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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
Yes we do have alot in common. Interesting isn't it ?
Can you please tell me what other testing is needed for the magnesium and thyroid ?
Did your blood pressure get better with magnesium and D supplementation or after your surgery ?
Initially when this all happened in June 2010 I lost alot of weight in one month as I was so nauseated and dizzy that anything and everything was making me sick. In fact I continued to lose weight until September 2010 when I told my PCP (at the time....you know I didn't keep him long as I had to tell him where I should be sent) I needed GI referral. Got to GI and he did endo/colonoscopies which resulted in H. Pylori. I took the PrevPak antibiotic and it cleared with that on the first time. Which thank goodness because that was a very rough two weeks with so many antibiotics in your system daily....
I got the joint pains really bad towards the end of two weeks and was ready to quit when he said just try try try to stick it out. I did and god for that I suppose. Tested one month and two months later and negative and I have requested to be tested each year since just to make sure. We travel out of the country frequently and I don't want to pick up parasites :-/
My B12 was already low at 236 in June and had dropped a little lower in December which was when a NL said.....NO, you need injections NOW. According to him anything under 400 can give people neurological symptoms. I was having weakness and fatigue (still have that though) but also the skin on my thighs and lower back were burning. It was very nerve wracking....it does still happen periodically though.
Recently had a dr. run bloodwork and included B12 when the dr. said oh, your B12 is fine you don't need injections....No crap Sherlock....it's fine because I take injections with the most recently being one week before the test you gave me, lol. B12 is one of those tests (I am sure you know) that requires additional tests in order to make the determination of deficiency. MMA/MethylMalonic Acid (sp?)
This breathing issue realllllly freaks me out. It is the holidays and I am so devastated that I am so fatigued and have this crap going on right now.
Btw, I asked my PCP about EDS and he said he did not believe that I had it and that I would be able to extend my fingers way back, etc. So I said well look at my knees, they go back. He said well not too much and you would have to be like over 6 feet tall.....I was like HELLO....that is Marfan's Syndrome.....LOL, he was like.....you do research don't you...bahahaha.
I really do like him, he is pretty funny.
Can you please tell me what other testing is needed for the magnesium and thyroid ?
Did your blood pressure get better with magnesium and D supplementation or after your surgery ?
Initially when this all happened in June 2010 I lost alot of weight in one month as I was so nauseated and dizzy that anything and everything was making me sick. In fact I continued to lose weight until September 2010 when I told my PCP (at the time....you know I didn't keep him long as I had to tell him where I should be sent) I needed GI referral. Got to GI and he did endo/colonoscopies which resulted in H. Pylori. I took the PrevPak antibiotic and it cleared with that on the first time. Which thank goodness because that was a very rough two weeks with so many antibiotics in your system daily....
I got the joint pains really bad towards the end of two weeks and was ready to quit when he said just try try try to stick it out. I did and god for that I suppose. Tested one month and two months later and negative and I have requested to be tested each year since just to make sure. We travel out of the country frequently and I don't want to pick up parasites :-/
My B12 was already low at 236 in June and had dropped a little lower in December which was when a NL said.....NO, you need injections NOW. According to him anything under 400 can give people neurological symptoms. I was having weakness and fatigue (still have that though) but also the skin on my thighs and lower back were burning. It was very nerve wracking....it does still happen periodically though.
Recently had a dr. run bloodwork and included B12 when the dr. said oh, your B12 is fine you don't need injections....No crap Sherlock....it's fine because I take injections with the most recently being one week before the test you gave me, lol. B12 is one of those tests (I am sure you know) that requires additional tests in order to make the determination of deficiency. MMA/MethylMalonic Acid (sp?)
This breathing issue realllllly freaks me out. It is the holidays and I am so devastated that I am so fatigued and have this crap going on right now.
Btw, I asked my PCP about EDS and he said he did not believe that I had it and that I would be able to extend my fingers way back, etc. So I said well look at my knees, they go back. He said well not too much and you would have to be like over 6 feet tall.....I was like HELLO....that is Marfan's Syndrome.....LOL, he was like.....you do research don't you...bahahaha.
I really do like him, he is pretty funny.
COMMUNITY LEADER
Goodness u had H.Pylori? How long ago? How many rounds of antibiotics did u need to clear it up?
Many times Vit D is low if Magnesium levels are low u need the magnesium in order for ur body to absorb the D......the testing they do for Magnesium is not effective in giving proper results, kinda like getting a TSH for thyroid when u have an auto immune issue it can read "normal" when in fact it is not...u need other testing to know for sure, same goes with magnesium,
I also always had low BP and I take magnesium so my D gets absorbed in fact when I started on a D supplement I had symptoms of D toxicity and in researching found that can happen even with low D levels if ur magnesium is low....
Wow we have so much in common even if not identical issues,....
Actually I had the thyroid ultrasound last year and it showed negative. I do have a b12 deficiency that was thought to be acquired due to H. Pylori infection. If I do not take the injections my numbers go back down. They don't know why a deficiency is still there though. Further testing has ruled out pernicious anemia, etc.
Vitamin D is low right now. Started taking 5000 per day. Magnesium levels are good. However, I was instructed to take 400mg per day magnesium for migraines....downside is that magnesium also helps lower the blood pressure. I already have low blood pressure so this isn't going to work.
Potassium seems to check out okay as well.
I went into early menopause by way of surgical menopause :-/
Vitamin D is low right now. Started taking 5000 per day. Magnesium levels are good. However, I was instructed to take 400mg per day magnesium for migraines....downside is that magnesium also helps lower the blood pressure. I already have low blood pressure so this isn't going to work.
Potassium seems to check out okay as well.
I went into early menopause by way of surgical menopause :-/
COMMUNITY LEADER
Those fluctuations in levels is typical for Hashimoto's u can be hyper then hypo then normal...
Oh I always had a raspy voice....it comes an goes...mainly a weather related issue now ....
The thing I also found out is EDS can cause us to not absorb certain vitamins and minerals which can affect our thyroid etc....so it is important to check these levels too...Vit D, B12, magnesium and potassium.
Have u had ur thyroid ultra sound yet?...It can help u figure out if u do have a thyroid issue they have not found, as u do need to go every 6 months when DX'd with Hashi's....as it changes so much, and u need to make sure the nodules on the thyroid are not getting larger.
Bcuz of all this being over looked by Drs for on me for yrs I went into early menopause and had many issues, if they only would have looked for an auto immune issue ...who knows....but it stinks and can seem to take forever....
There are so many things (body functions) that are affected by this condition and I do not feel the Drs realize just how much it is affecting us.
You hold so much information ! I can not even believe that you just said you are no longer on thyroid medication.
My cholesterol levels were PERFECT before all this. Absolutely perfect. Actually everything was perfect. SMH
Ok, so I have never had a thyroid issue and after repeatedly having symptoms and no one knowing what was going on I decided to get all my labwork out and track my own levels of different tests.
This reflected that my thyroid was all over the map. Extremely high to extremely low in a one week period so after months of this rollercoaster labwork I decided to see an endocrinologist. He said my thyroid was fine, I proceeded to ask for the thyroid panel to check for autoimmune thyroid problem. That test came back negative.
Decided to check into another endocrinologist and he said my thyroid was borderline, I believe it was 2.48 when he checked it. Since then we did a trial of levothyroxine and it really went crazy so had meds increased and voila....currently on thyroid meds.
No one in my family (even extended family) has a thyroid condition, so my feelings on this are yes, the thyroid medication helped with thyroid related symptoms however I don't believe that I truly have a thyroid condition and that it is all related to this tonsillar herniation. Never had a raspy voice that comes and goes prior to all this either, lol.
As a matter of fact, my 9,687 followup with my PCP was 2 weeks ago and upon leaving I mentioned to him that I don't believe that I "truly" have a thyroid condition. His response....."have you heard from the NS yet?"
He actually had nurse contact me this past week and ask if this NS had contacted me yet. I said NO and tell him to be so kind as to make a call to him and get his but in gear as my patience is really being depleted here.
My cholesterol levels were PERFECT before all this. Absolutely perfect. Actually everything was perfect. SMH
Ok, so I have never had a thyroid issue and after repeatedly having symptoms and no one knowing what was going on I decided to get all my labwork out and track my own levels of different tests.
This reflected that my thyroid was all over the map. Extremely high to extremely low in a one week period so after months of this rollercoaster labwork I decided to see an endocrinologist. He said my thyroid was fine, I proceeded to ask for the thyroid panel to check for autoimmune thyroid problem. That test came back negative.
Decided to check into another endocrinologist and he said my thyroid was borderline, I believe it was 2.48 when he checked it. Since then we did a trial of levothyroxine and it really went crazy so had meds increased and voila....currently on thyroid meds.
No one in my family (even extended family) has a thyroid condition, so my feelings on this are yes, the thyroid medication helped with thyroid related symptoms however I don't believe that I truly have a thyroid condition and that it is all related to this tonsillar herniation. Never had a raspy voice that comes and goes prior to all this either, lol.
As a matter of fact, my 9,687 followup with my PCP was 2 weeks ago and upon leaving I mentioned to him that I don't believe that I "truly" have a thyroid condition. His response....."have you heard from the NS yet?"
He actually had nurse contact me this past week and ask if this NS had contacted me yet. I said NO and tell him to be so kind as to make a call to him and get his but in gear as my patience is really being depleted here.
COMMUNITY LEADER
Since ur LDL is elevated, have they suggested looking at whether or not u may have Hashimoto's thyroiditis? It can affect ur cholesterol levels....mine were elevated and have since lowered, I was on meds for thyroid until approx 1 yr post op, no longer on them....my Cholesterol levels are below the range for high LDL, but since I have a family history of diabetes my Dr wants it lower....so I am working on diet as a means to help lower it and keep it where it needs to be for me,
Many of us do have acid reflux and many times we do not have the typical symptoms like heart burn so do not think we have it, but LPR or Silent reflux can be present.
I pray u hear from them soon,.
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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....