DeborahW, Founder
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The only true way to diagnose masto is through a bone marrow biopsy (BMB). It is not painful if it is done at a referral center by a very experienced person. Pretty much, you will only find that at the locations where the researchers are. It is imperative not to waste your time having it done at a local doctor's facility. The reason is that they will not have the highly sensitive technology to analyze it correctly, and the worst part is that they won't realize that fact. Reports have come in of people getting false readings and having great pain because they went to their local doc instead of one of the few referral centers in the country (NIH, Univ of Mi, etc). Many people may discover that their BMB is negative for masto. At that point, they are probably going to be labeled with IA (Idiopathic Anaphylaxis). This is what I have recently been diagnosed with. My BMB was normal, however, I have identical symptoms and triggers as masto and I react beautifully to the same meds that masto people take. A task force has just been formed by the American Academy of Allergy, Asthma, & Immunology. Dr. Akin is part of this task force and I believe will be researching the place of IA and other mast cell activation diseases. IA is tricky in that they don't know if the excessive histamine release is caused by mast cells, basophils, or something else. They are going to include patients just like with IA in their investigation. Either way, those patients with Masto, MCAD, or IA are all in the same boat with the same triggers and symptoms. We have great researchers working to help us, and the researchers know how to at least alleviate many of the symptoms.
Here is my description of my bone marrow biopsy (BMB) at Univ of Michigan with Dr. Akin and his team. (Dr. Akin was at this location before he moved to Boston):
Well, I arrived 15 minutes before the procedure as directed. At Univ of Mich they send you to the Cancer and Geriatrics Infusion unit for your BMB. So, I checked in there (with my husband) and had a seat to wait. Dr. Akin arrived and sat and chatted in the waiting room with us until they were ready to take me back. I can't tell you how much better that made me feel -- kind of like having your own security blanket with you! When they called my name, Dr. Akin and I walked back to a relatively small room. There 2 nurses bustled about and Dr. Akin and I had a seat and waited for Irene (the person he has do all of his patient's BMBs) to arrive.
Now, it is helpful to know that you should wear something with loose fitting pants (like a workout suit), because you don't change into a gown or anything like that. All they do is have you lie stomach down on a "bed" and they just scoot your waistband down a bit. Simple.
Before the procedure, Dr. Akin requested that they take my blood pressure to get a baseline. Mine was nice and HIGH (155/90) -- grimace! I explained that I generally have a low one, always under 117/75. But Dr. Akin laughed and said that in my case he would rather it be high than too low (for obvious anaphylactic reasons).
Irene is just as good as Dr. Akin says she is. Every step of the way, she told me what she was going to do and what to expect to feel. She was very careful to always check to make sure that the area was numb before proceeding. The first thing she did was feel around on the back of my hipbone to determine if she would use the location just off center to the left or the right. Then she sterilized it and draped a cover over everything but the small area that she would be using as the BMB site. She told me that the first thing she would do was give me a shot of lidocaine to numb the skin, and that I would feel a prick and then a burning. Yes, it was exactly like what she described. She immediately said that she would now numb the bone. I think she said that I might feel something there...but I felt nothing.
First she took the aspirate sample. I cannot tell you exactly how, because I did not look (although I could easily have seen if I wanted to). All I know is that they told me that would be the more uncomfortable part. Happily, I had no pain or discomfort at all. It seemed to take forever, but in reality, I bet that it was 5 minutes! Then it was over and she said it was time to get the biopsy. She first started touching the numbed bone lightly (with the needle I suppose), and asking me if I felt a sharp pain anywhere. Unfortunately, I actually did feel it. Bummer!! So, then she kept trying different places, searching for a place that was completely numbed by the lidocaine. She couldn't find any areas, though -- everywhere she touched I felt a tiny sharp pain. It was not enough to cause me great distress, because it was quick and then she would stop. For me, I was not too thrilled because as I was feeling this series of quick pains, I was thinking to myself that if she went ahead with it at that very moment, I would surely have excruciating pain. So, in other words, my fears started to get the best of me for a few seconds and I started to feel a bit ill. Irene makes sure, though, that you have no pain, so she immediately said that we would wait and she would give me extra lidocaine in the bone. Well, that did the job, and she was able to get the biopsy with me feeling nothing.
They all said that they got a terrific biopsy and aspirate sample, so that was good. After it was over, they put a pressure dressing on it and had me lie on my back for 10 or 15 minutes to put pressure on the location to stop any bleeding. Everyone except for Dr. Akin cleared out pretty quickly. He grabbed a chair, pulled it over and chatted with me until I could get up. Any of you who are going there for your BMB with Dr. Akin can expect the utmost compassion from him. He fully knew how apprehensive I was about this, so he stayed the whole time and walked me back out to my husband when it was all over.
Did I have any pain afterwards? Not really! That afternoon and evening I felt like you do when you have the flu and your kidneys hurt. That was all. The next day I did not feel much pain at all; just some achiness occasionally. They told me I could take extra strength Tylenol for it.
So, there are the details. It was soooooooooo much better that I had hoped for, and if I had to do it again, I wouldn't hesitate (as long as I did it with Dr. Akin). So, anyone who is having one done soon, now you know what it is like.
Hope this narrative helps some of you to not be as frightened as I was. It's a piece of cake, so don't worry! Is is extremely important to tell them if you feel anything during the bmb. If you do feel sensation that is even slightly uncomfortable, tell them you need more anesthetic. This simple act makes the difference between having a painful bmb (because it will get that way without enough anesthetic) and one like mine.
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