seeing specialist for 2nd opinion - having weird symptoms

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seeing specialist for 2nd opinion - having weird symptoms

Postby achenn » Fri Apr 21, 2017 1:40 am

I was diagnosed with a CA in my left cerebellum, as well as swollen or inflamed cerebellar tonsils, about three weeks ago. The neurologist I initially saw seemed to downplay what I considered to be a fairly severe diagnosis so I sought out an appointment with a specialist at a research hospital (Dr. Alexander at Cedars-Sinai in LA). I've had two appointments scheduled with him now, though he keeps having emergency surgeries pop up and is unavailable. (I was supposed to see him today, the appointment got pushed to this coming Monday morning.)

I had a troubling experience yesterday, I'm wondering if anyone has experienced anything similar and might know what's going on -

At work yesterday around 10:30a, I looked down and didn't recognize my limbs as my own (it was as if my hand holding a coffee cup belonged to someone else) and realized that my hands and arms, primarily on the right side, were fairly numb. My lips, face, and eyelid, also primarily on the right side, were tingling. I stood up to walk and felt disoriented, almost dizzy, but was able to walk about 50 feet and back seemingly fine. When speaking, I used the wrong words a few times (same with typing). I caught both speaking and typing errors on my own and was able to correct myself. Likewise, reading made absolutely no sense. During this time, I was confused and irritable. The whole episode lasted about an hour. For the rest of the day, I felt a pressure in my head, and a sensation I can only describe as feeling similar to what happens when you move a water bottle and the water takes a second to settle down.

Several hours later, I went to my regular therapist appointment, and her office seemed foreign to me. It took me a minute to realize that absolutely nothing had changed. I also asked her to confirm this for me. During our conversation, I relayed an event that happened last week and just as she responded, I realized that I had no idea what she was talking about or referring to (despite my having just told her everything seconds before).

I'd love to know if anyone has experienced anything remotely similar. Strongly considering a trip to the ER, but I don't have health insurance just yet so it's a delicate balance :/
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Re: seeing specialist for 2nd opinion - having weird symptom

Postby Elizabeth » Fri Apr 21, 2017 6:09 am

Welcome,
I'm sorry you are having all this scary stuff happen and have no answers. I can relate completely. It seems with this dx...its fairly common to encounter "specialists" that know little to nothing about our dx. Read the newly dx section on the main AA site...lots of good info there. And when u have time read as much of the as site as u can because u need to become ur own expert in order to advocate for yourself. Since ur in LA (I am too), you might want to see Dr. Neil Martin at UCLA. He's considered to be a "good" doctor with cavernous angiomas, although I personally didn't appreciate his bedside manner. He's smart but he was irritated with my questions and since I waited hours and hours to see him, I wanted to get all my questions answered. Anyways, your symptoms sound like they could maybe be seizure related, but I'm not sure.
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: seeing specialist for 2nd opinion - having weird symptom

Postby Elizabeth » Fri Apr 21, 2017 6:11 am

My phone doesn't let me make long posts, so here's the rest.

There's a really great doctor at UCLA for seizures, Dr. Marc Nuwer. He's my favorite doctor, check him out, he might be able to help you. I'm not sure if you have maybe had a recent bleed that is suddenly causing you all of these new symptoms. You might want to get an MRI sooner than later to check out what's going on. Hope that helps some.
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: seeing specialist for 2nd opinion - having weird symptom

Postby Michelle2000 » Thu Apr 27, 2017 7:59 pm

Achenn,

I hope you were finally able to see the doctor and get some answers to the scary symptoms you are having. Please update when you can.

Best wishes,

Michelle
16 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH, MIL, & BIL with multiples in brain and spine
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Re: seeing specialist for 2nd opinion - having weird symptom

Postby achenn » Fri Apr 28, 2017 12:40 am

Hi, sorry for the delay - I could have sworn I updated! :oops:

The specialist was wonderful (Dr. Alexander at Cedars-Sinai) and patient with answering my questions.
Interestingly, he said that my symptoms could not be explained by the CA as the CA is in a part of my brain (cerebellum) that really has nothing to do with what I was experiencing.

Regarding the CA, he said surgery wouldn't be advised at this time but it's something we'll keep an eye on. As for the symptoms, he advised further testing (spinal tap, etc.)
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Re: seeing specialist for 2nd opinion - having weird symptom

Postby MarylandCM » Fri Apr 28, 2017 5:52 pm

Hello, I am newly diagnosed with a CM, but I have experienced some of the symptoms that you noted, particularly the inability to find a word, or type a word, or an unexplainable wobbliness. I also have a lot of visual disturbances, and a blind spot. The neuro at Hopkins thinks it may be caused by Occipital Seizures, so I will be tested in June for seizure activity. As someone has already mentioned, it would probably be good to be evaluated for seizure activity since you are having some unusual symptoms not related to the area of the brain your CM is located.
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Re: seeing specialist for 2nd opinion - having weird symptom

Postby Michelle2000 » Sat Apr 29, 2017 2:57 am

I wonder. The cerebellum is linked to all other parts of the brain. Though its role in movement and balance is supreme, damage in that area can also cause executive function and other frontal lobe problems.* Doctors have a habit of telling CM patients that their symptoms aren't caused by their CMs. Perhaps neuropsych testing would shed some light. It could provide you with ways to cope, at least.

Best wishes,

Michelle

*This link describes this in easily understood language: http://neuroscience.uth.tmc.edu/s3/chapter05.html
16 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH, MIL, & BIL with multiples in brain and spine
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Re: seeing specialist for 2nd opinion - having weird symptom

Postby Elizabeth » Sat Apr 29, 2017 6:55 am

I agree with Michelle. Doctors seemed to always tell me my symptoms were not related either. I think differently. As she said, neuron psych testing could offer insight. I had mine done at UCLA and they were very thorough. I saw Dr. Panos at UCLA, I thought she was right on with identifying my remaining deficits. You might want to check with Dr. Neil martin at UCLA too. He's supposedly very good except I didn't like his bedside manner...I'm very picky. Good luck!
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: seeing specialist for 2nd opinion - having weird symptom

Postby gardengirl1975 » Tue Jun 27, 2017 4:02 pm

Hi, I have 2 cavernoma in my occipital lobe, they found them Nov 15.....well, re-found them - I'd had an mri earlier in the year, but that neurologist said "all clear! I have no idea why you've had a migraine for a straight year...here are some meds" (naproxen in heavy doses and tramadol that eventually led to a stroke like episode of numbness, inability to speak, write or read), and then the episodes just kept happening every two weeks for a few months. I've had alot of what you've experianced - it takes more concentrated effort to make my body recognize it's own parts, 3 times now I've been looking for my husband and 3 of my kids in a store and not recognized them at all. My concept of time is so off - last week feels like a year ago, last week I thought it was March not june. I have trouble talking to people - it feels weird, and that's the only way I can put it... Sometimes it happens where I get in a cycle of about every 30 seconds I suddenly don't know where I am, or what I'm doing, right as I figure it out, bam, I'm lost again. Head feels that pressure building up, and down my neck. Plus every time it happens bad, my legs go as weak as jelly - I've been fighting to keep walking for years. My new neurologist has me on vallium, which oddly helps quite a bit - seems to clear the fog.... Hope you get better, it's horrible and confusing, and unless you'very experienced it - it's hard to understand how you can not recognize where you are, who you're kids are, husband of 18 yrs. I also drink ginseng drinks from local Asia Mart - with the root in the bottle - it really helps....when I can remember to get them.....sigh.
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Re: seeing specialist for 2nd opinion - having weird symptom

Postby Tm18 » Tue Jun 27, 2017 6:44 pm

Hello. I am a new board member, recently diagnosed with a left temporal lobe cavernoma. The MRI was done due to changing migraines. I am waiting for my first neurosurgeon consult.
Over the years, I've had many of the symptoms all of you have experienced. Suspected MS was the diagnosis. But now I realize how cavernoma symptoms really mimic MS! Also been told I had TIAs, transient global amnesia, etc. Left side weakness, cupping of optic nerve, dizziness, etc etc.
Re the feeling that my limbs don't belong to me, YES, I have experienced that also. Short-lived but very disturbing. Some days are better than others. Right now I seem to be in the middle of a flare up.
Just wanted to introduce myself and respond to the limb question.
Thank you all for sharing your journey. I look forward to posting more. Strength in numbers!
Be well,
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