and never any answers with this being the most reasonable thus far. Would be great if I had an MRI prior to the neck trauma.
Crazy symptoms with inconclusive test results.
Blood is always great....pcp says I look great on paper but knows otherwise
Tilt Table Study - not positive but symptoms suggestive of Orthostatic Hypotension
Irregular Heart Beat - short PR syndrome...(extra electrical pathway) PALPITATIONS
Low Blood Pressure
Visual Disturbances with black spots occuring
Shakiness
Bilateral Weakness in legs
Bilateral Weakness in arms
Migraines
Neck Pain
Fatigue - Major
Weakness and Fatigue upon Exertion
Gastroparesis
Blurry Vision
Sensitivity to Light - Severe
Heat Intolerance - No hot showers and No outside time in the summer heat :-(
Difficulty Breathing...originally dx with asthma....cardiologist gave me pulmonary function test NEGATIVE results
Acid Reflux - but then again, everyone is dx with this anymore.
Did cervical/thoracic facet injections and they eliminated migraines, dizziness, light sensitivity, blurry vision. Still kept weakness and fatigue. 3 weeks later symptoms eliminated are back but this was to be expected as they were done as a diagnostic measure only
COMMUNITY LEADER
Just one more thing we have in common....lol....most times they took both....at least that is what I was told....
I have not had the testing on my lungs, but I did everything to build them back up, and even after my decompression surgery I was given the same breathing contraption to use to keep my lungs clear and strong....it is plastic with a float and u breathe into it to make the float rise.....and there is a gauge so u can see improvement....so at this point I do not think I have it....
Hope all is going well.....I have been MIA a bit on here as I am not feeling well.....my TCS is acting up big time.....so, I will be wishing u a Merry Christmas and a health and pain free New Year !!
Here we go again.....I had my tonsils out when I was 9, lol. Not sure about the adenoids.
Do you still have restrictive lung disease? Interesting because I had a chest CT done in 2011 that was clear and next day another type of CT scan that said something along the lines of early emphysema/copd something so I requested the radiology facility to reread the test and they concluded they think it was just movement during exam. Well, since that was 2011 ..... let's hope they were right !
My breathing is/has always been mouth....never though that I get deep clear breaths during exams when they tell you to....but don't know what that is all about....that has been as long as I can remember.
Got call yesterday from NS to schedule appt. Should be interesting.
Do you still have restrictive lung disease? Interesting because I had a chest CT done in 2011 that was clear and next day another type of CT scan that said something along the lines of early emphysema/copd something so I requested the radiology facility to reread the test and they concluded they think it was just movement during exam. Well, since that was 2011 ..... let's hope they were right !
My breathing is/has always been mouth....never though that I get deep clear breaths during exams when they tell you to....but don't know what that is all about....that has been as long as I can remember.
Got call yesterday from NS to schedule appt. Should be interesting.
COMMUNITY LEADER
Well I had 2 issues...one was DX'd as restrictive lung disease which I was told was a result of an exposure to pesticides at one place of employment.
Next, I am/was a mouth breather....I felt as if I would suffocate if I did not breathe thru mu mouth.
When I was 7 my parents had my tonsils and adenoids removed, it did not help.....but I have found I can breathe much better after the decompression surgery....I still breathe out of mu mouth at times but it is more a habit then the feeling I am not getting enuff air.
Not sure if that helps
Selma I have a ? for you....or 10,000, lol.
I know you said you had breathing issues prior to surgery. Can you tell me what they were like. I am having a difficult time describing this situation. It feels as if I have chest pressure and hard time getting air in. It is so discouraging. As I am so very tired and exhausted and the breathing issues just add to it I feel.
I have had the chest xrays which are always negative. A couple years ago I had a CT and it came back early emphysema/copd, etc. I asked to have it reread as the day prior I had a different chest CT for ??? and it was clear and they did reread it and it came back "probably just movement during exam" of course who knows which is the correct one.
I had 2 stress tests, one in 2010 (when admitted to hospital 3 weeks after the neck trauma) and one in 2011.
Lung function testing in hospital setting (in glass box, etc.) in 2011 or 2012 can't remember and it came back upper airway something or other. This is the one the asthma/allergy dr. just decided in August was not negative after all (ARGHHHH) and that time sent me for the vocal chord dysfunction study and he said inconclusive.....but try speech therapy.....not doing it as clearly my speach is fine. Everytime a dr. asks me the outcome of that and I comment the recommendation is speech therapy they just look at me like, WTH.
I was given clonazepam a few months ago when I had intermittent stomach pains that they cold not find anything to see if it was anxiety driven and the med did nothing so the conclusion was that it is not anxiety. Clearly I have acquired anxiety however the drs. all say there is something directly causing the anxiety but ??? Can't imagine what that cause is.
I know you said you had breathing issues prior to surgery. Can you tell me what they were like. I am having a difficult time describing this situation. It feels as if I have chest pressure and hard time getting air in. It is so discouraging. As I am so very tired and exhausted and the breathing issues just add to it I feel.
I have had the chest xrays which are always negative. A couple years ago I had a CT and it came back early emphysema/copd, etc. I asked to have it reread as the day prior I had a different chest CT for ??? and it was clear and they did reread it and it came back "probably just movement during exam" of course who knows which is the correct one.
I had 2 stress tests, one in 2010 (when admitted to hospital 3 weeks after the neck trauma) and one in 2011.
Lung function testing in hospital setting (in glass box, etc.) in 2011 or 2012 can't remember and it came back upper airway something or other. This is the one the asthma/allergy dr. just decided in August was not negative after all (ARGHHHH) and that time sent me for the vocal chord dysfunction study and he said inconclusive.....but try speech therapy.....not doing it as clearly my speach is fine. Everytime a dr. asks me the outcome of that and I comment the recommendation is speech therapy they just look at me like, WTH.
I was given clonazepam a few months ago when I had intermittent stomach pains that they cold not find anything to see if it was anxiety driven and the med did nothing so the conclusion was that it is not anxiety. Clearly I have acquired anxiety however the drs. all say there is something directly causing the anxiety but ??? Can't imagine what that cause is.
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Not sure what u will be eligible for u would then go on the Gov web site and see what u qualify for....some may qualify for subsidies....lower rates....some medicare/medicaid.....there are a lot of diff plans, and I really do not understand half of the ones available out there....just do not understand y we had to lose one and choose another one....makes no sense...just add what was missing....sigh....
U may want to dip ur toes in and see what is going on so if u r affected at some point it will not be a shock and u will be prepared....
I agree we need to keep a sense of humor, but this INS stuff unfortunately is not funny at all....very depressing...right now I do not think I will be able to keep ne of my Drs either so that has me upset too...not sure I can go to Dr F in Baltimore at this point....
Glad to hear someone called to check on things for u....at least u r not forgotten tottally....