And the winner is...

[Merrill]

Hi, guys. Welcome to the weekend. Mine didn't have such a terrific start, I'm sorry to report. My doctor called me tonight with cervical spine X-ray and blood test results. She caught me at the grocery store, examining eggs... Blood tests all normal (potassium, magnesium etc), but cervical spine definitely NOT. She read the report...Here's what I remember hearing: reverse curvature of the spine. And several disks are either wearing out or they're bulging. In either event, the bones of the spine are compressed and (presumably) pinching the nerves. I definitely need the MRI, she said, and treatment will depend on the results. Physical therapy will definitely be part of my picture. So might injections. She didn't say "surgery," yet part of me wondered if she was thinking it. I wished I had been sitting down with a pen and paper in hand when she called; I had trouble taking in what she was telling me, and to be honest, by that point I felt rather weak and a little faint. (I had been feeling really good today, too...and I'm fine again, other than this little neck problem I'm having. )

Isn't it funny how you can know something's wrong and be bound and determined to find out what it is ... and when you do find out you feel like saying "No, that's not possible. That's not me; I'm not going through that kind of treatment for this thing I don't have. This is all in my head! Forget it, shut up, leave me alone."

I wish I had asked about C5-C6... whether those are the disks involved. Seems probable, doesn't it? Given everyone else's problems?

My MRI's scheduled for a week from tomorrow, the 18th. I'll get results the 22nd, I think ... same day we're going to the San Fran area for the weekend to see my in-laws.

Questions:

1) Should I be concerned about having the MRI with contrast? Does the dye they use ever make anyone freak out, go insane, die? (You can see I'm thinking very clearly and logically about everything right now.)

2) Should I ask for Ativan or Xanax? My doc is going to write a (low dose) scrip for the one I want to help me get through the MRI... and I'll try it out early next week so that I'll know how I react to it and whether to take half or whole. (This is a very important part of my process--I'm very med sensitive and know that sometimes taking "relaxing" drugs make me scared and panicky 'cause I feel out of control. If this happens, I'll do the MRI drug free.) But I know some of you have experience w/these, and I wonder which is preferred for occasional use.

While the doctor didn't say that this situation caused my middle-of-the-night episode last week, I'd have to imagine that it did. With this preliminary result, I'm going to guess that Nina will win the cookie! She was first to post, after all, though others said spine too. Congrats to you all! (This is perfect--I'll make a whole batch and we'll all pig out together in cervical spine ****...)

Sorry to have gone on so long. This is boring. But you guys are so sweet and forgiving ...

Have a good weekend everyone; stay strong!

Merrill

PS a friend asked about my bracelet at lunch (IT'S WORKING!) She knows about my pots -- and I told her I was wearing it in solidarity with my sisters...

[MightyMouse]

That'll be a gluten free cookie, please

Don't worry about the MRI contrast--it's not got any iodine in it like they use for x-rays and CAT scans. It's one of the things I'm NOT allergic to.

Sorry to hear that you're joining the ranks of the busted spine people. I, too, have a retrograde curve to my neck. More concerning are the naughty discs that can push on those nerves and make them irritated. I'd suggest asking your doc about a hard brace and seeing if sleeping w/ it helps you.

My first brace was Aspen brand, but the one I have now, called "Miami J" is much more comfortable, although it doesn't look any prettier. The Aspen collar was fine, but the padding just gave out too quickly and then the hard velcro and plastic would dig into my skin.

If you end up going to PT, be careful about traction. It can either make you feel way better or way worse. There doesn't seem to be an in-between with that one. The only way we found out for me was to try it.

Also, the shots aren't that bad. I was always a little sore the day I got it done and the day after, but it did give me relief for a few weeks each time.

You can handle this...I know you can. If you need to vent, feel free to post or email me privately if you like Nina

[blackwolf]

I also have an iodine allergy, but did just fine with the MRI contrast. Most places now have options for MRIs and CATscans, I have had 2 nuclear studies done on my lungs and heart, no trouble there either, just felt flushed. As with any contrast, I have a very strong "vascular reaction" and feel a little odd after getting the injection but it passes quickly. As to getting something before the MRI, my favorite is valium, and lots of it, I am TERRIBLY clostrophobic(sp?) and nearly hyperventalated myself to unconcesiousness in about 3 minutes the first time. One funny little thing ask for a towel over your eyes, if you are sensative to lights it will help. We also have the option of aromatherapy in the MRI room, I prefer vanilla as I find it very relaxing. Call and ask if it is something you can do. Just bring a bottle of vanilla/ imatation vanilla with or put some on a cotton ball and put it in a baggie and take it with you. I put mine under the first layer of the towel on my face (I jsut cover my eyes and nose) and breath deeply when they are not taking pictures.

Hope it helps, I was also just told I might have trouble in C4-5-6 area and also T something ( I can't remember where exactly).

Blackwolf

[briarrose]

Merrill

That's a lot to hear while examining eggs

I think I would call the doctor's office back and expalin that you were at the store and couldn't take notes. Ask them if you can have a copy of the report. If you still have questions, maybe you should make an appt with your doc and discuss them or wait until she has more info after the MRI.

As for MRI, the contrast they use is much different than what is used for CT. I can't take CT dye but can have MRI contrast. As for Ativan that depends on how well you do in close spaces. I've had 2 MRI's in my life and as long as I close my eyes and think about a nice tropical island, sitting under a waterfall sipping on Mai Tai's that are being served to me by handsome men, things are good

Let us know

[Guest GayleP]

Just wanted to add that yes, the MRI contrast is different than the Cat scan. I do fine with it and don't with the Cat scan contrast.

I also recommend taking an Ativan or valium before the MRI if you never had one before. I have had about 30 MRI's and I need a valium everytime.

I have disk herniation at C5 and C6. in fact the herniation is touching my chord but they are still not recommending surgery. Thye have tld me to get traction if I get symptomatic again. I think they do surgery as last resort.

Of course I don't trust my neurologist so who knows.

Keep us posted.

GayleP

[Guest GayleP]

Nina,

Can a hard brace worn at night help prevent surgery for those of us with bad herniation? No one has even mentioned wearing a hard brace to me. I know my neck is always off if I sleep funny.

GayleP

[MightyMouse]

Gayle, yes, surgery is absolutely the last resort. The typical series of events that leads to surgery are: Physical therapy and/or traction fail to help (or make things worse), pain management such as epidurals and daily medications fails to give long term relief, and life changes such as working with a PT or occupational therapist to improve body mechanics and stabilization doesn't give long term relief. Also, if the problem is limiting your mobility, daily living, work potential, etc., then surgery is also a consideration.

In my case, the surgery was because my cord was compressed to less than half the normal diameter--and I was having major symptoms, like choking when swallowing, loss of control of my arms and hands, frequent falls (not due to dizziness) and problems walking (my legs would collapse under me), and a great deal of pain.

[corina]

Hi Merril,

I only have a minute so I just wanted you to know I'm very sorry to hear the bad news. Did you drop they eggs btw?

I hope you call back on your doc and ask if she can send you the report. I keep on forgetting so many things that for me it's easier to have things on paper. Wish you all the best and take care!!!

Corina

[Guest GayleP]

Nina,

Thanks for answering so quick. I'm symptomatic off and on but would a brace be helpful instead of physical therapy and traction? I'm afraid I make things worse just by the way I sleep.

Or is a brace only for people who have had surgery.

[MightyMouse]

My former neurosurgeon wouldn't consider surgery unless you'd tried PT and also tried sleeping in a brace. Which one to do first is really a question for your doctor. For me, PT probably is a okay without traction (my joints are too mobile for traction to be useful). And, the brace is certainly non-invasive and very low risk. Depends completely on your circumstances.

Nina

[Guest tearose]

I don't think my next trip to the market will be the same...as soon as I get to the eggs this will all come back to me!

Hey Merrill, I am so sorry the news wasn't good. Just one more thing to deal with. What a bummer. You know and I know, and all of us here know, you'll deal with it with all the grace and savvy you need, but still, it's one more thing to deal with.

If you want a calming medication before the MRI then ask for one! It won't change the results of it so go for it if you need it! I know the contrast makes me feel a flush of warmth, but I know to expect it and then it goes away. I have had no adverse reactions to any dye. Do you have reason to be concerned?

I hope your situation will resolve with non-invasive techniques.

I have minimal bulging on C5 & C6 so I'm in the club too! I seem to manage the rough times with behavior mod. and some pain medication. I don't have as many frequent symptoms since I don't do real active stuff like hike, bike or hang glide anymore. Heck, I hardly walk anymore!

I'm glad you decided we all get cookies. After all, you really still haven't solved that middle-of-the-night episode!!!

Keep us posted, take care, tearose

[Guest GayleP]

Nina,

Thanks again. I think I'm going to ask my neuro about the brace. It sounds like it won't hurt anything.

GayleP

[geneva]

Merrill, that was a lot to take in at the grocery store but I guess the only good thing is that you probably know what caused your middle of the night scare.

I have trouble with iodine dye but have never had trouble with the dye used for MRI. I have also had my share of MRIs and the ones where I have taken something to relax me I have preferred. I can do them without but it is really hard for me to lie still and depending on what areas they will do, some of these scans can last a long time. My neck, spine etc was 1.5 hours with all the stop/start action etc. When I accepted meds it was always valium and I didn't have a problem with that. Oh, btw you could run into someone in the med field who might try to make you feel a wimp for wanting drugs but just ignore them!!

I like the idea of the aromatheraphy!

[yogini]

Merrill,

I don't know much about the spinal stuff, but I just wanted to say that I'm sorry you are dealing with this. I hope that the physical therapy will help you and I am glad you can at least draw upon the knowledge and support of all the others who have these issues.

-Rita

[michiganjan]

Merrill,

I have had the contrast and no problems with it and I am very sensitive to just about everything.

About having an MRI. The first one I had, they asked me if I was claustrophobic and I laughed and said no--I could be perfectly comfortable shut up in a little closet. I made it through part of the test and then had them pull me out. I did go back in and finish but swore I would never do it again. I had an extreme panic reaction to all that noise. It is really loud in there and you must lie perfectly still. After I let them push me back in to finish, my husband held my hand. He had to reach way up the machine and his back must have hurt the next day.

The second MRI--as soon as they started to push me in, my body just scrambled down the "bed" in order to stay out of there. I just couldn't help it. I had to reschedule.

Here's how I coped and it finally made it through the second one. I posted on the forum, and asked people to tell me what I should think about to get through it. I got several messages in which people shared their favorite things to think about. One thought about getting a fabulous log home and how they would decorate it. Another suggested going over and over the words to a specific song. People shared their favorte fantasies and sent words of encouragement.

I printed out all the messages and read and reread them until I had everyone's well wishes and fantasies memorized. I took the printed sheets to the hospital and right into the MRI machine with me. Then when I began to experience signs of panic I visualized that log house and decorated it, and went to all the imaginary places and sang all the songs and held on to the papers. It worked!

The technicians had never had anyone ask to take paper in with them before but I told them I had to have my forum messages and paper is okay. I wore earplugs. They gave me some, but they were foam and I am allergic to the foam, but I had my own wax ones and those were okay to use. Xanax might help also. If it works for you to relax you, then try it.

Here's my fantasy--you can take it with you. Imagine decorating your house for Christmas with a silver theme. Imagine a 12 ft tree and it has huge silver bows all over it and each bow has long silver streamers that flow down the tree like silver streams. The bows are mde of three kinds of silver ribbon. The inside part of the bows is from white ribbon with silver edging and the outter bow is of wide woven mettalic threads. The streamers are like liquid silver. The tree has red and silver and white ornaments. Under the tree is a Lionel Christmas train that goes round and round a white tree skirt. There is an entire Christmas village under the tree on that snowy skirt inside the train track. Next to the tree is a fireplace dripping in silver with red cardinals perched here and there. Then just go on and decorate the rest of the place. Every time that machine rumbles, add some lights here or there. How about three tall glass vases of different shapes holding willow branches and the branches hung with a hundred tiny silver stars and white doves perched in the branches.

Good luck!

Michigan Jan

[MightyMouse]

MRI's are definitely noisey. There are times when it sounds like they are jack hammering just above your head. However, I've never had a problem with feeling claustrophobic--I just meditate through it. I've nearly fallen asleep a few times. I know that other have major issues with the noise and close quarters though. Hope yours are easy to deal with Nina

[Guest tearose]

M, have you ever had an MRI before? Is this new for you? Or just a new part of the body being MRI'd? tearose

[DancingLight]

m,

i have only had two mri's...but have not had any problem either time. i meditated the second time and that really worked for me.

for some reason, i'd rather have an mri than most other tests...and i know, i've been teased about being a wimp...so i'm not minimizing your fears! but, those u/s tests really bother me more! as have other tests...but that's another story!

if you feel you need the ativan or xanax...go for it! it's not worth the stress. take the drugs if it will ease your mind a bit...k?

as for the contrast...i was scared about that part. but didn't have any problems. the iodine for CT scans feels weird, but i was okay with that too...

so that's just my experience. we are all so different in what tests 'push our buttons' and what tests don't...you know?

like, my dad...oh man, just getting a blood test for him...he almost faints! good thing he hasn't needed many tests!

hope it goes okay and that it gives some more answers.

emily

[Jersey Girl]

Like others on this forum I have only reacted to iodine in the past. I have Xanax as needed and for me, 1/2 of a 0.25 mg tab is plenty. The loud noises (jack hammering) during the testing are the only negatives I have experienced. ( I am noise sensitive) It's a good thing the tests are done lying down or we'd all have a problem! I have been asked before the tests if I want ear plugs or music and I will ask for both if possible. Good luck--the tests aren't so bad--it's the findings that may be worrisome, but we can handle that too. Martha

[Merrill]

Hi, everyone! Thank you SOOOOOOO much for all your wonderful suggestions and advice and support! I really appreciate it! Let me see if I can remember to answer the few questions you guys asked ... and then ask you one at the end.

Yes, this is my first MRI ... my brother has warned me too that it would be really noisy, but that I should pretend I was listening to some avant garde music and groove on it. He also recommended valium, and said whatever sedative I take should help get me in the spirit of things.

I guess I feel a little better, especially emotionally, now that I've had the weekend to let the information sink in a bit ... Friday night and part of yesterday, I felt almost afraid to move ... as if the knowledge had suddenly made my condition worse, and that I could easily do something (like turn my head) to permanently injure myself. That was silly ... I'm OK; today I feel like I did earlier in the day Friday before I knew what was going on. I hurt, and my hands and arms go numb and tingly off and on, but such is life these days. (I swear, at the moment I'm more afraid of traction/shots/therapy/exercises or whatever than I am of leaving things the way they are. But I'm a goofball; I'll get over this. Yes?)

I loved all your wonderful suggestions for things to think about and images to meditate on (and scents to bring along if they let me have something ... I'll experiment with that this week at home too). One favorite image that helped me prepare for/go through/recover from my surgery a year and a half ago is from a Belleruth Naperstak surgery/meditation CD -- it's of being surrounded by a "magical band of allies" who would see to it that the surgeons etc went about their work with skill and expertise and as professionals; these allies, which included anyone and everyone who ever loved me, would protect me along the way...

Briarrose, I'm afraid if I think of sexy men with cocktails, they'll compain of too much movement in the tube... even WITH the sedative! I'd better stick to log houses or X-mas trees or oceanfront property.

Much relieved to hear that no one had a problem with contrast, for surely if ever I'd find a group to be affected, it would be this one. I've never had anything like this--I just found the whole idea of it rather creepy...like much of modern medicine! But I'll get through it ok.

I just realized I'm missing Desperate Housewives (thank G-d for Tivo), so I'll sign off for now. But here's my Very Important Question: Ativan or Xanax? (I suppose I could ask for valium if you think I should --that's the one most often mentioned in this particular string about tricks for getting through MRIs ... but Ativan and Xanax are the two meds my doctor offered!)

I know they're both benzos, and I know they're both short lived and fast acting. But which is the better choice? I've been wanting something for anxiety anyway, and I think she was going to give me 30 of em. (I asked for a few of both, but she said she couldn't do that. Not at the same time, anyway.) And Gena, are you doing Xanax AND Klonipin now? How's all that going?

Anyway, please post your vote if you feel like it and say why you like the one you do! And thank you again for all your kind words and experience and advice!!!

All the best,

merrill

[MomtoGiuliana]

Merrill

Wow, you have much to take in and think about. I am very impressed by your dispassionate/methodical approach to what you have learned. It certainly helps to know others on this forum with similar conditions who are also coping well.

Regarding xanax/ativan--I have no idea. I have used xanax and found it helpful for short-term relief from terrible anxiety/panic that I used to get. I have no experience with other sedatives. Hopefully others can answer your question!

Regarding the MRI--I have had several, with and without contrast. I found it to be not as bad as I expected. In my experience, the first few minutes are the worst/most uncomfortable, as far as feeling closed in. Once I relaxed myself through that, I was fine for the remainder (with no sedative). Having something to listen to certainly helps. It is noisy, and even with something pleasant to listen to, you will still hear the knocking and banging and vibrating. I worked on focusing on the music (I brought my own after the first time!) and on breath, now and then. Most likely you would do fine with no sedative (unless you have some reason to think it will be difficult for you), but it won't hurt to use one.

Well, I don't think I told you anything new--but I just wanted to add words of support to you.

Katherine

[Merrill]

Katherine, thanks! Did they let you bring a walkman in--for an MRI of the head or neck/cervical spine? (or were they x-raying something else?

It would be fantastic if I could bring my cd/walkman or an mp3 player w/headphones. Did anyone else do that during a cervical spine mri?

thanks,

m

[Gena]

Hey Merrill,

I have never had a problem with MRIs until I came down with POTS (I used to be able to actually doze off during an MRI). Since POTS, I've had two MRIs in the last few months and the loud thumping really makes me have a lot of anxiety now and my heart beats quite fast. At first I had to make them stop only 1 minute into the process. (THey had put me on a new machine was an even louder thumping than their older model, but b/c it made my heart do weird things, I went back to the older model, more open MRI machine and it was much better.

I am ashamed to say it, but I had my mom go with me the first time and my husband the second time. Each time, they sat next to the MRI machine and I stuck my hand out of the little opening. They stroked my hand or massaged it and sang songs or just talked to me. I really couldn't hear much of what they were saying, but it made me more relaxed knowing they were there.

I took Buspar before going, b/c at the time I didn't have any Xanax yet. The Buspar worked mildly, but I would highly recommend the Xanax or even Klonopin for the MRI if you have a lot of anxiety. (Klonopin has really helped my night time anxiety tremendously) Once I got used to the loudness, then it's just having to stay in one position for so long that drove me crazy. The second MRI wasn't so bad, I had more patience I guess.

Everyone here had great suggestions. I wish I had thought of some of those things before I had mine done. But just remember MRIs are completely harmless and you can press the litte buzzer that they give you if you feel you want to stop or come out of the tube at any time. STay strong and best wishes.

[MomtoGiuliana]

Merrill

I just took the CD with me and they popped it in their player and gave me the headphones. You can't have anything made of metal in the machine, btw. It was an MRI of my brain. I had two after Giuliana was born to rule out MS. I had one several years prior to that of my pituitary gland to rule out problems there -- this was when I first was diagnosed with Hashimoto's.

BTW, the machines I was put in were pretty closed, but there was some kind of mirror hanging above so that you could look up and see out, if you wanted to. I found it better just to close my eyes. Also, like Gena says, there is a little buzzer you can push at any time if you are getting uncomfortable. You do have to keep still during the imaging--but the technicians are generally very good and will tell you--"ok, you now need to keep still for the next 45 seconds"-- which helps a lot!

Katherine

[danish]

Hi Merrill,

I'm really sorry about all the back/spine stuff but glad you at least know what's going on. I couldn't imagine having to deal with something else besides all this dysautonomia stuff.

I've 4 and a half MRI's...the half was b/c for my seconf MRI I went already feeling very dizzy and nauseous and got sick while in there. It was not fun and I learned after that if you're already feeling bad it's worth it to postpone it.

Other than that one bad incident I've always been fine in MRI's. At CHOP they let you watch a dvd while having it, and that's what I've done these past two times. You put on what look like robot/night vision goggles and bam, you have a movie screen in front of you. The noise sometimes blurred the sound a little but for the most part the movie was very distracting. I don't know if they let you watch movies where you're having it...but it wouldn't hurt to bring a dvd along just in case.

(Also, since it's a children's hospital they have volunteers dressed like clowns who stand with the technician. For my first MRI, when I was only 11, I was personally told jokes by the nice clown! )

Good luck!

Sarina