I was recently diagnosed with a cerebral AVM on my left temporal lobe after a massive seizure sent me to the emergency room and an eventual MRI found the defect.
Rewind two years prior, and it turns out I was having "mini" seizures quite frequently. They began with a tingling sensation down my right side that would turn to numbness, lasting only a minute at most. However, as the months went by, these episodes started happening every time I exercised and the tingling/numbness became more pronounced. Eventually, I would say over the last 6 months, the tingling became painful and my speech became impacted to where I could not talk during an episode. Ironically, I went to my general practitioner the morning of my major seizure to discuss these episodes and express concern that something wasn't right.
Now that I know what it is, I would love to hear from those of you who experienced similar symptoms before finding out that a cerebral AVM was the cause. Do treatment options differ based on how an AVM initially presents itself?
My neurosurgeon (who I don't meet until 4/30/14) says that you don't always have to do surgery to treat an AVM. While I am sure he said that to make me feel hopeful, I want this thing out. I don't want to just sit back and monitor it over time. I don't want to never be able to drive or remain on anti-seizure medication my entire life.
The knowledge of your own experience with this, especially if it is a similar experience, means the world to me. Thank you in advance for responding.
I had a variety of seizures before having a hemorrahage bleed ( which wasn't that bad ) it resulted in a stroke and more seizures and a shaking down one side. I have had an embolisation ( glueing ) of the fistula ( it's similar to an AVM ) and have a second angiogram to check if the glueing worked. The seizures and shaking are under control now - but i want to know what the result of the glueing is so am waiting for the angiogram.
I also had my AVM on my left temporal lobe. However, it was found by accident..I never had seizures or any symptoms. There are forms of radiation that can remove your AVM. If they can operate they will, but for me that wasn't possible because my AVM was far back in my brain so I had radiation. I will make you a friend so if you want any more information, please feel free to.
My son has a left temporal lobe AVM. He had no symptoms before his bleed. About 6 months later he started having seizures as you described. Tingling and numbness up and down his arm and side. Later had some speech impact.How they will treat your AVM will be determined by a lot of factors. Size, location etc. My son's is inoperable. He has had 3 embolizations and a gamma knife treatment. Waiting for results is hard and I wish they could just take it out, but that isn 't possible. Wishing you the best
Those symptoms you’re experiencing are exactly the same kind I often experience on my left side sometimes with sharp pain around the chest area. There are times I feel like my whole left side goes numb. But then again Ihad my AVM obliberated in 2011. The neuro & seizure specialist’s are wondering why. I had CT, MRI, & EEG & bloodwork done few months back and nothing was abnormal. Still to this day I have those symptoms. I did blackout twice last year & they suspected seizures are starting to come around. And I thought to myself why now because I was doing fine after my surgery. I was on Dilantin at the time but as a pre-caution for a year. Then I was taken off and did great until I blacked out last year. Now I am back on medication with Dilantin & clobazam as well, I usually experience brain fog and funny vision problems. I tried telling the family doctor to see if I can get off them and he said no. We have to follow their orders.
I hope you find some answers soon, never give up. It is your body and it trying to tell you something and your the one with the symptoms. Make your doctor understand. And the best advice I can give you is write the symptoms down on what day it happened and for how long. I do that but times I lost track. Good Luck!
The first thing to realise is that AVMs are rare or at least they are considered rare because they are only discovered in the great majority of cases when the person has a bleed. There are probably a huge number of people who have Cerebral AVMs but because they never have a problem with them they pass their whole lives without realising. You’re AVM has presented itself by causing seizures. I believe the treatment of the AVM is not so much predicated on how it presents but rather on its location and size. Some AVMs are relatively easy to operate on others carry much greater risk for classical surgery. In these cases the alternative treatment is embolisation or Gamma Knife. My daughter had both of these treatments and they are nothing to be scared of as they are relatively easy - they typically involve an overnight stay but nothing more.
If the recommendation is to have the AVM removed by surgery my strong recommendation is to ensure that the surgeon has extensive experience with AVMs - this is a very specialist part of neurosurgery and unfortunately there are many neurosurgeons who, due to the rarity of the condition, have insufficient experience - it is perfectly reasonable to ask for details. And what ever the recommendation you should always ask for a second opinion for what is a major decision. This advice also relates to embolisation which is a highly specialist procedure that not all radiologists have sufficient experience in.
Hope it all goes well . Bernard.
I was recently diagnosed with a left temporal lobe AVM. I’ve only had one episode after running a 5k. I was training to run a marathon and taking lots of stimulants an ibuprofen. I’m sure it all lead up to my episode. I’ve always thought my numbing and tingles were due to carpal tunnel on my right side. Looking back I’ve always had headaches, a bad memory, and speech problems. If I talk to fast I mix words together and slur. I don’t know if these were all signs of my AVM. My 1st neurosurgeon said my AVM is inoperable. He said there are too many risks. I’m now getting a 2nd opinion. I have 2 tests before I find out if it’s operable I have to have an angiogram and functional MRI. I’ve had an angiogram and 2 small aneurysms were found. I’m still waiting for my appt for the MRI. I also want it out but after reading about the after effects I’m having 2nd thoughts. My 2nd dr said I could do embolization which is not a curative, gamma knife with radiation, or surgery. Once I find out if it is operable I will decide my next steps.
My husband had numbness on the right side if his face and into his arm so we went to the ER. I thought he was having a stroke but it turned out to be a partial focal seizure due to an AVM in his left temporal lobe. It was diagnosed in October and he had a craniotomy in December. Before his surgery he has these seizures often, they always were numbness in his face. His AVM was just under the skull and not near the motor strip so they felt comfortable resecting it surgically. He was in the hospital for 4 days and home but not working for a month after that. He is completely fine. He has a bit of permanent numbness around the right side of his mouth but it doesn’t affect his speech and all things considered we are thrilled with the result. We saw Dr. Solomon at NY Presbyterian and he is absolutely incredible. Please feel free to ask me any questions you have…although I am not a doctor, I can pass on all of the information that was given to me. Best of luck to you…STAY STRONG!
Oh and I forgot to mention that my husband is on Keppra and Vimpat to prevent the seizures. He hasn’t had once since right after his surgery (which they are saying was due to Brain swelling) so we are hopeful that they seizures will be gone once they ween him off the meds. There is a chance, however, that he has a seizure condition and will have to be on meds for the rest of his life.
Consider yourself lucky - I had no symptoms to forewarn me of my AVM. It was located on my left occipital lobe. It hemorrhagd,I was in critical condition for several weeks. The neurosurgical team performed two onyx embolizations and removed the AVM. There was too great a risk to leave it on my brain, we wanted it OUT! No regrets. I am able to drive, work and pretty much do anything I want. My 5 year angiogram confirmed I am AVM-free. I hope you make a decision you are comfortable with.
Four months ago my boyfriend age 52 had a seizure. An MRI found the AVM on his front temporal lobe. They wanted to get the seizures under control with medication before removal. Their recommendation was radio surgery. About a week later he had a small bleed the the next week a bigger one and they decided to remove it. His was on the surface so they were able to remove it with out damaging the brain. Unfortunately the bleed caused paralysis on the right side and he could not speak. Fast forward to today. He is walking, moving his right arm and just started to move his fingers. He went from not being able to recognize or say the alphabet to today where he can do picture flash cards and has trouble forming a sentence on his own with out struggling. I know he is glad that is gone and he does not have to worry about a ticking time bomb in his head. Only after an angiogram were they able to see where it was located in order to determine the best way to treat it. You will have to take the neurosurgeons advice on how to proceed. Find one who specializes in AVM procedures.
Thanks so much Louisa. I would love to have as many friends as I can get at this point. I felt so alone until I found this site. If it is possible, is operating the preferential treatment for AVMs? You mentioned radiation. Are you referring to the Gamma Knife therapy?
I wish the best for your son. I can't imagine what this would be like for me if it was one of my own girls. How is he doing after the embolizations and gamma knife treatments?
Thank you so much Simone. I am currently on Trileptal 300 mg twice a day and Klonapin .5 mg twice a day. Since being on the meds, I haven't experienced any of the numbness or tingling symptoms again or anymore seizures, but I am scared to death they will happen again. I just want 4/30 to get here as soon as possible.
Thanks so much Bernard. I know brain surgery of any kind is risky. Whatever the decision come 4/30, I just want this thing out. As a general rule, I am a very anxious person. I don't know how I will be able to live a normal day-to-day life if the decision is to either take a "watch and see" approach or do anything other than get it out. But then again, I might not have a choice. I have been referred to a neurosurgeon at Emory University who is supposedly an expert at AVM treatment and surgery. But I think your idea of a second opinion is definitely smart.
Our cases sound very similar. I am curious, why did the first surgeon say your AVM was inoperable? Also, with respect to the Gamma Knife treatment, is that a curative option? I, like you, want it out. I don't want to ever experience anymore grand mal seizures and I want to be able to drive again and live a normal life. Is surgery the only curative treatment?
Thanks Nelly. Your husband's story sounds very positive and hopeful. I am on Trileptal and Klonapin but am wondering if this is best combo. I haven't had anymore numbness, tingling or seizures since starting it, but I still have so long to wait until my surgical consult with Dr. Barrow at Emory University. A lot can happen in 5 weeks...
Deb, It sounds like your boyfriend is making great strides and I wish him the best in continued recovery. Was he taking meds to control the seizures before the bleed happened? What were the symptoms of the bleed?
Jess
They did put me on asprin ( stupid people ) and statins before the bleed but i refused the statins and dont know if the asprin contributed to the bleed. About a week after the seizures started I had a bad argument with one of my staff on the phone ( I never usually argue ) and this raised my blood pressure ( a lot ! ) and the hemorrhage happened. (It probably would have happened anyway ) I ended up with a stroke and later had very violent seizures - which they put me on keppra ( 1000mg in the morning and 1000mg at night ) and colbazam - which I don't take too very well. Ask anything Jess -