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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
Best Answer
COMMUNITY LEADER
Wow that is crazy. Sorry to hear your dad had to go through so much to get the proper dx. Yes, there are many out there that are dense. I actually had to tell the neurologist that I was B12 deficient. After he decided to come down off his pedestal and listen to me tell him that I had H. Pylori and believe it caused me to be B12 deficient....then it hit him. Sigh is the only thing we can do at times.
Oh well as far as everyone getting checked, my GI at the time did NOT tell me everyone should be checked in the house. When other people in the house started experiencing bouts of heartburn, I had them get checked and sure enough....they had it and I asked the GI @ JH if everyone should be checked and he said absolutely and they should have been when I was dx.
I have acquired lots of stomach problems since June 2010 and have no idea what they are. Been through many tests and ??? My gallbladder they say is fine, like your dad I beg to differ. Had endo in June and the dr. saw something in there and immediately sent me for endo ultrasound and got there, they saw nothing. Very strange is all I can say. I can get pains that go from rt upper quad that wraps around back and also to front rt pelvic (where an ovary would be). They are serious pains and they can't find anything.....well, at least so far. Then I can experience pains in the pelvic area that are stabbing/burning and my urine tests come back clean everytime.
My neighbor swears they are gonna dx me with fibromyalgia. Sorry and no offense to anyone but I won't accept that dx. I think it is a wastebasket dx.
She had surgery on her neck and 3 months later dx with Fibro and since then dx with everything under the sun. I think they gave her Fibro dx first because they had no clue. If I didn't know better after conversing with her so much since I have had issues, everything she has sounds like Chiari to me.
Oh well as far as everyone getting checked, my GI at the time did NOT tell me everyone should be checked in the house. When other people in the house started experiencing bouts of heartburn, I had them get checked and sure enough....they had it and I asked the GI @ JH if everyone should be checked and he said absolutely and they should have been when I was dx.
I have acquired lots of stomach problems since June 2010 and have no idea what they are. Been through many tests and ??? My gallbladder they say is fine, like your dad I beg to differ. Had endo in June and the dr. saw something in there and immediately sent me for endo ultrasound and got there, they saw nothing. Very strange is all I can say. I can get pains that go from rt upper quad that wraps around back and also to front rt pelvic (where an ovary would be). They are serious pains and they can't find anything.....well, at least so far. Then I can experience pains in the pelvic area that are stabbing/burning and my urine tests come back clean everytime.
My neighbor swears they are gonna dx me with fibromyalgia. Sorry and no offense to anyone but I won't accept that dx. I think it is a wastebasket dx.
She had surgery on her neck and 3 months later dx with Fibro and since then dx with everything under the sun. I think they gave her Fibro dx first because they had no clue. If I didn't know better after conversing with her so much since I have had issues, everything she has sounds like Chiari to me.
COMMUNITY LEADER
It took a yr and a half of going to the ER with my dad b4 they decided it was his GB which he felt it was all along...and they did many tests...first they said there was sludge around the GB...but they were treating him for it....ugh....he would get so sick, lost so much weight.,....and he said I think it is my GB, but being Drs they knew better...the last trip to the ER he finally had the Dr in charge of the GI dept. and he knew it was his GB and apologized for the staff putting him off for so long, then it took 4 rounds to get rid of the H.Pylori which is what I told them it was b4 the Drs discovered that...ugh...we think it is just Chiari Drs or NS's that are dense....sigh.....
He continues to have issues to this day....not sure if it is diverticulitis or more H.Pylori issues....crazy.
I never heard that all in the household should be checked....no idea it could be passed from one to another....
I hear u with needing to get up....but if need be I can get up on time, but when I have no where to go, I do sleep in later than 7,...lol...
Yeah the pink salt is suppose to be good too....I only have sea salt and my DH has replaced all reg salt in our shakers with it...
I have no clue if I have POTS. They gave me OH dx just based on symptoms since Tilt Table Study was inconclusive. If I have it, I certainly didn't have it before June 2010.
Sea salt is in the pantry :-). Just need to get used to using it. Also purchased that new Pink Salt which is supposed to be good for you as well.
The drowsiness of the Claritin was great for sleep like for you however I need to be up and at it at 7am with no time for sluggishness and that med would just not allow it....even at 1/2 the dosage. Even taken earlier was still problematic for me.
Yes, read up on the high cholesterol and diabetes....diabetes is yet another thing that no one not one single person in my family has.
They say if one person in the household has H. Pylori that everyone should get checked. Outside of an endoscopy, the proper laboratory testing is a stool test....not a blood test. Most doctors don't know the proper testing for it. So my H. Pylori caused gastritis. The gastritis is now inactive which is great and btw...your last message regarding probiotics....yes, I did take them. The nurses in the facility that did my scopies told me before going in to make sure that I take them. My pharmacist also said to take them whenever you take antibiotics for any reason....actually she said just use
Acidophilus. Interestingly enough....they claim to possibly lower cholesterol with usage. Hmmmm.
That is horrible that your dad had to take 4 treatments of that stuff. Ughhhh. Can't imagine. Was so freaked out that it was going to have to be repeated and thought no way possible of being able to accomplish that task.
Have had the gallbladder checked out so many times already. Between Hida scans, ultrasounds and gastric emptying studies....nothing comes up. Rest assured that pain in the upper right quadrant has been there for 3.5 years though and at times it is very painful. The only thing so far is gastroparesis. Liquids only....supposedly.
Sea salt is in the pantry :-). Just need to get used to using it. Also purchased that new Pink Salt which is supposed to be good for you as well.
The drowsiness of the Claritin was great for sleep like for you however I need to be up and at it at 7am with no time for sluggishness and that med would just not allow it....even at 1/2 the dosage. Even taken earlier was still problematic for me.
Yes, read up on the high cholesterol and diabetes....diabetes is yet another thing that no one not one single person in my family has.
They say if one person in the household has H. Pylori that everyone should get checked. Outside of an endoscopy, the proper laboratory testing is a stool test....not a blood test. Most doctors don't know the proper testing for it. So my H. Pylori caused gastritis. The gastritis is now inactive which is great and btw...your last message regarding probiotics....yes, I did take them. The nurses in the facility that did my scopies told me before going in to make sure that I take them. My pharmacist also said to take them whenever you take antibiotics for any reason....actually she said just use
Acidophilus. Interestingly enough....they claim to possibly lower cholesterol with usage. Hmmmm.
That is horrible that your dad had to take 4 treatments of that stuff. Ughhhh. Can't imagine. Was so freaked out that it was going to have to be repeated and thought no way possible of being able to accomplish that task.
Have had the gallbladder checked out so many times already. Between Hida scans, ultrasounds and gastric emptying studies....nothing comes up. Rest assured that pain in the upper right quadrant has been there for 3.5 years though and at times it is very painful. The only thing so far is gastroparesis. Liquids only....supposedly.
COMMUNITY LEADER
LMAO....too funny.
No, but my dad had it and it too 4 rounds of antibiotics to clear it up...his followed a Gall Bladder removal surgery.
I take a generic OTC antihistamine an hour b4 bed.....so that the drowsiness helps with sleeping, I also have a non drowsey formula for when needed during the day....
Hmm well those are just a few EDS symptoms....and as I said not everyone with EDS has the more common symptoms....
I was on the statins for a while for cholersterol and I did not and do not like them....another med I tried for a short time and am off....I feel if they address all the other conditions it will take care of itself.....I do not eat a lot of red meat to help, and I watch the rest of my diet and my Dr says I am doing what I need to ....so, I will continue with this plan....
SO do they think u have POTS....instead of reg salt, try sea salt....I hear it is better for u....I also have increased my water intake...no fun with a neurogenic bladder....with POTS u would tend to dehydrate....and it does affect BP.
Dry skin can be from thyroid too....
High levels of cholesterol can lead one to develop diabetes....this is y with a family history of diabetes they want me under the "normal" levels to help avoid that.
I am also 5'3" ....... LOL, that is hilarious.
Did you have H. Pylori as well ?
I have had the TPO a couple years ago....will ask to do it again anyway as I have followup with endocrinologist this week. I always get the TSH, T3 and T4 and if it is not on my slip I simply tell them that I will not get my bloodwork done until it is a complete thryoid screening :-) They tend to change/add whatever is needed....now it is pretty much a given and they just do it.
Tried out a new endo this year for convenience purposes but must say that I am going to go back to the other one as he is very helpful and actually looks outside the box. The convenience factor did not work in this case and actually usually does not.
I do not have blue sclera, do not bruise easily and do not take a long time to heal.
I def. have PND in the morning and have acquired some issues with drainage and coughing after eating spicy meals now as well. I actually have taken Zyrtec which makes me too groggy the next day, Claritin which I think does absolutely nothing for me and now am trying Allegra. Allegra was just mentioned by the cardiologist who did my echo and thinks this is all Acid Reflux. She also wants me on Lipitor however I am a bit hesitant on this Lipitor as one of the side effects are muscle weakness with no reason. Well, I already endure bilateral arm and leg muscle weakness and don't want to add fuel to that fire. Not sure what to do about that. My followup with her is this week as well. Arghhhh....I guess now you know what I will be doing ALL week long AGAIN. Drs. appts. as usual.
Did you take a statin for your elevated cholesterol when you had it ? If so, what did you take and for how long ?
Here is one.....so my Tilt Table Study was inconclusive and they said just drink 8 bottles of water per day and some mega amount of salt. Perfect, we know that all that salt is going to make me retain the water and hopefully increase the blood pressure but the bloating is horrendous.
I spend my days in the bathroom feeling as if peeing more than consuming. This baffles my brain as well. My skin is very dry as well and would think it shouldn't be with that much hydration but am I really getting hydrated if it is all coming back out. My hands look like they are of an elderly person but I do wash my hands 10,000 times per day due to my job so hmmmmm....thought maybe diabetic but they say no. Had A1C test and regular glucose testing comes back normal and finger pricking thing is always good. My moms coworker got dx with diabetes through a 5 hours glucose testing as it was not showing during regular testing.
Did you have H. Pylori as well ?
I have had the TPO a couple years ago....will ask to do it again anyway as I have followup with endocrinologist this week. I always get the TSH, T3 and T4 and if it is not on my slip I simply tell them that I will not get my bloodwork done until it is a complete thryoid screening :-) They tend to change/add whatever is needed....now it is pretty much a given and they just do it.
Tried out a new endo this year for convenience purposes but must say that I am going to go back to the other one as he is very helpful and actually looks outside the box. The convenience factor did not work in this case and actually usually does not.
I do not have blue sclera, do not bruise easily and do not take a long time to heal.
I def. have PND in the morning and have acquired some issues with drainage and coughing after eating spicy meals now as well. I actually have taken Zyrtec which makes me too groggy the next day, Claritin which I think does absolutely nothing for me and now am trying Allegra. Allegra was just mentioned by the cardiologist who did my echo and thinks this is all Acid Reflux. She also wants me on Lipitor however I am a bit hesitant on this Lipitor as one of the side effects are muscle weakness with no reason. Well, I already endure bilateral arm and leg muscle weakness and don't want to add fuel to that fire. Not sure what to do about that. My followup with her is this week as well. Arghhhh....I guess now you know what I will be doing ALL week long AGAIN. Drs. appts. as usual.
Did you take a statin for your elevated cholesterol when you had it ? If so, what did you take and for how long ?
Here is one.....so my Tilt Table Study was inconclusive and they said just drink 8 bottles of water per day and some mega amount of salt. Perfect, we know that all that salt is going to make me retain the water and hopefully increase the blood pressure but the bloating is horrendous.
I spend my days in the bathroom feeling as if peeing more than consuming. This baffles my brain as well. My skin is very dry as well and would think it shouldn't be with that much hydration but am I really getting hydrated if it is all coming back out. My hands look like they are of an elderly person but I do wash my hands 10,000 times per day due to my job so hmmmmm....thought maybe diabetic but they say no. Had A1C test and regular glucose testing comes back normal and finger pricking thing is always good. My moms coworker got dx with diabetes through a 5 hours glucose testing as it was not showing during regular testing.
COMMUNITY LEADER
Well ur Dr should know as I do not recall what it is exactly...but I know it is not a typical blood workup for magensium,,,,
It is still on the low side but not as low as it had been at times B4 my surgery..
I also had mysterious weight losses and gains over the yrs with no changes to my diet or lifestyle....I now know it was the thyroid bouncing back and forth btwn being hyper and hypo....I have not been able to lose the weight since surgery tho.
AS for thyroid testing it is free T3, free T4 and TPO antibodies along with TSH....and a ultra sound of the thyroid.....
EDS is not just being hypermobile even tho most look to see how hypermobile we r to determine....there are questions and other things to look for as there are many types of EDS.
why would u have to be over 6 ft tall?...OMG ur Dr does not have a clue....lol...I am 5'3"....that has nothing to do with it...wow...and what is funny I had a Dr suggest that to me as well....really? as I said I am 5'3" I do not think that fits....sigh....
DO u have blue scalara?...take a long time to heal, easy to bruise?
Even the low vitamin and minerals can be EDS as it causes the body to not absorb the vits and minerals from supplements or naturally....
Have u tried to see if some of ur breathing and reflux is due to PND...and if an antihistamine would help? I have and I sleep better and my reflux is better and so is my breathing issues....
With the B12 I take the sublingual (sp) it dissolves under ur tongue...
Now back to the H.Pylori....glad only one pak helped as I know it can take several rounds and some have it come back once they thought it was clear....next taking strong antibiotics can also affect ur GI track....talk to ur Dr (not sure it will help) but do ask about taking a pro biotic to help replace the acids needed to break down food....with a loss of these acids u can have similar symptoms as having too much acid so a PH test can help too....with reflux u can have bloating and it can press on the vagus nerve which can cause heart palps and breathing issues.....
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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....