Discussions of issues related to living with cavernous angiomas


Postby Meg1972 » Mon Apr 10, 2017 12:13 am

I was diagnosed in 1992 with one CM w/venous anomaly.
Suffered through headaches for years, it is now 2017 and I now have 7 of them.
Since 2004 my headaches have changed. I'm experiencing Throbbing,Stabbing,Searing Pain.
Almost everyday. My 1st Neurologist after he saw films, No wonder they touch it. The largest is on my L Temporal Lobe associated with my speech etc.. He prescribed Dilaudin Shots along with Promethazine for the nausea. My headaches have become worse and more intense. Used to be centered just on L side, now they are spread throughout my brain. The last Neurologist I saw said they were Migraines and suggested Botox. I refused. I get an MRI every year, they keep growing, but no major bleeds. Small ones, but even w/out the bleeds my head is killing me. My primary care physician suggested counseling because there is stress in my life.
Please tell me who doesn't have stress. I'm not getting just headaches either, I have weakness in both my Hands and Legs, I'm having trouble swallowing, I'm so tired. The noise any noise drives me crazy.
Lights, Nauseau is the worst and gag reflex. I stopped breathing a month ago, went into respiratory arrest. I have a large cm with a bleed in my Pons. I was told that this was nothing and to just get another MRI next year.
He told me this before this incident. I have an appt on the 12th. I'm so tired of being told that these are hard to live with but hey try a massage or some yoga. I can't concentrate, how are you supposed to accomplish these things. I have to have my groceries delivered because of how much it takes out of me to accomplish any of these things. I'm 44 yrs old. I had a Primary Dr. That retired in 2016, had him for 25 yrs. He was the only one wjounderstood. He did research on this etc.. I miss him, no one else gets this. It's driving me crazy, it's like I have educate them as to what this condition is and what it's doing to me. I don't know what to do, really.
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Joined: Sun Apr 09, 2017 11:45 pm

Re: Tired!!

Postby Elizabeth » Mon Apr 10, 2017 1:15 am

I'm so sorry you are having such a hard time. Sadly, the doctor incompetence you are experiencing is not unusual. :( You need to get to some experts. Where to you live? West coast, try to get a hold of Dr. Spetzler at Barrows or Dr. Steinberg at Stanford. East coast, Dr. Awad is in Chicago. I hope one of those MDs can help you. I'm sure you already know about no blood thinners, but just in case....make sure to avoid advil, aleve, aspirin, Omega oils in large doses, etc. It sounds like you are symptomatic and that pons one could be responsible for breathing problems. If you have that type of problem that's a serious emergency, call 911. I hope you get help soon.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Location: Los Angeles

Re: Tired!!

Postby q_leslie » Mon Jan 08, 2018 7:15 pm


I'm sorry you are going through so much. I feel for you. I was diagnosed with cavernous malformation at the end of 2016, and of course I was told the same thing... u can live it and just get an MRI once a yr. I'm like you want me to live with my brain bleeding and possibly going into a coma, having a stroke or death.... no thank you. I was persistent and getting this taken care of ASAP. I was able to be referred to Dr. Spetzler here in Arizona (best doc in all of Arizona and maybe southwest region) at Barrow. He is a man of few words but is straight to the point and gets the job done. He performed surgery on me Feb 2017 and has retired now July 2017. I don't get to see his replacement until next month when I have my 1 year MRI. I would say to find a doctor who is willing to care for you, and be adamant about what YOU need from him/her. You are paying the insurance bill and co pays to see these docs, make sure you demand correct treatment.
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