Jump to content

Another MRI & MRA Tomorrow---tired of this


Guest Julia59
 Share

Recommended Posts

Guest Julia59

I'll be having another MRI & and MRA tomorrow----because the neurologist that I found to work with Dr. Bolognese in The Chiari Institute wants to have another look.

He spotted two vertebral arteries pushing/resting on the brain stem along with all the other junk going on. So the MRA is to look at the arteries.

Getting scared, my arms and leg functions are getting worse, and getting some skipped heart beats..........................................

Enough is enough. When I first crashed I just wanted validation and a name for my illness. Finally, I was diagnosed with POTS-----but I never expected all of this to follow.

Maybe shoot out a little prayer for me.

Julie :0)

Link to comment
Share on other sites

Good luck with your test Julia--at least this one is pretty noninvasive, although i know you're not a big fan of lying in the scanner. Think happy thoughts...or silly thoughts...or both :P

Nina

Link to comment
Share on other sites

Guest Julia59

Thanks everyone!

The MRI/MRA was not bad at all this time. It seemed to only be for about 20 minutes, maybe a half hour. This was nothing compared to the 90 minutes it took to do my brain/cervical,thoracic and lumbar spine in NY. They look for a cavity filled with fluid called Syringomyelia or (syrinx). When looking for that they have to scan the whole spine. Thankfully for me, there was no syrinx.

Now they are taking a second look at the two vertabral arteries that are resting on my brain stem. The small posterior fossa is most likely the blame for this. This neurologist is saying just this can cause all my problems---including the dysautonomia. Other opinions think the EDS is where it all may have begun----and the rest followed.

Feel like a mess today. Couldn't even tolerate a 20 minute ride up to Michigan tonight to see Ron's sister for her birthday. Lower Michigan has a lot of rural roads---WITH A LOT OF BUMPS----and it tore me up. I can barely take the roads in Toledo anymore--------------------my neck and lower cranium is so touchy now, that even certain shoes bother it when I walk. I have my skechers on today!

I was hunched over the majority of the night.

The MRI/MRA will be read tomorrow----and I should know the results by Thursday or Friday. I'm not sure I want to know.

Julie :0)

Link to comment
Share on other sites

Julia,

Just wanted to let you know that you're in my prayers and i hope you don't find out anymore bad news. Keep us posted when you get your results. Sorry you're not feeling so great these days. Dont' forget that we're here for you! :rolleyes:

Link to comment
Share on other sites

Guest tearose

Hey Julie, you sure have been thru a lot recently! I am relieved they didn't find yet another challenge. I am sorry you still have so much to figure out and deal with. It is like a full time job for us at times! I pray better days are soon to come!

If you must be in a car, can you surround yourself with a couple of big soft pillows and lay down for the trip? I found giant pillows both at Walmart and Kmart and they make super comfort cushions for around home or the car or when you need to sit on the floor...just hoping you can go in comfort if you need to be in the car...

As you know, we are with you in spirit!

best regards, tearose

Link to comment
Share on other sites

Guest Julia59

Thanks everyone for your support!

I should know the results by tomorrow. Mainly, it was to check to two vertebral arteries that were pressing on the brain stem. They already noticed this on another PAST MRI. They wanted to take a closer look with the MRA.

Tearose---I wear my hard ASPEN cervical collar in the car to protect my neck and cranium area. Dr. Bolognese told me I have to do this from now on as a fender bender could be-----well let's just not go there...........

The pillows are a good idea too! I will use those for longer trips. Thanks for the tips and also for your caring thoughts.

Julie :0)

Link to comment
Share on other sites

Guest Julia59

Today, I called MCO for the results of my MRI/MRA.

NORMAL!!!!!!!!!!!!!!!!!!!!!!!

So now I have two neurosurgeons who say I have a lot of problems----and one radiologist who said my brain MRI/MRA if fine. The neurologist has not read it yet.

So if in fact I have basilar impression/retroflex odontoid with pannus formation----(meaning a deformed mis-shapen C1 tilted putting pressure on lower brain/brain stem), chiari with minimal hernation, congenital cervical spine stenosis, cervical/cranial instability, and several herniated disks throughout my whole spine----then how in the heck did this MRI show up normal. Four different hospital radiology departments have said all this on MRI reports and C-scan reports along with the two neurologists.

And now my brain/and upper cervical spine is "normal". Oh my gosh, I'm healed!

NOT------pain and symptoms worse then ever---and my legs are getting weaker by the day. It's hurts to move my jaw up and down!

I really can't go on---as I am more confused more then ever. I just want straight answers and I want this pain to stop. I can not tolerate narcotic pain meds---so i'm limited on pain treatment. With the instability I can not get pain blocks as I have to have some degree of pain to know where I am at with the progression of the instability. I took my prescription for Topamax to the pharmacy tonight.

I wish the Toledo Docs had some degree of understanding of chiari---and chiari related disorders. REally---I will be glad if the MRA is normal---as I don't need artery problems on top of all this ( so prayers would be answerd on this one- :D )----but the MRI was read as normal too. But this is typical of local Docs as they are not as familiar about these disorders as the chiari experts---which unfortunately are very few. Don't get me wrong---as you all know I said pray it's normal. But it is confusing to have so many other tests show so much wrong and then another to show "normal". Let's put it this way---I wish everyone was wrong----and all of this would go away!

Thanks for hanging in there with me.

Julie :0)

Link to comment
Share on other sites

Julie

Sorry to hear your latest MRI interpretation is 'normal'.

How frustrating and scarey considering how miserable you have been.

I hope you get some answers soon. Tie another knot in the rope and hang on until you get another pair of eyes to review this.

Link to comment
Share on other sites

Guest Julia59

I will be sending a copy to NY so Dr. Bolognese can have a look at it. Really, the radiologist doesn't really know what he/she is looking at in the sense of recognising chiari/and the chiari related problems.

The neurologist has not seen the MRI/MRA yet---but i'm guessing he won't know too much eaither.

The good news it that there isn't something crazy like bleeding or something---i'm sure the radiologist knows what that looks like. And i'm sure he would know if there is a problem with the arteries. That is NOT a problem I want added to the mix. The headaches I have been having were really scaring me----and it looks like i'm out of the woods as far as any immediate danger. I would think the radiologist would know that...........................

It's not really bad news the MRI was read as "normal", because that just means there is nothing more serious going on other then what has already been diagnosed. At least that is the way i'm going to look at it for now. But it does leve me a little more confused on how a radiologist could not see somthing that has already been diagnosed by two other Docs.

I don't know what it is----but this winter I feel like a train wreck. It's only 1:30 in the afternoon---and i'm already feeling whipped and slumping over. Now I have just sat up straight---and i'm going to force it more often, as slumping makes matters worse.

You guys are great---thank you so much for the support. I will keep you posted on my little mess.

A little good news-----------> My husband and I decided to get a new wedding band as mine was the same as my ex-sister in law. WE went to a jeweler and had one made. We took two of the small diamonds of my wedding band, and added the bigger diamond from my pre-engagement ring to a wider traditional wedding band. We weren't sure how it would look with a a marque cut ring (my actual engagement ring)---but it looks absolutely beautiful.WE are both thrilled with the outcome.

Julie :0)

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...