Hi Jackie2,

Thank you for posting on our discussion forum. I wanted to get in touch with you and let you know that we actually have a member of our Patient Support Network that was diagnosed in 2005 with a Central Neurocytoma, as well. You are welcome to visit our website to read more about his experience with his tumor. You are also welcome to call him or email him, and we would be happy to provide you with this contact information.

Click here to search our Patient Support Network database of volunteers: http://braintumor.org/Survivors/.

Please let me know if you have any other questions. We are available Monday through Friday 9-5 PST at 800 934 2873.

Take care,

Danielle
Health Information Specialist, Patient Services

Hey Jackie2,

Believe it or not, there are at least two of us here!! I discovered my CN by sheer chance -- I was a graduate student studying Neuroscience and volunteered for an MRI study as a "normal" volunteer. Three hours later, the neuroradiologist was rather sheepishly telling me that, against all odds, there was a large-ish, lumpy-ish, truffle-like mass in my left lateral ventricle. Since I was asymptomatic and in the middle of my PhD research, we opted for "watchful waiting", so I dutifully watched and waited for another two years. By that point, the aforementioned brain truffle was about 6.5cmX6cm and was peevishly close to blocking CSF flow at the ol'Foramen of Monro. I chatted with a few delightful neurosurgeons (and a few not-so-delightful neurosurgeons) and took the leap. On December 29, 2009, I had a subtotal braintrufflectomy*. Aside from some minor sensory, visual, and memory deficits, I'm feeling pretty great! At the moment, my treatment plan (for the remaining bits of tumor) is a little up in the air -- Gamma Knife? More surgery? Either way, I'm eerily excited to have connected with another person with this super-rare (lucky us, huh?) tumor!

Keep on keepin' on!!
-ultrapeanut

*not an actual neurosurgical technique... I hope!

Hi Danielle and Ultrpeanut,

So good to hear from both of you.

My niece (all of my side of family live overseas) came for a visit late spring and then I was busy e-mailing hubby's ex-girl back in high school (8th-11th) who finally get to explain to hubby (35 years later) why she had to (her Mother's order) break up with hubby when she was 17.

And my computer got a virus attack and lost all of my pass words and login information. I'm glad I had persisted and try to get on the Board after receiving an e-mail about the Forum. Because frankly, I've pretty much forgotten about this Forum. You all understand better than anyone elso how those of us with head injuries are like.

I've been active in my Her2 breast cancer support group. I've also joined HysterSisters before my hysterectomy/oophorectomy this January. Turned out (gene test) I do have a 'BRCA1 Variant of unknown significance'. A Her2support member tipped me off about the Jewish settlement in China that began more than 2500 years ago. (BRCA 1 and BRCA 2 are prevalent among Jewish people especially the ones of Ashkenazi descent.) The fact that both of my parents are from the southwest region of China - very close to Kaifeng where a a Jewish community and synagague have existed for over 2500 years, and both of my grandfathers were travelling merchants and my parents are fair-skinned, I think there's a fairly good chance that I've got some Jewish blood in me.


Ultrapeanut, congratulate on your achievement. I think people with our type of brain tumor are smart because the increased cranial pressure stimulate our brain activity. I was 'very' smart when I was young. Now with two brain surgeries (1990 and 2001 Gamma-knife) and two breast cancer surgeries and chemo, I am officially 'disabled' - plan to get a part-time online GED instructor's job with the local community college where I had worked three years as part-time reference librarian 10 years ago.

If I can remember to apply for the job ...

Just celebrated our 22nd anniversary. No children - three infertility treatment only brought me three uterine fibroids - now gone with the hysterectomy.

M&M (Jackie)

Ultrapeanut,

Lucky for you to have volunteered for the scan. Hubby's ex-girl friend (35 years ago back in high school - she just looked him up on Facebook) has a similar story finding her cancer in the small intestine ( a type of Non-Hodgkins Lympohma) when she volunteered for a scan when one of the volunteered cancelled (it was a brand new machine in the hospital where she works as a patient advocate.

Before my brain tumor was diagnosed, I was introduced to a new doctor in town by an alumni couple of National Taiwan University. The matchmaking didn't work because I was already dating my future husband. But because I knew him, I was able to call his office and saw him in two hours (after he got back from OR) I learned that he's the only person in our region that could possibly save my life. (The neurologist [of a different hospital] had told me he would not recommend anyone but Dr. Charles Shih-Cheng Chang.

How about that? I just think there's a divine guidance. Never thought about 'coming to America'. Never believed I'd married a 'gringo' and stayed. Never imagined how my life would be changed...

Yes, we are the lucky ones.

Jackie




M&M (Jackie)

Was having problem with login. Got a temporary password - haven't changed it. Two weeks ago all the information in my computer got wiped out by a Trojan virus. Now I've installed Norton anti-virus program. Hope it won't happen again.

Hey Jackie,

First a brain tumor and then a (computer) virus? What bad luck!! I hope you don't have any side-effect from the Trojan-ectomy!

I really like the idea that that increased intracranial pressure makes us smarter -- but I was worried about what that meant for me now, post-surgery. Then I reasoned that since I have so much extra room in my cranium (now that my ventricles are starting to shrink), my neurons will have so much room to stretch out and relax, thereby making them more productive. What do you think? Maybe we could publish a paper in Nature??

I got a bit of good news recently -- the official go-ahead to graduate! I will have my PhD in two days! Compared to graduate school, brain surgery was a walk in the park. Now I'm frantically looking for jobs that make use of my brand-new, pressureless brain. I still forget things every now and again (I like to blame the Keppra), but I think working will be a nice diversion from all of the "recovering" I've been doing.

So glad to hear that you're hanging in there!
UP

Congratulations! Dr. Peanut.

Good luck to you in your job search. The past 20 years I've had 9 different jobs in 3 different professions. My 'residue' tumor grew into three 'nodules' and they suddently enlarged in 1999-2000 (most likely because I was 'poisoned' in my workplace) and I had to have Gamma-knife. Then I was diagnosed with breast cancer and had to undergo chemotherapy and radiation...

'Stay busy and never get depressed' is what I've learned to maintain my 'brain power'. I've never had problems with the traditional IQ tests because my 'long-term' memory was not affected. It is the learning ability - short-term memory - that causes problems sometimes. Keep a note pad (do 'remember' to read it after you write things down , use strategies to 'lock' things into your 'long-term' memory... etc.

Hey, you know it better than me. You are a Ph.D now.

Evidently I'd signed up twice with different names. Changed my profile picture and now there are two different ones. The old one was me standing in front of our church after a 'favorite antham' performance back in 2001. Our music minister ended up passing away two years ago having retired shortly after that performance due to Parkinson's. The preacher who had officiated on our webbding back in 1988 had passed away in the early 90's - also from some kind of neurological disorder. He wasn't well at our wedding - we took his 'long' face as not being happy with the wedding party while in fact he was ill.

The new picture is at a famous restaurant by the lake. It was the first time we ate there even though we've been in the area over 22 years. There was a band performing in the open area. It's quite expensive - by our standard - but is well worth it. 2nd Niece enjoyed it and I hope she'd given my folks a good report back home.

Jackie,

Sorry I've been MIA. I took a temporary teaching job at my former high school -- I was hoping to get my feet wet before jumping back into lab work. Phew! It's exhausting! Even though I had surgery about a year ago (December 29th), my stamina is still not what it used to be. I spend my evenings and weekends napping... not a bad life!

My last MRI (late September) showed resolution of many of the post-surgical issues, like edema and csf trapping. Great news! Of course, I stupidly logged on to my hospital's online records and read the actual radiology report which said that there was a marked interval increase in the size of the residual tumor. I'm not worrying about it just yet -- could just be all of the bits and pieces wiggling around and finding their new spots in the newly spacious ventricle.

How've you been? I was just reading your updates about your other "news"... How're you feeling?

UP

Hello Jackie, my name is Abel, and I have been recently diagnosed with a CN. This has been a great shock and surprise. Over the last few days, I went from celebrating my son's birthday with dinner at the local Claim Jumper, to food poisoning, to my doctors office, to a CT scan, to a brain tumor. Tomorrow I finally get to meet with a Neurosurgeon to discuss our options. This is all new and I don't know what to expect.

Hi Abel,

First thing: You're not alone!! You've probably heard that CN is a super-rare tumor that only 0.0000x% of people suffer from. Well, the good news is that there are at least two others of us here on the NBTS board. I was diagnosed in October 2007 and had surgery in December 2009. I'm in Boston, so I had an AWESOME surgeon -- where are you located? You mentioned that you're meeting with the neurosurgeon. My suggestion is to meet with as many as you can... just to get a sense for who they are and what their take on surgical resection of a CN is. I met with at least 12 and there were a few different camps as to what the best surgical approach was -- each with their own possible surgical side effects. But... like I said, I had surgery one year ago and am living proof that brain surgery isn't rocket science
I do have one question: You said that you had an MRI and were diagnosed with the CN. Did they do a biopsy, or are they just assuming it's a CN based on imaging?

Any questions? I'm here to help!
-UP

Hello UP, thank you very much for your post. I am comforted to hear that I am not alone. I have read your posts and I am hopeful that I too might be able to someday share the news of a successful battle. A mere week ago, or shall I say a week and a day (but who's counting), my whole world changed. As I mentioned in my post to Jackie, my family and I went out to celebrate my oldest son's 25 birthday. I made the mistake of not eating a juicy steak at the Claim Jumper. I chose the chicken ceasar salad. On Monday, 1/10, I awoke to what I believed to be food poisoning. My precautionary visit to my doctor, went well with us both agreeing that when at the Jumper...eat the steak. My Dr., being a very thorough Dr., ordered a CT based on what I described to him...Vertigo, which lead up to the tossing of my cookies, without a lot of nausea. The lack of nausea lead him to request the CT. He later told me that he was saddened to have ordered the scan, but at the same time glad. One CT lead to another, which lead to the MRI, which leads me to this moment. The current assessment by a Kaiser surgeon is that it should be removed and biopsied. When the risks were described, we asked for any other possible options. We were referred to a Dr. specializing in non-surgical treatments. We will meet with him on Friday. My daughter's god-father, in Germany, is a neuro-scientist who works with a medical team. We are forwarding the images and reports to them for an opinion. We have also been able to set up an appointment with a local Dr. who is renowned in the field. For now we are waiting and wondering. Again, thank you for responding. What mixed emotions...I am both happy and sad that I am not alone.

Abelm,

If you're currently in the market for suggestions (which you didn't ask for, but I LOVE to give), you should definitely consider looking into having your surgery in Pittsburgh with Dr. Jonathan Engh. He specializes in minimally invasive surgery -- so none of that "cutting off a chunk of your skull and fishing around in there" stuff. The technique is called Neuroendoport. It's still brain surgery, but he reports that the recovery time is much shorter. Oh, and he's a really nice guy -- can't hurt to give them a call. I was going to have my surgery there -- even though I live in Boston -- but I had an MRI about three weeks before I was supposed to head down to Pittsburgh and my doctors in Boston told me that the tumor had grown substantially and I needed to have surgery ASAP. So, I can't speak from experience, but as a neuroscientist myself and someone who shopped around extensively for the "right" surgeon and "right" technique for an intraventricular mass, I can STRONGLY recommend Dr. Engh.
Of course, a lot of my best suggestions would need to be reserved for knowing a bit more about your particular situation: How big the mass is, Where the mass is, Is the mass blocking any important foramen or pressing on any eloquent structures, What your "normal" life is like, etc.

Most importantly, once you and your surgeon/oncologist/radiation oncologist/neurologist agree on a treatment plan, always keep in mind that these people really do know what they're doing. They're going to take care of you. And we (at least, the two of us here) will be here to answer your questions and keep you sane! Try (I know it's hard) to stay positive. It's hard to think of your diagnosis as good news, but consider this: If you hadn't gone in after eating your questionable chicken, you still might not know! Sure, you'd be blissfully ignorant, but you'd be a ticking time bomb. TRUST ME -- it's WAY better to know and have an active role in deciding your fate than finding out too late and just having it happen to you.

At least, that's my two cents.
Once you know more, or if you have any other questions, let me know!

-Ultrapeanut

Abelm,

On second thought: As I was reading your message, I didn't pick up on the geographical indicators. You mentioned Claim Jumper and Kaiser. Are you in California? If so, you could consider having the Neuroendoport (or similar) surgery in Santa Monica at Saint John's.

Again, not sure where you are, but just a thought!
-UP

Hello UP, thank you for your recent posts and please forgive me for not replying sooner. Well you sure do know your geographic features...kaiser and claim jumper...yes i am in southern california. One of my complications is the fact that I am a kaiser member. i am hopeful that through dr. keith black, who we will meet with on monday, 1/31, maybe we can get kaiser to outsource. now all of this is sight and discussion unseen and unheard with regard to dr. black. this past monday i did get the opinion back from my friend, uli, in lubeck, germany. the opinion was as expected...the tumor needs to be removed, and a biopsy performed to take us to the next step. though your surgery ended up being an emergency, it sounds like you had some time to prepare before the scheduled date. what was your focus in preparing. with so many unknowns, many thoughts have raced through my mind, my honey-do list has changed significantly. i do have a wife and three children, two sons, 25 and 19 and a precious little daughter who will celebrate her sixth birthday this saturday, it's a disney princess weekend. such a small world we live in. i've been to boston once, to assist my wife at a computational nuero-science meeting. she once worked for a caltech professor and organized these conferences in different parts of the country, even one in brugge, belgium. this is how we came to meet our friend in lubeck. what can i expect the recovery process to be like? UP, thank you for being there and sharing..
abelm.

Hi Abel,

Glad 'UP' has been answering your questions. I'm still having a little trouble getting around
the Forum. My breast cancer online support group Forum has automated e-mails notifing us on new postings on the 'thread' we participated.

Someone named Adam just wrote a short article in the 'story' section about his experience with Central Neurocytoma. I hope he will see our discussion here and join the discussion as well.

Central Neurocytoma is generally slow growing and once it's resected, most people live a pretty normal life. My only advice will be to stay active. I've found that our brain has 'unlimited' potential if we would just put it to work. Physical activities help improve the brain fuction (by aiding with the 'Synapses' [connections] of the neurons - NBTS has picked a very interesting name for its newsletter) and increase the release of endorphin which improves both our immune system and our mood.

ps. UltraPeanut's signature reminded me of a movie/cartoon called 'UP'. I saw it not long ago on cable TV. It's dealing with emotions resulted from the 'loss' in life. The main character lost his wife and embarked on a 'baloon' journey when he's also faced with the possibility of losing his house (He tied the baloons through the chimney and pulled the whole house 'up' with him when a 'demolition' crew knocked on his door). He flew to a grand canyon to see the beautiful waterfall that was the dream trip he and his wife had always wanted to take.

UltraPeanut,

I taught school for 3 years as a Special Education teacher. Couldn't continue my teaching career because none of the schools would renew my contract, a requirement for getting the 'permanent' teaching certificate.

All my full-time employers ended up having to pay for my cancer treatment. My tumor was found after I had worked 3 1/2 years in the local public library as a reference librarian. The community college which paid for my Gamma-knife Radiosurgery had changed my job to full-time merely 8 months before I had to have Gamma-knife radiosurgery (the three tumors suddenly doubled their sizes - mostly likely because I had been exposed to the 'tar' used for the roof repair the previous summer.)

Then we found breast cancer at the beginning and the end of my internship to become a teacher...

Watch out those students in your classroom... Kids in schools can be quite 'wild' these days.

Hello Jackie, I am so glad to hear from you. During the first days, after discovery, I was frantically searching the net for any info. that I could find and your postings popped up. Thank you very much for being strong enough to share your experience with those of us who are just getting started. As you have read, I am trying to find my way and at times feel overwhelmed by it all. I realize that my journey has just begun and that I am very fortunate to be surrounded by so much support, from my family, friends, and kind people like you and UP.

abelm

Abelm,



I lived in Thousand Oaks for a year while working at Amgen. I LOVED So.Cal. I also ate thirty pounds of burritos a week. So much guacamole! We just can't seem to get it right up here in New England. I dream of taking a vacation just to go back and enjoy the lovely, non-snowbound scenery. Ahhh, California...



Anyhow, before I get into *MY* recovery story, let me be very, very, very clear -- it is a process that is extremely variable and unique for every patient. When I was discussing recovery with the number of neurosurgeons that I visited, each one of them gave me a standard, "You'll feel back-to-normal in three weeks and be back at work in six." This was regardless of whether it was the minimally-invasive neuroendoport procedure or a full open craniotomy. I'm pretty sure this is the typical line that they give -- it sounds like a believably long amount of time without sounding like you're giving up a year to recover. It didn't quite work out that way for me... Again, my story is unique to me and *YOUR EXPERIENCE MAY VARY* but it's a good idea to give you an idea of what a real-life human being experienced so you can set up your world to accommodate any bumps in your recovery process.



Also, before I get started, please keep in mind that I am doing REALLY well now. I feel great! No headaches, no dizziness (except for when I'm too busy teaching to eat), and I'm generally grateful to be alive. So, if the story seems overwhelming or scary, just remember that I made it out the other side and am just fine! Plus, not having a giant brain tumor is WAY better than having a giant brain tumor!



(I just spent an hour writing a HUGE response, but I don't want to overwhelm you, so I'll give you a shorter response now and -- if you want -- I'll give you ALL of the details... just let me know)



My recovery was not as simple or straightforward as I had been led to expect. As I said, the party line was always “3 to 6 weeks”. Right after surgery, the first week or so, I was a total space case. I’m pretty sure it was the drugs (specifically Keppra and Decadron). I was good for nothing but sleeping… but I couldn’t sleep. I had these weird, racing dreams that I couldn’t shake. They were pretty nerve-wracking. Once I weaned off of the Decadron (which is for brain swelling -- so you’ll most likely be on it) I started to feel like a normal human being, but I still got really tired really easily. I was also SUPER emotionally labile – mood-swing central. I’m normally pretty even-keel, so when I would jump from hysterical laughter to weepiness in response to absolutely nothing, it was really off-putting. I had this problem for at least three months after surgery. When I mentioned it to my neurosurgeon, he said, “Well, you’ve got to keep in mind that we opened your skull, mucked around in your brain, and caused a lot of swelling in there. Just give it time.” After surgery, my surgeon kept me on the anti-seizure meds (Keppra) until we were sure I wasn’t having seizures… well, because my EEG looked “abnormal”, I stayed on Keppra for 9 months. It made me a really cranky, paranoid jerk. I found a new neurologist who specialized in post-surgical EEG and he took me off of the Keppra and I feel like a brand new person! Let me tell you, it was life changing!

All in all, I’d say that I felt “near normal” at 3.5- 4 months. I say “near normal” because some of my “higher order” functions – like math skills and certain memory issues – were still scrambled. Not to the point where an acquaintance would notice, but I certainly still felt out of sorts and “off”. I kept feeling that way, just plain not ready to jump back into my life, until I just took the plunge and went for it. I had to really suck up a lot of fear and trepidation, but I finally took a job teaching (a maternity leave cover for an AP Biology, so I knew it was a finite length and something I *should* be able to handle) and had to fake it for a few weeks. Before I knew it, I was back in the swing of things and living a pretty darned good life. You’ve got family, you’ve got support. You’ve got US, you’ve got support!! If your wife has any questions – which I’m absolutely sure she must – please send her our way. If you’d like to take this conversation to email so it’s less public, we can arrange that. Congratulations! You just won yourself a brand new Central Neurocytoma Support Team!!



Like I said, I’ve still got that ridiculously long original email with ALL of the gory (not really…) details of my recovery. I’ll send it your way once you’re ready. Best of luck with your neurosurgical consult! If it’d help, I can help you come up with a list of questions that you might want to ask. Just let me know!



-Ultrapeanut

Jackie,

Well, I did it! I wasn't sure I could, but I did. My temporary teaching job has ended and I managed to handle it without any major difficulties -- well, beyond the inherent difficulties in wrangling teenagers. Phew! I can't say I feel "normal" yet, but I feel a whole heck of a lot better than I did three months, six months, even nine months after surgery. It just keeps getting better. I even feel better than I did three months BEFORE surgery. No more headaches. It always strikes me as odd that I lived for SO long with horrible headaches that I just passed off as an annoyance. So, as crappy as recovery was at times (I'm looking at YOU, Keppra), I feel SO much better now that it was almost worth it. I don't mean to get all Pollyanna on you, but as far as giant brain tumors go, I think we all really lucked out with our CN!

How're you doing these days? If you're free, we could always take a trip to sunny So. Cal to help guide Abelm and his family through these rocky waters... you know, because we're authorities on the topic... not at all because it's sunny So. Cal I'm buying the burritos!!

-Ultrapeanut

I am inspired :-), and the burritos are on me. We're off to Disney.
abel

I'm not sure about the burritos... But Disney will be a good incentive. I think I'm the only person in my family that's never been to a Disney facility. And they all live overseas (in Taiwan.) And Southern Ca will be great! I've been corresponding with members of my college choir alumni group which performs regularly in Orange County. About 6, 7 of the members who have had chronic illness/cancer/major surgery had formed a support group.

My husband will have a good chuckle at this. He can hardly persuade me to get out of the house... [Blame it on the breast cancer treatment and chemobrain. ]

Jackie,

I *did* make a pretty convincing case...
We can add Disney to our plans -- I've only been once, to Disney World, when I was 3.


Abel,

I sent an email response to your home account. Let me know if you don't get it.

Hello UP, Jackie and Abel. I'm new to this forum, but not to CN. I was diagnosed in late April of 2000 and had surgery (the take a chunk of your skull off and muck around in there kind) ten days later.

I went in to see a neurologist because I had been having horrible headaches for about 9 months. I was initially told that it sounded like I had migraines, but my neurologist ordered an MRI "just to be safe." I am so fortunate that he did! My doctors were pretty surprised that I was not already experiencing neurological problems already. My tumor was pretty large and blocking the flow of CSF from my brain. I had moderate to severe hydrocephalus and was told not to wait on the surgery.

I was two months away from my 25th birthday when I was diagnosed. I remember lying in bed just thinking, over an over again that my brain, which was supposed to stay cooped up in my scull my entire life was going to be exposed to the atmosphere. I just could not get over that fact.

I'm going to skip the details of the surgery and the recovery for now - I just found this thread and had to join to say that there are now at least three members of this community who are CN survivors. I have lived a very normal, physically healthy life for the past 10 years. I did have some re-growth after about 7 years that was treated by a new neurosurgeon (my original surgeon retired a few years ago) with Cyberknife. Talk about non-invasive! That was one session, consisting of lying on a table for 90 minutes while the VERY targeted radiation was delivered.

Anyway, I feel like I'm kind of rambling now and I'm sure I could go on and on. Hang in there Abel. Things will get better. And for everyone, thank you for being here. CN is indeed a very rare type of tumor and it is nice to be reminded that none of us are alone.

-Zic

Howdy, Zic!
Glad you could join our little rag-tag troop of brainiacs here on the internet. Cyberknife, eh? Did you get the facemask or did they put the screws to you? I'm sort-of in a holding pattern for fractionated radiation myself -- 5 days a week for 6 weeks. 90 minutes of brain zapping sounds MUCH more straightforward.
If we keep getting new CNers, we might start an epidemiological coup!
-UP