To all who responded to my Cleveland Clinic Post

[Guest Julia59]

I wanted to send a big THANKS to all who responded to my Cleveland Clinic post.

I'm sort of hitting a brick wall right now. I'm typing this with my wrap around ice pack on my neck----OUCH----I over did it today helping my parents out. My dad has a big kidney stone, and MOM has diabetic neuropathy---she can't move much.

I'm not much better---but I have the option to rest often.

So I was trying to take some of the heat off Dad today.

Anyway, I told you Dr. Benzel at the Cleveland Clinic wanted to run more tests.

Well last night I decided i'm not going to have the bone scan. He wanted to see if the bones in my neck were fusing properly. Well this has already been checked with MRI's & X-rays..............so I thought why have radio active dye injected into my vein-----screw it, i'm not having it done.

I couldn't go anyway today---I had to pick up my Dad at the hospital, and take him home. I cancelled early in the morning---before 7:00am.

I will get the MRI---but without dye---because I don't know how I react to it, and I am in no position to find out. This MRI is of my Thoracic spine---Dr. Benzel mentioned something about EDS affecting that part of my spine----well sorry, it's already affected my cervical spine.

Dr. Heffez put a titanium plate in after the fusions in 2002---otherwise the fusions probably would not have worked. The trouble is the fusions were on C5, 6, and 7---the levels above and below the fusions are getting bad, herniations---and instability.

According to Dr. Benzel though----he doesn't believe instability is a problem.

WEll---i'm sorry, I have to agree with Dr. Heffez and Dr. Bolognese from the chiari Institute----they have both been dealing with these specific issues for many years. Dr. Heffez's credentials are exemplary---and he is always puzzled on how some of these docs can miss the obvious. To him, my cervical stenosis is obvious----and apparently the radiologist has the same viewpoint. The CT scan I had in 2002 showed the most----I did have dye injected, and I already know how I react to that---so I let them inject the dye.

I have too many tests/and reports showing all these abnormalities. It is apparent that the The Cleveland Clinic is very conservitive---which isn't all bad, but I feel Dr. Benzel has boxed me in to the chronic fatigue/fibromyalgia box----he never mentioned my POTS diagnosis once. He did confirm the EDS diagnosis.

Hopefully Dr. Benzel won't list me as NON-COMPLIANT because I won't take the bone scan test. It's an expensive test.....

I also didn't like what the reports said-----The resident working with Dr. Benzel was quite dismissive of the whole thing. I loved the way he said I was "well nourished"----another way of saying overweight. Some people that know me don't consider me over weight---but I am about 20 pounds too heavy. this is weight gain from the drugs that treat my POTS. For being "well nourished" somehow the severe deficiency of vitamin D was missed by him---and The Cleveland Clinic ran the report----<7---and it should be something between 25---55..............................HMMMM---I'm now on a very large dose of vitamin D----Apparently "well nourished" must exclude all dairly porducts, and exposure to sunshine.............

So now I diet. ---Before, I didn't have to worry about it---I was always thin. He basically made me out to be fairly healthy, and Dr. Benzel listed some of the abnormal results of the neuro exam, but did not elaborate......

I'm not sure I want to followup with Dr. Benzel. I may see the CFS specialist---by the way her name is Dr. Gota---in Rheumatology........HMMMMM? I though she was a CSF specialist.

Meanwhile---I have had some good days and bad. It seems the numbness/weakness in arms and legs is worse. If I climb more then one flight of stairs my pelvis area shakes----I have a really, really hard time.

My ankles get floppy, and now my legs are starting to shake. MY jaw,neck,ears,lower head all hurt a lot. If I sit around and do nothing it's hurts less. I can't lay on either side---as it feels like my head/neck area isn't stable---(kind of like a bobble head doll when you lay it on it's side---it just feels like the head is hanging there without support.

I don't know how much time I have to buy---but I'm thinking the Cleveland Clinic--(Dr. Benzel has a closed mind regarding my spine/cranial issues. This is common---and i'm not surprised. He is not totally dismissive, but his thinking is that I have something else going on that might be causing my neurological symptoms.

I know this is long---but a lot has been going on----it's difficult to summerize it all.

I am greatful for all of your support and help. It truly means a lot----as this has been one of the most trying years---and very confusing. I'm still struggling to keep my sanity though all this. I feel like i'm sucking the life out of my husband--as he is my main support. My family doesn't really understand---and frankly I don't think they believe half of this.

Thank you so much again...........

Julie :0)

[MightyMouse]

Julie, I just want to clarify that the "radioactive dye" isn't actually dye. It's a radioactive tracer agent--short acting so by the next day you wont have any radioactivity in you--all it does is make areas easier to see on the films. It's also much less likely to cause a reaction than with traditional constrast (iodine, for example). To read about it check here.

http://www.amershamhealth.com/public/medical/mri_3.shtml

I've had gadollinium many times without a problem--and you know i'm allergic to just about everything.

I don't mean to sound harsh, but how are they supposed to help you get better if they can't accurately see if there's a problem with your bones--especially since the movement of your spine and head has been one of your primary complaints? Sorry, it just seems to be counterintuitive to me. I know you long enough to know you'll take my comments in the manner in which they are intended--I'll support whatever choice you make, but since you asked in your other post and i'm clearly behind in my responses, I thought I'd add my 2bits for whatever it's worth.

Nina

[Evie]

Good luck with whatever choice you make, i hope your parents feel better soon too. I am unfamilliar with those sorts of tests so i dont have any imput other than wishing you well

[morgan617]

Julia, I react to everything and have never had a problem with the tracers and mri dye. I appreciate your not wanting more tests. But if the only reason is you might have a side affect, I have never heard of anyone reacting to the tracers and with the contrast they use now, you virtually never hear of it either. So I hope that's not your only reason...feel better and hope your parents get better too. ouchy kidney stones... morgan

[Poohbear]

Hey girl!

Just wanted to send you a ((HUG)) and say I hope you feel better. Please reschedule the test; while I do understand your fear, they need to be able to get the best results possible. As others have mentioned, there is virtually no risk to the radioactive dye.

Hope tomorrow is better for you and your parents!!

[corina]

Hi Julia,

thanks for keeping us updated. I don't know anything about the "dye" you're telling about (I don't even know what it means, but I will use my dictionary later today ). I just wanted to send you and your parents best wishes. Take care,

Corina

[Guest Julia59]

I have been exposed to heavy metals----------and I had high levels of lead in my urine, so I think my body is very sensitive to chemicals. I didn't have a reaction to the CT dye---so I don't know why I would with the MRI injection. I just know the material is different, and i'm so fearful for some reason.

I really need to talk with my psychologist about this because I need these tests to help me---I am well aware of that..............This I one of the reasons I am so depressed. This is a real problem for me.. Things I should fear---I don't-----and the things I shouldn't fear---I do. I don't have very supportive docs who understand what I have been through. I have never gotten down to the bottom of the chemical exposure issues with any of the Docs I have come into contact with. Dr. Grubb is the only one who tried, but he is so busy---and probably got side tracked as it was never brought up to me again.

I fear havng a reaction and having incompetent Docs in the ER trying to help me. I also read where there is always the slight rist of organ or tissue damage from the tracer. Maybe I read too much..........

I appreciate your thoughts Nina----I don't take offense at all. I think this is a problem I need to have addressed----(My fear). I'm am truly sad---and a little embarrassed by it also. I helped my parents yesterday, and i'm paying for it today. I have a bad headache in the back of my head, and it is difficult for my neck to hold my head up. My legs are numb, and my ankles still try to turn on me. I just want to sit and cry a lot of the time because I am ashamed of my fears----and it's frustrating because I know I need these tests to help me. I really don't understand why this Doc wants a Thoracic MRI when the cervical/cranial area feels like it is falling apart.

I'm really angry too----------------------I'm starting to feel like I don't exist to the rest of my family/friends---and I feel like i'm draining the life out of my husband. It is such a wake up call to find your true worth. I have found that sometimes keeping a family close means that some of us have to take a lot of @#%&.

I can't release my emotions in front of the therapist, so avoid telling her very painful memories. I just feel helpless in so many ways-----and I just keep trying to muddle through...............

The SSDI junk is driving my crazy. We had three friends die at the hands of incompetent Doctors. One who had Lupus and had complications, my childhood friend with MS who died of Sepsis in a nursing home because the nurses were to lazy to clean her Foley catheter out, and one who died in the MRI or CT (I can't remember) machine after having the dye injected because the staff did not take pictures of her brain first to see that she had a blockage----and by injecting the dye she hemorrhaged. She had a massive headache---(rolling in pain)----they made a big mistake and it killed her.

And of course I see all the crazy stuff that happens to many of you---such blatant ignorance. I need to get past his---and at some point I hope I can. This is all so overwhelming for me----and maybe some of what I have posted above can help explain my fear and anger towards the medical community. Don't get me wrong, I still have a good amount of sense and believe there are some good medical professionals out there-----I just feel like it's a gamble-----and the stakes are high........

Julie :0)

[Sophia3]

Julie

I have had the dye as well. I have to echo that I think ,aybe, you should try to get this test done to SEE EXACTLY what is one of your key complaints.

I understand the fear of side effects and reactions. But maybe your counselor can help to see why your fear is now affectng your decision making.

I do not know you or your history but.....I don't want to be harsh either but you have been miserable for so long, I would WANT to know what is wrong with me to get scans, so I could THEN decide how to address the issue. I hope you take my post in the spirit in which it was intended.

Much easier to deal with a scan and what's going on than to get another surgery, maybe?

Just my two cents.

But if you tell the testers of your fears, I think they would make sure to act QUICKLY if there were problems.

Please consider the testing...and I am sorry for all your family's care taking you have had to take on...NOT easy when whe are feeling at our worst.

Be kind to yourself and think about this...

Edited November 16, 2005 by Sophia3

[MightyMouse]

Julie, I hope your doctor and your psychologist can work together to help you through this. I can't say anything nice about what kind of care your friends had--there are bad doctors out there, and there are bad nurses too. I can see why it gives you pause.

You have to weigh out the pros and cons and decide what to do. Nina

[Guest Finrussak]

Julie

Just another supportive voice to say that while I understand totally your fears, [i have reacted to everything and anything; have seen doctors faces go "oh no" after giving me something thats NEVER supposed to do anything funny but did...etc.]- And I have had many MRI's with and without tracer ( which as some have said is not really a "dye"--and its NOT RADIOACCTIVE...and surpisingly and thankfully I never had a single problem!!! as per an MRI info site and 2 radiology sites:

What is Gadolinium?

This is an FDA approved contrast agent for MRI. Gadolinium, or gadodiamide, provides greater contrast between normal tissue and abnormal tissue in the brain and body. Gadolinium looks clear like water and is non-radioactive. After it is injected into a vein, Gadolinium accumulates in the abnormal tissue that may be affecting the body or head. Gadolinium causes these abnormal areas to become very bright (enhanced) on the MRI. This makes it very easy to see. Gadolinium is then rapidly cleared from the body by the kidneys.

also, it collects in various normal tissues at varying densities to further enhance them.

the following is taken from a breast cancer site so it is very specific as to why have it done and tumor related but its still quite useful in non-tumor situations:

What does Gadolinium do?

Gadolinium allows the MRI to define abnormal tissue with greater clarity than ever before. Tumors enhance after Gadolinium is given. The exact size of the tumor and location are very important in treatment planning and follow up. Gadolinium is also helpful in finding small tumors by making them bright and easy to see.

Is Gadolinium safe?

Gadolinium has been used for years in adults and children in the United States, Europe and Japan, without any serious complications in thousands of patients. The FDA declared Gadolinium safe for use in MRI in 1988. A few side effects, such as mild headache, nausea and local burning can occur. Very rarely (less than one in a thousand), patients are allergic to Gadolinium. If you have kidney problems, it must be used with caution. Gadolinium should be used in pregnant patients or nursing mothers only when the benefits outweigh the risk. Gadolinium used in MRI is many times safer than the iodine type contrast used in CT scans. There is more information at the International MR Safety Central Web Site.

What are the side effects?

Side effects of the contrast agent injection include mild headache, nausea and local pain. Rarely (less than 1% of the time) low blood pressure and lightheadedness occurs. This can be treated immediately with intravenous fluids. Very rarely (less than one in one thousand), patients are allergic to the contrast agent. These effects are most commonly hives and itchy eyes, but more severe reactions have been seen which result in shortness of breath.

Be well hydrated ( and even request fluid drips if you need to) and notice the extremely RARE effects--even the headaches and nausea is very uncommon!!!!!!!

As for taking the "well nourished" comment personally...well its a GODD comment...its used to differentiate from "nutritionally at risk" or "undernourished"..often residents follow the training of giving a rating to various parts of the H and P (history and physical) that conforms closely to a choice of 3-4 categories. I know all this because I had been very at risk nutritionally due to malabsoprtion for nearly 2 years ( dropped to 84 lbs) and questioned the various notations on my chart by the Drs and the hospital nutritionist.

As far as the MRI...if you are having sx while sitting and standing but less or not at all while lying down ask your radiologist for the nearest MRI that is OPEN and that can do various positions...I posted a few months ago that I had one of those while sitting and standing!!!! and most of the pics were VERY clear and diagnostic!!!!

What I do when I am afraid of a procedure is make sure I know all about it, and also make sure that all involved from the appt people to the techs know about my conditions!!! This way should an emergency occur, there's less chance for mistakes. Then I put myself in their hands. [of course my cd player loaded with Enya and Bette Midler helps too!!!]

Good luck and be strong!!!

[Guest Julia59]

Finrussak,

Thanks for your encouragement. I just got back from the MRI----but I didn't have the contrast. One reason is that my BP was dropping----and the other reason---the MRI tech said the pictures images of the thoracic MRI should be fine because I did not have surgery on that area---which also means no rods, screws plates---ect.

I did not do very well during the test as my anxiety levels were high, and I was also having a bad neck/back/POTS day. I didn't panic----just felt uncomfortable----and never complained once to the tech.

I had to do one set over as it was blurred due to movement. I had spasms in my middle back and arched a couple of times---and that messed up the last set. I was also a bit nervous about my implantable cardiac loop recorder---and having all that magnetic field around me. I'm still shakey---and reeling from the anxiety. Nina---I wish I had your courage.............I feel like a coward sometimes.

I don't really want to be too hard on myself---it's just a tough time right now. I think all the pain I have been in has beat me up, and as a result my nerves are frazzled---not leaving much room for more stressful events. I suppost my ADD doesn't help. Quite a while ago--I think 1995 I brought up my tachycardia spells up to my PCP. She had wondered why I was on Inderal. I told her I have been on it since 1990. At the time that is basically all I had was the tachycardia/panic attacks, and the fatigue was very mild. I only had two spells in early 80s & 1990 where the fatigue/dizziness/balance problems were pretty bad---it lasted about 3 months. My physician said she was worried about me because tachycardia and ADD/ADHD don't mix. She said the spells would feel much worse to me-----because the ADD/ADHD alters my perception----thus making me feel panicked----doomed. If only there was a magic pill to fix this. I was not able to tolerate the ADD drugs as a child. I do tolerate wellbutrin well, and that can help with ADD as well. However, I take a small dose. I tried to increase it, but was not able to tolerate the larger doses.

I have struggled with ADD/ADHD all my life---and I feel robbed due to not getting the help I needed during my younger years. All this aside---I am proud of what I have accomplished in a short period of time after coming to terms with the ADHD---and I just work around it. ADD affects many aspects of your life---even how you perseive illness. So not only do I battle POTS/pain---and all my spinal issues---I also have to deal with how my mind twists it all out of proportion. I always have to be aware of this, and fight through it.

I plan on rescheduling my bone scan----- I think this is important. This will be on my neck---and this is where I have a lot of problems. Thanks girls---for pushing the issue with this. I just have to get this over with, and see what my next steps are.

Thank you all so much for your words of encouragement.....Nina---and Sophia---i'm not offended at all. You both said what needed to be said---and it was not done offensively.

All of this---and the other stress going on in my life has just sent my teetering on the edge----You guys are my rope to keep me from falling............

Julie :0)

[Sophia3]

Julie

Glad you got thru this test and I can ONLY imagine how hard it is to be "still" for some of those shots when one is uncomfortable or claustrophobic.

Glad you weren't offended by my previous post.

Be kind to yourself and just try to get a handle on the anxiety. Once you get more viewings, and know a bit more of what's going on, you can THEN choose a plan of remedying the situation.

Sophia

[MightyMouse]

I'm not all that courageous... we all have the things that freak us out. Mine just doesn't happen to be medical tests. However, if it involves a needle in my mouth or a dental drill, I'm a complete goofball.

Nina

[Guest Finrussak]

Julie

Youre doing great!!!! Dont be too hard on yourself....its a funny thing but the Dysauto stuff can in itself provoke chemicals causing anxiety...adrenaline is adrenaline....so while stress and nerves worsen the dysauto stuff it also goes the other way around too...and CAUSE some anciety sx..the trick is to go with the flow....Ive found that imagining the illness as the ocean with its occassional large waves ( episodes) causing my boat of nerves to rock...and then knowing that jumping around in the boat will rock it more....etc so I TRY to deep breathe and just let the waves wash over me...knowing itll pass. And you did fantastic with the MRI!!! In past, Ive had to stop the tech a few times myself!!! to be taken out for a breather....

My son age 22 was dx with ADD in his soph year college 2-3 years ago...and I see how hard it is for him to adjust but it did explain a lot!!!! so I undertsand a bit of what you are dealing with....hang in...us "whack- a moles" always pop up again!!!!

Finette

[Guest Julia59]

Finette,

The radio active dye will be used for the bone scan---via injection into a vein in the arm.

From what I hear the exposure to radiation is the same as an x-ray.

Julie :0)

[MightyMouse]

Julia, good luck with the bone scan. I've had those too... easy compared to an MRI.

Nina

[Guest Julia59]

Nina,

When you had your bone scan with RO tracer injection, was it to check and see if your bones fused in your neck after your cervical spine surgery?

Dr. Benzel is doing this test on my cervical spine to make sure there was a fusion of the bone----due to my EDS. I kind of wish they would do my whole body---or at least my full spine. I don't know if you have this sometimes, but my mid thoracic spine feels a bit like my neck does if I sleep on it wrong---like there is a kink in it. It hurts when I take a deep breath. It's been that way for about 4 days now.

I picked up my Son's girlfriends's daughter Kaela over the weekend. I leaned backwards on the kitchen counter and propped her on my hip so my hips could bear the weight. I do this because my arms are fairly weak from the pressure on my neck---and it is very difficult for me to hold anything above 15 pounds.

I think the pain might be from that---and i'll have to find a new way to hold Kaela. Would you believe my cat Spencer weighs 18 pounds----about the same as Kaela, maybe a couple of pounds less! He's not really fat either---just solid---a big boy.

There are occasions that I have to lift him and he turns into a wet noodle which is no help at all......

Thanks again to all of you for your encouragement.

Julie :0)

[Sunfish]

julia -

just wanted to add my encouragement & support...you've had a lot going on & it's so tough to sort it all out i'm sure. i think it's great that you're going to push on with the testing b/c ultimately otherwise you'll probably be wondering what it will/won't show...i'm hoping that it's as uneventful for you as it has been for others & that you do start to find some answers/clarity...

hang in there,

melissa

[Guest Julia59]

Thanks Melissa!

Apparently the bone scan has to be rescheduled as there appears to be a national shortage of the RO tracer. I think the guy's name is Jim------anyway he called me yesterday from nuclear medicine and told me that there is a shortage and it will be a few weeks and he took my ph#. I thought it was odd---and it kind of took me off guard. I will be at MUO on Monday---so I will check into it more.

I'm sure Dr. Benzel is just trying to help---however, he seems to be a little dismissive of the neck issues----but after I talked with him a little longer---he did take a second look and that is when he ordered the tests. He did feel that I have abnormalities, but he seemed to think I have other sources of my myelopathy and other neurological problems. I have not completely given up on him, but you know how it is when your not sure how to take certain Doctors. Who knows, maybe he will be the one that can find some answers.

After thinking about the other tests for a couple days----I decided that I can't continue to be in fear about all this---I need to help myself because i'm not getting any better.

I know I must seem a bit wishy-washey----but for good reason. I've been going through a rough period---and find it difficult to trust the medical community, but I have realized I need some help in this area, and i'm already getting it. It's just that my specific fears on testing haven't been addressed. When I get hyper adrengic, my mind gets out of sorts and I get confused and very emotional. Lately I have been hyper/adrengic and have had a pretty bad POTS crash along with disabling pain, and I tend to be a bit more fearful when hyper/adrengic.

I also realize that many of you have more going on then I do---and you must know that there can be times where this stuff can really mess with your mind.

I called Dr. Benzels office and spoke with the Secretary about the RO tracer shortage-------she didn't seem overly concerned and told me that hopefully the shortage will be over before my appointment with him on Jan 23rd. I'll see the CSF specialist on Dec. 22nd. I'm just going to ask Dr. Benzel straight out----does he take any of this seriously---if not i'll let him know that I need to find someone who does. Hopefully it will work out----I can't deal with a doctor that is dismissive.

Julie :0)

[DancingLight]

Julie,

This is the first day in over two weeks that I have even been able to read through a lengthy topic or reply...so I am waaaaaaaaaaaaaaaaaaaaaay behind and am just seeing all that is going on with you recently.

I want to reply in-depth to you if I can soon...but I don't know if I will be able to...SOOOO what I wanted to communicate most was that I am thinking about you and sending you love to hold you up (remember my little line about others will sind your sond for you when you cannot????) We're here helping you sing while you can't, k????

You will find your way out of this dark place...it's just hard not knowing when that will be! (I'm right there with you on that one....um, it's almost been a year since GB surgery?????!!!! Yikes!)

More later if I can, otherwise....lots and lots of HUGS!

And note that well-nourished simply means healthy! So, no worries. Even when I was in college and VERY slender, all of my records say well-nourished. It does not mean 'fat'!!!!

And, good luck with the bone scan. I just had an MRI with contrast and did fine...I also did the closed MRI b/c for what I needed that was better...but if you could do it with the Open MRI I think it would be much easier to communicate if something does go wrong or you do feel panicky. But, hopefully the films without contrast will be just fine. I have also had nuclear medicine test once and it was fine...so I hope the same goes for you!!!!!

Okay, dinner time!

Emily