Sorry to hear that things are still not so great. I can tell you that even though the blood markers might say you are not allergic, it still may be the case. My granddaughter is allergic to peanuts and was tested and the blood test came back normal, but if you just rub peanut butter near her mouth she swells up so her Dr. said no matter what the blood test said she is allergic and do not let her eat anything containing peanuts!!!
Do you know how much glue is still left in your body?
No one is really sure what percentage of the glue was taken out. I would have to have another CAT scan, which I am in no hurry to do. I am glowing as it is!! There is embolic material in my ophthalmic veins and cavernous sinus bilaterally. Dr Suen also said he thinks there is some in the smaller vessels throughout the area.
Eileen, I hear ya about learning to not accept pain. It is a concept that I have had to practice. I was a gymnast through college. And if there is one thing a gymnast is good at, it is ignoring their body and getting on with the task at hand. I remember the immune guy asked me if my stomach hurt. And upon reflection I realized that I had been nauseous for weeks and had pretty bad stomach aches, but I hadn't mentioned that to any of my doctors. Because I didn't even notice! Oh and of course it is torture for me to complain about something....a serious NO, NO in the gymnastics world.
I have been on gabapentin (neurontin) since February. It works well at night when I need it. I don't take it during the day because I have to take care of my kids. The "pain" is under control. My question is why is there pain at all? None of the doctors has answered that question! Good thing I have a very high pain tolerance. It will be interesting to see how my body reacts once I am on duty full time when school gets out in a few weeks. Fitting in my siesta is going to be a challenge!
Yes, right from the beginning I was sure that the embolic material was poisoning me. Every time someone tried to tell me it wasn't the glue, I would think if you could just feel what I am feeling you would be sure too! But when all of the labs came back negative and the mast cell medicine started working I started to doubt myself a little bit. Then Dr. Suen said what I had been waiting for any of my doctors here to say...it is the glue and we need to get it out. THANK YOU!! I almost cried with relief! I only wish that he had been able to get it all out.
So yes, I think the glue is causing the burning in my head...and for some reason my whole body started burning as I got sicker and sicker. This is why I am starting to wonder if this is more of a chemical injury vs. an allergy. I also read that chemical injuries can cause mast cell activation disorders. If you read about the glue and oil the word toxic comes up a lot. Prior to 2000 the FDA wouldn't approve it because they considered it too toxic. Can something be more toxic to me than to another person? Why didn't my body tolerate it when almost everyone else is fine? What kind of doctor deals with chemical injuries?
I don't know whether the veins are still thrombosing. I would think that process was over a long time ago. But that is not my area of expertise! My head is actually sore in addition to the burning since surgery. The whole area just feels pissed off. Yes, that is my scientific medical term. I almost don't want to lay on the left side of my head anymore. All of the nerves that were cut for the surgery are starting to reinnervate.
I am going to have to steal "this girl is on fire" as my new slogan for a while!
It is now 6 months post embo/3 months post resection. Another month has gone by and my body has healed up more. Overall I am grateful to be doing as well as I am. My immune doc got the pneumonococcal titers and other blood work back. He said that my immune system did respond to some extent to the vaccine, but not as much as he would have liked. Whatever that means? The other test came back normal. I told him that he figured out what I already know. I am functioning, but broken, but not so broken that there is an obvious next step.
I decided to take a break from all of this for a while. My immune doc agreed since things seem to be moving in the right direction. So I will stay on the medications and check back in with him in September. If I can't wean from them at that point I guess I will just have to accept that whatever it is that happened (since NO one has really said) is permanent.
With the help of cromolyn and a double dose of allegra my energy levels have pretty much returned to normal. Now I just have to rebuild all of the muscle and cardio fitness I have lost over the last 6 months. At this point I can run once, swim a few times and do basic conditioning/weights each week. I still nap every day because my head and eyes need a break. As time goes by my body can handle more, but I have to be careful because when I go too far I feel sick for a few days. Some of the crazy stuff in my head has gotten better, some worse. Part of me thinks it wont be too long before I end up in a CAT scan machine. But not now...I am on vacation!
Good to hear from you, I hope you continue to improve. When I see my neurosurgeon in Sept. I will keep your story in mind depending on what he wants to do with me, as there really is no such thing as a simple procedure. Enjoy your vacation & keep us posted.
Surprise..surprise.. I got a few calls from the drug company. Of course I had hoped that filing an FDA adverse drug reaction report would accomplish something, but I wasn't holding my breath. The drug company rep called me to let me know that they are going to 'do a full investigation'. They needed some more info and my doctor's names/numbers. Then she called again a week later to let me know that she had contacted my doctors and the investigation was ongoing. I was impressed until I talked to a friend in the drug business. I was told that it is mandatory for the drug companies to investigate any complaint filed with the FDA.
It has been 8 months since the glue was put in my body. The allergy drugs and mast cell blocker are doing a decent job of managing my symptoms. But I am still not back to normal. Just trying to be patient and "live well" within the constrains of my new 'normal'. Hoping that one day I will be able to stop taking these drugs and return to being an athlete once again.
hi mountain girl! my husband is having a different reaction with the glue.
with the percutaneous approach, his scalp is rejecting the glue. he did not have this problem when it was done through the catheter.
right now, the his scalp is pussing and the glue is coming out in pieces. the doctor said to wait, i dont agree with that approach that is why i am searching and found this site.
It has been 10 months since the embo that changed my life. My body has healed enough that I can function like a normal person. I can do basic workouts every other day as long as I nap. At the end of the summer I decided to try and cut back on my medications...because I must be better by now!! And it was a disaster. Instead of proving that I was better, I had to face the realization that nothing has changed in 10 months. The drugs are saving me. It is looking more and more like the embo, the glue allergy, or the steroid reaction triggered a Mast Cell Activation Syndrome (MCAS).
In October I went back to the immunologist to see if he was ready to pursue a diagnosis. We took a break after 5 months of searching and 10K worth of blood work that was either negative or borderline. During that break, I joined Mast Cell disease forums and read every journal article I could find on mast cell disorders. It was a relief at first to finally figure out what happened. See...I am not CRAZY! But then there are the realities of having a chronic mast cell disease (no cure, progressive). During the visit, the immunologist said "I don't think you have a chronic mast cell disease". At that moment, I really wished that I could believe him. I hope he is right. But at this point, I am pretty sure that I know more than him about what a mast cell activation syndrome looks like. Researchers have only begun to classify and publish research on this category of disorders since 2010.
The immunologist just wants to wait. No more testing. Does a diagnosis really matter? I am already being treated for a MCAS. If I get worse, I have already identified the specialists that I will have to go and see (Charleston or Boston). It turns out my immunologist has worked with the specialist in Boston. Which explains how he knew what medicines to put me on after talking to me for five minutes back in February. Mast cell diseases are so hard to diagnose that most patients go on suffering for years, sometimes their whole lives without begin diagnosed. I am the luckiest person on the planet!
The immunologist told me how to get my drugs via my insurance companies mail order pharmacy. This is great advice for anyone who is on a drug that is super expensive. The cost went from $270/month to $15 for a 3 month supply!!!
Thank you for informing us about MCAS, Mountain Girl; I will try to learn more about this condition. I am so sorry that you are still living with the consequences of this embolization. I hope that research will discover a way to cure this condition, or at least bring a lengthy remission. I also hope Boston (or Charleston) will publish your case, so that interventional radiologists can learn from it and their patients can benefit. I'm glad you have been able to lower the cost of your medications.
Here is a link to the most comprehensive info on MCAS. When I first read this, I wasn't sure that MCAS was the answer. Because, I have most certainly not been sick my entire life. In fact, I have been super healthy. But then I read other resources and most importantly the stories of others who have been diagnosed. There are others out there that were triggered by an event or drug. One 27 year old was triggered by a course of pregnisone! Horrible!!!
Oh...and notice the reference to AVMs in the text. That made me take notice!
Hi, I think I’ve got the similar problem with "my glue"
I’ve got an avm in my cerebellum on the right side , I already went in for 4 embolizations, but the last time I developed some kind of burn on my scalp, as it progressed , some " tube-like " thing came out, had to go to the E.R. to remove it, but still got a burning sensation surrounding the wound, though it’s closed up. Normally I had to go for my 5th embo, but they wantend to wait till July cause of the wound, have to go for a consulation on april 11th, I’ m really curious as what they’re gonna say, it burns, itches,… I think there’s a lot more glue under there…
You are now the 3rd person I have met with stuff coming out of their head post embo. 2 were glue and one was onxy. So gross!! I hope you are ok...as ok as you can be with an AVM and open wound on your head anyway!
Is the blue thing in the picture what came out? The glue used in America is NBCA and it is yellow. I realized I never posted a picture of the glue, I will do that in a minute. Another person posted a picture of their wound when the onyx came out. She is on the facebook group (see link below). Her story/wound pictures seem a lot like yours. She recently had another wound debridement surgery due to recurrent infections in the wound. She had a black tube come out.
I hope your head heals up now. Are you having any other symptoms in the rest of your body?
This is from the surgical removal of my glue. I didn't think to take pictures when it was pouring out of my head in my bathroom. It is a yellow grainy paste. Sorry for the low resolution. I didn't want to post the full surgical image.
It has been 16 months since the glue was put in my body to treat my now obliterated facial AVM. My AVM journey is over, but I still struggle daily the consequences of my emobolization treatment.
I am happy to report that there are finally some days where I totally forget about being chronically ill. I haven’t gotten any better as my immunologist had hoped, but I can stay fit enough to keep up with my 3 kids. We had a great winter on the slopes! Good times help me to forget this ongoing struggle and that I can’t be an athlete anymore.
The thing about mast cell disorders is that rules can change. Something that didn’t bother you one day, can wreak havoc the next. The drug cocktail was controlling my symptoms for the most part, until it wasn’t. I put myself into a series of flares over a few months. Sometimes they were expected, like when I totally disregarded my limits and skied hard (kid free) all day. But other times it was hard to identify the triggers. I was forced to drag myself back to the immunologist because the symptoms were getting more severe and persistent. Even I can’t shrug off low blood pressure day after day.
The immune doc surprised me once again by bringing up an experimental treatment called Xolair. I think I liked it better when he took the just wait, you will get better approach. Things become a lot more real when you doctors start talking about implementing an off label use of drug that costs somewhere around $60,000 a year! Thankfully I have pretty good insurance, and the makers of Xolair give patients $4000/year to pay their copays. Let’s see how much this is going to cost once the dust clears. It is so complicated, but I am estimating it will be somewhere around $200-400 a month. It took a month and some creative scripting to get it through insurance. First monthly dose is tomorrow!
There are still so many unanswered questions. Was it the glue? No official diagnosis. No prognosis. Just mast cell limbo! Let’s see where Xolair takes me.
Wow, keep us updated on the Xolair. Mountaingirl, since volunteering on our other communities, I have found there are an amazing number of triggers that can be catalysts for chronic autoimmune disease -- viruses, vaccines, bacterial infections, exposure to toxins, exposure to mold, etc. If it wasn't the glue, it was most likely some other aspect of the embolization process. I'm sorry you hit your trigger and life changed. I hope Xolair helps keep you going.
I just learned that there has been objective proof that I am allergic to the glue since last March. My surgeon sent my AVM with the glue in it to pathology when it was removed. I recently requested all of my medical records and finally got to read the path report. There were definite cellular changes that were abnormal and indicated a reaction. This doesn't change anything, but it feels good to have something other than my crazy rantings as proof! I spoke to my surgeon recently and he explained that based on all of the evidence, (the path report, the reaction happened directly after the embo, that so many of the symptoms were in the glued area, and my body spit the glue out) he is sure I am allergic.
