I am pretty new to this whole "benign" brain tumor thing. Nothing benign about anything foreign growing inside a tight space as your skull! Fortunately for me, I have yet to experience hydrocephalus - thus needing a shunt - other pressure, or seizures.

I have had what we think have been migraines for a few years, and weird tingling and vibrating in the extremeties - but MRI's and docs say "not due to tumor". But they can't figure any other reasons except "overactive nerves" also causing pain, and also nystagmus. Funny how these went away after I started taking Neurontin. A seizure med.

So anyway, March of 2009 a tiny 7mm Meningioma (they THINK) found at the base of my 4th ventricle, so very high probability of developing a block of CSF fluid at some point. March of 2010 MRI showed no definite growth, measuring at 7 - 9 mm.

Will be meeting with my N in early April so hope to get a better idea of what the radiologist means. For now its recommended I stay on Wait and Watch.

I have frontal lobe m. I will find out next friday what date the surgery will be in May. I cant belive this is it. Im still having headaches and I have what I call myself day where i am my old self and then days that are ones I am happy to get through. I try so hard to fake being ok now its ridiculous. I dont want anyone to se eor know what Im going through. I have close friends tah know but the lack of care they have given me has turend to faking my way through this. I know sounds weird but its how I am coping. I havent changed much and actually have more on the plate than I should. I just make sur eto eat right get rest and try not have a 5th fall lol. I like coming on here because I know some of you totally understand. I dont have a signif other to help so its all on ME. I call my m the little man pushing to get out of my brain. I post size after next week and what they going to do with me !

Leeann,

My non-medical opinion may surprise you. There are people who treat a brain tumor like a broken leg. In reality, a brain tumor cannot be compared to a broken leg. People do not know what to compare it to. You may hear falling off a horse or a bike, but these comparisons fail. Some of my friends were stunned; they did not know what to say. Later on, I got some apologies. It took time for them to process the information. The story I posted on the NBTS site took me a year and a half to write down. I too had to process the information. Now I look at the ignorance of brain tumors as an opportunity to increase awareness of brain tumors.

Steve

Dear TerriL,

Everyone is new once. I found swelling more of a problem than tumor size. Watch the symptoms and report them to the doctor. The Docs did not deal with my mild hydrocephalus until the second number on my blood pressure became an issue (119). Now I have a shunt. I developed a CSF leak from the brain to the sinus and the shunt needed an adjustment.

A vibration in my arm was noticed by the VNA nurse. Unlike yours, it was actually caused by being on the seizure med too long.

A lot of things masked my meningioma: my sinus problems, allergies, and they thought it was a sinus infection. I learned to track the symptoms and explain them to the doctor.

Now I have arthritis in my neck that triggers a migraine.

The MRI's are good at keeping track of a meningioma. Keep on top of things and the anxiety level will go down. As always, this is non-medical advice. See the Docs.


Steven

I know exactly how you are feeling. I told my surgeon the hardest part was trying to be strong for my kids.I have changed alot having had 2 brain surgeries. And know one can relate. I know my family are probably tired of me and my symptoms and confusion of what in the heck is going on with me.

These posts are so helpful; thanks to each of you for sharing.
My DH will have meningioma resection in less than 2 weeks.

Since we live a long way from the hospital, I need to try to arrange the house so everything will
be in place upon our return, and try to think of things ahead of our departure.

After surgery, did you:
1) find it do-able to go up and down a flight of stairs each day?
2) have to have clothing that you could button up the front, instead of t-shirts that pull on over
your head?
3) have special sensitivity to noise, vibration from the car, etc?

Thanks a lot. If there are other things that you think I can do to help him be more
comfortable or have a speedier recovery, please mention them.

P.S. My DH is also puzzled by a lack of response from others. Maybe they just don't know what
to do or say. My neighbors have been very willing to help, if I suggest specific things (like
moving something).

Mrs. NP

Thanks. The special shower seat sounds like a good idea; hadn't thought of it. The shower
head is already that type.

My husband hasn't liked the idea of moving a bed onto first floor, due to security
concerns, so we may just have to wait and see how he manages stairs post-op.

Thank you. And good luck with your balance exercises. I have started praying for you,
as well as for the others who have given me a glimpse into their struggles and victories.

Just hearing you and other post-op folks post so soon after your surgeries, is
really encouraging to me. We're trusting that my husband will feel better than
he has in years, after the initial recovery phase.

I hope that is true for each of you.

Mrs NP,

I had to sleep on the sofa for months. Permission had to be gained to go up more than 3 stairs without supervision. Nurses were strict about lifting over the head. The physical therapist had to train me to go up to the 2nd floor, she made sure the hand rails were secure, and had me install grab bars at the top of the landing. I had the Visiting Nurse Association helping me.

I had to do over the head shirts, polos, and sweaters put on from the seated position. A chair had to be behind me when I was able to shave. At first, I had to feel along counters and grab doorways. My shoes were too heavy for me when I returned from the hospital.

When I was recovering, I could not move my head too fast or the room would spin. I could not listen to fast music. My eyes had to be closed when my wife drove me to appointments--any sudden movemets made me nervous. (No, it was not her driving.) Sleep was an issue for me after the hospital as the nurses woke you up at all hours for medication, etc.

Any passageway that narrows can be an issue. The coffee table had to be moved; I tripped over it. If you have a glass one, it could present a danger. Things you are not able to change have to be grasped for support.


People do not know what to say to someone who has a brain tumor. I have a mixed bag of relatives: some supportive and some not so much. It took me a year and a half to write down the story; it may take longer for outsiders to grasp the situation.

All this depends on the location of the tumor, and a different location man not be similar to mine. As always, for medical advice, see the doc.

Steven

Thank you for your concern and inquiry. I'm still in the Surgical Waiting Room.
Surgery is going well (yesterday's Embolization was great; 95% of blood flow
to tumor successfully glued closed). Husband is stable. Tumor is coming out
as anticipated, and optic nerve proximity is not problematic!

Another hour or so until the surgeons start closing. Will post sometime later
today or soon to update.

Thanks for any and all prayers. We expect the best!

Surgery is over! 9 hours long.

Surgeon was able to remove 99% of it, although it was larger than they initially thought.
To get at it, surgeon had to fracture my husband's cheekbone, remove tumor, then reset
bone with a metal plate.

Fingers and toes wiggled upon request; he will remain on ventilator tonight.

I will see him soon in his ICU room, and tell him all is well.

Goodnight, and thanks for your concern. Tomorrow will be a fresh day.

Thanks for the update you brave and strong wife. It sure sounds like good news to me. I keep you in my prayers.

Mrs NP,

I pray for all of you. From experience, I know this is not easy. Don't hesitate to ask questions. We have been there, we understand, and can encourage you.

I did not wake up the whole first week after the surgery. My tumor was more frontal lobe. I woke up in the ICU. People had to tell me what went on, who visited, and what was going on at home. It may be useful to jot some things down for an appropriate time. You never know how helpful this may be later on. When people noted things, it encouraged me. When family and friends sent cards, letters, or called, it was valuable. Brain tumors make it hard to catch up on past events. A journal may help you as well.

For medical advice, as always, see the doc.

Steven

This information and all everyone had to say makes me calm down and feel better about this. Very good ideas. I have planne dthing sout to my dof getting his annual shots but never a shower spray deal or seat. Hummm maybe i better work MY list of what I WILL NEED now before surgery on May 19th. Ye speople are weird. I woudl haven never responed in any manner that people around me have i am too what do you seldless lol BTW anyone think WOW this tumor made me see through different eyes?

I am so glad your husband has you and yall are in my prayers for strength wisdom and paitence

I know we can edit but i went back to see what my post looked likw and wow thats teh drugs for my headache effect.

Leeann,

I am glad you did not put it off. It is a good thing to plan. I had to realize that I needed to depend on others more than in the past. A good support network of family, friends, etc going in to a surgery was important for me. Some get with the program, while others never quite get it. I have family members who after 4 years have not spoken to me about my tumor. Don't worry about who isn't there Family and friends have been there since day one. Key on those who are there for you.

Steven

This whole experience has stirred a desire in me to be more timely in sending getwell
cards to people going through surgery, etc.

Today's challenges are 1) insert mesh filter to restrict the new blood clot in his leg from
moving to his heart, lungs, or brain. Done. Huge headache afterwards, due to change
in head position and the jarring of the bed being moved into elevators, etc.

2) Cerebral spinal fluid control. On Sat. he had to have a drain installed on his head; this
has been OK most of the time, and problematic a couple of times, when the amount
of fluid drained off was too much, and caused a very sudden, very painful headache.

Because of the above problem, he has been on bedrest since last Thurs., and has to keep
his head fairly low; makes eating challenging, but we're happy he can feed himself.

He's exhausted tonight after the filter surgery, and the lack of good sleep.
Pain from the head incision is only minimal.

HE HAS RETAINED ALL BRAIN FUNCTIONS, BODY MOVEMENTS AND CONTROL, AND EVEN
HIS SENSE OF HUMOR! Thank the Lord!

Mrs NP,
I had none of this feedback when I had my tumor. Maybe that is why it is so important for me to write about it, and how I came to understand related matters.

I had some sort of drain with a pressure bandage the first week. Issues with spinal fluid made the doctors install a shunt later on to control it. My problem was with my blood pressure going up because of excess spinal fluid on the brain. Your description does not seem similar.

I got in the practice of running concerns by the docs and nursing staff. You can also run it by Mary on the patient services line 1 800 934 2873.

Having a sense of humor helps with a brain tumor. In a way, it is coping with the events.

Steven

]Anyone dealing with an inoperable meningioma? I always read about those who have had surgery, and for some reason I feel a little lost on forums and in circles of others who have brain tumors, whose treatments include those invasive surgeries. I am asymptomatic, unlike a lot of what I am reading. But yet I have had 28 days of radiation that left me more irritable, tired, and generally feeling lost. One neurologist at a large clinic even told me that I don't have a brain tumor, but a tumor in my head (not my doctor though). I just don't feel like I belong in any particular place, yet I have a tumor about the size of a golf ball sitting in my head. Is anyone else in the same place? I feel like I should have symptoms just to prove to others that it's there, and that I belong somewhere with others who have the same thing, even though I haven't had surgery. I have been fortunate to not have the experience of so many others. There is, though, such a reality adjustment in the knowledge that the tumor is there even without invasive procedures. I'm just struggling with that adjustment.

Karen,

In my non-medical opinion, there seems to be too much medical disagreement and you may need a second opinion from the docs. Run it by Mary on the Patient Services line 1 800 934 2873

I'm sorry Steve. I kind of left my post more vague than anything. It's all an adjustment for me, as opposed to an issue with my doctors. It's adjusting to the fact that this is a non-cancerous tumor, has no symptoms, shows no sign of it's existence to the world around me, and yet had to be treated. An awful lot of people have to have surgery, or other invasive procedures that I have been spared from. Mine can't be removed because of it's size and where it's located. Like I said, I'm struggling with the reality, and adjustment to going through life with this. By the way, my diagnosis was in February this year. My treatment ended 2 weeks ago. It's all still very new to me. I feel lost in a lot of ways. And I try not to sound like I'm complaining. I am very fortunate.

Karen,

The adjustments can be as difficult and perplexing as trying to explain what is going on. I found out from personal experience that a tumor just being there causes problems. The trick is noticing them when they are subtle. My big two issues were swelling and pressure: every other symptom seemed to relate to either swelling or pressure. At first, headaches were not considered a symptom; they were a symptom. Sinus pressure was a sinus infection--not a symptom, but it was a symptom. (And not a sinus infection.)

It took me years to be able to explain this stuff.

I have said to my doc many times, What can be done? Too many worry about what cannot be done. I tell my doctor: I need some options. My doctor was very proactive, and it sort of rubbed off.

Steven

[font=Comic Sans MS][/font]IN 2005 I KNEW SOMETHING WAS VERY WRONG. I WAS DIZZY---TO THE POINT OF VERTIGO, NAUSEA & TUNNEL VISION-BUT IT CAME & WENT. I STARTED HAVING PANIC ATTACKS & ANXIETY. I THOUGHT I WAS LOSING MY MIND. I TRAVELED FROM AR TO ST. LOUIS, MO. TO A NEURO-SPECIALIST. I WAS TOLD I HAD ARNOLD CHIARI MALFORMATION TYPE 0 & THERE WAS NOTHING WRONG. I WENT TO UAMS IN LITTLE ROCK, AR FOR A 2ND OPINION. I WAS AGAIN TOLD THERE WAS NOTHING UNUSUAL ON THE MRI ( & THE DR. SUGGESTED THERE WAS NO SHAME IN NEEDING TO SEEK MENTAL HELP!) I WAS INCENSED! I TRIED ONE MORE PRIVATE PRACTICE NEURO-SURGEON & HE SCHEDULED SURGERY.....JUST TO CANCEL 3 DAYS LATER & TELL ME WE WERE GOING TO "WATCH" & WAIT. I WENT ON WITH MY STRESS-FILLED LIFE, STARTED ANTIDEPRESSANTS & TOLD GOD I GUESS I MUST "LEARN TO LIVE WITH IT....WHATEVER "IT" WAS".
IN 2009 I STARTED LOSING MY HEARING. I HEARD RINGING, THEN ROARING THEN IT GOT SO BAD ON MY LEFT SIDE I THOUGHT I WAS UNDER THE HOOVER DAM. MY PCP SENT ME TO ANOTHER ENT THIS TIME ( WHO PROCEEDED TO BLOW ME OFF.....EVEN AFTER I FAILED ALL THE USUAL TESTS)...TELLING ME ACOUSTIC NEUROMAS ARE 1 IN A MILLION! BUT TO COVER HIS BUT HE SENT ME FOR ANOTHER MRI-THIS TIME WITH CONTRAST. WHEN HE CALLED ME 8 DAYS LATER I ALREADY HAD THE REPORT. I KNEW THEN THAT I HAD A 3,4 X 3.0 CM TUMOR BEHIND MY LEFT EAR. THEY WERE NOT SURE IF IT WAS AN ACOUSTIC NEUROMA OR A MENINGIOMA----BUT IT HAD TO COME OUT. IT WAS PUSHING MY BRAIN TO THE RIGHT & CAUSING ALL OF THOSE SYMPTOMS. WHAT THEY COULDN'T BELIEVE WAS THAT I DID NOT HAVE MIGRAINES, NUMBNESS IN MY FACE, LOSS OF TASTEBUDS, ETC. ALSO, WHY IT WAS NOT SEEN ON THE 2005 MRI'S BY THE 3 OTHER NEURO-SPECIALISTS....SINCE IT WAS CLEARLY VISABLE & BARELY SMALLER!! IF THEY WOULD HAVE LISTENED TO A FELLOW MEDICAL PROFESSIONAL (ME, A NURSE) AND TREATED THE PATIENT LIKE A HUMAN BEING I WOULD NOT HAVE LOST THE HEARING IN MY LEFT EAR! BUT THOSE POMPOUS DR.'S IN 2005 MISSED IT COMPLETELY. I NOW HAVE MY RESECTION SCHEDULED FOR AUGUST 10TH 2010. I AM TERRIFIED! I DO NOT DO WELL WITH ANESTHESIA & I AM A BIG GIRL! MY WEIGHT MAY BE AN ISSUE. I KNOW I WILL BE A TERRIBLE PATIENT BECAUSE I HAVE ALWAYS BEEN THE CAREGIVER & HATE TO GIVE UP CONTROL. DON'T LET ANYONE TELL YOU THAT THE MASS IN YOUR HEAD, BECAUSE YOU ARE NOT HAVING SYMPTOMS, IS OK TO STAY THERE! IT IS NOT! IT HAS TO COME OUT. WHEN I ASKED IF THEY THOUGHT THIS WAS CANCEROUS---I WAS TOLD, "UH..NO. IF IT WAS--YOU HAVE HAD IT OVER 5 YEARS. IF IT WERE CANCER--YOU WOULD BE DEAD." ALL IN MY HEAD-- MY REAREND. WHEN I GET BACK ON MY FEET AFTER THIS SURGERY I AM SUING EVERY ONE OF THE DOCTORS & THE HOSPITALS WHO TREATED ME AS IF I WAS NUTS. IT COST ME MY HEARING, VERY NEARLY MY SANITY & NOW---$$$$THOUSANDS OF DOLLARS TO CORRECT WHAT CAN BE CORRECTED. I WILL NEVER HEAR OUT OF THAT EAR AGAIN, I WILL FOREVER NOT TRUST MY SCANS & LIVE IN FEAR IT WILL COME BACK BECAUSE MENINGIOMAS CAN COME BACK. MINE IS VERY NEAR MY BRAINSTEM & I AM TOLD THEY ARE CONCERNED WITH THE LARGE BLOOD VESSEL THIS TUMOR MAY BE AROUND. GUESS WE WILL SEE. BEST OF LUCK TO YOU. YOU HAVE FOUND EXACTLY WHERE YOU NEED TO BE....HERE.....NOW MAKE SURE YOU HAVE THE RIGHT DR. & THE RIGHT DIAGNOSIS.

Donna - I wrote a long, long, even angry answer to your post. Boy, I understand what you said! But - I couldn't get it posted ~sigh~
I'll say again - I understand and hold you in my heart. Keep us aware of what's happening and how you're doing. God bless and keep you.