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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
HS was a typo....lmao it should have been HA for headache....lol..
ACA- the affordable care act....
Exactly...in the midst of labor most woman would say they never want to have another child....but, that pain is soon forgotten and most willing to go thru it again for another child.....we can overcome most pain, to endure it again knowing what the outcome will be and even sometimes not knowing, but having faith.
Oh deff not, if it was just 2 weeks ago send the report to the Dr or take it with u....I always get copies of all my blood labs and take with me to all my visits so they know what has been done when etc....ur INS will not cover the same tests in too short a time frame....unless something new has developed...so call the Dr and tell him u had the same testing done....and forward the reports.
Being it was the nose, u may have a CSF leak....
It seems not all rheumatoid Drs test or look for EDS we do have to research them, like we do NS's....
yup that sounds like a plan.
ACA ? What is that and what is HS ?
I definitely would have told people that I would never have brain surgery however in the light of the current situation....I tell them cut it open go right ahead because I am sick and tired of feeling sick and tired. I would opt right now to have brain surgery as opposed to those injections again. Sorry but I have had escalated problems with fatigue, weakness and breathing since those injections and no one seems to know why. Hopefully, I did not get a leak somewhere....my insurance company wouldn't approve an mri right now to check on one. At least that is my opinion.
All the doctors appointments exhaust me, all the meds accumulated in my closet exhaust me just looking at them and all the misdiagnosis just plain tick me off.
Honestly, just thinking about going to these two appts. this week frustrates the hell out of me.
I need to reschedule the cardio appt. that is wednesday and the endo appt. on friday is wasted time because the bloodwork that needs to be done for the appt. is the same exact bloodwork that was just done 2 weeks ago and the same stuff everyone does so I really just don't see the point of getting more blood drawn at this point.
So in April I was doing ok. Not great but ok. I hit my head on a fence post and heard something crack. One dr. says the nose was broken the other says no. Ever since then I have been struggling with more fatigue, etc. My MRI was in September so apparently nothing new showed. Then I got that horrific vocal cord dysfunction study which led to severe gagging. Too bad I didn't have the MRI after that study as opposed to before because maybe something during all that gagging triggered something else. So tired just trying to make sense of this all.
To top it off...I drove in the snow last Monday to JH and dropped all my cd's/films and letter off to NS. No word. Called today, she has no idea if he looked at it or not, it is sitting on his desk and she will talk to him on Wednesday, maybe.
No rush.....I only feel completely miserable....take your time. Ridiculous.
I have been to Rheumatologist in past as my ANA was positive 3.5 years ago but the complement tests all came back negative. So they conclude it was a false positive. I had 4 of those false positive....3 with the same stain pattern and 1 with two stain patterns. The most recent was run at different lab and came back negative ! Perhaps I will call her and ask if she knows about EDS. May as well ask before arriving ;-)
I definitely would have told people that I would never have brain surgery however in the light of the current situation....I tell them cut it open go right ahead because I am sick and tired of feeling sick and tired. I would opt right now to have brain surgery as opposed to those injections again. Sorry but I have had escalated problems with fatigue, weakness and breathing since those injections and no one seems to know why. Hopefully, I did not get a leak somewhere....my insurance company wouldn't approve an mri right now to check on one. At least that is my opinion.
All the doctors appointments exhaust me, all the meds accumulated in my closet exhaust me just looking at them and all the misdiagnosis just plain tick me off.
Honestly, just thinking about going to these two appts. this week frustrates the hell out of me.
I need to reschedule the cardio appt. that is wednesday and the endo appt. on friday is wasted time because the bloodwork that needs to be done for the appt. is the same exact bloodwork that was just done 2 weeks ago and the same stuff everyone does so I really just don't see the point of getting more blood drawn at this point.
So in April I was doing ok. Not great but ok. I hit my head on a fence post and heard something crack. One dr. says the nose was broken the other says no. Ever since then I have been struggling with more fatigue, etc. My MRI was in September so apparently nothing new showed. Then I got that horrific vocal cord dysfunction study which led to severe gagging. Too bad I didn't have the MRI after that study as opposed to before because maybe something during all that gagging triggered something else. So tired just trying to make sense of this all.
To top it off...I drove in the snow last Monday to JH and dropped all my cd's/films and letter off to NS. No word. Called today, she has no idea if he looked at it or not, it is sitting on his desk and she will talk to him on Wednesday, maybe.
No rush.....I only feel completely miserable....take your time. Ridiculous.
I have been to Rheumatologist in past as my ANA was positive 3.5 years ago but the complement tests all came back negative. So they conclude it was a false positive. I had 4 of those false positive....3 with the same stain pattern and 1 with two stain patterns. The most recent was run at different lab and came back negative ! Perhaps I will call her and ask if she knows about EDS. May as well ask before arriving ;-)
COMMUNITY LEADER
Most when on the stairs, and carrying something up...even if it is not heavy....I think it is just the xtra activity of holding something...lol...not sure y....I guess it is a strain....I try to go up the stairs with as little as possible...
I may have a HS but it does not change or come on when sitting or standing or a result of them....as a HS may develop while sitting but not bcuz I at down and changed position.....this could indicate POTS for u....
The thing is if neone asked if I would undergo Brain surgery, I might have said never in a million yrs....I also thought I would never go on a trip outside this country, and again if asked yrs ago I would have said never, but things can change our outlook on things and skew it to view things diff so we do change our minds....lol...
No sorry I do not....but have u tried heat to help with those spasms?
Yup, u can lead a horse to water, but u can not make him drink....lol...
I know, I was told to see Dr F too and it was a yr wait and I need to ask someone to take me, I never made the appointment bcuz I have no idea who can offer to take me that far ahead, now my INS dropped me bcuz of ACA so who knows what 2014 will bring...
I was told u do not really need a geneticist if u do not have the vascular type of EDS, Dr F is one, but one of the best in DX'ing and offering other Drs how to treat us...so good for a DX and to get info from....but u still need a Dr in ur area a rheumatoid Dr?....
I hear she is wonderful and have had several friends that have been to her, so I look forward to it one day.....
Oh, you are welcome.
Did you ever get headaches when you sit down, stand up or go up/down stairs.
Between this breathing and these headaches....really concerned.
Remember I had those injections. Well, what I can say is I did not have the headaches/migraines, dizziness, visual disturbances and light sensitivity for almost 3 weeks afterwards. Now it is back with a vengenance. Horrible. Not sure if it is worse than before or just feels worse since it was absent for those several weeks. :-(
The Topamax is not working for it....800mg Ibuprofen will but not supposed to take it everyday...easy for them to say since that is the only thing that somewhat touches the pain. Does not relieve the other symptoms of dizziness though.
I did say never would do those injections again as they were traumatizing....you commented, never say never. You were right....never say never. I think I would much rather let them go in and perform the ablation on the nerve than to go through those injections. Besides they are 100.00 copay each time. Translation-----100.00 every 2 weeks.
Do you have a link to demonstrate tightening neck muscles ?
Oh, you know I think my mom is B12 deficient for sure...she had a major operation past spring for hiatal hernia (big one) and wasn't eating for months and months....she won't listen....told her to ask her dr. since he sends her for blood work anyway and no, she just won't hear it. Trying to teach others what you have learn along the way is a great thing but when others don't want to take the advise....that's all we can do.
I don't know where to go to get tested for EDS. I asked the cardiologist I saw last week and she is all for testing me for whatever I want (yes, another dr. in my court) but said not blood test see a dermatologist. Called my dermatologist office and she said dr. can do a physical examination but need geneticist. Dr. Claire Francomo (sp?) is a minimum 6 month wait. Ughhhh....had I have gotten on her list in July....I would almost be ready for an appointment. Stupid me for not doing it back then.
Did you ever get headaches when you sit down, stand up or go up/down stairs.
Between this breathing and these headaches....really concerned.
Remember I had those injections. Well, what I can say is I did not have the headaches/migraines, dizziness, visual disturbances and light sensitivity for almost 3 weeks afterwards. Now it is back with a vengenance. Horrible. Not sure if it is worse than before or just feels worse since it was absent for those several weeks. :-(
The Topamax is not working for it....800mg Ibuprofen will but not supposed to take it everyday...easy for them to say since that is the only thing that somewhat touches the pain. Does not relieve the other symptoms of dizziness though.
I did say never would do those injections again as they were traumatizing....you commented, never say never. You were right....never say never. I think I would much rather let them go in and perform the ablation on the nerve than to go through those injections. Besides they are 100.00 copay each time. Translation-----100.00 every 2 weeks.
Do you have a link to demonstrate tightening neck muscles ?
Oh, you know I think my mom is B12 deficient for sure...she had a major operation past spring for hiatal hernia (big one) and wasn't eating for months and months....she won't listen....told her to ask her dr. since he sends her for blood work anyway and no, she just won't hear it. Trying to teach others what you have learn along the way is a great thing but when others don't want to take the advise....that's all we can do.
I don't know where to go to get tested for EDS. I asked the cardiologist I saw last week and she is all for testing me for whatever I want (yes, another dr. in my court) but said not blood test see a dermatologist. Called my dermatologist office and she said dr. can do a physical examination but need geneticist. Dr. Claire Francomo (sp?) is a minimum 6 month wait. Ughhhh....had I have gotten on her list in July....I would almost be ready for an appointment. Stupid me for not doing it back then.
COMMUNITY LEADER
I know what u mean, I was given the Fibro DX and my mom and sister have that DX as well, but my NS and the NL at TCI told me it was EDS causing the pains and trigger points they look at for fibro to test positive for fibro...as I have more tender points then the 18 they look for .......
I am sure my sister has EDS as well....just cannot get her to listen....my mom,....I really am not sure what is going on with her,,,,,
I know my Chiari DX is more on my dad's side I really feel he has it as well....can't get him to get tested as he feels why at his age, but for the rest of us it may help....sigh...
Good to know the H.Pylori info as it was just both my parents living in the home ...but I never would have considered that in an even neone in my home contracted it....so thanks.
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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....