chiari 1 symptoms without papilledema

Question

Hello,
I have a question for those of you with chiari 1 malformation.  I was diagnosed with a chiari 1 after I had an MRI following a near drowning incident in 04'.  I've never had any issues or symptoms with it.  About 6 months ago I felt like I was getting a sinus/ear infection and began to have reccurrent bouts of vertigo.  The past few weeks I have had a constant headache on the right side of my head, I wake up without headache and then when I sit up I get a throbbing pain in my right temple/occipital region.  It always lingers through the day, it is worse when I bend over, cough, strain, workout, etc.  I saw ENT and discussed my CM1 with him, he sent me to opthomology to look for papilledema and the eye dr said there was none.  My question is, is there any of you who have symptoms and have a negative exam for papilledema?  Thank you for any help.

jabenr · Answer

Thank you Selma, I appreciate the information and the support.

selmaS · Answer

Not everyone with chiari is a surgical candidate....and many r monitored....at some point if things change the reality of surgery could change,,....but the drs do not and will not do surgery if the benefits do not out weigh the risks.

 I was scared too, but I am still here, but I had some of the best drs on the team in the OR....once u find the right Drs if and when u r facing surgery , that does help : )

  "selma"

jabenr · Answer

I have never thought of it that way, but it makes sense.  About 5-6 years ago I had alot of dizziness and anxiety and saw several doctors, they finally decided I was having Panic attacks and put me on SSRI's and xanax which helped and then the problems went away.  I stayed on SSRI's for several years and finally took myself off (which was a horrible experience, withdrawal from SSRI's was a terrible thing to go through even though I tapered as directed to do).  I went for several years symptom free until 6 months ago when the vertigo started again, which was accompanied by panic attacks (this time I realized that the vertigo was causing the panic attacks and not the other way around).  Then we looked for vestibular tumors, and considered Meniere's.  Then the headaches have started now, now we are ruling out other things.  However, perhaps you are right...maybe I have had chiari symptoms all along and since they have not been consistent I have not viewed them as related.  I have my MRI and MRA on wednesday, I'm anxious to see what comes of these tests.  Do you know of many people with less severe symptoms that have done well with medical management and monitoring?  I have to be honest....brain surgery scares the heck out of me and I am not ready to consider that as an option yet.

selmaS · Answer

Hi...yes, this can be chiari related, it can also be from reflux which can be chiari related.....
 But chiari can affect our voice...I had my voice disappear when trying to sing,....and would get a strange sensation in my throat...it is so odd the symptoms and issues this condition causes.

 I would venture to guess u may have had symptoms, but bcuz of the way they cycle and the fact they were not severe u did not consider them a continuing issue.....

 Mine was the opposite I had no idea what was wrong for most of my life, but knew something was up...Drs always attributed my symptoms to other things and never looked beyond a simple explanation...such as anxiety...stress, migraines, growing pains,,..etc...

  "selma"

jabenr · Answer

One other question I have for you all......do any of you get a hoarse voice as a result of your CM?  I seem to wake up hoarse every morning and in goes away as the day progresses, but it is hoarse again the next morning when I wake up.  Thank you for the advice, knowledge and experiences you have all shared with me, it helps to know that I'm not the only one in the world with weird symptoms popping up.  One other thing....it was 7 years ago that my CM1 was found incidentally and I've never had any symptoms until the past 6 months, have any of you had an experience like this where you've known about your CM for a long time and then it all of a sudden possibly progresses and causes you problems?

jabenr · Answer

My sister-in-law loaned me her tens unit last night and I placed it to stimulate my neck and upper back on the right side where my headaches are....this morning was the first day I woke up without having sharp throbbing pain when I sat up.  My headache returned as the day went on, but I think it helped to relaxe my neck/back and I will continue to use it.  It may be worth trying for some of you.  I think I may start some massage therapy as well.  It was definately nice to have some reprieve from the constant headache!!

jabenr · Answer

Just to let you know....nondrowsy dramamine is meclazine, thay are one and the same and it makes me sleepy too, not as much as dramamine does though.  I find that 5mg valium works best for vertigo and does not make me sleepy like the atihistamines like dramamine, meclizine, etc. do.

selmaS · Answer

My DD gets motion sick all the time and uses it, and when I got the vertigo it was here...so, it was something I tried at the end of my issues...but, it did help some for me...and I know it may not help everyone...but yeah the non drowsey formula is great bcuz most meds to help with this issue will make u sleepy.....

lydelia · Answer

I didn't know Dramamine had a non-drowsy formula. I am glad u posted that. I took some generic meclazine(sp?) last week and went to work and wound up half a sleep most of the day. I will have to get the other stuff, lol.

selmaS · Answer

Meniere's is something that many with chiari have been misdx'd with, but there is always a possibility u have both...so testing to rule these out is a good thing.....

 The vertigo is something I think we all get...as well as the accompanying nausea and vomiting.....I used to say...I just vomited and I don't feel sick to my stomach I wonder what that was about.....strange....oh well and then u forget about it until u get the dx.

 For those with vertigo...if u want to try the non drowsey formula of Dramamine it can help....

sxsxsx · Answer

Everything you describe soulds exactly like what I am going through. Especally the pain, and fullness in your ears. I also get vertigo and nausea.

lydelia · Answer

I've never been examined for papilledma, but then again I don't have much in the way of vision problems either. Like selma and jenshead, I think that with Chiari there are varying stages of things because the severity of CSF blockage can vary, with some having almost complete blockage to some having nearly none or none at all. 

I do however share some of your symptoms, with the most recent for me being rounds of vertigo and nausea and some crippling fatigue. I actually had a friend last night ask me if I was pregnant since morning sickness, in me anyway, can mimic those symptoms. Two EPT's later, not pregnant, so it is back to Chiari, lol.

jabenr · Answer

I meant to type 'without being elevated enough to cause papiledema'.

jabenr · Answer

I agree, I think elevated pressure could cause symptoms with being elevated enough to cause papilledema.  My symptoms started with bouts of vertigo and now I have this headache that varies in intensity, it is worse when I do things that would increase ICP.  I had an MRI last month to look for vestibular neuromas, etc. for the vertigo, we've looked an possibly Meniere's.  My ENT looked at the MRI from 04' then went to compare to the new MRI and they did not take sagittal views so he could not evaluate the possible progression of my CM1.  Saw my primary today and now I'm going for an MRA to look at vascular causes which seems like an excellent next step to me, they will also redo the MRI with sagittal views to reevaluate the CM1.  The headache almost feels like sinus to me and I have intermittent fullness in my ears, I have also been lifting weights and doing strenuous cardio in the gym the past couple months so I also wonder if I may have strained something in my neck/back and maybe the headaches are tension related or a nerve pinched.  It is rather depressing to me that I have been working hard to lose weight and get healthy and keep having these different problems arise.  I think the plan of action seems appropriate though and suppose that a visit with a neurologist would be the next step after ruling out vascular issues, etc.  If the CM1 turns out to be the likely cause, have any of you had much luck with controlling symptoms with meds and monitoring vs. surgery?  I feel that brain surgery would be an absolute last resort for me.

selmaS · Answer

I agree with ur way of thinking on this one......

jenshead · Answer

Papilledema is swelling of the optic disks, right?  That would happen if you have very high pressure in your brain.  I've heard of some people with CM having that but not all.  To me, and this is entirely speculation, I would think many people with CM have higher pressure than normal but not high enough to cause papilledema or be considered hydrocephalus.  Wouldn't it take a complete CSF blockage to cause those things?  

My doctors checked for papilledema to rule out pseudotumor, not CM.  Granted, they won't even give CM 2 seconds of consideration :)

sxsxsx · Answer

Hello, for years and I mean years I thought the throbbing eye pain and blurred vision was due to my eyes. I saw two different retina specialist in a span of over 9 years about 8 times or more; always thinking there was something wrong with my eyes because of this horrific pain. I do have retina (lattice degeneration with floaters) issues so I always related the pain to there being something wrong with my eyes. The last time I went to the retina doctor he was such a jackass he totally dismissed all of my symptoms and said it had nothing to do with my eyes. I was so upset because after years and years of them telling me it's sinus pressure,it's allergies, it's normal he made me feel like I didn't belong there. I went back to my family practice and they ordered a ct scan that showed CM1 that was confirmed with an MRI. My headaches are better but I still have serious vertigo spells throughout the entire day without warning. My eye issues still exist but I will be switching to a new retina specialist/ ophthalmologist. As far as the test you discussed I don't even think they tested me for that. He would however perform an eye exam and my eye pressure along with everything else has always been on target.

selmaS · Answer

Sorry...Post nasal drip...it has gotten soooo much better post op.

 Yes, floaters, blurry vision, depth perception is way off, periphial(sp) vision was wavy at times,dry eyes.....

jabenr · Answer

Also, what vision issues do you have?  I have floaters and blurry vision in the mornings, but no other vision issues.

jabenr · Answer

Thank you for the reply.  What do you mean by PND?  Post nasal drip?  Paroxysmal nocturnal dyspnea?  Thanks agian.

selmaS · Answer

Hi and welcome to the Chiari forum.

 I did not have the exam to look at my optic nerve during my pre op issues....and right now, I can not recall my NS or neone else mentioning it at the time...I still have vision issues and plan to go soon...but, I did not have this dx b4.

 Not sure if that is what u were looking for....

 But all the symptoms u mention I did have including drop attacks, PND, and a few others.....

  We r happy to have u join us, but not happy for the reasons that bring u.

       "selma"