Hi Carol. So happy to hear from you.
Yes I do live in the area. I'm in Windham. Not far from where you are. I also had part of my tumor left behind but my facial nerves were traumatized.Both Dr Kveton and Piepmeier said that my facial nerves will get better in time.
I have an appiontment with both March 4th so Im hopping they say they see an improvement.
So how are you doing now? How is your balance? How long was your surgery? I's the side of your head where the tumor was numb or was it numb after the surgey? I have lots of questions.I hope you dont mind.
They told us my surgery should last about 3 to 4 hrs. I't ended up taken 10 hrs.
I hope you are doing well and looking forward to hearing from you soon. O h and to answear your question about Dr Piepmeier and Kveton. They are both Wonderful.
Thank you for you email address. I'll send mine to you email.
Hi Sandra!! Sorry, i didn't get the notice to respond in my email!
I hope by now your drooping is getting better. I didn't droop, they left 10% of my tumor in so I would not droop.
BUT - I was talking with another woman who did droop - and it was a year and a half before she really noticed the droop was getting better.
You live in Connecticut? To get those two, you must live in the area. Or, you traveled in to get them?
Isn't Dr. Kveton just the sweetest guy? Dr. Piepmeier, of course is great, he is mostly all business. I did see a few smiles from him here and there, mostly he is full of concern and thinking about what to do next.
I hope you check your messages here to see that I did reply!
Talk to you soon, I hope!
My name is Sandra. I had the same surgery as you. Also preformed by Dr Piepmeier and Dr Kveton. I had it done Oct 25th 2010. My balance has gotton much better. My only concern is the dropping on the left side of my face. Both doctors said it will get better. Its just a matter of time. D id you have dropping after the surgery ? If so for how long? How are you doing now?
Hi Ally, My niece was born with NF. I'm sure my sister in law and brother could help you find support or help.
They do not let emails go out in the public forum but if you message me privately, I can give you my brother's email.
Balance is always an issue with ear tumors. The vestibular area controls balance.
You are young to have NF2-
Hang in there!
I'm 18 and I was diagnosed with nf2 a few years ago. I'm recently having balance issues? but hopefully its not related. my hearing is wonderful! thank God,
but since my first mri my tumors on my ears have grown, but more so the one on the T4 region.
anyone have issues with tumors on the spine, esp. t4? I don't even know what it controls..
we're meeting with doctors to discuss possible actions to be taken this summer.
it's a little nervewrecking. Especially for my mom, because she's already went through this with my dad who passed away when he was 38.
Any advice, word of encouragement for me?
I drive 300 - 500 miles a week for my job. I look at numbers on spreadsheets at a variety of businesses. Gather information - then at home, compile the report and send it in to my boss. The worst thing is the driving, why I cannot return to work yet. The dizziness is not safe for driving that much. Could I drive 5 - 10 miles. Sure, I don't think that would be that bad anymore. But my job requires a lot of windshield time.
My tumor ware 3cm and wrapped around three nerves. Like a basket weave. They left 10% on my facial nerve so I did not end up with an issue like a droopy face.
I saw the doctor yesterday (for my headaches) he is putting me on valium. He said it might help with the dizzies AND relieve the headaches before they start. He wants me to take one before bed and at breakfast and sometime mid after noon --- to start.
Worth a shot.
He also said it is very rare that someone have trouble this long after the surgery, but he has seen it before. Not unheard of. So, have hope and a good attitude. You should fall more in the category of returning to work within 2 months. That is what he told me before we did the surgery. Normal recovery time is 8 - 10 weeks.
If you have NF2 - hearing preservation is key 1. You will most likely develop a tumor on the other side. You are right.
My niece has NF - born with it. So, naturally I was worried that I was developing NF2, but right now, the doctor thinks it is just one of of those things. Odd and no one knows why this type of tumor develops in some people.
Kids are more tolerant than you think. If you are active and involved in the school with your kids and the other children see you all the time, you will just be their mom, not someone with a droopy face.
One mom had a scar on her right cheek so bad, it must have been a horrible accident. I never asked her. And the kids always were happy she was there helping at parties or for projects. We went in a lot together.
Oh, another mom had rheumotoid arthritis since she was in college, age 20 it struck her. Her hands were so twisted, she could not straighten them out. But she helped the kids and they never flinched - they accept what they see as long as they are allowed to see it.
My grandmother had her toes removed due to diabetes. She always wore her shoes. One day she had her shoes off and my son (who was 2 1/2 at the time) said, "Hey, where are your toes??" She said the doctor took them. He said, "Why did you let him do that? Can't you get them back?"
But never mentioned it again. He just accepted it after that.
6 weeks returning to work. That is kind of soon if he does a craniotomy. I had the 2" hole bored in my head, brain pushed aside to reach the next area. Drilled into some other bone in my head, then they got to the tumor.
What type of surgery are they suggesting for you?
Best wishes! Let me know how you are doing,
Thank you immensely for being so candid and sharing your story with me. The doc I saw at UAB was nice enough and spent a good amount of time answering my questions, but I felt like he was pretty optimistic about recovery. He said that I would probably be able to return to work in 6 weeks. I don't know about 12 hour shifts on my feet 6 weeks out if you've had that much difficulty with balance. How big was your tumor? Mine is about 2 cm and this doc said it's not emergent so I am going to explore all of my options first. Plus when you tell a procrastinator not emergent that could be years, right? LOL. So it looks like with both my tumors I probably have Neurofibromatosis 2 which means that at some point I could look forward to another tumor on my currently unaffected side. Lucky me! All of a sudden I find hearing preservation slightly more important even though it sounds like little more than a shot in the dark. I'm praying for facial nerve preservation, I don't want my kiddos to get made fun of because their mom has a crooked face. I have gotten several copies of my MRI and will contact anyone that might look at it. I will certainly look at that contact you gave me. Honestly I am willing to go anywhere. My family is all in the Northeast and I am Blessed in that they will do what it takes to get us through this. This whole experience thus far is so completely overwhelming. Thank you again for sharing and also for the prayers. Happy Birthday! God Bless!
Many Thanks, karen
I did have the surgery on 10/29/2009. God awful the first week. Then it was plain horrible for another week. Then just awful for the third week. Used a walker to negotiate as I was so dizzy for the first three weeks. Then I moved to using a cane. Now I rely on someone holding my hand to steady me when I am outside or in a crowd such as a mall or store. I mean outside like - anywhere outside. Very disorienting still and I am always feeling like I will fall. Kind of like walking on a boat in a storm. Walking in the house, not too bad now unless I walk fast.
Biggest concern for you is making sure you have skilled hands in your brain. Believe it or not, 20 - 50 per year IS a lot. A vestibular schwannoma is rare. I think the doctor said 1 in a hundred thousand. So to find a doctor who takes out more than 1 a month is good. How many years and what kind of team does he work with?
My neurosurgeon would NOT work with anyone other than HIS team of specialists. No replacements. If his choice of base skull surgeon ENT specialist was not available, he would NOT do the surgery (which is why my surgery was postponed one time....)
Since this is rare, he does maybe 2 dozen a year. Now, think about it. He does surgeries on brains 3 - 5 times a week - and that comes out to probably 200 - 400 surgeries on brains a year. Only 24 or so are for this type of tumor.
That is how rare this is.
Also, make sure your "center" or hospital is a specialist in the recovery process. I was placed into a brain recovery room with a large window for observation and the nurse sat right outside my window to do her paperwork and she had only me to worry about - and that was for the first 30 hours or more.
Very important that the center knows how fragile the patient is for aftercare.
I did join ANA, but never really used their site.
AL - hmmmm, they may be able to guide you for the best location to do the surgery. Your insurance should pay for you (*if you have good healthcare insurance that is....) to go to a center that will be the safest choice for this.
LUCKILY I live in Connecticut and had Yale New Haven within 40 minutes of my home.
The doctor I used was Dr. Piepmeier for neurosurgery and Dr. Kveton for the base skull surgeon / ENT specialist.
Could not have been in better hands.
Would I not do this surgery if I had to do it all over again - everything, the pain, the vertigo, the throwing up, the loss of hearing, the chronic headache I have now???
I would have to say yes, because I know that leaving a tumor in - that can keep growing and cause me more trouble than I was already having, would probably end up killing me or blinding me on the right side. Doing more damage than it already did.
I have a right eye peripheral blindness. The tumor caused it. But the eye doctor said the damage is done and should not spread (thank goodness) but it is irreversible.
Deaf in the right ear. Chronic headaches. Still dizzy and off balance (they did have to cut the balance nerve to remove the tumor) and my eyes are blurry and constantly dry and then tear up.
Some facial numbness on the right side but not as bad as that day it went numb at my son's graduation! So they did preserve my facial function and most of the feeling.
They left 10% of the tumor in as they did a quick frozen biopsy right there in the operating room to be sure it was not malignant ---- they left it on my facial nerve. While operating they saw that my face was reacting or twitching as they were cutting at that portion of the tumor growing on my face nerve and left it to save the face function.
so, there you have it. My experience. ANY time you want to talk, please feel free to contact me. ***@****
As far as the meningioma - I don't know much about that, but I know the symptoms are VERY similar to vestibular schwannomas.
Make sure you have a 2nd / 3rd opinion on the entire problem -
I actually got copies of the MRI films (discs) and mailed them to two different surgical centers for opinions. One was in St. Louis one was in California.
This Doctor was the most helpful:
Timothy E. Hullar, MD, FACS
Departments of Otolaryngology-Head and Neck Surgery
and Anatomy and Neurobiology
Washington University School of Medicine
660 South Euclid Avenue #8115
Saint Louis, MO 63110
314-362-8641 (secretary Jeanne Wehner)
Depending on where in AL - maybe you are within 8 hours of St. Louis??
All my best wishes and prayers. Having two little ones to be in charge of if going to be so tough, you will need care givers for them for at least 4 weeks. 2 weeks before you can do anything other than get up to go to the bathroom and then lie right back down.
I had my husband to help. We have three children. Oh, you asked my age! I am 49 - will be 50 this month.
You are so young for a vestibular tumor - the median age is 50 ---
Get another opinion! Something is wrong and if it is that other thing, meningioma - maybe Dr. Hullar can help with that too. I know he is the sweetest doctor out there. Answered so many questions for me.
Hugs to you!
Did you have your surgery? How was the outcome? May I ask how old you are? I'm 34 and just diagnosed. I'm pretty freaked out! I've got 2 kiddos under the age of 4 and I work full time as a nurse. I can't afford 18 months off. I feel like I'm at a geographical disadvantage as well as I'm in AL. Seems like most of the literature I'm coming across is from the northeast. I keep seeing advice about finding somewhere that does high volumes, but how do I find this out? I'm between Emory and UAB however my ENT referred me to UAB and the doc told me that they do 20-50 per year, that does not sound like a lot to me.
I've also got a large meningioma. However no one has really even addressed this yet. I'm headed to the ANA website next. Thank you for any info you are willing to share. I also saw that the NIH has a drug trial. Right now looks just like they are trying to see if this particular drug will reach the tumor, but I'm figuring if I wind up with another AN in my other ear at some point in my life I might be looking for more options.
Many Thanks, Karen
LOL - I'm sure my kids will come up with something for me too.
I was given 100% chance of losing hearing (not sure how he knows that already) and 50/50 chance of getting the facial feeling back.
He did not want to raise my hopes for the hearing, I guess.
Did you take a year to get back to work because of pain or other issues?
I'll lose my medical benefits if I am not back in 6 months. Hoping that since my tumor is small 1cm - that I can get back within 3 to 4 months and not jeapordize the insurance.
From the time it was found to taking it out, I was wondering if I should get another MRI - so they have a current look. Seems to be pressing on different things now, so maybe it changed?
Going to ask Monday.
Thank you for the help, we are a rare bunch, but it is good to find eachother!
Great that you visited the ANA website. As you know the diagnosis for NF2 is bilateral tumors, but there are those that will have NF2 showing only 1 tumor with another tumor making itself present years later. The fact you have NF in the family line would raise questions for me and should be mentioned to your doctors.
I had my surgery done at Shands University of Florida by doctors P. Antonelli (Neurotologist) and S. Lewis (Neurosurgeon). They did the retrosigmoid approach and unfortunately I am single sided deaf. Dr. Antonelli gave an informative talk on long-term microsurgical outcomes at the last Symposium. You might want to order this CD from ANA along with other CD's by different doctors on various issues such as NF2, Radiotherapy, etc. My doctor says he got all the tumor and the surgical report states a low probability of tumor re-growth. They cannot say with 100% certainty they got all of the tumor as cells could be left behind to re-grow in the future. That is why they recommend MRI's on a regular basis of 1 year, 2 years, 5 years and 10 years. Some people have MRI's every year and this depends on their tumor type and size. My size was 1.5cm (not small, more medium size) and it did significant bone damage while growing inside the IAC where the three nerves intertwine.
I returned to work one year later as a yoga instructor. 18 months later I had a 2nd surgery through the ear canal (transcanal) to remove the sacculus and inflammation seen on MRI. I was having difficulty walking where my vision bounced causing my knees to buckle. This is not the normal path of an AN patient, let me remind you. Normally after surgery and vestibular rehab most patients go back to their jobs without much difficulty. Do they "feel" the same--no. One never "feels" the same when their balance nerve is removed, but they will function well in the balance department.
You should know removing this nerve and being single sided deaf one never feels the same, but I have become accustomed to the "new" me and most people would never know of my history looking at me. There is a term coined called "wonky head" and this is an appropriate term.
Hope this helps.
Hello, Thank you! I have signed up for the ANA and got some literature. Helpful, hopeful stories there.
Microsurgery? How was that done and by whom and did they say it might re-grow? Do you have your hearing?
If this is NF2 - would I have bilateral tumors? I have the one in the right ear only.
My neice was born with NF - 21 liver spots - and the doctor did the test and let my brother know her prognosis.
That was 19 years ago. She has so many tumors.
I just have to think of her to not feel sorry for myself.
How long before you went back to work? If you don't work, how long before you felt like yourself again?
I had microsurgery for vestibular schwannoma in 2005. If you have not already been to the Acoustic Neuroma Association website you should because we have a great support system. This was founded by a patient and patient run site. There is doctor information, radiation information with doctors onboard to answer your questions, patient advice, the latest CD's on the recent Symposium where neurosurgeons and neurotologists gather. The doctors give informative talks on all treatment options and have up-to-date information on vestibular schwannomas and NF2.
An informed patient going into "any" treatment is the best advice I can give. Yes, Yale is very well known. The operating doctor removing the tumor (usually a neurotologist teaming up with a neurosurgeon) should have hundreds if not thousands of this particular type of surgery under their belt as the location of this tumor is difficult to get to, not much room for mistakes as important nerves are intertwined with the tumor. They will most likely take the balance nerve as this is the nerve a "vestibular" schwannoma grows from. Saving the hearing nerve is very important to them and the patient as is the facial nerve. Sometimes they discover it grows from the facial nerve where you have a different sort of outcome. If you are experiencing facial nerve symptoms it is most likely the tumor is pressing on this nerve (not a good idea) and can weaken or worse cause irreparable harm to your facial nerve function as these nerves (facial, balance and hearing) are super sensitive. The size of the tumor matters as it has been agreed upon by these surgeons a tumor greater than 1.5-2.0 cm makes it more difficult (but not impossible) to save facial function. I have never come across a patient who went under the knife for just a biopsy on this tumor.
Removing the balance nerve helps the brain to compensate for the loss of balance you will experience. There will be physical rehab for you to help you regain your balance. Right now the compromised nerve is sending mixed signals to the brain. As for your vision I do not have information here for you as I did not have vision issues, but this is not to say your vision cannot be affected by the tumor even though these nerves do not mix in with the three (vestibular, hearing & facial).
All the best to you in your journey. Please go to the ANA site and join in talking to patients who are more than happy to answer more questions you no doubt have.
I am lucky enough to live in CT where we have Yale New Haven Hospital - I have seen the neurosurgeon and the base skull surgeon. And I have mailed my MRIs to a wonderful wonderful neurosurgeon out in Missouri. All said the same thing. BUT the doctor in Yale, neurosurgeon, was not 100% convinced it was a simple schwannoma because he sees speckled features so he is recommending removal for biopsy. I am 49. I am in good health. He thinks he will save my face nerves but could not promise anything on the hearing - he said usually that is effected at the least and gone because you have to sever the nerve to completely remove the tumor. If you leave any of it to try and save hearing, you can have a regrowth. He said if I was older or in poor health, he might try the gamma - but that will usually end up with a re-growth.
My vision is also beginning to be effected. Words jump out of paragraphs as I read and are blurring together.
Of course the tinnitus is driving me crazy on some days. Some days it is so mild it is barely noticeable.
Face feeling comes and goes. Today, not bad.
Waiting to hear on a surgery date. We are either going for 10/15/09 or 10/29/09 - we are waiting on the base skull surgeon's schedule.
Should know today.
Trying to get all my ducks in a row - pay the bills - make sure my husband knows where everything is, etc...
Thank you both!
You will basically be presented with three options: 1) observation 2) stereotactic radiotherapy (aka, 'gamma knife') or 3) surgical excision. Be sure to ask what the risks and benefits are to each approach and ask them what their complication rates and success rates are for each. Some centers tend to favor radiation or surgery. Ask which they are and why.
I have a left-sided schwannoma and have severe ear ringing and occassional lip and facial tingling. What did your doctor suggest. My doctor did an in depth balance and hearing test and since no hearing loss they will watch the tumor and may recommend me for gamma knife. I won't elect gamma right away...afraid of facial nerve destruction/drooping.