No surprise there, but glad you got the evidence. And, I assume the doc wrote up an adverse event report?
I wrote an adverse event report because I had a feeling my first doctor wasn't going to do it. I really wanted there to be something for someone to find if it happened to anyone else. Several people kept saying no one is allergic to the glue, or I have never heard of that happening....well now a pretty basic search will bring it up. I learned that the glue is considered a medial device, not a drug. So my complaint was cross listed on MAUDE- Manufacturer and User Facility Device Experience database as well. I have been talking to the glue company recently and will finally be getting a sample so that other allergy testing can be done.
Hi mountain girl, glad you finally have something on paper. We know our bodies better than any Dr. could and you knew something was wrong and stuck with your gut feeling. I hope your health continues to improve.
DeeDee
If there is one thing I have learned from this crazy, twisty turny journey, it is that if you want to get better...you have to take control. Oh how I wish that there was a medical person out there who would just take control and tell me what to do! Not that I don't have a few AMAZING caregivers. But they each only see their one little area of expertise. No one sees the whole picture. I am left to scribble notes at appointments, gather reports and try to make sense of it all. What should I try next?
I got my hands on the glue. Yup called the glue company and had them send it over. Why didn't I do this months and months ago?!? But of course, nothing can be easy. The allergy test was negative. My immunologist explained that this doesn't mean I am not allergic. Ahhh medicine the inexact science. Not sure what this means going forward treatment-wise, but CHECK one more thing off the list to try anyway.
Tomorrow I will see Dr. Suen in Little Rock. He offered to do a scan to see what glue is remaining and see what it would take to get it out. I learned that the body absorbs the oil they mix with the glue. And once this happens (around 2 years) the glue is invisible on scans. I am not sure if I will have another surgery, but it seemed like a good idea to map out the glue before it is invisible.
In a few weeks I travel to Minneapolis to see a mast cell specialist. And, have an appointment with another mast cell specialist in December in Boston. Hopefully one of them can tell me WHAT HAPPENED and HOW DO I MAKE IT STOP?
When these steps are complete it will be exactly 2 years from my embo. I wish I could go back and tell my 7 year old self...DO NOT ride a bike a fly a kite at the same time. You will crash, develop an AVM, have a horrible reaction from the treatment, spend a lot of money, and travel to 3 states in your quest to get better.
hello Mountain Girl
The allergy test how was it done? Blood? Skin test? Good to know that the oil absorbs and then you cant see it on a scan.
I am glad you are going to see someone for Mast Cell
I have done a bit of research because I thought my little sister has it
But her derm and her allergy/immune doctor kept saying she did not have it and would not prescribe anything for it even though I brought them research and she had most of the symptoms
So I ask our pain neuro to prescribe her doxepin - she did it and my sister feels and looks much better
I found some videos from Dr Ann Maitland which was the most informative
The 24 minute segment, which currently is the bottom of the three segments on the list, is the first one. That starts with the introduction.
http://www.ustream.tv/channel/eds-nyc
also my sister is doing a low histamine diet in combo of the doxepin and two allergy pills
Good Luck keep us updated
Angela
Hi Angela
Yes getting a mast cell diagnosis is difficult. I am going to see Dr Afrin and Dr Castells. If they can’t figure this out, then no one can! Thanks for the videos.
They did a skin pick test and a skin patch test. There is some debate as to whether I could have had an accurate test because I was still taking cromolyn and Xolair.
Dr Suen says Hello to everyone! CAT scan done. Little bits of glue are scattered throughout my scalp, face, and the biggest gob is behind my left eye. Surgery is too dangerous to consider at this point. And onto the next idea…
Ugh, it must be an uncomfortable feeling knowing that, Mountain Girl. Hoping the next idea is a good one.
I am s sorry Mountain Girl
This is terrible. Can the glue still continue to travel? Can you see out the eye that the glue is behind?
The only 100% way of knowing for sure you have Mast Cell is a bone marrow test
They started out with a 24 hr urine test with my sister at my request...which showed over the normal amount even though she had been on doxepin for over two months
Now we are awaiting another blood test. But like Dr Maitland she treats the symptoms and gets results with combo of allergy meds and doxepin.
I spoke to my primary about how my sisters derm and allergy/immune/infectious doctor would not prescribe it and she said she would of prescribed it.
My primary is pretty awesome and so is my pain neuro thank goodness for the good ones!
I have heard of good things about Dr Afrin. I have some more info on Mast Cell but I am having issues with my ms word doc but I think I posted on another support site and will look for it and post it on this thread!
Have you tried coconut oil for your skin?
Angela
I don't know if the glue will move anymore. I have no major vision problems at this point. Just lots of irritation and blurry vision at times. Just realized it would probably be a good thing to get my vision checked. (Another thing for the list!) Has it been 10 years...Ooops!!!
Fortunately for me a bone marrow biopsy is not indicated in my case because my tryptase is not super high. BMB are only done if your tryptase is over 20 indicating that your mast cells are replicating out of control. That would be mastocytosis. Luckily I do not meet that criteria so I would fall under the mast cell activation syndrome umbrella (mast cells that are dumping their chemicals uncontrollably). I hope that your primary care doc will help your sister. There is a new bens friends mast cell facebook page. Join!
https://www.facebook.com/pages/Mast-Cell-Disorder-Support/454071581400537
Hello Mountain Girl
Here is some more info on Mast Cell
You can listen to Dr. Maitland explain MCAS and what to do about it in this video: http://eds-nyc.com/tag/dr-maitland/ and in her slides from the 2014 EDNF Conference: http://ednf.org/sites/default/files/Anne%20Maitland.pdf
And here is a pamphlet you can print out to learn more and to teach others about MCAS: http://mastocytosis.ca/MSC%20Information%20Pamphlet.pdf
This Canadian organization does have great information on their website: http://www.mastocytosis.ca/masto.htm
Dr. Maitland’s 2014 EDNF Conference slides about MCAS: http://ednf.org/sites/default/files/Anne%20Maitland.pdf
Angela
21 Months post embolization and an expert who understands the type of reaction I am having has finally said "this is your bodies reaction to the glue". He explained that I would have problems as long as the glue is in my body though the symptoms may calm down over time. That is hard for me to imagine at this point as it takes $7000 worth of drugs a month to function at a 'normal' level with a few break though symptoms on the side. There are more treatments to try, but for now I have to limit my physical activity and stress or the symptoms multiply. I now have a good team in place to help me during flares.
The CTA scan identified little bits of glue scattered around, with the biggest concentration behind my left eye. Not something any surgeon would want to go in and get unless it were cancer. I kinda need to be able to see!
All that I have learned over the past few weeks comes as no surprise to me. It feels good to have confirmation of what I have suspected all along. So glad to be through this process. DONE!
It is time to move on...
Hello
I am so glad you have confirmation of of course of what you already knew to be true
We know our bodies and so glad you found an expert in the field.
I was just telling my husband about you today because we know that I have to go back in for another embolism and trying to figure out when is the best time- I am hopeful that they can now do the 3D CTA so I can skip the angiogram
sorry you have to take so many meds.
Did the expert give you any time frame on when they expect it to be out of your system
and if so and its being used to create the dams and it goes away why the heck are they using it?
do you feel that over the last 21 months you have gotten any better?
Angela
The glue doesn't go away...but my body might become desensitized over time, similar to how allergy shots work. I have not gotten any better at all since I recovered from the AVM surgery. Only better controlled by the drugs. There will be periods where I get more sick and we have to change a dose or in May we added in another drug. And there are periods where I feel better and think I must be imagining this all so I decrease a dosage of one drug. This always results in more symptoms and the strong message...you had a good day because you are on the drugs, not because this isn't happening.
I have had two 3-D CTAs..they are super cool. I posted a shot from my post embo CTA. That was a lot of glue! Best of luck to you.