I had a fistula on my forehead that had been growing for 30 years. IT was successfully embolized in December, but I seem to be having an allergic reaction to something (either the glue or the oil in the glue). My forehead and eyes swell up with hives. The reaction was initially treated with some strong steroid which did take the swelling down, but screwd my body up so bad. I figured out on my own that Flonase controlled the swelling. I still have itching, burning, low energy,dizziness, etc.. but at least I can function in public! No more steroids for me! The doctor isn't convinced that the glue is the problem. I have never shown any reaction to iodine or poppyseeds, so I dont think it is the oil.
I was wondering if anyone else has had a reaction to the glue? Where should I go from here? Should I seek out an allergy specialist? Doc wants me to wait 3 months to see if I am still reacting then. I don't love this plan : )
I am 2 months post embolization and still do not have any answers. But I think I might be closer! First of all, everyone must learn from my mistake. If you are having weird problems after an embo, find the correct doctor to handle the problem...ASAP. My neurointerventional radiologist was kind of handing the problem, but not really. I just sat around suffering! Around week 7 I finally got so fed up with living on the couch that I made appointments with my primary care doctor and found the best allergy/immunology doctor I could find. The primary care was able to inform me that I was experiencing nerve pain and gave me Gabapentin so I could sleep. He also ran labs that showed I was having some sort of immune response to an allergen (Duhh)!
The allergy guy listened to my story and said I don’t think you are allergic to the glue, instead he zeroed in on mast cells. Apparently some people have a sort of immune stress reaction that causes them to over produce mast cells. This can cause swelling, hives, nausea, stomach pain, etc… He drew more blood and ordered different labs. I do not have the results from that round yet. But he put me on a mast cell inhibitor and I feel better! Or maybe I just feel better because I have now slept for two weeks thanks to the gabapentin?!? Can’t wait to get the blood results back. Nothing can happen fast enough when you feel like you are going insane!
I will continue to tell the story as it unfolds in case anyone has a similar problem in the future.
The labs for tryptase and others came back negative so the allergist doesn’t think the mast cell reaction is anything chronic. He upped the mast cell blocker (cromolyn sodium) dosage to 10 ampules a day. My energy levels returned to normal after 4 days on the medicine. I wish that I knew if it was because of the medicine which costs about $80 a week, or if I just recovered on my own. The timing seems very coincidental, so for now I will keep paying for the drug. All of the burning, itching, dizziness in my head is still there, but at least my life is back to normal after 9 weeks.
I realized that the allergy doctor didn’t say I wasn’t allergic to the glue, more that he didn’t think that allergy was causing most of the symptoms. He was willing to do a skin test with the glue, but I wasn’t able to get a sample of it for him to work with. It was around week 6 that I decided that the glue had to go. The allergy dr. made me rethink that for a while because he is concerned that another surgery will just make my symptoms worse. I think that getting the glue out will solve all of the problems. The surgeon and primary care doctors say take the glue out. So I decided to go for surgery.
And finally the proof! How can any of the doctors deny spontaneous rejection!
Warning..this is totally disgusting! Don’t read if you are squeamish. One morning during week 11 post embo mustard yellow pasty goo came out of my head (I learned later that was the glue). My body just opened up a small hole and spit it out!!! It just kept pouring out of my head. I couldn’t believe how much goo there was. I wasn't sure where it was coming from. And then later that night more came out. Then there was a brown chunk that came out…now I knew the AVM was draining. This was more of a liquid (probably the oil they mixed with the glue). I kept tracing the different veins/arteries and pushing the stuff out of my head. It took at least 10 minutes for the flow to stop. Not what I was expecting, but on some level I was glad that it happened. Finally objective proof that my body didn't like the glue!
I guess I never mentioned that I have never been allergic to any medications in the past. This whole glue allergy was so unexpected by all!
Dr. Suen at UAMS removed as much of the glue as he could almost exactly 3 months post embolization. The surgery ended up being bigger than he had originally planned, because the glue was so spread out. I ended up with 3 separate incisions, the largest from my forehead down to my ear. When I woke up I realized that for the first time in 3 months my face, head and neck were no longer on fire. That was nice! And of course I had a flat forehead for the first time in 30 years.
Now I had to decide what to do about the allergist’s mast cell theory. Would my body go crazy from the stress of another surgery? I decided to stop taking the allegra and the fluticasone, because I have to know. Will my face swell up with hives again? (Of course my face is swollen from surgery anyway.) I decided to stay on the cromolyn because I don’t know what going cold turkey from that drug would/could do to me. My surgeon told me to just slowly wean over a week or two. I am hoping that my allergist will give me some guidance on that.
The staff at UAMS was equally as astonished by my story of the glue allergy and spontaneous rejection. Dr. Suen will be sharing my case with doctors from all over the world who are coming into town next week for a vascular abnormalities conference. I hope that my story can save someone who may be suffering!
I am anxiously marking every itch, twinge, burn in my head wondering if I will wake up with hives tomorrow….It is so hard to let my guard down after months of ups and downs. Crossing my fingers that I will be successfully weaned from all allergy drugs over the next few weeks.
Wow you have been through so much. I am glad the glue is out. But what does that mean for your Fistula? Are they going to put in coils? I had a fistula behind my left ear that had 30 artery connections and one vein connection. I had my angio and embolism Jan of 2012 and had horrible pain in my temple and both occipital lobes since the surgery. I also lost hair in the area of the occipital lobes and have itching but its not severe. I was put on Gabapentin a year prior to the fistula cause I had a massive rare stroke but they did increase it to the max after the increase in head pain after the fistula surgery. The surgeons wanted to go back in after two months but in so much pain we said no and I see the head stroke doctor at Stanford who is in charge of my case. I am glad you listened to your body even if the doctor did not I think many times they treat even us rare ones as cookie cutter treatment when we are all different. My neuro radiologist surgeon did not believe I was both allergic to shell fish and Iodine...and I said you can pull up the report from a previous MRI where a doctor said it was okay to have Iodine even though my allegist said I should not have it and I ended up in emergency.
Keep us updated and I am glad your doctor is going to share your story. Thank you for sharing your story!
Angela!
I wasn't very clear. Dr. Suen resected the AVM/Fistula and cleaned out the as much of the glue as he could reach in the one surgery. He is pretty confident that the AVM is gone and won't grow back. At least that part of the journey is over!
It is 9 days post resection and it is obvious that I am not done with the allergy/stress reaction. My face looks great, thanks to Dr. Suen's amazing skills! But my body is not very happy with me. I decided to try and cut back on the cromolyn to see what would happen....Lots of sleeping. That was a short experiment! Some of the allergy symptoms have returned, though not as bad. Dr. Suen got as much of the glue as he could reach, but he wasn’t going to go digging deep into my head. I wonder if my body will eject some more glue later. Nothing would surprise me at this point.
I don't have to take Flonase anymore. My face isn't swelling and there are no hives. I did start taking allergra again. So, I guess I get to go crawling back to my immune doc and beg forgiveness for running off to Arkansas. HELP!
I'm sorry to hear you're still dealing with the allergy, Mountain girl. I would hope that at some point the glue will become "inert" and you will stop reacting to it? I hope you feel better soon.
Hello Mountain Girl Thank goodness your Dr Suen got as much glue out as possible. I am sure your body is reacting to the removal of the glue and maybe some traveled which they told me could happen. I take Turmeric pills three times a day for inflammation. You might want to try it. I hope you feel better. I also ice my head when ever I dont feel okay.
Do you have any pain? Are they going to do another angiogram later to check your fistula?
Angela
Thanks for the holistic advice...I am someone who never took medicine and now I am on 4 daily. I hate it! But I shouldn't complain because they help. I did cartwheels when the immune doc put me on Cromolyn and I finally had energy to get through my day after 9 weeks of couch surfing!
I was never in much pain from the surgery. It was just a low grade pain that I only noticed when I tried to sleep. I never took anything stronger than advil for pain. The problem is that my body is going crazy from all of the stress of 3 surgeries/procedures in 3 months. I have nerve pain. It went away for a while, but came back this week. I am suppose to be getting better!!! arrrgggggg
There was no talk of followup of any type with regards to the AVM.
You can send him pictures every month for awhile, Mountain Girl, via email. He will respond each time. As you get further away from surgery, you can send them less frequently. If something changes or alarms you, email or call the cell phone. I still send pictures occasionally, and we are a year out from surgery now.
I am now one month out from my AVM and glue resection (4 months since the embolization). The allergy symptoms in my head are improved over presurgery levels, but not gone. I could learn to live with the headache, burning, puffy face, lightheadedness and stinging eyes, but the fatigue is cramping my style!! My surgeon expected that I would be ‘back to normal’ somewhere around the 2 week mark. Normal for me is chasing 3 kids around and training for races/triathlons 5-6 days a week, so that might have been a bit optimistic. Currently, I have to nap at least once a day (sometimes twice) to have the energy to keep my household running. Exercise is limited to taking walks. I am getting stronger, and the nerve pain has receded to a point where I do not need gabapentin.
I crawled back to the immune doc this week to beg forgiveness and ask for help. He was extremely nice and even apologized for not responding to my post-surgery emails. But I was surprised when he went in a completely different direction. The mast cell theory seemed to make sense, especially when I got worse after surgery. He is not sure a mast cell disorder is the culprit because my tryptase levels are normal. Then why does the mast cell stabilizer medicine help??? He decided to order a pneumococcal titers test.
Did I mention that I have no symptoms of pneumonia (except fatigue). My friends joke “you are the healthiest sick person we know!” I can count the number of times I have been sick in my adult life on one hand. The immune doc said some people exhibit fatigue as the only symptom. I was not convinced, but hey if he can fix me with a simple vaccine then why not try? They did a prevaccine blood test to measure my titer levels. Then they administered the pneumonia vaccine. In one month I go back to see if my titers have increased. If I feel better he won’t do the second round of blood work. I have tried to read up on this test and from the little that I can understand it seems they can also use the results to measure my overall immune system function.
There was no talk about doing anything about the glue. He did say oh, we could have tested your post surgery IGE levels to see if getting the glue out made a difference… COULD HAVE..but it is too late now. Of course I pressed him to give me an answer to the burning question…what did the spontaneous rejection mean? Am I allergic? He said ‘it doesn’t mean anything’. WHAT?!? Guess I will never have objective proof of a glue allergy. Sometimes I feel like I am crazy. Then I talk to so many people who shake their head in amazement when I tell the story….OF COURSE YOU ARE ALLERGIC!
After the follow up visit I am going to be taking a break from doctors for a while….I’ve had enough!
Time….my body just needs time and apparently a very expensive mast cell stabilizer.
Hi mountain girl, hopefully every day gets better and better. You may try taking fresh ginger in hot water with lemon(anti-inflammatory and the lemon will flush out toxins). I also eat a lot of fresh oregano, good to kill off viruses/bacteria. You are certainly not crazy - something has made your body go into overdrive and the Dr.'s may never be able to tell you why. I would also try infrared sauna again to remove toxins out of your system.
Does anybody really know what that glue does in a person's body??? Just because it's been approved doesn't mean it's ok for everybody, as you have obviously had a reaction to it.
In retrospect it was obvious that I my body was fighting right from the beginning. 12 hrs post op my blood pressure dropped to 60/28. At the time they attributed that to all of the anesthesia drugs...but I have had general anesthesia plus pain killers several other times and that didn't happen. Two days post embo I woke up with my eyes swollen shut...and it was on and on from there with a cascade of symptoms that kept on getting worse and worse. Hind sight is 20/20!!!
Good thing cases like mine are extremely RARE. I am going to report the adverse drug reaction to the FDA after the immune doc figures out what is going on. And I am trying to get one my doctors to write up a case study. (That is a long shot!).
Two months post AVM/glue resection – 5 months post embolization. I find myself straddling two worlds. Finally feeling good enough to get through a basic day of running a household and taking care of my kids, but still not back to my “super” normal. My head and body are still on fire every day. Should I assume this my new normal and just ignore my body and get on with my life? Or should I keep taking naps and monitoring every twinge wondering what crazy thing will happen next. I fully expect more glue to come shooting out in the future.
The immune doc explained why he didn’t think a glue/oil allergy was causing my symptoms. It is because all of the main blood markers they use to monitor allergic response/inflammation in the body are completely normal in my blood (except for slight increase in IGE, which he said is typical of someone with seasonal allergies). He is trying so hard to figure out what is going on and hinted that there would be a ‘plan’ coming after he gets the results from the latest round of blood work. He has taken about 20 vials of blood over the past 3 months. I have a nice long list of diseases that I don’t have, which is really nice. The blood bank called to ask if I could come in to donate, I just laughed and said my immune doc took it all.
So..at this point. I nap most days. Energy levels are good. I can work out, but pay for it later with increased orthostatic hypotension and nerve pain. It takes a few days to feel good again. So I only work out once a week. Just to stay sane! My head feels the same if not worse than it has all along.
Thanks for the update -- how puzzling, though! Keep a pain journal, if you can, and take it to appointments. You may need a pain management doc at some point. Your description almost suggests some kind of nerve damage.