Badges (1)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (6)

Nov 11, 2016 · Cavernoma in Stroke & Cerebrovascular Diseases

@caira, hope you are well. Did you make contact with Dr. Saber? So, my neurosurgeon has recommended against seeing an Interventional Radiologist, we are going to discuss further on my next appointment on 12/12. I have been battling an ear/swollen gland inflammation this past week, I’m now on Amoxillian and Prednisone, I get terrible headaches from the steroids but can not take anything else for inflammation.

Oct 30, 2016 · Cavernoma in Stroke & Cerebrovascular Diseases

That is the truth, no one seems to know anything about Cavernoma. When I went to ER 3 weeks ago because of burning in my head, numbness on my right foot and headache I had to tell them what I had. ER doctor actually asked me how to spell Cavernoma then admitted he Googled it. The nurse said he learned something new as he had never ever heard the name…..if anything works I will most certainly share. Keep me updated on Dr. Saber.
I hope your son is stable and does not get to many attacks. Through everything we are going through our kids/family keep us looking forward one day at a time!!!

Oct 30, 2016 · Cavernoma in Stroke & Cerebrovascular Diseases

@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.

Oct 29, 2016 · Cavernoma in Stroke & Cerebrovascular Diseases

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.

Oct 29, 2016 · Cavernoma in Stroke & Cerebrovascular Diseases

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.

Oct 28, 2016 · Cavernoma in Stroke & Cerebrovascular Diseases

Hi, has anyone been diagnosed with a Cavernoma? I had a bad hemorrhage in July, they originally diagnosed me as having a stroke then cerebral hemorrhage. I have byeen in and out of the hospital until mid September when finally being diagnosed with Cavernous Malformation or Cavernoma. Neurosurgeon says to not do anything that most likely it will go dormant but my Neurologist wants me to see a Vascular Cerebral Surgeon. If you have a Cavernoma what treatment have you received? My bleed was 3×3 now it is less than 1×1 and starting to show some calcification. I’m not on any meds, can only take Tylenol for headaches which I do get daily. I have severe anxiety now, every pain I automatically assume another bleed. If you have been through this, how long did it last?