Craniotomy changes noticed

Hello everyone, It will be 5 yrs this January that i had my craniotomy. I had my yearly MRI and MRA done a couple of days ago and was told that there was some changes in the frontal lobe in which i already suffer frontal lobe syndrome. My Dr. Said there is a 2mm subdural collection in the right frontal region, i asked if this is something i should bring to my neurosurgeon in NYC and she told me no she would look at it after the holidays. I told her i was not comfortable with that,and she told me im worrying too much. Needless to say she is no longer my neurologist, i refuse to be spoken like that after all i have been through. But can anyone PLEASE tell me have they ever gone or been told this and what does this mean. Im a bit scared now.
I have an appointment with a new neurologist next week.

I have a good bit of frontal lobe damage among other areas and with help from others, even here, I found work arounds. I ruptured and I’m unsure if you ruptured as well. I don’t have any answers for you though. I probably would have asked her a lot of questions, like exactly what is collecting, blood or CSF or I would have asked if this is new or did it get missed on the last set of images. I have found radiologists sometimes miss things, one time they got my images mixed up with someone else’s. I think the main thing for all of us to remember is if one of our doctors tells us something is to get clarification immediately. Knowing me, I would have inquired to which holidays, Did she mean next week or after New Years, Chanukah or Kwanza? I can be a bit anal with the need for specific answers. I would venture to guess she thought it was something that didn’t need to be dealt with right away which is why she wanted to wait a short bit to talk to your Neurosurgeon.

I hope your new neurologist is a better fit for you and supplies the answers you need.

I thank you so very much for your reply, and i should have said mine was an unrupured one, I’m sorry for that. According to last year’s pictures it was not there,and that is what got me upset, when i asked if this something new she replied yes, i got more upset and scared and then asked if this is something I should let my neurosurgeon know, that’s when she said not yet. It was her way of saying it, and knowing how nervous and upset I was that got me. I tried to ask more questions but was told we can handle this after the holidays.
Well she can handle that she lost a patient.
I feel no Dr. should ever treat me or any of us like that, they have no idea what we have mentally gone through.
Sorry, i just had to vent that.
I have been with my neurologist since my surgery she was to only do my follow-up and to keep an eye on my clipping and if any new aneurysm showed up. I now feel she has failed me.
Am i wrong for my feelings?

I copy my neurosurgeon on any test I have brain related, including routine MRIs. If I were you I would upload my info to my surgeon without worrying about anything the neurologist (new or old) has to say. I believe when it comes to aneurysms, surgeons are the best at evaluating your needs.

Well, yes, but it was the surgeon who minimised my concerns post surgery (craniotomy). He told me that '…yes, there was an issue but just go home and don’t worry about it…" DON’T WORRY??? OMG. TOO LATE, I was already a ball of stress, to have him minimise it all only served to increase it all 10 fold.

I have found that some of these medicos maybe great with a knife/scalpel, but they often have the human-to-human skills of a common house brick ie None. A common theory within the medical realm is the less the patient knows, the less stressed the patient will be. For me personally this couldn’t be further from reality. I need to know the what, the who, the when and the why of it all. When I don’t have that info my mind fills in the blanks. Those blanks are often filled with the ‘worst case scenarios’. So for them to simply minimise and tell me ‘You worry too much…’ DAMN RIGHT I’M WORRIED. THIS IS ABOUT ME, NOT THEM.

Here’s what I did. I didn’t just get a 2nd opinion. I got a 2nd, a 3rd, a 4th… I wanted every other view, every other opinion. If someone had an option, I wanted to know. I was already very symptomatic; the symptoms had started out minimally and had progressed. Those symptoms plus the craniotomy had sent my system haywire and they were now telling me to wait??? NO WAY. Some dr’s just referred me back to the original surgeon, but some made some valid points along the way that I could then investigate further. Upon returning to the original surgeon, I quizzed him regarding those ‘valid points’. Let’s just say he didn’t like my questions, but again, this was about me and I NEEDED to know. What were my options? Why is one option better/worse than another?

My advice: Exhaust every avenue open to you. Yes, stress can play a major role, but minimising your concerns does not help in minimising your stresses. Giving you the answers you seek, now, that may help, but I needed to be firm in my convictions that I NEEDED to know to e.v.e.n.t.u.a.l.l.y get those answers.

Hope it helps
Merl from the Modsupport Team

I want to thank you all for reaching out and telling me not only your story but your advice, you have no idea how much it means knowing that I’m not alone in all this. This has been the best support group ever. Thank you from the bottom of my heart.
I wish you all a very Blessed Merry Christmas and a Happy New Year.

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In my opinion, our feelings are never wrong. They are what makes us, well us. I don’t think any doctor should brush us off. The way in which we respond to our feelings can be a little off, especially after brain surgery, Neurologists need to know that.

My current Neurologist NP tried this year I needed to see him after having a big issue with some trades people and couldn’t get it back together again. Despite following my rules I just couldn’t, even our wonderful handyman told me not to come back until I was ok, he would handle them all. Everything my rupture gave me had come back full force. I may have exploded through my portal but I did get in to see him. And he promised numerous times to never do that to me again.

With reading more of your story, I certainly can understand why you’re seeing a new neurologist. She should have set enough time to discuss what was going on. My current one seems to give me an hour! I had one for several years that in the middle of it, he had me for 15 minutes and I told him he wasn’t my PCP that’s only allowed a few minutes he was a specialist and by goodness if his office was billing for 60 minutes he better be seeing me for 45-50. They have to count entering their dictation so that makes up the difference. I really liked him too :joy:. My guess is they overbooked her, she had something she wanted to attend or another patient took more time than she could handle with other patients. Something happened that she couldn’t give you the time you deserved if she has a history of giving you enough time in the past. I know part of my hour with Sergey is for him to review my chart before he comes in whilst the CMA is going over all the stuff they do -weight, BP med updates…I like Sergey as he connects with me as a person and not just a patient if that makes sense. I hope your new neurologist does the same.

The reason I asked if you had ruptured is only because rupturing can give us different anomalies that need to be watched but may not effect our daily lives.

I agree with @Judi 100%. Either send the results directly to your neurosurgeon or call the radiology department and have them sent. We really need to make sure we are our own advocates and we need to follow through that our medical providers are receiving what they need. I make sure my PCP is included in everything as she is my gatekeeper.

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Many years ago, when I was getting second opinions about a suspected second aneurysm, the second neurosurgeon that I saw toldl me not to worry about my annie and to check it again in 5 years! You can imagine that I didn’t accept that. But, one thing he showed me that has never left my mind was a scan of one of his patients whose arteries were spasming from her stress.

I got several more opinions (a total of six). Three said operate and three said don’t. The neurosurgeon who had one of the most stellar reputations in the country brought together a team of radiologists to meet with me and my husband. What they had found was that I had three unruptured annies and not just one. Very scary! Because clipping was the only option at that time, and the aneurysms were small, they recommended that I “watch and wait” and not have surgery if I was willing to forego getting pregnant. My own neurosurgeon agreed with this proposal and my husband and I made that choice. That was 45 years ago. I had a scan last year and they found once again that there has been no change in the sizes of my annies so, for me, not having surgery was the right decision. I also took to heart to try not to worry too much for no one knows what tomorrow will bring.

As others have written, it is important that you have a doctor who has good communication skills and who can show empathy. I once asked a neurosurgeon how he decided which patient with unruptured annies to operate on. His response was the ones who were the most anxious. It sounded coarse but since at that time I was already a 40+ year survivor, I could brush it off. He also added that the only thing he could attribute my experience to was “the grace of God”.

I wish you all the best in finding a neurologist that you are comfortable with and who can give you good guidance.

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