Cavernoma

About 4 years ago I got a excruciating headache. I've never had headaches before. I would only get a headache once every couple years. It was so bad after 2 days I went to the emergency room because it was like no headache ever. I thought my eyes were going to pop out of my head. They originally diagnosed me with a aneurism. Then they did more tests and said it was a Cavernous Malformation. I was in the hospital for 14 days at U of M in Ann Arbor, MI. My Cavernoma is in the left frontal lobe. It was only 3mm when this happened. It is now 6mm. They have sent me to Neurosurgeons, Neurologists and now pain management. The Neurosurgeon said they don't want to do surgery do to it being so deep in my brain. Neurology tried every drug imaginable and nothing worked. They put me on Oxicodone which doesn't take the pain away but makes it manageable. I have done nerve blocks which is 6ahots in my head to see if that work but it didn't. They have tried Keppra, lamitctal, god there is too many to count or remember and nothing seemed to work. Now my pain management went Opiate free and they want to put me in some drug called Suboxone but I heard it's a ugly drug and don't even want to try it. Now I am in major pain daily with no relief. I take Norco but it seems to make my stomach feel yucky. Since you can't take anything like Asperin, Alieve, Motrin or any NSAID it makes it hard to try to find something to take. I have also had anxiet due to this because you feel like your just going to hemerage it hurts so bad. A lot of people have seizures due to Cavernomas but I don't have them. Hang in there I heard about a doctor in Ann Arbor that has found a new trial drug to help the pain. When I locate his name I will share. If you hear of anything please do the same. Hopefully people like us will find relief one day.

Hello @caira. Thank you for your post. I am sorry that you are not finding any real relief from meds. I did some research online and found this on the NIH website http://www.ninds.nih.gov/disorders/cavernous_malformation/cavernous_malformation.htm. and this from Mayo's website http://www.mayoclinic.org/diseases-conditions/cavernous-malformations/basics/definition/CON-20034425. In these websites speech difficulties are mentioned as well. I am hopeful that you will find some relief as you consult with the new doctor in Ann Arbor. Please keep in touch, at Mayo Connect we want to walk with you on this journey to renewed health.

Hi @caira. I have not had seizures either, thank goodness. I have not been on any meds outside of the hospital. In the hospital they had me on Keppra, some pain med I don't even know the name. Did they advise you the cavernoma would grow over time? I'm sorry you are in so much pain, you're right without being able to take any OTC pain relievers stinks, Tylenol is all we can take. My Neurologist is trying to set me up with an Interventional Radiologist and Vascular Cerebral Surgeon in Pittsburgh, PA. He says Interventional Radiologist is supposed to be cutting edge tech especially for hard to reach cavernomas, have your doctors recommended either? Neurologist feels it should be removed but has told me I maybe as bad as I was after the bleed, my speech was non existent. I have regained about 98% of my speech. My long term memory was never affected, short term memory I am still working on but most people do not see any deficits. I am so thankful, which is why I feel like seeing about surgery is rolling the dice, not sure if I could start over again. Neurologist says there a 1 to 4% chance of rebleed, don't know how much I can depend on that. Let me know about the pain med. Once I have names I will definitely share.

Welcome to Connect, @guzzie; you've come to right place to find people with the same diagnosis to share information and experiences with you. I can only imagine how anxious you must be with a diagnosis of Cavernoma or Cavernous Malformation. I'm so glad that @caira connected with you.
Caira, it must be so frustrating that you are not finding any relief from your medication. Hopefully, the new doctor will have more to offer; please do keep us updated.

@guzzie I would also like you to meet @jeans, @bellisima, and @jc2buds, who will hopefully offer more insight as they have dealt with this condition.

guzzie, when is your next appointment with the doctor? What steps do you need to take next?

Hi @kanaazpereira, thank you for welcoming me and introducing @jeans, @bellisima and @jc2buds. I hope all of you are well.

I am waiting on my Neurologists office to set up the appointment with Interventional Radiologist and Vascular Cerebral Surgeon. I will let you all know when I do. As for right now my next MRI is scheduled for 12/12. If all looks good I should be able to return to work full time in January. I have my fingers crossed.

@guzzie they did a angiogram and said that their is 2 different kinds of Cavernoma. One is extremely bad and that one can respond to radiation. The other kind is still dangerous but it does not respond to radiation. I have the later one. They don't think radiation will work on me. Dr Saber is the name of the Neuologist that is doing studies on a drug for headaches. Here is a article I have seen. He was on a commercial for the same thing recently. https://www.google.com/url?sa=t&source=web&cd=2&ved=0ahUKEwis0qTK14HQAhXMLSYKHcBRChIQFggeMAE&url=http%3A%2F%2Fdetroit.cbslocal.com%2F2016%2F10%2F10%2Fmigraine-sufferers-sought-to-test-new-medication-in-ann-arbor%2F&usg=AFQjCNEzo5TrP-1o6MaWY_G705pMXSd0kg&sig2=6rrTsthWW-vfTwQe1d_www

Not sure if this drug will work. At this time though I'm like you I'm willing to take a chance to feel some relief.

@caira Thank you for sharing the website for the doctor in Ann Arbor and the clinical trial for the new med!

Your welcome @hopeful33250. This new med is for headaches but most of us with a Cavernoma have headaches like you can't imagine. I'm willing to try anything to lessen my daily headaches. Does anyone's headaches stay with them 24/7? I always have a headache now but it changes intensity levels. Using a pain scale from 1-10 some days I only have a 3 or 4 and some days I have a good 9 or 10. My doctors have tried triptans, anti seizure meds, nerve blocks and a hole garbage can full of different meds and nothing so far has worked. I'm willing to try anything at this point. The only thing that lessens the pain some is opiods but those aren't good for long term. My Cavernoma is in the frontal lobe in the left side of my head. When the headaches get beyond a 6 on the pain scale my left eye starts getting to feel like someone is stabbing my eye from the backside. Then it gets blurry. Sometimes I have whiteout flashes. I get dizzy a lot throughout the day also. Does anyone else get these same symptoms? @guzzie have they done a angiogram yet?

@caira If you become involved in the trial with this new med, please let us know how it works for you. I'm certainly hoping that you find some relief. Your condition sounds quite complicated and I'm sure that you are looking for relief. I certainly commend you in being proactive and trying so many different treatments. I'm a fan of U of Michigan Health System as well. I've had some excellent results as a result of consultations there.

@caira yes I do have headaches everyday. You are correct, I have never had headaches as bad and constant before this. Would say a constant 4 on pain scale, dizziness a couple of days which they try to blame on my ears, ears are clear per ENT. I take Tylenol and try to lay down. Doctors have never prescribed anything for headaches just told me no meds will work on the migraines, supposedly they are only to last one year. Same thing, stabbing pain on top of my head to behind my left eye. My Cavernoma is on left parietal. No angiogram, I am highly allergic to contrast dye, found that out having an MRA in August which was only done to check my neck for blockages, have no idea why my brain was not checked. All CT and MRI are done without contrast which are harder to read. Thanks for Dr. Saber info, I will check it out.