ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: HCSTARWIND on November 14, 2007, 09:12:11 am
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Hey Everyone,
I just visited a neurologist this week regarding my facial tingling and numbness. My AN is small 5.5x3.9 in the left IAC. I am having another MRI to determine if the symptoms are related to a vascular issue. maybe an AVM, or clot. I am alittle nervous. I can't believe the things going on in my brain! My hearing loss is approx 40% or so because I also have otosclerosis in the same ear. The tinnitus is very bad. At times I come home and sit and cry. I work in a noisy environment all day and then It's quiet at home. I recently started taking Serax @ night to sleep. Wish me luck, trying to stay well informed and positive about all this. I am so glad I found the support here at the AN Asso. Any suggestions or words of wisdom would be appreciated. Alot of you have larger tumors and have gone through alot . Thanks again, Helen
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Hi,
I just had my surgery and I suggest you get in touch with Skull Base Insituite. They will help you!! Do let me know please!!
Sahar
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Hi Sahar,
Hope you are recovering well and thanks for the response. I am scared. I have no real answers. Only this tumor is small . I have so many strange sensations going on in my head. My left face is numb and @ times tight. Where is the Skull Base Institute ? Who did you see? Take care of yourself. I'll pray for you. Helen
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Hi Helen,
Here is the info on skull base. Go to www.skullbaseinstitute.com if you call them, tell them I asked you to call and speak to Roxy. They are in L.A. they do Enodscopic surgery without any risks. Before I had my surgery I was told that I could not walk, I could not see, I could not hear,write,talk and I had 6months to live. Well, I stayed in the hospital for 3 days and I was in L.A. total of 7 days. I went by my self leaving my husband and kids. I did all this and they helped me, they will help you, most of all they are loving and caring people who makes you feel comfortable which to me was very important. The doctor has a wonderful heart.I was big on losing hair, and I have my hair. If you have insurance, then do not worry. I know it is hard, I found out in August and had the surgery on the 7th of November, and look at me now, already on the computer. Sure I am numb on my right side, I have no feeling and my left leg is killing me, I can hardly walk because I was on the left side for 10 hours. The normal AN surgery will last no longer than 3 to 5 hours, but mine was huge tumor and it lasted 8 hours. I blinked and I was out, I woke up at the voice of my doctor. You can call me if you like at 404-372-5596 and write me at Sahar04@aol.com. I know you are overwelmed and no one seem to understand, trust me I know all the feeling. What I hate the most is my face is numb, food falls of my mouth...very embressing. Sahar
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Just an FYI there are always risks with any surgery and if you are being told otherwise then that is just not true. Also regarding your leg pain you may want to have this checked out you may have something other than post op pain due to immobilization going on.
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Hi HCSTARWIND,
I'm not sure where you are located but after being diagnosed, I contacted many different physicians before finally, just recently deciding on CK at Georgetown.
http://www.acousticneuroma.neurosurgery.pitt.edu/ - this site is great and includes all treatment options. Make sure to watch the video.
I also contacted Dr. Melvin Field in Orlando, FL. Since my hearing is only mildly affected, the endoscopic approach was not a good option for me. http://www.floridahospitalmedicalnews.com/news-Neurology-Neurosurgery-id162.html
http://www.nwhgammaknife.com/gamma/about_videos.asp - another interesting video, GK
http://www.cksociety.org/PatientInfo/radiosurgery_videos.asp - CK video
http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/default - Stanford's CK
http://www.georgetownuniversityhospital.org/body.cfm?id=451 - Georgetown's CK
I'm not pushing one option over another. I just copied some of the websites I've saved over the past months. I will certainly be thinking about you and hoping your symptoms lessen.
Sahar,
I'm very concerned about your leg. It's probably related to the lengthy surgery and being in that position for so long. But please contact your physician immediately if you notice swelling or discoloration.
Take care,
Sandra
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Hi Sandra,
I am going to see my doctor today to get the staples removed, and I will have them do an x-ray on my leg. I woke up last night with this huge pain. I am still not able to walk properly. The pain is what really bugs me, they prescribed some heavy pain killer, but I hate taking them due to side effects. I will keep you posted on what the doc says and thanks for the information, I am new at this also, so it helps to learn all this. Thanks, Sahar
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Hope all is ok.
I meant to add another video that it is the one I sent my friends/relatives because it does a good job of showing exactly where the tumor is and how it grows. If you watch the yellow spot, it enlarges showing tumor growth.
http://anworld.com/stages/
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Hi Sandra,
Thank you for the great videos online. I am researching all avenues with regards to this tumor. I feel my symptoms are more progressive now. At times I feel ok, then I think "Its all in your head ,Helen." Exactly! It is all in my head. Please tell me if what kind of symptoms you have experienced. Again thanks for the web sites. Take care. Helen
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My initial symptoms were one sided tinnitis and difficulty hearing. However, hearing tested almost normal. I used to have this pressure feeling like my eardrum was fluttering. Now that the tumor is larger, the tinnitis is louder (although that may be just that I notice it more), that fluttering feeling no longer occurs but has been replaced with a clicking noise. If I do activity such as situps, I can actually feel it shift back and forth. Also I've gotten a bit clumsy. Not dizzy but just mild coordination problems. After reading something on this forum about vision compensating for balance, I put night lights throughout the house. That helped greatly. The clumsiness is worse when I'm tired. The last audiogram showed slightly more hearing issues at high and low frequencies (originally was just with low). That's pretty much it. I've tried to keep a sense of humor about all of this, calling the tumor a little alien and such, but at times it's been difficult. Now that I've finally decided on treatment, some of the mental pressure has lifted thank goodness.
Sandra
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Sahar is your leg swollen and do you have a pulse in your foot? You may want a doppler done. Please let us know how you are. I am just very concerned. Take care Kim