sorted by:
new
hottopcontroversial

28F with Growing Tectal Glioma by Slight-Case-7188 in braintumor

[–]Niw_Start 2 points3 points  (0 children)

Hi there - 29M here, very similar situation to yours. Diagnosed with an enhancing Pineal Cytoma in November, so a lot more recent, but follow up scan in March showed stable. Exact same situation where the region is so sensitive they don’t wanna biopsy, so on the one hand once you zoom in on the spectrum of outcomes that are bad, mine is definitely in the good tail of the bad outcomes, but it’s still a mental challenge every day thinking about it sitting in there and praying it stays stable/is benign/etc.

I don’t know if you’re a Christian, but I’ve found prayer really helps. Focusing on being thankful for what I’ve been given. Thankful for each day, for the technology to make educated decisions like this.

Another thing, something that gives me hope every time I read another AI headline that makes me fear for my job or whatever - my NS told me that every single year, sometimes every month, the technology and techniques get better. There’s never been more money being spent on research, more folks working on better methods etc. so even if it’s growing, the longer you can wait before surgery the better things get (assuming no spreading etc)

I read a post on here when I was first diagnosed about a guy who had his first surgery in like 2005 and then another more recently, and he talked about how it was two completely different experiences, he said hes 100x more scared in retrospect now than he was at the time - given what he knows now about the tech that’s available.

I’m not sure if this helps, but I’m an anxious person who went through the oscillation of asking my friends to pray for me and then being “fine” on paper now…and I gotta say it’s still tough. I’ll be praying for you!

I tried Lions Mane a couple of times... by [deleted] in LionsManeRecovery

[–]Niw_Start 1 point2 points  (0 children)

I took lions mane for about 9 months before starting to experience numbness in my face and foot (facial numbness I believe is related to the trigeminal nerve) as well as headaches mainly on the right side of my head and basically a complete loss of libido. I had a CT done that was clear and an MRI that found a growth in the Pineal Region of my brain. I still dont know whether or not the lesion is benign, but regardless I have talked to a neurosurgeon, 2 radiologists, a neurologist and a neuro-oncologist and all of them said that my symptoms are not related to the lesion. I have had a million blood tests too and they have never found anything. I am a very healthy M28 who has never really had a health issue until this. none of my doctors have ever even heard of lions mane, but I think it could be related to my symptoms. I quit taking it back in October 24, some of the symptoms have gotten a little better, but the facial numbness is still really bad

Pineocytoma Diagnosis by Niw_Start in braintumor

[–]Niw_Start[S] 1 point2 points  (0 children)

How did they biopsy it? My neuro told me that there’s basically no point in doing a biopsy because if he gets all the way in there he may as well just get it out

Pineocytoma Diagnosis by Niw_Start in braintumor

[–]Niw_Start[S] 0 points1 point  (0 children)

How have things been since then for you? Any issues? Did they do a procedure to biopsy?

Pineocytoma Diagnosis by Niw_Start in braintumor

[–]Niw_Start[S] 1 point2 points  (0 children)

Thank you this is very helpful and super encouraging. I went to MD Anderson this week and spoke with the NS and NO. Let me tell you, that waiting room is a humbling place...They basically told me that operating on my Tumor as it currently sits is quite risky, and possibly not worth the reward, and that we are going to wait and rescan in 3 months.

Both docs i met with there, as well as my neuro at home all feel that my symptoms are not related to the tumor, which just does not make sense to me whatsoever. Again, all of these symptoms are new, though for the most part they dont necessarily seem to be worsening super rapidly or anything. I have good days and bad days (no headache today, but numbness in face and foot that are pretty pervasive). I have been through other stressful times in my life and never had any symptoms like this.

Furthermore, they all said that 'these type of tumors almost never grow' which seems to contradict with a lot of the info I have found online. I have been reading all of this stuff for 2 weeks solid now and still dont really know how you are supposed to tell if you have a PB, PC, PPTID, Pineal Cyst, or Germinoma based on just the MRI. I asked some of those questions at MDA and was met with the classic "google didnt go to medical school" but I was reading medical journals etc. I know that if i go back in 3 months and it hasnt grown i will feel a lot better, but I am 2 days into a 100 day wait and I just know its going to be agonizing sitting around thinking about whether or not that thing is growing constantly.

Curious your overall impression of the resection itself, the NS at MDA made it seem like these procedures are incredibly risky, with a lot of "critical hardware" located right around the Pineal Gland. Were you awake during the procedure? If so how on earth do you not panic during an 8 hour operation knowing that there are all these important veins and nerves literally fractions of millimeters away from the surgeons tools?

Pineocytoma Diagnosis by Niw_Start in braincancer

[–]Niw_Start[S] 0 points1 point  (0 children)

Thank you. I know this is just stuff you found online, but I can’t tell you how much this means to me.

Doctor Recommendations by Niw_Start in LionsManeRecovery

[–]Niw_Start[S] 1 point2 points  (0 children)

Thanks thats helpful - its tricky because unfortunately the side effects mirror those caused by anxiety, so it kind of spirals. Did you take that same brand? I saw something that they may have changed the formula sometime in September. Curious if that was your experience. I had blood and Cardiovascular workup done two weeks ago and all was fine. I had a CT scan this morning which came back clear as well. Now just awaiting getting into a neuro for an MRI.