Just a question

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Just a question

Postby michael42589 » Thu Feb 28, 2019 6:05 am

To ask my question, I should probably tell the issue I'm having.

I've been suffering with this condition since I was 15, had my first surgery to remove a 3x5x5cm angioma from the right temporal lobe which has left a nice pocket of fluid. Also been suffering from both simple partial and grand mal seizures. Since I was 14. My seizures, if I can explain them, they tend to cause a deja vu feeling prior to the episode. During the episode I loose my ability to be coherent, triggers a fight or flight sensation, causes my heart to go into supraventricular tachycardia, and drool. Ive also hallucinated about people helping me while I have my episode, but no ones there, to saying off the wall things. Told a buddy one time snakes were falling from the ceiling and the jeffersons were out to get me. Thats just the simple partial, the grand mals happen when im asleep. Its not fun waking up to paramedics at 6am while you're on a strecther. Just recently they have found several angiomas spread throughout my brain. I dont know how many several are, they wont give me a number. But I do know that there is a 1.6cm angioma that was just 1cm 6 months ago. Its located in the right frontal subcortical white matter, with interval hemorrhage into the lesion. I've had 4 strange episodes recently where it feels like someone is wrapping a towel around my head, tight but not to tight, then my face and head start to tingle, and then the left side of my body goes numb and tingly. This lasts for about 2 minutes and its difficult to get someone because when I try to walk my left leg isnt working. Now I have asked my neurologist if this episodes could be TIA's or just smaller strokes do to the bleeding. She doesnt want to hear it and says no its probably just a different type of seizure, which I guess could be true but Ive been dealing with seizures all my life. Im now almost 30 why would they change now? This is what Ive was told 6 months ago when it was discovered it was growing, that I have 2 options. They can go in and remove it, which could leave me weaker or paralyzed on the left side of my body or we can monitor it. But if it were to bleed Id be at a high risk of a stroke that would cause the same effects if I went with the surgery or death. After telling my neurosurgeon I wanted to wait and make arrangements with the family he decided himself to go ahead and wait and see. Well that wait and see didnt turn out so well. Any who, my question to y'all would be based off of the 4 episodes I explained is it possible that they could indeed be strokes without lasting affects? Ive heard of people having strokes, hell my dad has had 4, that leave people messed up. Should I see a different neurologist? Also, could the previous surgery be why I get angry easily? Like I'll just snap on someone for no reason and some days ill just be angry for no reason. Ill wake up angry and just be like "why am I angry right now?" Id ask these questions to my doctors but they cant give me answers, they just look at me like im crazy. I bet they arent even sure im telling the truth because the only EEG ive had a seizure on was back in 2004 and all the other EEG's since then they cant seem to find anything. I dont know I just want answers because im in an emotional state, where im scared, angry, and depressed. Thank you to who ever reads this.
michael42589
 
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Joined: Thu Feb 28, 2019 5:29 am

Re: Just a question

Postby Elizabeth » Thu Feb 28, 2019 10:13 pm

Welcome,

I'm so sorry you ate experiencing this...you and lots of people like you are why we need a cure that is not brain surgery. Yes, I'm a fan of getting more opinions until you feel comfortable with your plan. The doctors really need to listen to you and give you valuable feedback not blow you off. The anger??? I'm not sure..I have a few possible ideas. Are you on anti seizure medication...specifically keppra? Keppra rage is a thing and if its making you angry you should try a different medication under the care of your doctor. Or..."frontal" area is known to be an emotion area. If the frontal angiomas is bleeding it might be causing the anger. Or, unlikely, the whole situation is just draining, exhausting, and irritating...while that is totally possible I'm guessing its one or both of the first possibilities. Get more opinions and try to take good care of yourself. Know you are not alone. This is hard. I hope it gets easier!
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
Elizabeth
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Location: Los Angeles

Re: Just a question

Postby michael42589 » Fri Mar 01, 2019 6:39 am

Elizabeth wrote:Welcome,

I'm so sorry you ate experiencing this...you and lots of people like you are why we need a cure that is not brain surgery. Yes, I'm a fan of getting more opinions until you feel comfortable with your plan. The doctors really need to listen to you and give you valuable feedback not blow you off. The anger??? I'm not sure..I have a few possible ideas. Are you on anti seizure medication...specifically keppra? Keppra rage is a thing and if its making you angry you should try a different medication under the care of your doctor. Or..."frontal" area is known to be an emotion area. If the frontal angiomas is bleeding it might be causing the anger. Or, unlikely, the whole situation is just draining, exhausting, and irritating...while that is totally possible I'm guessing its one or both of the first possibilities. Get more opinions and try to take good care of yourself. Know you are not alone. This is hard. I hope it gets easier!


I've been dealing with the emotional issues dating back to the first surgery. If you look at the MRI of where they removed the huge mass, it looks like a crater or a big empty space in my brain. As far as meds go, I used to take keppra but it wasnt working to controlling my seizures. Its almost like my body got used to the medicine. Ive tried lyrica but it just increased the suicidal thoughts. Im now taking lamictal and for the most part its doing its job but I still had those 4 episodes on it, which brings me to thinking that they weren't seizures but actually smaller strokes. Have you heard anything about certain strokes lasting only a minute or 2 without any lasting affects? Im going to see a second neurologist to get a second opinion, it seems Im not having too much luck in the neuro field. If I could go pack to my first neurologist at Vanderbilt thatd be cool, he was the best I've ever had. I had one guy tell me that he didnt see any angiomas and then about 2 months later I seen a different neurologist who said she sees 3. So I thought cool this chick knows what shes doing. Wrong I started telling her about my anger issues and she just blows it off, I feel like they will understand if I were to release my rage in front of them. Thank you for the reply and im glad I found a forum that didnt cost money to ask these questions. Ill try to take care of myself, although not like I can tell these to go away lol
michael42589
 
Posts: 5
Joined: Thu Feb 28, 2019 5:29 am

Re: Just a question

Postby Elizabeth » Sun Mar 03, 2019 4:14 pm

I'm sorry. I'm not sure. I have a "hole" in my brain too...I get it. If I was you I'd keep looking for a doctor. In my experience the surgeons were better than the neurologists. Where are you, maybe try to consult with some of the known experts because the regular non experts were always useless in my situation??..I ended up with 10 neurologists...none of them very good and some really bad. Strokes that font last long or leave long term symptoms are called TIAs....possible, but it doesn't sound exactly like a match. You need an expert. The anger could be from the damage to the area, maybe a brain injury therapist could help you figure out the emotional parts better. I'm not sure, sorry...I'd be looking for more opinions hoping someone has better insight. Best wishes!!!
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
Elizabeth
Moderator
 
Posts: 1685
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles


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