Brain Aneurysm Support Community

Update on my Northwestern, Dr Potts appointment

#1

Okay I’m back from Northwestern and my appointment with Dr Potts. I’ll try to be as clear as I can although my brain is trying to process everything.
All and all it was a good visit and I’m am much relieved but confused… I’m not complaining because things are good.
He looked at the CTA scan and read my neurologist notes as I linked my medical accounts.
He said “ I can’t not say this is a true aneurysm “ it is so small that it’s submilliliter and it could be an aneurysm, an infundibulum, or nothing. He agrees with me getting a new MRA without contrast in February 2020 and then a follow up with him. I asked about the 2 Acom the nurse said I have but he said it’s 1 extra small something on the Acom vessel and the other is the original thing and what sent me to my regular Nero and that was DX as a infundibulum , however Dr Potts also said “ I can say if it a aneurysm or an Infundibulum but it’s very small too and we will just leave it alone and see what it looks like in February.
The radiologist also said it’s not convincing of an aneurysm but a infundibulum.

So long story short (well not very short) is that maybe it is maybe it isn’t and we will see how it looks in February. He strongly stated “ Go live your life and forget about it , it’s of no real concern at this time”

I still have my appointment with my original neurologist on the 18th and I have question for him.
I think at this time it was irresponsible of his nurse to say you have two 2 Acom Aneurysms come back in 6 months for another scan, this goes for the doctor as well. Why would you say it’s an aneurysm if your not sure……is he sure ? Does he know more than the high ranking teaching hospital neurologist?
My scan will be at Northwestern so their team of Nero radiologist will interpreter the results.

I am so very relieved, thanks for listening and the support .

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#2

Obviously no restrictions so I can go back to working out.

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#3

@Midwestgal - glad to hear you met with Dr. Potts and now have some relief moving forward and in the meantime you can go back to working out. Hopefully, it is not an aneurysm and we will agree in faith that the MRA in Feb will confirm just that.

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#4

Great news I think…

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#5

It definitely put my mind at ease even if I do have one.
I’m almost afraid to go back to my first and even hear what he has to say. Bottom line whatever it is it’s so small that for the next six months I can go on not thinking I’m going to drop at any time.

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#6

I think cancelling with the first would be good, for me. I wouldn’t want to get riled up again and wouldn’t want to give someone the opportunity to backslide with their diagnosis. It sounds like you have a great team now, I would keep with them.

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#7

I think your right and glade you said that. …will do that tomorrow.
Really at this point there’s nothing needing to be done anyway.

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#8

Midwsetgirl,
The one thing that I have got to say you had good news, he’ A great doctor. There is one test you should take it saved my life, it’s the test if you have a blood disorder called Leidem factor 5. This is one blood test that can tell you a lot about Anny’s.
I have talked to quite a few people regarding this and I have saved 4 people from an Anny letting go. This make you blood thicker than water. If you have low blood pressure that’s a sign to be tested.
Ray

#9

The two types are heterozygous or homozygous, homozygous puts you at a very high percentage of having deep vain thrombosis.

Thanks for posting this because this would have an strong impact on someone who has both factor V genes

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#10

I got it from both parents, I have 6 blood clots when my was does they had to cut me open because I had a blood clot at the base of my brain that formed that morning.
I also have 3 clips because they were ready to pop.

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#11

I’m sure it’s been rough for you, sorry.

#12

I am so lucky, men get this very rarely. The group that I belong to there is only 3 men to 580 Women, it’s a good site run by Dr. Bussy. I will be back to my doctor in October for my semi annual check up. I watch this very closely,I lost my mother on Christmas Eve 25 years ago. I believe she saved my life because the day everything happened to me was the day my mother had her 2 anny’s pop in her head and she hung on to December 24 of that year. I don’t want to live like my mom. I also lost my Aunt, my Grandmother, and all of my Grandmothers sisters 5 of them. My mother had it bad but no one knew what it was, my mother had 3 miscarriages all in the secondary and Trimester. I was her miracle boy because I was the last try.
That’s why I am very diligent about my head. I take -plavix, and Ixerlto for my condition which I am going to- take the rest of my life.
Always make your follow up with the doctors, and I hope that you will only look at that scan and the doctor will say everything looks great and we will see you in 6 months. Good Luck and may God Bless You.
Ray

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#13

Wow how scary crazy is that…I’m so sorry for all your loss.
My grandmother on my moms side died from a pulmonary embolisms at 31, my mom was just a young kid.
Life sure is crazy…have to cherish every day that’s for sure.

#14

I had my PE 3 months before my other problems, that’s like getting shot in the chest. I was lucky to survive that one. That’s when they put a filter in my chest. That took 3 months to recover from. I was still not feeling great and that’s when I got a violent headache and the doctor found all of my problems. After a 20 hour surgery and about 8 days later I woke up. I had a major cranny 3 anny’s clipped, and a long rehab.
I will tell everyone that when you are in a coma, yes you hear everything that’s said to you, like everyone asking you to wake up but you just can’t.
I was left in a wheelchair after this surgery, but I look at this way, I am still alive and enjoying my life.
Ray

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#15

I found this, and it seems to verify that you have little to worry about:
“The main importance of an infundibulum is that it may be mistaken for a saccular (berry) aneurysm (which is rounded and has the branch at its base). Unlike an aneurysm , an infundibulum is not believed to be a risk for rupture and subarachnoid hemorrhage.”

#16

Thanks , I understood what it is. The first doctor wasn’t concerned it was the other thing he seen that sent me for a CTA and he then confirmed the very small aneurysm. Luckily when I seen Dr Potts he stated that is so small that it can’t be called a true aneurysm so I’ll go back in February/March for another scan.
All he said about the infundibulum is that he can’t say it’s that or it’s not, I think the problem is my scans weren’t done there and read by their radiologist although I did feel a little confused…that too was small 2mm.
Needless to say I’ll be back when I. Due and hopefully all remains good.
Thanks for looking it up and sharing

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#17

Hi,
It’s been a while since I’ve posted. I find it difficult to come here too often although I do lurk here and there. It’s almost if I don’t look I’m not reminded of my issues.
I do have my follow up MRA next week and an appointment with DR. Potts on March 10th. I’ve feel good except early January my left ear started ringing or more like a high pitches tone. It’s pretty much all the time and it certainly can make me crazy from time to time as well as being stressful.

I wonder if it has anything to do with an aneurysm or the possible infundibulum…maybe pressing on something?
I’m definitely anxious about the results although I feel pretty positive accept for the ear thing.

Just wanted to pop in and say hello.