MRI results---help.......

[Guest Julia59]

My MRI report was ready today when I called. They said they can't mail it, so I picked it up---it's only about 10 minuts away, so my husband drove me there before we went to pick up some flowers to plant.

I'll just list the things that don't sound normal from my MRI yesterday.

parent hypoplastic left vertebral artery with associated flow void asymmetry.

There is an area of high T2 signal intensity involving the right mastoid air cells consistent with a focus of mastoiditis

A broad-based disk posterior disk bulge/herniation at c1-c2

c2-c3 another disk bulge/herniation--but appears to be smaller

c3-c4 broad-based posterior disk osteophytic ridge with mild ventral thecal sac deformity that abuts the ventral cord without evidence of cord undulation. There is mild bilateral neuroforminal encroachment right greater then left and a mild degree of relative central spinal canal stenosis (however both neurosurgeons said canal stenosis in the entire cervical spine).

C4-C5 might have disk protrusion

c5-6 and c6-7 show the surgical changes

C7-T1 Eccentric to the left midline disk protrusion-mild thecal sac deformity and mild left neuroforminal encroachment.

I read some information about mastoiditis, but I don't recall middle ear infections. But I have constant ear pain which is almost always associated with chiari-or related conditions. As far as the MRI recognizing--it only mentioned that the cerebellar tonsils in midbrain are unremarkable. Dr. heffez and Dr. Bolognese said I have chiari, but minimal herniation---and a small posterior fossa with the retroflex odontoid--aka(malformed C1 with pannus growth), the congenital cervical spine stenosis, and many MRI's showing all the herniated disks---some saying herniated, some say bulging....

The MRI has been sent to N Y to Dr. Bolognese. His report is usually more involved then the radiology report. Both surgeons found more abnormalities then the radiology reports. I never understand that---why do they seem to find more abnormalities? Aren't the radiologists trained to read these correctly?

All I know is I feel like you know what.

I feel very weak---flu-like almost all the time, and the pain in the neck/lower skull and behind my ears makes it difficult for me to sleep on my side as the pain spreads into my shoulders and clavical.

Sorry, really having a rough time--but a girls gotta vent------

Thanks for reading

Julie :0)

[smiley0480]

Hi Julie,

First I have to be honest I have no idea of what most of that means, but I just wanted you to know that I am thinking of you, and am sending you lots of hugs.

Take care of yourself

Smiley

[Ernie]

Hi Julia,

I don't understand the medical terminalogy but it sure sounds like you have something. Can your PCP interpret the result for you?

I would also keep that for the SSDI.

Ernie

[Guest Julia59]

Once I get the repot from Dr. Bolognese---I can put it in easier terms to understand.

I really don't know if this is a serious as it feels. I'm quite confused. I feel terrible, but I don't know if it's POTS or the spinal/chiari (if in fact I have chiari) issues. No doubt I have spinal issues.

Julie :0)

[corina]

Hi Julia,

I wasn't able to read all of this (and certainly didn't understand ) but I wanted you to know that I'm thinking about you and hope things will work out okay. I hope you're feeling some better today

Corina

oh, and how are your flowers???

[Guest Julia59]

Thank you very much for the support.

Basically, I was hoping someone could help me understand this report more--maybe someone with medicall knowledge------------

I probably souldn't have posted yet.

Having a lot of pain in the cervica;/cranial junction. It woke me up out of my sleep this morning at about 4:00 am--and I didn't all asleep until about 12:45am.

I took tylenol which helps, but not fully.

Unfortunately all this is gettng to be too much for me. I amm still trying to figure out the full force of all this. My 6th sense is telling me something ain't right.

the pain in the lower cranial area is the worst right now, but that is only the half of it, as the pain spreads down my back and soulders. I also have pain in my knees, hips--pretty much all over. I don't tolerate pain meds well. with this latest set back, i'm having more irregular heart rates, almost no bowel motility, and the fatique and weakness is getting worse.

I am very depressed, and I feel there is a lack of understanding other then my husband and son/his girlfriend. I don't want to go to this neurosurgeon next Tuesday---I just don't want to go, and probably would cancel if my husband wasn't going to drag me there himself.

I'm scared of the surgical options because of the problems being at the cervical/cranial junction.

I don't really want to post any more about this as I am disgusted.

I'm probably just done with this for a while---I need to close in for a bit to get my faculities.

Thank's again Ernie, smiley, and corina--your support means a lot.

Julie-----------------:0(

[geneva]

Julia, just wanted to let you know I am thinking about you and hoping that you get some answers soon to your pain. The waiting for the interpretation must be hard but I hope that the doctors will be able to figure out something to do for you that doesn't involve surgery. I believe strongly that when you feel something isn't right in your body, it usually isn't. Hang in there and do whatever it takes to take care of yourself.

[StaceyYount]

Julie,

Still in my hole but had to comment on this...

This is very weird but my chinese doctor has been speculating that myabe i have mastoiditis too. I too get very sore back there and if you massage that area I get the worst (this is gross sorry) tasting drainage. I have had a lot of trouble with sinus and now this. It is very weird that you are mentioning this now. But It can happen and it can linger for years. A lot of the pain can be the swelling in that area. Mastoid sinus area. And it can get infected. My primary is looking into this too. If you find out anything let me know and I will let you know. Weird taht this has come up for both of us. The ohter parts I don't know and am sorry you are feeling htis but if you do have a chronic infection in your mastoids that could cause a lot of you flu symptoms or maybe hat they are worse now.

HMMMMM...

Vent away and know we are here to supprt you.

Stacey

[calypso]

Julie,

So sorry to hear there are so many abnormalities. Try to remember that the MRI picks up so much, that even some of these things may have been there all your life and not causing your POTS problems. I sure hope you start to go on the upswing soon.

I had a question for you and anyone else here who has had this abnormality in their MRI: low-lying cerebellar tonsils and "moderately full" pituitary gland. My doctor says that sometimes these conditions contribute to odd orthostatic intolerance problems, but he thought in my case that they were not the cause.

Any ideas?

Amy

[Guest Julia59]

Amy, a lot of my friends on the WACMA (world arnold chiari malformation association) web site have OI or are diagnosed with POTS. Also many have EDS----and a lot of us have eaither been in an EDS study at NIH or will be. I will be, I just don't know when. The Doc running it contacted me, and told me that I will be called within the next year, and that was several months ago.

There is speculation on weather or not I have actual chiari, or it's just the small posterior fossa with crowding in that area---thus some of the abnormalities in my upper cervical spine.

Stacey, the mastoiditis is not a good thing to have from what I have read. It can be very serious. I'm thinking it's more related to the C1 and cranial instability issues. I have a lot of pain in that area along with a lot of bone clicking/crunching sounds, and a constant low base humming on both sides of my head.

Thanks again for your support---it means a lot---times have been rough, and it's nice to know good people like you.

Julie :0)

[Guest Julia59]

Stacey,

Here is a link on mastoiditis. It can be linked to cervical/cranial issues too.

http://www.emedicine.com/emerg/topic306.htm

Julie :0)

[StaceyYount]

Thank you Julie,

I am priniting the article to take to my primary. We will see but if I find anyhting out I will be sure to pass it along.I get a lot of pain and pressure in the back of my neck and at the base of my skull so maybe this is that. I don't know it is all such a muddle to get thorugh. Please let me know what the doctor says when you get your results, I want to know for you!

Hope today is ok and maybe we will have to start a new club

the Mastoiditis girls?!?!?! Sorry not feeling good today but I tried

Stacey :-)

[DancingLight]

julie,

i am sorry that you are having such a hard time. i am late chipping in on this thread also...okay, on most threads these days! i'm out here checking in on you though!

i am glad that your husband is going to drag you to the neurologist on tuesday! i know you don't want to go...but just maybe, it will lead you somewhere good.

i feel like corina...i read it but don't understand! sorry!

there is one thing that is not related to this topic, but i have been meaning to reposnd to you about forever...you know the clonodine thread. have you read the johns hopkins treatment thingie that people always post for newbies? there is a great descripttion of what clonodine helps with there...b/c i think some of the info. on it got muddled in that thread. the three things that it helped me with were 1. sleep, 2. motility, 3. anxiety/agitation (which is a huge symptom complaint for me as it is for you).

please keep us posted...i hope that you and stacey may be able to find out stuff and share together and maybe both of you will find your way to answers. i want that so much for both of you...

em

[Guest Julia59]

Thank's Emily,

I'm wondering how clonodine helps with motility---boy wouln't that be nice.

That is one symptoms I am so sick of. Mine is mainly bowel motility. I am lucky as I rarely get nauseous. Only recenly, I have a little of that at night.

Ugggg-----------one day I hope this gets better.

My PCPs office called this morning---I don't know why---unless they want to discuss the results of my MRI---or the mastoiditis I could have. that is something that has to be treating if in fact I have it.

Right now I am on propranolol to slow my heart down, wellbutrin to help with the hyper adrengic issues and fatigue, synthroid for hashemotos hypo thyroid, and cerefolin for memory problems. I take tylenol for pain, and may for back on the topamax---very small dose of .15mg-----child dose. i'll have to bring up the clonodine to Dr. Grubb and see what he thinks.

My main complaint now is the weakness and fatigue, and the pain in my neck/lowercranium, ears-----spreading down to my chest, arms, clavical, upper back and mid back.

I just can't seem to get a grip this time around----I feel pretty deep in the hole, but still able to function some.

I just hope I can hang in there for my B-day tomorrow, and my Brother and sister in law's 25th wedding anniversary party (also tomorrow)---I better, because i'm one of the people giving the party----

My husband is off tomorrow----thank God----or i'd be screwed. He will do most of the running--and i'll do the easy stuff. I feel so bad---because he works so darn hard, and then has to come home and help me. I try to do most of the things around here myself, but this hole has been kind of deep lately. I hope to snap out of it soon. Uggg again-------->

Julie :0)

[DancingLight]

jules,

i am not sure if they know why exactly clonodine helps...but it helps some patients with delayed gastric emptying. i don't think i have that, but it still helped me a lot...but, then again, so did getting my gallbladder out!!!!!!!!!!!!!!

goodnight!

emily

[StaceyYount]

Happy Birthday to you

Happy Birthday to you

Happy Birthday dear Julie

Happy Birthday to you!!!!!!!

Stacey :-)

[Guest Julia59]

Thank you Stacy, that is so sweet! 46 today----uggggg

Julie :0)

[Guest Julia59]

Sorry folks,

I did get the day wrong for my neurosurgeon visit at the University of Michigan in Ann Arbor Mi.. It's tomorrow---Wednesday the 18th at 12:30 pm.

My PCP thinks the buldging disks should not be a major problems (which is good), but he said wait to see what Both Dr. Bolognese and the other surgeon has to say---as the radiology report can say one thing---and they could have a whole different view.

I just don't want to have another fusion surgery---especially a cranial/cervical fusion.

I posted last night, but deleted it as I thought it was a little lengthy----and had a little too much rambling. I'm trying to be positive, and it's not working out.

Thanks,

Julie :0)