Comments for Sortroom.net

Comment on Meningioma Surgery: A Flickr Story by Shahidah Abdur-Rahim

Shahidah Abdur-Rahim — Wed, 03 Aug 2011 22:38:10 +0000

I’m glad to have come across this site. I am 57 years old and I too had a meningioma that my practitioner said was 3 cms, and about 7 to 8 years old. When looking at the image on the surgeons’ computer screen, it looked like a golf ball behind my right eye. One year later, one of my surgeons told me that it was the size of a grapefruit and that they didn’t remove all of it. They will keep an eye on it and I may need radiation if there is any change, I pray to the Almighty God that there is no change when I return to Lahey Clinic in Burlington, Ma on September 30th, 2011.
Before diagnosis, I was getting a chemical smell about once a month that lasted about 20-30 seconds and made me feel ill throughout the episodes. My body would go hot from my head to my feet. After the 20-30 seconds, there was no smell at all and I felt normal again. After changing my doctor and telling her about the smells, she ordered an MRI that revealed the tumor. My first question to her was, “Am I going to die?”. She assured me that I will not; but have to travel to Lahey as soon as possible to have it removed by the top neosurgeon at Lahey, Dr. Carlos David. She explained the procedure to me and I felt very comfortable about it. When going in to surgery, I prayed so hard that I couldn’t pray any more. I know now that God spared my life. A surgery that was to take 2 hours took about 5 hours. My tumor was wrapped around an artery and was dangerous to touch. I could have been left paralyzed and/or blind in my right eye. After surgery I went to a rehabilitation facility and then home to Bermuda where I was not getting better. I was extremely tired whenever I stood up and had to lie in bed. I couldn’t keep my right eye open. Friends assisted me. One day during a visit from a friend, she said that I was talking strangely and took me to the hospital. After a CAT scan, I was rushed by Air Ambulance back to Lahey for another surgery to remove an infection in the site. I thought I may have infected it by touching it, they assured me that it was an infection that occurred during surgery. After rehabilitation, was sent home on my insistence and returned to work as an office administrator. There were some challenges, like loss of short-term memory and not being able to concentrate as I used to. It was very frustrating being felt incompetent for the first time in my employment career. Like other victims of a meningioma removal, I too, would sway when walking (especially when tired). Whenever I tripped, I would fall completely down because I was unable to break my falls. I was constantly having meltdowns in my office because of being frustrated and intolerant of noises around me. I didn’t feel as if the staff understood what I had been through. My boyfriend left me because he couldn’t handle my illness. He felt more like he was looking after me and the romance went out of the relationship. Now, I am doing fine, I have to take 3 Dilantin capsules at bedtime or I may have a seizure in the night.
On a visit to a neosurgeon who visited Bermuda, he told me that the chemical smells were seizures. I suffer from headaches more now than I did before. Above my right eye and the incision site is still numb from the surgeries February 9th and March 28th, 2010. I returned to work fulltime for 1 year and then quit under doctor’s order. All is well now, I can play with my grandkids and entertain my friends again. I’m very careful when I walk and have to remember to take my Dilantin at night. I’m learning to feel less of a victim and more like a victor. Praise God! If I can do it, anyone can.

Comment on Meningioma Surgery: A Flickr Story by Kayla

Kayla — Wed, 01 Jun 2011 17:26:17 +0000

I was just reading comments and read the neurosurgeon from Brazil’s comment. I had a meningioma removed 7 yrs ago. It was in the middle of my head the size of a large plum. Your right, no cancer, BUT to say it’s over and no worries is wrong. I believe that the surgeons only know their side! I have severe headaches now and seizures from the scarring. My life was spared and I am forever grateful to Jesus and the surgeon who saved my life. But was in no way prepared for the lasting side effects. I can’t hardly lay my head on the pillow at night. I have deep ridges in the back of my head and it is tender. I have to see a pain management dr too for treatments. I also have to go back to my surgeon every year to see if it is growing back. SO, to say no worries? I have to disagree. I feel for the patient and wish more information was out there for the post surgical symptoms.

Comment on Meningioma Surgery: A Flickr Story by Carmen

Carmen — Wed, 13 Apr 2011 21:54:23 +0000

thank you for the site and posting the pics. . . I found them helpful. I had a tumor removed the size of a lemon on February 23, 2011. The important thing is that the tumor was benign and with God’s power and grace I hope to recover completely. Even though, I have been improving slowly as I developed fluid and inflammation in the brain. I get tired very easily which sometimes frustrates me. The Dr. said this wasn’t a painful surgery, but I am still taking pain killer as I get terrible headaches and are very weak. I become sensitive to all kinds of sounds and noticed that when I am tired my walk gets unsteady and I tend to go sideways. My head feels numb and sensitive to the touch. When I spoke with the Dr. he answer was “you had brain surgery and your skull was open”. I guess I thought I will be feeling a lot better by now and not being able to drive or write very well is bothering me very much. I am suppose to go back to work on May 23, 2011, but I don’t think I am as sharp as I was and even writing this comment is making me tired. I guess I need to be patient and pray that I get better in the few coming weeks. Reading some of this comments made me feel better. Thank you!!!

Comment on Have cars got really big? by David

David — Sat, 05 Mar 2011 01:29:06 +0000

Actually, that is a Rolls Royce Phantom

Comment on Have cars got really big? by David

David — Sat, 05 Mar 2011 01:25:58 +0000

Christina is a small lady, but her white Bentley is also a very big car.

Comment on AT&T isn’t losing its monopoly over Apple’s iPhone by Masseur

Masseur — Wed, 05 Jan 2011 21:49:46 +0000

I’m really disappointed with the way apple is handling this, it’s time to open the iphone to other competitors, att sucks.

Comment on Meningioma Surgery: A Flickr Story by LuAnn McKee

LuAnn McKee — Fri, 11 Jun 2010 18:29:23 +0000

I am presently recovering from having my meningioma removed about a week ago. The surgery was done in Allentown at Lehigh Valley Health Network by Dr. Li. The neuro science ICU group was the BEST group of people I have ever met in my entire life….competent, caring and basically got me through this entire ordeal and I am doing well. If anyone wants to chat, my email is djmckee33@rcn.com.

Comment on Meningioma Surgery: A Flickr Story by Nicos

Nicos — Sat, 20 Mar 2010 23:31:19 +0000

Hi everybody!
I am glad I am the only meningioma warrior! However rather rare to have had atypical parasagital meningioma operated 7 years ago. That one was 4x4x5 cm and unfortunately it reoccurred three years ago. It was a personal decision not to re-operate but undergo cyberknife when the tumor was still less than 2 cm. Since than it shrank. The last MRI showed a possible slight increase. I am now observing it and thinking what my next step will be: another cyberknife or stereotactic fractionated radiotherapy.
Anyway I think I am starting to get used to the idea I will live with this, I will fight against it and maybe one day die with it… but I am decided not to die from it! Best health to all.

Comment on Meningioma Surgery: A Flickr Story by S. Reynolds

S. Reynolds — Sat, 20 Mar 2010 02:41:54 +0000

My husband had a “sinus infection” last year that actually was a meningioma. He was med evac’d to seattle and had emergency surgery. He had had awful headaches (he is not normally headache prone) excruciating and he would get pale and sweaty, but they would wax and wane. He was having a little trouble with words.

His tumor was on the left front side, about the size of a ping pong ball. The surgery was long (they had to rebuild his sinus, scrape some bad bone, etc). However, recovery, all things considered, was a breeze. He was very ill from the morphine, but as soon as they took him off of that, he did great! He was given strict instructions about how much he could lift, etc. But honestly, he did not have much problem at all…a little weak, but nothing major.

Just wanted to give an account of a very blessed discovery and surgery and recovery for those who are afraid. Each person is different, of course, but he had NO seizures (which really surprised everyone). Just bad headaches. No real personality change (he was slightly more edgy and less…”fun” before his surgery, but truthfully that much constant pain would make anyone grouchy. After his surgery he was good).

The only after effect is that now, after a head cold we all got in Feb, he still has lingering pain in the same area (he was FINE until the head cold). He had an MRI to check, but everything is good. They are checking for arteritis, but other than that we have no idea. I think it is probably nerve irritation (like how a knee goes bum after injury). In any case, everything else has been good.

Comment on Meningioma Surgery: A Flickr Story by Marivic

Marivic — Tue, 16 Mar 2010 04:32:36 +0000

Hi! Everyone. I’m so glad to accidentally find this site. I too had meningioma removed thru surgery. I had 2nd opinion from Stanford hospital Neuro surgeon who agreed with my Neuro Surgeon’s advise that I undergo surgery. I’m blessed to have found a great dr who specialized in Brain & Skull surgery & have been doing it for the past 30 years. During surgery, he found another tumor(w/c did not show on MRI prior surgery) at the back of my right eye; so initial 5-hr became 8 hr procedure. His asst Dr validated only his expert experience can handle such delicate surprise. Thank God! I feel His hand guiding my Dr. I stayed in the hospital 4 6 days w/o complications. But first 2 weeks@ home was hard coz I developed allergic reaction to pain medication; can’t hold solid food so survived on pedialyte H2o for almost 2 weeks. When I started to hold food & got energy I started my 4 week theraphy to learn how to walk again & make right side of my Boston sync with left coz half oft body was temporarily paralized. After 3-month disability leave; am now back to work n driving (though I don’t use freeway as precaution).My energy level is still low. Ultra sensitive to all kinds of sounds, my walk gets woobly when i’m tired & I manage sporadic headache w/ Tylenol. My Dr said full recovery may take couple of years. My learnings from this path to recovery is: be patient (there will be bumps along the way but don’t be discouraged), listen to your body coz only u would know what feels right for you and that lots of sleep help your Brain recover (NY Times bestseller : My Stroke of Insight a brain scientist’s personal journey by Jill Bolte Taylor, P.H.D. is highly recommended book to read). To everyone who shared this life changing experience, we can & will overcome this challenge; just trust in God. God Bless us all n take care:)