Surgery Appointment Details

Today seemed to drag as I waited for the phone call to let me know when the surgery would take place. Finally about 3:45pm Heather called with the details and then sent me an email with the particulars of the surgery:

Dear Ms Linhares,

Your pre-admitting testing has been scheduled for Thursday, August 10, 2006 at 11:15am. (Pre-op can take approximately 3-4 hrs please plan accordingly)

Your appointment with The Neurosurgical Nurses is for Thursday, August 10, 2006 at 2:45pm.

Your surgery has been scheduled for Thursday , August 17 , 2006 at 7:30am. Time of procedure subject to change. You will need to arrive at the hospital, two hours prior to surgery. Report to the Admitting Office at the 75 Francis Street Entrance.

Remember nothing to eat or drink after midnight the night before surgery.

No aspirin or aspirin containing products (including Advil, Motrin and Aleve) two weeks prior to surgery. If you are on Coumadin or Celebrex please notify us as soon as possible.

So the surgery will be on a Thursday and be 4 to 6 hours long from the time I enter the operating room until I am in recovery or ICU. I'll be in the hospital until the following Monday or Tuesday. Friday, after surgery, will be spent in ICU. This is actually better then when I'd been told that the surgery would be on a Monday because now Frank can come to see me on Sunday while I'm in the hospital, otherwise I won't see him at all because he doesn't get paid vacation or sick days and we need to have an income. Also my Mom has Thursdays off from work so she doesn't have to try to rearrange her schedule. Unfortunately we need to be at the hospital at 5:30am which means we will need to leave the house about 4am to allow for any traffic or road work. Heather mentioned that most people get a hotel room and sent info on several hotels that are very close to Brigham and Woman's Hospital. I'm not sure what we will do since it is a lot of money just to sleep for a couple more hours of sleep.

The Brain Science Foundation

From The Brain Science Foundation pamphlet titled "invest, Learn, inspire":

The Brain Science Foundation is a nonprofit supporting organization of the Department of Nuerosurgery at the Brigham and Women's Hospital in Boston, Massachusetts. The Foundation is dedicated to finding a cure for Primary brain tumors, particularly meningiomas, and to advancing the understanding of brain function as it relates to these tumors. The Brain Science Foundation supports basic and clinical research, promising new treatments, and opportunities to improve the quality of patient care.

The Meningioma Initiative
The Meningioma Initiative at Brigham and Women's Hospital, Department of Neurosurgery, draws together an internationally known group of neurosurgeons and researchers to focus significant attention on meningiomas. The Meningioma initiative encompasses cutting edge work in the following key areas:
-Clinical practice
-Research
-Teaching/training
-Patient care
-Outreach, communication, and awareness

The Meningioma Initiative is undertaking an exciting research agenda that will open up new pathways to understanding meningiomas. Projects designed to discover the molecular biology of these tumors, to examine the epidemiology of meningiomas, and to explore new treatment options are already underway. The Initiative is equally committed to creating and disseminating accurate information about meningioma to patients, families, and medicl professionals.

"Meningioma remains a neglected tumor partly because it is usually benign, and partly becasue there are no advocates for research. We want to change that." - Dr Peter Black, Neurosurgeon-in-Chief, Brigham and Women's Hospital.

Meningioma - The Neglected Brain Tumor
Meningiomas account for approximately 27% of all primary brain tumors, those tumors that originate in the brain rather then developing from cancer cells in other parts of the body. Although meningiomas represent the largest number of primary brain tumors diagnosed each year, their biology is not well understood.

While most meningiomas are not malignant, they can still cause serious disabilities. Because they can grow anywhere on the outer covering of the brain and spinal cord, meningiomas can affect cognitive, sensory, and motor functions as well as behavior and memory. There is no way to prevent recurrence of these tumors.

Meningiomas...
- Occur most often between the ages of 40 and 70.
- Grow slowly and may not present symptoms until they are quite large.
- Develop more often in women then in men
- Can recur, often as more serious tumors, including malignant tumors.
- Have been linked to radiation exposure, elevated levels of female hormones, and proximity to electromagnetic fields.

At this time, surgery is the most common treatment option for many meningiomas. Improvements in surgical techiniques and the addition of new technology enhancements at all stages of diagnosis and treatment can improve patient outcomes.

For more information or to make a donation:
www.brainsciencefoundation.org
info@brainsciencefoundation.org
266 Main Street
Building 1, Suite 6B
Medfield, MA 02052
508-242-9830

Go Carl!

We interupt this blog to congratulate Carl Edwards on winning the Busch Silver Celebration 250 tonight at Gateway race track.

Woo-Hoo Go Carl!

Meningiomas

When I had my appt with Dr Black I was given a number of brochures and handouts about preparing for neurosurgery, meningiomas, the hospital, etc. I thought I'd put some of the info on meningiomas here so everyone can understand what it is. Remember when you read this that I have no symptoms, this was caught by accident and Dr Black is going to take it out before it can do any damage. Also by removing the bone completely there is a much lesser chance of this recurring. I'm lucky that the meningioma that I have is not in my brain cavity, orbital meningiomas make up 1% of all meningiomas. The following is from "Your Meningioma Diagnosis" written by Nancy Conn-Levine, Lorraine Rubino-Levy, and Dr Peter McLaren Black, sponsored by the Brain Science Foundation:

What Is A Meningioma?
A meningioma (meh-ninn-jee-OH-mah) is a type of tumor that develops from the meninges (meh-ninn-jeez), the membrance that surrounds the brain and spinal cord. There are three layers of meninges, called the dura mater, arachnoid, and pia mater. Most meningiomas are categorized as benign tumors. However, unlike benign tumors elsewhere in the body, benign brain tumors can cause disability and may sometimes be life threatening. In many cases benign meningiomas appear to grow slowly. This means that depending upon where it is located, a meningioma may reach a relatively large size before it causes symptoms. Other meningiomas grow more rapidly, or have sudden growth spurts. Some meningiomas are classified as atypical or malignant tumors.

There is no way to predict the rate of growth of a meningioma, or to know for certain how long a specific tumor was growing before diagnosis. Although most people develop a single meningioma, it is possible to have several tumors growing simultaneously in different parts of the brain and spinal cord. When multiple meningiomas occur, more then one type of treatment may have to be used. Meningiomas appear to develop about twice as frequently in woman as in men, although they can occur in both sexes and at any age. They are the only variety of central nervous system tumor diagnosed more often in women than in men. According to the most recent statistics from the Central Brain Tumor Registry of the United States (CBTRUS), meningiomas are the most common type of primary brain tumor. Unlike a metastatic brain tumor that spreads to the brain from another site in the body, a primary brain tumor originates in the central nervous system. It is estimated that about 27.4% of primary brain tumors are meningiomas.

Treatment and Follow-up
...The most common treatment for a meningioma is surgery (removal of all or part of the tumor). Different types of radiation are also being used for treatment of selected meningiomas. Each type of treatment has some risks and benefits, and not every treatment is possible for every meningioma.....After treatment follow-up care is very important. Unfortunately meningiomas sometimes reoccur after surgery or radiation. Recurrent tumors may develop in other parts of the brain or spinal cord, which means that they can cause symptoms that are different from the original meningioma. Follow up MRI or CT scans every one to three years are an important part of long term health care for anyone who has been diagnosed with a meningioma.

A Bit of Humor

This joke was sent to me in an email yesterday and I thought it was so cute. I'm going to post it here to add a bit of humor.....
You are on a horse, galloping at a constant speed. On your right side is a sharp drop off, and on your left side is an elephant traveling at the same speed as you. Directly in front of you is a galloping kangaroo and your horse is unable to overtake it.
Behind you is a lion running at the same speed as you and the Kangaroo.What must you do to safely get out of this highly dangerous situation?
?
?
?
?
?
?
?
?
?
Get off the merry-go-round!

My Appointment With Dr Peter Black

I just got back from spending the day in Boston at the Dana-Farber/Brigham & Woman's hospital and my appt with Dr Peter Black. What a great man he is! He initially came across as very soft spoken and then as we talked and I started making jokes (my way of breaking stress) he started loosening up and was joking with me. He had a couple of interns with him and they were all very nice too. They asked about my elbow since I had listed it under the "existing conditions" portion of the new patient form, and after I mentioned what was going on several other interns came by to examine it...I think they had more fun trying to diagnose my elbow problem then anything else they were doing LOL. All of the interns that checked my elbow all came up with the same thing...compression on the ulna nerve, similar to carpal tunnel but in the elbow instead of the wrist. This is the same thing I had come up with before I even went to the first orthopedic doctor. They thought the MRI was a good idea to rule out any other problems and they are going to send a report of their findings to my new orthopedist.

Now about the tumor; Dr Black thinks it has a 90% probablility to be a meningioma and because of it's location he wants to remove it asap. He basically came in sat down said he had gone over my MRI & CT scans, reports from other Drs, etc, that it is a meningioma and "I think we need to take this out soon, in about 2 weeks". He is leaving tomorrow for a two week cruise/vacation and will do the surgery as soon as he returns. I find out the exact date and time on Monday. I will be in the hospital for approx 4 days after the surgery, the first day or two in ICU. They will cut from my hairline over the left part of my forehead and down to the outside corner of my left eye. Then they will cut (using a surgical saw) and remove the bones behind the tumor (superior lateral area of the orbit). Instead of trying to remove the tumor from the bone and then replace the bone Dr Black will reconstruct the missing orbital bones with titanium. Since they will be cutting the lateral and superior rectus muscles (the muscles that control moving your eye and your eylid) I will have double vision for 4 to 6 weeks, necessitating the use of an eye patch, and also the left lid will be closed for the same amount of time. As the cut muscles and nerves heal the lid will start to move and blink and the double vision will go away. Dr Black said I will have the biggest black eye that I have ever imagined, but mostly any negative results from surgery will be cosmetic and should all rectify itself as the surgery site heals.

So there you have it. I am relieved to know what this type of tumor is, even though it would have been a bit easier if it was one of the other types. Dr Black is one of the formost authorities on meningiomas AND is one of the very top Neurosurgeons in the world I couldn't be in better hands and even if the thought of brain surgery and removing (permanently) some of the bones in my head is kinda scary I really feel that I can't be in better hands. I have no doubts that this will all work out fine and someone must have been smiling on me to have found this tumor before it became too invasive. Beside's, my Mom fractured her skull in 1958, they removed a large portion of her skull and she has a plate covering the back of her head. She survived all that trama back in the late 50s! I'm so fortunate, 50 yrs later, to be able to have the very best of care in a totally modern state of the art facility.

I'll post as soon as I get a surgery date, probably Monday afternoon.

Now It's My Elbow

Back in November 2005 I started having some pain in my right elbow and noticed that I was occassionally dropping things out of my right hand. I went to my Orthopedic Dr, who without even touching my elbow or taking an xray diagnosed it as tennis elbow and gave me a shot of cortisone in the elbow. In Feb 2006 the pain was back and it was worse, even waking me up several times in the night. I went back to the same Dr and he gave me another cortisone shot, this time I had a big reaction and it was terribly painful. He still said it was tennis elbow with possibly the swelling in the joint pressing on the nerve similar to carpal tunnel, but in the elbow.

The pain has returned and I purposely put it off until I couldn't deal with it anymore. I wake up several times at night with such a charley-horse type cramp in my elbow down to my fingers! I drop things from that hand every day and it aches all the time. I made an appt with a different Orthopedic Specialist who was recommended by my pcp and went to see him today. He agrees that I do have symptoms of tennis elbow but said it seems to be more then that and he is concerned. He is scheduling an MRI of my arm because he is thinking I may have a tumor in the elbow joint. One of the possible diagnosis for the tumor in my head is a shwannoma (a tumor of the schwann cells along a nerve). While they are generally benign they do continue to grow and can occur in more then one place in your body; knees, ankles, wrists, elbows, and head are the usual places. From what I've read some people with schwannoma's also have scoliosis (sp?) and I do have a mild case of that. A worse possible scenario is that there is a "nasty" tumor in my elbow and that is what caused the tumor in my head. Best case scenario is that it is a really bad case of tennis elbow with compression on the ulna nerve.

Once he sees the MRI of my arm we will decide what to do. I couldn't believe it when he said I needed the MRI because I could have a tumor in the elbow joint . The last time I went in for an MRI they found a tumor, it is a bit scary to think about that happening again.

Tommorrow is my appt with Dr Black at Dana-Farber, it should be interesting.

Some People

Just a quick note to thank everyone who has written to me privately or in my guestbook here to give me notes of encouragement and caring. It means so much to me that it is difficult to put into words, especially those of you that understood why I wasn't available for a few weeks. Unfortunately a couple of the people that also mean a good deal to me have not responded to me at all. I hope they have at least come to this site to check up on me anonymously.

I was hoping that people wouldn't turn away or feel sorry for me when they found out I had this "thing" in my head and that is one of the reasons I took "a few weeks off" to sort out how I would approach everyone. We still haven't told most of my family. I think the thing that bothers me the most in all of this is the reaction that I have received from just a few people, one of whom actually thought that I was making this up for sympathy! Boy do I wish! I have always had an accident prone "Murphy's Law" kinda life and for some reason things just happen...like when I fell this past Feb and sparined not one, but two knees . If that person reads this all they have to do is go to the photos section (link at the top of the page) and look at the copies of the MRI I have posted there. If you still don't believe me then copy the picture to your harddrive, blow it up, and you will see all my info typed there. I can't believe that someone would be so cruel to compare me to that woman that was highlighted on Dateline last Friday who had faked cancer to try to get lots of $$. Besides the fact that I have turned down all offers of $$ help since my husband's boss may be picking up the extra.

Oops, I guess this is a bit longer then a quick note LOL

MRI Photos

Pictures of my MRI. The right side of the picture is actually the left side of my head and vice versa for the other side.

Second Appt With Dr Grove

Today I had an appt with Dr Grove so he could compare the MRI from 4 years ago with the current one and also to discuss the options. The Radiologist at Shields MRI in Dartmouth (who did both MRIs) had never mentioned the tumor 4 yrs ago and in the recent MRI report they said that this "was definately not" on the 4 yr old MRI. Dr Grove took one look at the older MRIs and said "There it is!" Granted it is half the size that it is now, but a tumor is clearly visible, even to my eye...and they didn't even use the contrast dye on that MRI. So that was actually a good thing, it means that while this has gotten bigger it is only about half of what we thought it had grown. It also gave Dr Grove a chance to study it when it was smaller, but he still doesn't know what it is exactly. However the slow growth most likely means it isn't a stage 3 or 4 tumor :-)

While the MRIs where on the light box Dr Grove helped me take a few pictures. I will post two of them (different views) in the next entry and have marked on the picture where the tumor is located, although it isn't too hard to miss if you look in the right place. The right side of the picture is actually the left side of my head and vice versa for the other side.

Next up an appt on Thursday with an orthopedic surgeon to fix my elbow finally and then Dr Black on Friday.

Why I Need A Root Canal...

Today I spent 4 hours on the phone to Drs offices setting up more appts, getting referrals for insurance, and making arrangements to get copies of the CT & MRI scans for my appt with Dr Black next Friday. Everyone you talk to is so nice and everything went well...with one exception.

I think I wrote a few posts back that the CT scan showed I need a root canal. While I have no pain in that tooth I did loose a filling in it back the beginning of April. I made an appt with a new (to me) dentist the very next day. I was very surprised when he told me that I have advanced peridontal disease and would need a series of very expensive appts, that luckily my insurance covered for the most part. He took a full set of xrays. He never mentioned my lost filling and when I asked about it I was told that as long as the tooth didn't hurt it was fine (basically to forget about the big gaping hole where the filling had been), he was trying to save all my teeth first, preceeding to tell me tales of people whose teeth just fell out even when they were just sitting watching TV. I thought it was strange because I never have had a lose tooth or any blood when I brush or floss my teeth but this dentist had come highly recommended so I foolishly listened to him and started the appts. I also thought it odd that the appts were spaced 4 to 6 weeks apart since I think any effects of cleaning would revert back before the next appt, but again didn't question anything. After 2 appts just before my 3rd our health insurance changed and the special cleanings were no longer covered. I called in to let the office know and the Dentist came on the phone and said he was releasing me from his care. It took me a moment to realize what he was saying...that he wouldn't see me anymore!

Just after that I found out about the tumor and in the CT scan Dr Grove noticed that the root was open into my sinus and I need a root canal asap. He couldn't imagine why the dentist hadn't filled my tooth at that first appt so it wouldn't have progressed this far or why he hadn't noticed this in the xrays! When making the root canal appt with the Endodontist I found that the new insurance won't cover it (the nurse tried hard to get it covered saying it was tied to the Brain tumor since I need to have the root canal before any surgery) so we will have to pay $1100.00! I scheduled the appt in two weeks because it has to be done but have no idea where that $$ is going to come from since I haven't been working.

I'm so bloody mad at this smug dentist, Dr Louise Kenyon in Mattapoisett, MA! :-( If he had filled my tooth at the first appt like I had asked and expected I would not be in this situation. On the advice of my Dad I called today to speak to Dr Kenyon to see if he could make good on his error, perhaps give me back at least the approx $500.00 that I had already paid him for the cleaning treatments or ideally pay for the root canal but he refused to speak to me saying I was no longer an active patient and he was busy. When I tried to call back after that I always received an answering machine, that wouldn't let you leave a message.

For the first time in all of this I actually broke down into tears and felt sorry for myself. I don't know why this stuff always happens to me! Between the brain tumor surgery, probable elbow surgery, and root canal this is all going to cost a huge amount of money that we don't have and I wonder if it is even worth it? I did the right thing when I lost that filling back in April and saw a dentist the very next day and yet I'm out about $500.00 for a partial deep cleaning and now need to not only come up with another $1100.00 in two weeks but also have to go through the root canal, which I AM NOT looking forward to especially since I'm a HUGE dentist wimp!

I was able to get calmed down a bit because I needed to call back to Dr Black's office to give them the referral number and make arrangements to send them my records for the 2nd opinion next week. I also had to make an appt with an orthopedic surgeon because I have severe tennis elbow that hasn't responded to 2 rounds of cortisone so the next option is surgery. I had been putting that off until I couldn't stand the pain anymore since all this other stuff is going on, but I can barely pick up a magazine in my right hand now and it wakes me up all night so I don't sleep for more then about an hour at a time. The staff at both places was so wonderful and upbeat to talk to that I feel a bit better now. Writing it down in this journal helps too.

I'm exhausted, I think I'll go take a nap....

T.H.E. Brain Trust

As I think I mentioned previously in order to find out as much as I can about this tumor I have joined the braintmr list hosted by www.Braintrust.org . This list has been a great source of information and comfort, even if I have to use a magnifyer at times to read it. I have made many new acquaintences who either have a brain tumor or have a family member/friend that has one. I certainly wouldn't have my appt with Dr Black if it wasn't for people on this list.
I've received so many wonderfully supportive emails from people I've met on this list and wanted to share one of the many here:

<<Peter Black is VERY well loved by this community. Go there with confidence, and again, you are really doing a fantastic job for someone so newly out of the gate. We’re all behind you.>>

This and That

Yesterday I talked to Dr Grove to let him know that I had a 2nd opinion with Dr Black and he thought it was "wonderful" that I could get an appt to see Dr Black personally. He has worked with Dr Black in the operating room several times and said he would be happy to assist in any surgery since Dr Black would need an orbital reconstructionist. I don't know how I got so "lucky" to be able to be seen by such reknowned and respected men but I feel totally safe in their care.

I was supposed to make the appt yesterday with the Endodontist for the root canal but put it off until today...I HATE the dentist and in a strange way would almost rather have the tumor surgery then the root canal! LOL

I've received emails from so many friends and it means a lot. I may not be able to respond personally to each one but know that I have read them and saved them all. We have decided to wait until after my appt with Dr Black on July 28 (two weeks from today) when we will know more before I tell the rest of my family and more or less "go public" so I don't worry people needlessly. I'm more used to taking care of everyone else around me and as those who know me can tell I'm not a very good patient because I don't like people having to change their own lives to help me or to worry about me when they have stuff of their own to worry about.

Another Doctor Appointment

I had an appt with my primary care Dr today so we could discuss all the Drs, scans, and tests I've had. I brought a notebook with lots of questions. The last time I saw him was 2 months ago for a yearly physical and I was telling him how everything was fine and I felt good but thought I needed reading glasses. Boy a lot has changed in that time. He was very pleased that I had been able to get the appt with Dr Black and from reading everything he said that if it were him he would want the tumor out.

I was given a copy of the report that the orbital specialist sent to my pcp. This is what a part of it said:

"I reviewed her MRI scans and scheduled CT scans to examine the orbital bones. Those studies visualized an elevated tumor with a smooth but irregular outline that was on the surface of the posterior-lateral wall of the left orbit. The lateral rectus muscle and the optic nerve are displaced but not compressed. I suspect that the orbital tumor is benign -- most likely a Schwannoma or meningioma, but could be one of about 30 other benign tumors."

Not sure I like the words "I suspect" and "most-likely" in terms of waiting for surgery so I'm really leaning to getting it out as soon as I can, especially if it is displacing things. Just to add insult to injury the CT scan had showed that while I might not have symptoms yet I'm going to need a root canal real soon

Dr Peter McLaren Black MD PHD

Here is a bit of a bio I found on Dr Peter Black. The following is from the Brain Science Foundation's Leadership page - The Brain Science Foundation

Peter M. Black, M.D., Ph.D., FACS
Dr. Peter Black is chairman of the Departments of Neurosurgery at the Brigham and Women’s Hospital and Children’s Hospital; Neurosurgeon-in-chief at Brigham and Women’s Hospital; Chief of Neurosurgical Oncology at Dana Farber Cancer Institute; and Franc D. Ingraham Professor of Neurosurgery at Harvard Medical School.

He is a respected clinical neurosurgeon with a busy neurosurgical oncology practice that includes many international referrals. He directs the brain tumor program at Dana-Farber Brigham and Women’s Cancer Center. He is consistently listed in Best Doctors in America and Top Doctors with special interest in surgery for meningiomas, pituitary adenomas, and low-grade gliomas; image-guided minimally invasive neurosurgery; skull base surgery; and brain mapping. He helped to develop the first intraoperative MRI and has used this device extensively to improve brain tumor treatment. He also has extensive experience in epilepsy surgery in children and hydrocephalus in adults.
Dr. Black sits on many review boards and is chairman of the Editorial Board of Neurosurgery and the senior representative of the CNS to the World Federation of Neurosurgical Societies. His laboratory has had ongoing funding since 1980, including present RO1 funding. It investigates growth and invasion in brain tumors, especially meningiomas. Collaborations with laboratories in France and Israel have led to new models of meningiomas, new therapeutic approaches, and improved surgical planning. His bibliography includes 10 books and 500 papers, most involving brain tumor management, brain imaging and image-guided surgery, medical ethics, and molecular neurosurgery.

Dr. Black was born in Canada and while in high school, became an Associate of the Royal Conservatory of Toronto as a solo performer in piano. He attended Harvard College, graduating with honors. He returned to Canada for medical school at McGill University. He entered surgical and then neurosurgical residency at the Massachusetts General Hospital. During this period, he served two years in the United States Navy, mostly at the U.S. Capitol as a physician to Congress and the Supreme Court. He earned a Ph.D. in philosophy from Georgetown University. In 1980 he joined the staff at the MGH. In 1987 he became a Professor and Chief of Neurosurgery at the Brigham and Women’s and Children’s Hospitals.

Dr. Black is deeply committed to neurosurgical research, clinical practice, and education. He has a great interest in the work of the World Federation of Neurosurgical Societies and chairs its Bylaws committee, also sitting on the Education and Ethics committees. He has mentored students, residents, young faculty, and graduate neurosurgeons from more than 30 countries and has given invited lectures in 40. He is very proud of the productivity of his former trainees, many holding prominent academic positions.

Read about Dr. Black's Brain Tumor Laboratory. Click here to read an interview with Dr. Black.

My Second Opinion Appointment

Yesterday I asked the people on the T.H.E. Brain Trust BRAINTMR list for a referral to a great NeuroSurgeon and recieved a number of replies, 75% saying to try to get an appt with Dr Peter Black, MD, PHD Chief of NueroSurgery at DanaFarber/Brigham & Womans Hospital and also Children's Hospital, in Boston. My first thought was "yeah right, why and how would I be able to get an appt with someone that is all but famous in NeuroSurgery". So, figuring I had nothing to lose but lots to gain, I called our insurance company to see if I was able to see Dr Black for a 2nd opinion and they said "Yes". Then I called the number I had been given for Dr Black's office. After explaining my problem to the person who answered the phone she was going to schedule me with one of Dr Black's associates toward the end of Aug. I thought that this would be fine since Dr Black would be reviewing the case and any surgery would be after the end of August as far as I knew. She transfered me to pre-registration and after getting that taken care of I was transfered back to Dr Black's office. During the 5 minutes or so that I had been away she had talked to Dr Black and now I was getting an appt in 2 weeks with him personally. He was able to squeeze me in so that he will see me before the Tumor Board Meeting, where a team of Drs from Dana Farber/B&W will review my case. I have no idea whether to just feel really fortunate that he is seeing me (I sure do!) or wonder why my case is so special that he wants to see me personally. After doing a bit more research on Dr Black I have found out that not only is he one of the Top NeuorSurgeons in this country, but also the world! He has developed an intraoperative MRI and does some of his brain surgeries using it so that he can get to even the toughest tumors (and supposedly mine isn't that hard to reach). There are only 16 of these machines in the world at this time. After reading on the Brigham & Woman's website of all the things this man has done I wonder if he ever sleeps! He also is part of the BrainScienceFoundation and they recieved a 5 million dollar grant to study meningiomas...one of the things this could be. Listed on Dr Black's page of the B&W/DF website is his special interests, two of which are skullbased tumors (which this is considered) and meningiomas. Perhaps this is why I've been able to get an appt with him and not the other people who have emailed me telling me they have been trying for over 6 months to get an appt. No matter what happens, between Dr Black and Dr Grove, I feel that I am in very good hands :-)

Dr Arthur Grove

I really like my first doctor (Dr Arthur Grove) and don't want him to think that I don't trust him or anything like that, even though I'm sure they are used to 2nd opinions. I am very impressed with what I've been able to find out about him on the internet and after meeting him and his wife who does his office work. I did also ask a couple of my other Drs up in Boston and the radiologists at Mass Eye & Ear about Dr Grove and got just glowing reports. He was referred to me by the Ophthalmic Consultants of Boston, who work out of MGH and ME&E. The Dr and tech in the radiology Dept each smiled and softened their expression as soon as I mentioned Dr Grove, saying he is their absolute favorite Dr and they would do anything for him (that must explain why he could just pick up the phone at 5:45pm and get me a CT scan right then and have the radiology staff waiting for me when I walked up to the counter).

Now What?

So now I have to make a decision before my next appt. I could wait 3 months and see if it grows and then most likely have surgery or I could have surgery in a few weeks to remove it, which would involve removing part of the bone at the back left part of the orbit that the tumor is against and a minimum 2 day hospital stay. Since it wasn't there 4 years ago and they don't know what it is Dr Grove is leaning toward removal (although not pushing me by any means). I think I'm also leaning toward the surgery. I'm having a hard time accepting that this is happening, it is almost like it is happening to someone else. The not knowing what it is has already driven me a bit crazy with speculation though. If my Dr, who is a very respected orbital tumor specialist in practice for many years and the other staff at Mass Eye & Ear don't know what it is then that is a bit scary to me! I also don't think I want to wait until it presents with worse symptoms that might not be able to be corrected.

There are times that I feel a little displaced since I don't have a definite diagnosis and while my Dr said it is a brain tumor of some sort it is in the orbit, against the bone and not the brain cavity. Leave it to me to come up with an unusual brain tumor! LOL

I'm interested in opinions on whether I should have the surgery to find out and remove the tumor (I was told that if they went in they would just remove it instead of a biopsy because of where it was). You can post a comment in the guest book to let me know what you would do. Any pros/cons about Mass Eye and Ear are also welcome, although I will say my experience with them so far has been great and VERY fast.

In The Beginning

My name is Sue Linhares and I live in Mattapoisett, MA. I have been married for 17 years to my husband Frank. We have no children but raise & show Gordon Setters and Betta Splendens.
A few months ago I started having vision problems in my right eye. Thinking I needed reading glasses I scheduled an appt with the Ophthalmologist. After several exams, an abnormal vision field test, and a visit to a retinal specialist the doctors scheduled me for an MRI of the globes and orbits, paying attention to the right optic nerve. Before the MRI I was told it would be about 6 pictures and the off chance of them having to use contrast dye. After 10 pictures they told me they were going to give me the contrast dye and I started to get nervous that they had found something. At 8:30am the next morning I got a call from my ophthalmologist saying that they had found a mass on my LEFT orbit. My right orbit and everything else looked good. He gave me the number of a very respected orbital specialist at Mass Eye and Ear, Dr Arthur Grove, and told me to call him NOW. I hung up the phone not knowing what to do. I was numb. On one hand I was terrified but on the other I was thankful that we "accidently" found this, even if we still didn't know what is going on with the sight in my right eye. I called Dr Grove and was able to get an appointment the next day he was in the office for patients, only about 4 days away. This was all moving so fast and all I knew was that the first doctor had said "it isn't huge, but not tiny" when I asked him how big it is. I was really put at ease by both Dr Grove and his wife, who works as his office manager. I have found out that Dr Grove has written several books on orbital tumors and won awards for his work with both the orbit and reconstrucion surgery. He did a thorough exam and then we looked at the MRIs together. It was kind of surreal to see a photo of your brain and also a white spot the size of a nickel along the superior lateral orbital wall. The doctor was surprised that I wasn't presenting any symptoms in my left eye other then a decrease of vision from 20/20 to about 20/30, tearing out of the outside corner of my left eye and slight headaches that I had all written off to eye strain. He wanted to do a CT and personally called the radiology dept, which told him to send me right over. After the CT they told me that the Dr would get back to me in 2 days. He called me the next morning after a meeting with the chief radiologist, a neurosurgeon, oncologist and another Dr that I can't remember. He told me they agreed with the following and they determined: First it is definitely a tumor. Second it has fairly well circumscribed edges so they do not believe it to be malignant. Third the CT showed that it is actually the size of my eye, or about a quarter. Fourth was that at this time it doesn't seem to have caused any damage, it is not around the optic nerve, and also while it seems to be right against the bone it doesn't look like it has gone into the bone or into the brain cavity. After just the MRI they had mentioned meningioma or cavernous hemangioma and now that they have read the CT scan I was told that there is still a chance it is one of these two diagnosis but it could also be a schwannoma or one of about 30 other tumors that they didn't tell me the names of. I had an MRI of the brain 4 years ago for something unrelated to this, and the tumor wasn't there at that time.
I have started this site as a way to both let family and friends keep up with what is going on and also to keep a log of the progress for myself