Very confused...Please help!

[joyus12b]

Hello everyone,
I am having some health issues that are very out of the ordinary and would like some perspective on my situation.  I apologize in advance if it turns into a novel.  To begin, I am 31, and I live in Georgia with my husband and two kids.  I went to Orlando to meet up with my kids who were visiting my husband's mother June 30 for the fourth of July weekend.  My husband is in the military, so he could not leave until Friday evening to visit.  

Sunday, June 27
I noticed some pressure on my right ear that has not gone away.  The pressure is similar to the pressure I feel after exercising or exerting myself.

Tuesday, June 29
I went to the dr because my lip was swelling possibly due to an unknown allergy, the dr gave me some zyrtec and benadryl and put in a referral to see and allergist.  That evening while cutting the grass my lip started to swell again, but this time on my right side, I then felt tingling in my cheek and my right side of my mouth began to droop down.  I thought it had to do with my allergy, finished cutting the grass, put the grass clippings from the lawnmower bag into a brown yard waste bag and went inside and took a shower.  

Wednesday, June 30
Left town to meet up with family for the fourth of July weekend, brought my dog with me.  That evening I noticed some tingling and numbness on the right side of my cheek and the side of my head, but thought I could wait until I got back home and made another appt with my PCP.

Thursday, July 1
The tingling and numbness would come and go, but still did not go to the ER.

Friday, July 2
Around 1130 am I felt the tingling on my right side of my cheek but also a radiating sensation above my jaw toward my mouth.  Also, the tingling in numbness on my cheek and head would come and go, and by 3pm when I went to the bathroom I noticed a slight droop at the corner of my mouth.  Made a mental note  to talk to dr about it on Tuesday when I got back home.  A little while later I went and gave my dog and my MIL's dog a bath in her bathroom.  She has a garden tub that is pretty deep so I had to lean over to bathe them.  As I was bathing them I noticed an increase in pressure in my head, and I was out of breath, moreso when I was drying them off.  When I finished, I went downstairs, a bit lightheaded and then my jaw started to hurt.  Went to go talk with my MIL about it and then felt my right side of my face go completely numb, and my mouth droop downward, my tongue went to the right as well, slurred my words, felt a pulling on my right eye downward, and a ringing in my ears.  

We made the decision to go to the emergency room.  They took me back immediately for a ct, I was informed they thought I was having a stroke, and was told I was being medivaced by helicopter to a larger hospital that had a stroke team.  My MIL called my husband and he left Savannah immediately, but would not be in Orlando until 10 pm at least.  My face was drooping for a while, then before I left that hospital, I felt the drooping ease up, I was able to talk clearly again, and then a minute later, my face would droop and I would slur my words, and a minute later it would ease up and I could talk clearly.  I now refer to this as a facial spasm.  

Anyway, when I got to the larger hospital, it was determined that I most likely did not have a stroke because the facial paralysis would be permanant.  They informed me that my ct scan from the other hospital showed a spot on my brain that was possibly an old stroke from  years ago.  I was shocked, because I have been in pretty good health except for the occasional migraine.  Still reeling from the news, I was then told that I  had to have my IUD removed that I had put in two weeks prior because I would be getting an MRI.  That was fun.    

The MRI took about an hour and a half and they then brought me back to the ER.  After about an hour, the drs came in and told me that they "think"  I had a stroke, but I was getting admitted for more testing.  My husband finally showed up at 11 pm and was taken to my room shortly after.  There were no beds available on the neuro floor so they took me to the orthopedic floor.  I was told to relax and I would see the drs around 10 am saturday.

Saturday, July 3
My symptoms got worse that night, the facial spasms were different, my tongue was not spasming, but I felt pressure in my head on the right back side, the facial droop was the same, but I noticed a "spasm" of sorts radiating behind my eyes.  These spasms are similar to a contraction, where I felt it coming, it got stronger, then would ease up.  The pressure on my right ear remained the same, never went away. Early Saturday morning, a dr showed up to check on me, told me that I did not have a stroke, but I would learn more when the "team" of drs made their rounds.  When the team of drs showed up the dr that saw me earlier was not there, but they were now telling me they thought I had a stroke because something showed up on the mri but had to wait for the neurologist to come see me.  Mind you, hearing one thing, then hearing something else was stressfull, and my husband got to the point where he went off on them due to their miscommunication amongst each other.  

Later that afternoon, I noticed that if I put my hand to my cheek when having a spasm, or if I wiggled my tongue when it was spasming, the spasm would stop, but once i stopped moving my tongue, or removed my hand from my jaw, the spasm would return immediately.   I then noticed that with whichever way my head was turned, I would have a differnt type of spasm. I was also starting to have tingling in my right hand, and right foot, and my right side was noticably weaker than the left.  The neurologist was baffled by this, and started rattling off tests to the nurse that he wanted completed including another MRI as well.  They took my blood and then sent me for the MRI which took another hour and a half.   I then had an EEG, which showed up fine, but once I moved from my back to my right side, the spasms returned uncontrollably.  I had it all over my face, it felt like my face was being pulled into a million pieces.  I had spasms on my right and left side of my face, my forehead, and my eyes.  The cause of this is still unknown.  

The neurologist came to see me, explained to me that I had a chiari 1 malformation and that once I had an operation I would be fine.  So, he put in a consult to see a neurosurgeon.  The neurosurgeon came and told me that my csf flow was not obstructed and that he saw no reason to operate and i only had a 2 mm herniation.  This was the first time I heard a number.  

Sunday July 4
I decided I wanted a second opinion on the neurosurgeon, and the neurologist as well, just to be on the safe side.  The 2nd opinion never came to talk with me about my symptoms, they just wanted to talk with me about stress and pretty much decided that it was all in my head and a conversion disorder was suggested and that they put in a consult to psych.  Also, I did learn that when they spoke to my sister in the hallway, it was a 8 mm herniation.

At this point I explained to them that this happened to me only when I exerted myself, but they still insisted that it was conversion.  I saw the psychiatrist for maybe 10 minutes, explained to him my symptoms and that they were triggered by exertion and he left without explaining anything to me.  I then was informed by someone else that he suggested that it was not conversion but anxiety and depression.  

I felt like I was in a twilight zone.  I was in the hospital for 2 weeks, because I had extreme right sided weakness, and whenever the physical therapist would come in i would start spasming from the exertion and the pressure in my head would increase tremendously.

Sorry, told you this would be a novel....to be continued

[selmaS]

U r welcome : )

Well the herniation can be bilateral....there r 2 tonsils. Many with the tonsils with diff herniations we tend to find some of our symptoms r one sided.

I am glad the pear analogy helped : ) it was explained to me like that by my dr and it does make sense.

I hope this dr Thompson is able to offer u help and is the right dr for u,.....the searching can get a bit daunting....but do keep pushing until u find the dr that is a right fit for u.

"selma"

[joyus12b]

Thank you for the pear analogy...it makes a whole lot more sense the way you explained it....actually, no dr, actually explained my true herniation size.  

As to my referral:  The dr is a pediatric neurosurgeon, and when I asked the lady who called to make my appointment if he indeed was a chiari specialist, she emphatically said yes.  I will definately update when I have my appointment.

My referral is for:  Neurological Institue of Savannah, and I am seeing Willard Thompson.

Again, thanks for the reply, I appreciate it.

Jocelyn

[selmaS]

HI and welcome to the Chiari forum.

It does seem u have gotten the royal chiari run around...so sorry, it is not fun...from drs discounting chiari and claiming it is anxiety , depression, or conversion issues.

I am curious as to who u r being referred to and if they r already on our list of chiari specialists. Please check, and once u meet this dr if not on our list and u feel he/she is a true chiari specialist, please add him/her to our list : )


In regards to the variant in ur herniation size...it can also be a diff slice that was taken....to explain I use my upside down pear...imagine...the pear is upside down and u slice it in thirds...the first and third sections will appear shorter than the middle section...when a MRI is done if the slices r not exactly the same each time it can appear that the herniation either grew or shrank in a short time.
A herniation can grow quickly....but, ne  issues like this do need to be reviewed by a true chiari specialist to narrow down the way the MRI is set up so u get consistent slices, views and angels.

"selma"

[joyus12b]

Thank you so much.  I woke up today feeling very dismayed by the entire situation.  Your words of encouragement were very uplifting, I appreciate it more than you know.  Thank you.

[jvilletina2]

Keep fighting until you find some doctors that believe what you're saying and take you seriously. There ARE doctors out there that listen.
Keep the faith. Keep posting. All of us here know you're not crazy and all your symptoms are very very real.

Hang in there! I had decompression surgery 6/09 and despite major complications I am much healthier and happier than before it.

[rod44]

Hi Jocelyn, that sounds like a sensible plan but be aware that there is a lot of confusion among Dr surrounding CM. Some conceder a herniation of 5mm or more to be CM, others say 3mm > 5mm herniation as problematic whilst others regard CM as not a cause for concern and will dismiss it because it is congenital and so it had been with you from birth and cant be causing problems. This is why I and most here will advise that you find an NS who deals with CM as a big part of their practice and who understand the problems it is causing and is up to date on the latest treatment for your symptoms, the HA especially can be difficult to treat .

Ray:)

[joyus12b]

The scans were read by two radiologists, so I think you are right about the interpretation.  

Thanks for your insight concerning my health issues.  As for my appointment with my NS, I would like to take a conservative approach, but my hope is that he can help me manage my headaches and my facial spasms.

Jocelyn

[rod44]

It is not normal  to have a variation of herniation of that amount. Do you know if the MRI scans were red by one Radiologist, it is not unheard of for two radiologists to interpret the scans differently.
Best of luck with your NS and I hope you can get some answers, surgery is a last resort and most will suggest that they monitor it on an ongoing bases.

Ray

[joyus12b]

Thank you for the reply.  

I do believe I had a full work up.  

July 2
MR MRA neck w & w/o contrast:  right vertebral artery is dominant and provides most of blood flow to head
july 2
MR MRA Head w/o contrast:  1.dominant right vertebral artery providing the blood flow to the basilar artery which supplies the left posterior cerebral artery and both cerebral arteries, 2. large posterior communicating arteries are seen right greater than left no aneurysm seen. 3. no aneurysm seen...cause for symptoms is uncertain
july 2
MR brain w&w/o contrast:  1.  Chiari 1 malformation about 13 mm. No kinking or mass effect is seen in the posterior medulla oblongata with the head in this position.
2. no other significant abnormalities seen with and without contrast

July 3
MR MRA head w/o contrast:  No evidence for aneurysm, stenosis, or occlusion. MRV: normal flow is seen within the major dural venous sinuses
july 3
MR Spine thoracic spine w & w/o contrast:  spinal cord signal and morphology vertebral body height...within normal limits, hemangioma seein w/i t2 vertebral body anteriorly, no pathological enhancement
july 3
MR Spine lumbar w & w/o contrast:  minimal posterior disc bulge is seen at L5/S1 level with mild disc desiccation, no significant central canal or neural foraminal stenosis,
note is made of 6x8 mm high T2 structure within the right neural foramen at T12/L1 which does not demonstreate enhancement most compatible with perineural sheath cyst
July 3
MR Spine Cerv w&w/o contrast:  cerebellar tonsillar ectopia is seen below foramen magnum measuring approx. 8mm and compatible with chiari 1 malformation.  Spinal cord signal and morphology are within normal limits. no pathological enhancement
July 3
MR Brain w&w/o contrast:  1.No hydrocephalus, midline shift, mass effect, focal lesion, area of restricted diffusion or pathological enhancement 2. a dilated Virchow-Robin space at the left basal ganglia is again seen 3. cerebellar tonsillar ectopia of approx 9mm is sean at the foramen magnum compatible with chiari 1 malformation.
Impression:  No evidence for acute inracranial process, chiari 1 malformation

Is it normal to have a variation of herniation?  In the findings on July 2 it was about 13mm, then July 3 was 8mm and 9 mm.  

I am not sure how I feel about surgery, but I am looking forward to seeing a specialist and hearing his opinion.  

[rod44]

Hi and welcome to our community!
You will find that most of us here can identify with your story and your confusion.

The most important thing you need to do is find a NS with experience of Chiari Malformation.

Did you have a full spinal MRI? (to rule out other issues like Syringomyelia)
Did you have a CINE MRI? (to determine if any CSF obstruction. I know you were told you had no obstruction but did they determine that from doing a CINE?)

Chiari Malformation is a condition that is not well understood by most doctors, it is often (as in your case) an incidental finding on MRI and is dismissed as not being problematic, this is why you need to find a NS who knows CM. It is also important to know that surgery is not a cure but is intended to improve symptoms & quality of life.

Ray

[joyus12b]

I also forgot to add that I have constant pressure at the base of my skull, my neck clicks when i turn it, I have periodic vision changes, especially blurriness, eye pressure, and extreme pain behind my eyes if I have to focus on something close up

[joyus12b]

Since I was release from the hospital, my symptoms have not gone away, I still have pressure on the right side of my head, my ears, the spasms behind my eyes feel like my brain is being "wrung out like a wet towel," and the tingling in my hands and comes and goes daily.  I also noticed that when I am laying down, my symptoms are barely noticable.  When I get up I feel the pressure in my head almost drain, yet the spasms come back with increased activity.  

I have also done a lot of research online, and I feel that a lot of this can be attributed to my chiari.  I have learned about the vasalva maneuver (sp) and I have always had that pain in my head, just thought it was normal.  

I was also hospitalized again on Aug 12.  I got my referral to see the allergist, and he sent me to do a breathing test in his office.  I had to breath normal, suck in my breath as hard as i could, hold it, then breath out as hard as I could, then suck it back in immediately.  I had to do this about 3 times within a couple minutes.  The pressure that built up in my head was extremely painful, the ringing in my ears was excruciating, and I had to hold on to the nurse because I could barely walk, I then could not control my breathing, my hands and legs were tingling to the point where they fell asleep almost.

I was taken by ambulance to the hospital, where the drs determined I did not have a stroke like they thought, and they finally told me I was being admitted almost 8 hours after being there.  My headache was excruciating, but not like a typical migraine, it came from the back of my head to behind my eyes.  They did a neuro exam on me and noticed that I did not have a gag reflex.  Earlier that week I noticed that I heard a clicking in my throat when swallowing, yet had no idea about the gag reflex.  

The drs thought at first this was related to my chiari, and I felt that I would get the help that I desperately needed.  Yet when the NL saw me the next evening, after I had laid in bed with a headache for almost 36 hours, he said it was not my chiari.  Oh, and another psychiatrists came to see me as well.  

I saw the neurologist that I was referred to this past Tuesday, she pretty much ignored everything I told her, yet referred me to see a chiari specialist.  She attributes the tingling in my hand to carpel tunnel, because I had that when I was pregnant with my son almost 8 years ago for 6 weeks.  I have never had it since.  She put me on nortriptaline for the tingling and wants to see me in 2 months.  My chiari spec.  appt is on August 31.  I truly hope that he will listen to me, and not what the other drs have wrote about me in my records.  

I have pretty much lost all faith in doctors at this point.  I feel that whatever they cannot explain has to be psych related, and I feel like I am fighting a never ending battle to prove them wrong.  

So, that's it in a nut shell.  If you have gotten this far, congratulations, I truly appreciate it.  Any insight into what this can possibly be, chiari related or not, I would be extremely grateful!