Newly Diagnosed... Is surgery possible??

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Newly Diagnosed... Is surgery possible??

Postby jjgib66 » Wed Nov 29, 2017 8:06 am

Hello everyone! I'm 34 and was just diagnosed with two cavernomas in my left temporal lobe. They were found after an unexplained loss of consciousness after which I was taken to the hospital. Since then I have had several different MRI's, neuropsychological testing and and inpatient video eeg done. I have seen a neurosurgeon and several neurologists. I have been having brief starring spells where I lose a little bit of times once about June of this year. According to the doctors these are concerning for partial seizures that would be caused , in specific due to the location of my cavernomas in the left temporal lobe. I am a full time firefighter with a very active lifestyle, so as I'm sure you all have experienced, the sudden change in lifestyle has been seriously hard. I have been taken off of the Fire truck and placed working a light duty job until this gets resolved, can't drive and still have a million questions.

As for results to date. The MRI has shown the two CM's with an associated DVA. Functional MRI shows both lesions in close proximity to my speech area making it higher risk. My 5 day stay during. Keep eeg produced "non specific" results that cannot pinpoint suspected seizures being caused by one or both of my CM's. They have put me on a low dose of keppra and I feel like a zombie. I can't and won't live this way. My neurosurgeon initially thought surgery would be the best option but I haven't followed back up with him since my video eeg.

My question for you all is will he still do the surgery if they couldn't get conclusive results on video eeg? I plan on taking to him about this medication and all the side effects I'm having. I guess it's me hoping for a faster outcome that doesn't involve taking life changing medication for the rest of my life.. I just want him to get these out so I can recover and move on with a normal life.

Thank you all for any support or time. Truly glad I was able to sign up for this community.

Respectfully,

James
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Re: Newly Diagnosed... Is surgery possible??

Postby Elizabeth » Sat Dec 02, 2017 5:13 pm

Welcome, I'm sorry about your troubles.. I will be back later to write more. :)
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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Re: Newly Diagnosed... Is surgery possible??

Postby Connie Lee » Thu Dec 07, 2017 4:55 am

Hi James,
Where are you being seen? Whether or not the surgeon will suggest surgery often depends on their level of experience. Counterintuitively, the more experienced surgeons tend to operate less often - they are more strategic in their approach and recognize the limitations of surgery.

If you have two lesions, it's likely you also have a developmental venous anomaly - a dilated vein that would not be removed. This may also influence the decision-making.

One option before making a decision about surgery is to try the Barrow Neurological Institute's second opinion service. The Barrow is located in Phoenix, and they are experts in cavernoma. You can find them at https://www.barrowneuro.org/patients-fa ... d-opinion/
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Re: Newly Diagnosed... Is surgery possible??

Postby habibii_sala » Wed Dec 20, 2017 9:43 am

Hello,

I believe the answer is yes, but I am not a doctor and I've only known about my angioma for 5 months (found it in August). I have done the Angiogram procedure and said it looked "good" and EEG results came back great. I was still getting the seizures where limbs go numb momentarily but nothing life threatening. After those results came back I started to ignore symptoms hoping they were unrelated.

Eventually I came around to report my symptoms a few weeks ago as they were getting worse. Symptoms included: momentary paralysis in toes (came back half a day later) but still experienced numbness/weakness/discomfort/aches/ in limbs that lasted 4 days, and then it would alternate to another limb, tremors, seizures, etc. As a dumb 24 year old, I thought they were unrelated and was in denial about my seizures as thankfully it only lasted 10-15 seconds.

Anyway, a big reason for not reporting was because just a few months before, the tests came back with non threatening results... however I am glad to say I just hit my 2 weeks mark post surgery! :D So although I was "passing" these procedures and exams, my angioma was leaking and was "changing" and needed to be taken out immediately... and the only thing that proved it were my symptoms getting worse. I was hospitalized same day when results came back and was prepped for emergency surgery when my neurosurgeon was back in town.

Like I said, I'm not a doctor, but from my experience, I wouldn't think they rule out surgery. However, consult your neurosurgeon if it's the best option for you.
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