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Chiari Malformation Community
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Avatar universal

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


59 Responses
620923 tn?1452919248
COMMUNITY LEADER

  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....
620923 tn?1452919248
COMMUNITY LEADER

  Hi  first u can not acquire Chiari Malformation, u can acquire low lying tonsils that are treated the same way, and cause the same symptoms...but u can not acquire a malformation of the skull that u r born with...

Could a Spontaneous CSF leak cause the cerebral tonsils to herniate? Yes, it can....

Will it cause the same symptoms as Chiari? Yes

U may have POTS.....which is an orthostatic condition related to Chiari .

Have u been to a Chiari specialist?

  
Avatar universal
Sorry, that is what I meant.  Arghhhh.  So many doctors, it gets confusing.

He said small spontaneous CSF leak causing herniation of cerebellar tonsils.

So essentially would that conclusion mean that I have or do not have CM ?

MRI's

1st - Rounded cerebellar tonsils slightly below the level of the foramne magnum which is probable normal variant although symptoms of Chiari I Malformation should be excluded clinically

2nd - The cerebellar tonsils extend approx. 4 mm below the foramen magnum which is within normal limits.

3rd - Patients cerebellar tonsls only extend 3mm beyond the foramen magnum, which is minimally low-lying but does not constitute a Chiari malformation.

4th - The cerebellar tonsils extend 3-4 mm below the level of the foramen magnum and are position well above the atlas, this is within normal limits.  No Arnold-Chiari malformation.  Normal phase contrast CSF flow study.  This MRI was without contrast.

I think I understand now.  The tonsils could have been herniated due to the neck trauma even though you do not have a malformation of the skull ?
620923 tn?1452919248
COMMUNITY LEADER

  Ur tonsils may be herniated by the leak, but if u have CM or not is something the NS should be able to tell u...it depends on if ur skull is malformed.

However even with low ling tonsils u will feel the same symptoms and it is treated the same most of the time....some times they wait to see if the tonsils will retract...if enuff room this can occur....

But it is also possible that u have both issues, Chiari and the leak encouraged the herniation sooner then it may have occurred.,

The biggest problem Chiari or not it is not the length of herniation that makes it Chiari nor symptomatic and too many look at the length to indicate what they should do instead of listening to the patient and the symptoms.

Was a  syrinx ruled out in all areas of ur spine or other possible issues?
Avatar universal
In 2010 yes.  Trying to get new thoracic and lumbar mris approved.  Awaiting NS appt.  He is supposed to have performed lots of Chiari related surgeries.

Maybe I will hang upside down on the inversion table lol
620923 tn?1452919248
COMMUNITY LEADER

  LOL....well it is a conundrum of sorts isn't it.....

Hope u get the testing approved.
Avatar universal
It's like the revolving door in a hotel.  Just keeps going around and around and around and around.  

New computer software that is delaying my office notes from moving forward in a timely fashion.  Ughhhh.

My neighbor had an excoworker that had surgery by this NS so I stopped by her house today and asked that she ask the person to contact me with her situation (opinion, treatment, recovery, etc.).  Although I know everyone is different, it is nice to get feedback on a specific doctor.  She has two friends that had it done.  One that has endured problems afterwards and now being referred to this NS and the other one had the surgery by this NS about 5 years ago.  

Never a dull moment !

Hope you are feeling great today !!!
620923 tn?1452919248
COMMUNITY LEADER

  It is always something ...sigh

  So these other people all going to this Dr for Chiari ?
Avatar universal
Yes, yes it is.

On has already had it done approximately 5 years ago and is doing great.  

The other one had the surgery by a different NS in a different state and has complications so they are coming here to see this NS.

620923 tn?1452919248
COMMUNITY LEADER

  Wow I had not met neone b4 my surgery except for online....u r so lucky to have that connection.
Avatar universal
Yes I am.

There was a nurse I met recently and I mentioned Chiari and she said she was very familiar with it has her son had the surgery 12 years ago and has not had any problems since.

She took him to a dr. in Delaware.  As she said she was not fond of any of the drs. in Maryland.

Crazy what communication can open up.
620923 tn?1452919248
COMMUNITY LEADER

  Oh I know....I guess we do not have that Drs name on our list....hoping neone that finds a good Chiari Dr not on our list adds it...as it can help others that are looking.

I have yet to meet neone in my area....and I do mention it all the time...lol...
Avatar universal
Disgusted !  Derailed.

Although I told the NS with the theory of csf leak that I had already been to NS @ JH and tossed out that I did not think it would be a good idea to see another one there as it would probably be a "conflict of interest".  Nope gonna handle it and make a call.

Tried repeatedly to just send my films/cds/reports there for review with new NS and told could not.  Needed paperwork from referring NS and then schedule.  Now a couple weeks into it and office staff decides best to send in cds/films for review before appt. as she wasn't aware I had already been to see other NS at that facility.  Explained situation with this NS and hmmmm, will look into it.  Really...if the first NS had given me the time of day to explain the process and listen to me like this one than I could have stopped a few months ago explaining and probably received a plan.

So now I will sit back, look for yet another doctor with 1/2 an ounce of sense to start all over again.  Wow, I really shouldn't be shocked that this happened.  I predicted it and voila.

Selma, if I actually make it into an appt. with this NS I will def. let you know
the information.

Frustrated beyond belief.  My PCP was even excited.
620923 tn?1452919248
COMMUNITY LEADER

  So is it ur INS that warrants a referral or this office?

  I know with a PPO plan u do not need referrals, and with a HMO u do....

And with all the medical INS stuff going on it is no wonder things are difficult and it may get worse b4 it gets better.....

At this point they just want to review ur records...so send those and I am sending u all the positive energy for them to take u seriously and decide to see u and soon.

I understand ur frustration...hang in there <3 ((hugs))
Avatar universal
Good morning Selma !

I have "open access" on my insurance so a referral is never needed which is good.  

This is always all over the place....just like my days running around to different appts. and then doing everyones job that didn't correctly bill ins. and get preauth. for testing, etc.  Argghhhhhh.  Try to lay it out a little better now.

I have been sent to several NL over the last few years.  They dx me with migraines all the time.  Great but we all know there is more to it than just migraines.

Changed my PCP past spring who bypassed NL and called NS at JH to see me.

She saw me with ordered MRI w/csf flow study.  Her PA called and said no need to come back see a NL.  With no suggestion of a particular NL which sucked because they all have huge wait times and subspecialties.  Got no help here.  Spoke with staff who was to call me back....2 months ago.  Great help.  Still looking for an "eyeroll" button here.

Orthopedic dr. referred me to different NS at different facility.  He is referring me back to JH to different NS.

Yes, staff wants me to send records but after phone conversation with her and the concern that I already seen a colleague, did not sound positive.  As usual went from great yes we are gonna help to ummmm hmphhhh.

The sad part is trying to tell a dr. your problems/symptoms/history in 15 minutes, something is sure to get missed.  The one thing that triggered this dr. was the fluid from nose.  Although I always tell the same story repeatedly, it could have been forgotten in the first NS office.  

I think.....write detailed note and attach to films/cds, drop off on Monday morning directly to office.  Not mailing it as requested because with my luck it is going to get lost.  Will see how far this gets me.

What I am finding truly interesting is that the first NS wanted me to bring back cd then had PA call and say NO see NL.  Did she look at the CD ???
According to my pcp that dept. would have access to films/cds on computer.  Not sure about this.  This last NS is requesting them to be mailed....same facility, same dept.  Makes no sense.  Because if this is the case, why would the other NS at U of M need to scan my cds in their computer.  

Something is off here.

She also mentioned the other NS in the mix but that was for different problem and lord knows I asked him to look at my cds while I was there and that wasn't going to be done.  SMH.

Thank you for the positive energy.  LOL, I need all kinds of energy now as my body is so fatigued.  Like lifting cinder blocks.  Hate that feeling.

Must start Zumba soon !!1

620923 tn?1452919248
COMMUNITY LEADER

  I totally understand ur frustration and many times it is the office staff that gets in the way ....ugh....

I was going to suggest to write everything down this new Dr needs to know, and I think the dropping it off is a great idea....

B4 u do, make sure u have ur own copies of everything u give them and make sure to get a signature on the items u drop off to show who received it...if u r not comfortable asking for it, send it registered...that way u can track it and they must sign for it.

Good Luck and keep pushing ((hugs))
Avatar universal
Thank you !!!
Avatar universal
Update.....

I created a very informative letter to this NS with detailed information from time of incident, symptoms and progression of, dx and lack thereof, etc.  Attached to my cd's in an envelope.  Personally took it to his office and handed it to his secretary with the other NS secretary there during conversation.  No, I did not get a signature as I don't think she really would have signed for it.  Had I of sent the package certified that would have been obtained however that would probably be sitting in JH until January awaiting appropriate delivery.

Referring NS's office manager called to inform me that this NS personally called and discussed the situation with this other NS and they would be calling me to schedule an appointment as he thought it was imperative that he meet and speak with me.  This was last week and I have yet to hear from them to schedule appt. so I will attempt to call them tomorrow.

We will see.  Feeling horrible with that breathing difficulty.  Still don't believe it is asthma as cardiologist did a breathing test and treatment for testing on me a few weaks ago to address shortness of breath and trouble breathing and according to her it was negative.  

She advised acid reflux rx and now after bloodwork apparently I have acquired extremely elevated levels of LDL in my cholesterol panel so will have a rx for that as well.  This is horrible....absolutely horrible.  

I tell you it is something to see that I went from no rx to 12 and I really don't think they are for accurate diagnosis' to warrant the medications.  I understand the LDL but my diet is not that bad, as a matter of fact I barely eat anything as I am nauseated at all times.  What I do consume is good.

SMH

Thanks for the luck and as always.....I am continuing to push....just getting so exhausted anymore !
620923 tn?1452919248
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,.
Avatar universal
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.





620923 tn?1452919248
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.
Avatar universal
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 :-/

620923 tn?1452919248
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,....
Avatar universal
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.




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