Question: NEUROSURGEON REQUESTED please.
October 7, 2015, I saw a neurosurgeon expecting to get opinion regarding recent MRI (several since Sept,) mostly done for cervical spine issues that may need surgery. It's a very long story, starting with sharp painful headaches that took me to my doctor.
Instead, the neurosurgeon showed me that I have "an enlargement in a blood vessel at the brain stem level." I have a scheduled CT with contrast about 2 weeks away. I was so shocked that I could not think clearly to ask good questions. I had an epidural injection in the cervical area Sept 29, 2015. I told the surgeon this. He said "No more epidurals, needles in your neck nor can I operate on you. It is much too dangerous, and you could have a stroke." He also told me the enlargement was pressing on a nerve causing the electric shock type headaches, my words. He tried not to alarm me with his calm demeanor.
Obviously, it was not an emergency or he would have proceeded quickly. I should tell you my husband was a physician, but he passed in 2008. I so wish he were here so we could talk. He had neurosurgical training before he changed specialties.
I don't know how worried I should be, and I'm scared! I don't know if he's thinking aneurysm or something much less. I understand a lot depends on location. I've told you all I know about that. Please translate a bit if you can, and also suggest questions I should ask after the CT. I try to always be prepared. I've been a patient advocate for others most of my life. I'm not so good at it for myself this time.
Thank you, XXXXXXX

Thank you, Dr. Spaho. Your answer does not come as a XXXXXXX The first thing that came to my mind was AVM. It's a term I've heard my husband use. I couldn't remember the other things he said in addition though. I did research online and found that an AVM may have always been there and caused no problem.
you are correct that the surgeon found it incidentally. I can see all the reports online, but no one found this before the surgeon saw it. They only report the conditions found in my cervical spine, nothing anywhere about this. However, I have no access to the actual films, and there are many.
If I were to ask for a copy of a certain MRI film,I'm not sure what to ask for. I believe I was looking at one of the brain, but another one seemed to be the cervical spine at the very top that showed the area at the brain stem.
If you can give me some guidance here, I will try for a couple of the films. They may only give me copies, and I'm not sure how well my scanner will do. If, however, I were to receive them on a CD, how many files could I submit to you?
One of the hardest parts is the Waiting. It's been 10 days now, and I have to wait until November 2 for the test and doctors appt. I asked if CTA could be moved forward, but he said he wanted to see if medication helped symptoms, and also he wanted to be very cautious with me (via his nurse).
I was hospitalized October 2-3 for severe involuntary jerking in my right leg that spread nearly all over. Myoclonus symptoms was the term used. I had tons of labs and tests that I can see online with reports, no films. EEG was normal. Is there any specific lab test result that would help?
I did not mention the hospitalization before because it as confusing and lengthy. I have Never had anything like those symptoms before. They went on for 24 hours, stopping when valium was added to the mix. They started again the next 2 nights at home, but less severe with medication. My son stayed up with me both nights. Then they just stopped!
My sleep has been limited to 2-4 hours a night since I left the hospitalization. I may have to get use to gabapentin. The last 2 nights are better, 5-6 hours. I feel human again, but unsteady on my feet during the day. My vision is blured and I haven't stopped itching since starting gabapentin. Trust me, I'm being careful getting around with these symptoms.
You have been Very Helpful. You've confirmed my suspicions so far. I know to follow your suggestions. I've never had high BP, in fact low is normal for me. Right now normal for me is about 125/82 and it is usually 90/ 60. I can check it at home if needed. I hadn't thought of it as I purchased a good tester a few months ago while helping a friend at home who has cancer. Sorry, TMI.
It is Saturday morning here. I know it is late there. I will be patient and wait for any reply from you. I appreciate your sharing your thoughts with me. Please let me know about the MRI film questions if you can. Thank you again.
XXXXXXX

Hello and thank you. I will see what I can do on Monday.

I could send you the reports now, but they say NOTHING at all about what the neurosurgeon saw. Seems everyone missed it, including my neurologist.
XXXXXXX

Hello Dr. Spaho,

It's now after 3:00 a.m. here, but I think I accomplished getting the MRIs into my new Google drive. Here is the link:

https://drive.google.com/file/d/0B6yBN4smRuuiZkFvcmFJS2hSOUE/view?usp=sharing

BUT I had to use a program I downloaded in order to get them into the file. It's called:

http://dicomviewer.booogle.net/

I'm hopeful you will be able to see them as this program may be necessary. I don't know...

There are a ton of films, and I hope it not to difficult for you to get to them.

Thank you, XXXXXXX

I had lots uploaded, but they disappeared. Maybe too large.

I may have a different location to put them. Should know by tomorrow. I haven't heard from my website friend yet. I really want you to see some at least!

Thank you.

Hello Dr. Spaho,

This has been a challenge for me. The best I have been able to do is printscreen 4 files (2 pages). They are jpg files. I also have them as bmp if that will work better. I can upload those if you want.

http://www.stclair63.com/testsmri.html/mritest1.jpg

http://www.stclair63.com/testsmri.html/mritest2.jpg

I discovered when I uploaded a couple of DICOM files to this site they are huge, and your only choice will be to download them. I didn't think you would want to do that, and I don't know what particular views will actually be helpful.
Let me know how I can help you. I will stop trying more until I hear from you. If there is another file type that is better, just tell me. I'm limited on the types of extensions I can use.

Thank you. I look forward to hearing from you when you have the time.
XXXXXXX
Hello again,
I finally figured out what I thought was just a cervical spine MRI was really a cervical spine with contrast done on the same day. They concern me. It's nearly 1:00a.m. here, and I'm very tired. I print screened them onto a Word .doc file for now. These may well be the films the neurosurgeon was showing me that day in his office, not positive.

I will convert them after I hear from you after I've tried to get some sleep soon. I haven't slept more than a few hours at night since coming home from hospital 3 weeks ago. I'm not functioning at my best. I go to sleep but awake in a few hours.
Thanks. XXXXXXX
Hello Dr. Spaho,

I hope this link will be helpful to you. I had to set it to Public, but I had no other choice. It's hard to be anonymous on this site! It appears that one can zoom and that's a plus.

https://plus.google.com/collection/kc_qFB

Hoping it works for you, and Thank you for trying to help me.
XXXXXXX

Dear Dr. Spaho,

(My response to you did not come through on the website so they told me to write to you here.)
I will try to recall my response to you again.)
I had guessed it was possibly an aneurysm. I understand that further studies are needed. Being married to a doctor for so many years, also being involved in his many personal medical issues, I do a lot of research. It's just who I am. I always want to be prepared to ask good questions of a doctor when possible. I want to know everything I possibly can so I can deal with whatever comes next. My appointment for the CT w contrast is November 2nd.
*Can you tell me where the problem is in relation to other landmarks, for example, Circle of Willis or inferior cerebral arteries if you are comfortable doing this. I would really appreciate knowing.
I assume you saw the files at both sites (www.stclair63.com and the ones at Google). I will try my best to stop pestering you again.
Thank you very much, XXXXXXX