Exacerbation after MRI with Contrast???

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Nordy
Nordy Member Posts: 2,106
edited March 2015 in Lymphedema

Okay -- First of all, Hi Friends! I know, it has been forevvveeeerrrr since I have been around, but I promise I do pop in every now and then! I hope you are all well! I have been reading some of the threads on the surgeries (you all know I fought my insurance for THREE years to try to get even the testing done for it and finally gave up -- if it was not one excuse with them it was another and I finally couldn't take the emotional roller coaster they put me on every other month! BUT now the hospital - that writes its own sh*tty policy -- has hired a new surgeon who does both LNT and LVA and it is plastered all over the hospital's Plastic Surgery website that he is doing them... so seriously, how can they continue to deny??? Although I am sure they will... but I have an appointment to see him the end of January).

Anyway --- My lymphedema has been fairly stable over the past couple of years, with the rare mild exacerbation from a long cycling event, but I have always been able to reduce my arm within a couple of days. Well, a couple weeks ago I had a MRI with contrast as a baseline and to check for the cause of some chest wall pain. After a brief scare and a core needle biopsy on my reconstructed breasts -- it was determined all is well, so no worries in that department!! My big issue now is the size of my hand. The day after my test I had a pounding head ache, then a week later I woke up to a hand that had ballooned overnight! And it is painful! I had an US after a few days of dealing with it and it was negative for a DVT. I also just finished a round of antibiotics, but honestly, this does not present like my past episodes of cellulitis. It is SO different AND I cannot get it to reduce. I have to tell you, it has sent me into a downward swirling vortex. Most of you know me... I like to be active. I like to cycle, dance, ski... and right now I have a monster of a hand that is so incredibly painful... and not just the normal pain from swelling, my joints hurt. Honestly, I think it is from the contrast! There was no other precipitating event. No different routine, no long bike rides, no needle sticks (of course the IV was administered in the other arm - just in case you thought of asking ;) -- and no matter what I do it is not reducing. I wrap, use the flexi, self massage, dry brush, essential oils, MLD at the PT's... and.... nothing.

I am not necessarily looking for answers, but has anyone else experienced anything like this? I am thinking of doing a heavy metal detox. I don't quite know what else to do! If you have any tips or have experienced the same thing - please chime in!!!

As for the people that are putting themselves out there and taking a chance on surgery - I want you to know that I personally thank you for sharing in your journeys... It is good to have hope for something in the future.

Thank you and have a Merry Christmas, Happy Hanukkah and any other holiday you may celebrate!


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  • floaton
    floaton Member Posts: 181
    edited December 2014

    Nordy, first off, how frustrating and painful for you! I hope that it resolves soon. Lymphedema is so weird, it seems like anything can piss it off :(. I do hope it's not a trigger for me as well, but I'll be sure tolet you know... I have my first post-LE MRI next week.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2014

    Thank you for posting this - I have lumbar and bi-lat hip MRIs coming up to look at increased left side hip pain.  It had not really occurred to me that this could cause a problem - the last MRI I had was pre-BMX.  I have had four recon surgeries this year and have found that the general inflammation from these surgeries has irritated my arm each time, even though three of those procedures were not on the LE side - especially troublesome were the three back to back in Mar/Apr/May - it took quite a while for the discomfort to subside.  I am so sorry that your hand is painful and hope that you can get it resolved soon.  Please keep us posted on what worked - if possible.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2014

    Hi Nordy how frustrating for you. Im really sorry about your hand. Us LEers I think dread the thought of it getting into the hand as its so hard to deal with. Gentle hugs. Though this probably won't give you any answers, I thought Id just weigh in when I saw you mention about heavy metals. I had an MRI in between my 2 Mx's which were about a year apart. The contrast most certainly upset my prophy arm which bore the brunt of everything. In the end I had to take steroids to get rid of an incredibly annoying rash which developed around the needle site. After the punishment my prophy arm took through all the tx's it was "suspected" that I had LE in that arm too but thankfully it never went into my hand. We all know enough to say we're so different in how our systems hold up to the rigors of tx's. Really hope you get some relief and answers!

    Im so sorry also that you had the extra trauma of "dealing with the system". Having to fight for 3 years is absurd!

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited December 2014

    I'm so sorry! Not that it will help, but I also developed a reaction when I had a CT with contrast 7 years ago - a red itchy rash all around my waist. It eventually resolved, but the skin that was affected is darkened to this day. I contacted the hospital and got the exact type, brand name and dose of contrast that was used, and now I have that info in all my medical records. You may want to find out exactly what contrast was used so you can avoid it in the future.

    Seems that a reaction to contrast is not that unusual . . .

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2014

    Nats I seem to remember there were 2 or 3 options as far as that contrast went (in NZ). Might be different in US. I'm hoping exactly what I had is in the system somewhere. In any case I'll be treating all contrast with a very dubious look. A rash around the waist would NOT be my idea of a good time. I know shingles can leaves marks for years.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited February 2015

    I'm most likely going for LNT surgery next month. I will definitely be posting to share how it all goes.

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2015

    Maria - please keep us in the loop. I am seriously considering taking the plunge, but I am chicken!


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  • Janna3
    Janna3 Member Posts: 3
    edited March 2015

    I was scheduled for an MRI.  I didn't know until I got there that they were going to take 2 blood samples and use a contrast dye.   I said NO, and left.  I called my Plastic Surgeon and she did NOT order the contrast and said it was not necessary !  I think it was just another way of this clinic which does MRI's to make money.

    My problem is I have LE in the opposite arm and hand where the Lymph Nodes were removed.  Trunk LE on the other side. 

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2015

    My hand has not gone back down... It has been almost 3 months... I wrap, I do self MLD, I now wear a glove and did not have to before. I discovered that I should have only had 13 cc of contrast and was given the maximum of 20 cc.... I wrote a letter of grievance and would love to do more, but my hubby works there so it is rather sticky. It has changed my life for sure...


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  • Morwenna
    Morwenna Member Posts: 1,063
    edited March 2015

    I had a breast/chest wall MRI last October, and my issue was not the effect on my lymphedema, but the fact that that arm was in that elevated position for so long (around 50 minutes) really did a number on my shoulder! After a few weeks of shoulder pain it spread to my elbow, and is still an issue when picking things up using my left hand! Fed up with it!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2015

    Sorry Nordy, didn't see your original post. Hummm. You might be onto something with the metal detox. Just putting it all together, maybe the contrast they put into you caused a wide spread inflammation and of course your Le limb is already a type of inflammation to begin with. It may have tips the scales I was also thinking that the sore joints might be part of that. the big clue though is the immediate headache. It sounds like a widespread reaction. Keep us posted

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2015

    Hugz - I am in total agreement... It all points to the contrast. Meh.


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2015

    I had bi-lat hip MRIs, and then a lumbar immediately following, a week ago - without contrast, but I was in the machine for just under two hours.  Interestingly, I had swelling and discomfort for the following week - just now feeling more normal.  It makes me wonder if it is both the contrast and the MRI itself combined that is causing issues for you, since the MRI alone seems to have caused a flare for me.

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2015

    Because of the inflammatory reaction with my headache and joints --- and I was only in there about 20 minutes, I tend to think it was the contrast. I have had MRI's before and had absolutely no issues... but the fact that I was given 7 cc more than recommended is HUGE. I had enough for a 220 pound person... and I am no where near that... They have weight dosage guidelines for a reason... it is unfortunate that the radiologist did not choose to follow them.

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  • carol57
    carol57 Member Posts: 3,567
    edited March 2015

    SpecialK, it's funny you mention a lymphedema response after a no-contrast MRI. I had an MRI of my hip last week, and yup...I had a flare in my arm that day and into the next. Minor flare, but noticeable! I had the impression that my molecules had been stirred up.

    Nordy, your experience is mortifying. I hope you're following up with a complaint about the contrast over-do

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2015

    carol - I hope your molecules have calmed down, lol!  I also have an area of skin cancer on my arm that is also currently being treated topically.  I asked not to have a wide excision or burn and scrape because I was worried about causing a swelling problem - I am using a cream that causes an immune response.  I have used it before but this is the first skin cancer on the arm since I developed LE - I have a bunch of areas on my back that have been treated both ways - didn't have any arm problems.  I got a bit nervous after the arm started to bother me after the MRI, but the other arm responded as well (I have bi-lat but the right is worse) so it was definitely the MRI.  Things seem ok now - it has been a week since the MRI.  I hope your MRI results are good - I had new/persistent/unexplained hip pain and I am on Prolia, so they were fishing.  I have trochanteric bursitis and gluteus medius stress tears, along with bone spurs and disk issues I already knew about, but I'll take it over the alternative.

    nordy - that is terrible - shouldn't have happened.

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  • carol57
    carol57 Member Posts: 3,567
    edited March 2015

    All I can say is that getting old wears out the body, and it's so frustrating! I learned I have a labral tear of the hip, and next week I see an orthopedic surgeon to learn about options. Ugh. On the other hand, I'm healthy and fit and have lot to be grateful for, so I guess I'll just go forward and problem-solve along the way

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2015

    carol - my son is a sports medicine major with kinesiology focus and he read my MRI reports - his comment, "this all looks pretty normal for your age" I guess I was a bit surprised there were so many notes about different crumbling parts, lol!  Sorry about your hip, is it very painful?  I am having enough discomfort that I am having trouble sleeping.  I agree - just press on, see what the fix is, and hope it works.  Sounds a lot like dealing with LE, doesn't it?

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