ANA Discussion Forum
General Category => AN Issues => Topic started by: johnsli on March 23, 2007, 10:34:49 am
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I am very new. Just diagnosed with Vestibular Schwanomma. Another name for AN. It is about 3 cm. I have just had the worst week, and am looking for people who have been through this. My first appointment is 4/4/07. I am very scared, and am told this is very normal. I tell people about this and they look at me as though I had two heads. It's not a death sentence. Please chat with me. Need help
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Hi John,
Very sorry to hear you have an AN, but you did the best thing for yourself at this time, writing to this forum looking for answers. I hope I/we can help you in your journey. No doubt you have been looking and reading of the different ways there are in treating your AN. Your best bit of advice will be to become educated, as best you can, in the three ways to treat--1. Wait and watch; 2. Microsurgery; 3. GK/FSR treatments. Go into the different ways to treat that this association has categorized. Write down all questions that come to mind when reading of people's first-hand experiences and take this list to your first doctors' appointment. Someone on this forum mentioned he took a tape recorder and recorded his session. There can be alot of information coming at you from your doctor and the recorder will jog your memory when you are home after the visit. You can then call and ask your doctor more questions you may have. You probably would be doing yourself some good to see a few doctors that treat with surgery as well as, radio-therapy, there is also another surgery route called endoscopy, but I personally do not have first-hand experience with this form, but have read good success stories from others who have. I am two + years post-surgery, during my surgery they removed my left vestibular nerve (where the tumor originated from) in so doing my hearing nerve was compromised, my facial nerve is fine. Before surgery I had issues for many years that could be excused, in the end my hearing went relatively quickly in my left ear, which then led to the test. I am left with, but continue to improve on, balance issues, nystagmus (eyes don't move with head movements), SSD (single sided deafness) no improvements here, occasional dry eyes, headaches in control with one ibuprofen every other week, fatigue from too much stimuli near the end of the day. I have been teaching yoga for a little over one year now (practiced for 9 years prior surgery) and have found a great benefit in my progress with the above issues. The fact this tumor is slow growing will benefit you in allowing you time to make a choice in how you will treat your tumor. The best advice my doctor gave me was, "There is no wrong decision." It surely scared me in the beginning and found it difficult to relax with knowing I had time, all I wanted was for this "thing" to come out of my body. More often than not, these tumors are "watched" until such time the symptoms cannot be ignored any longer and a decision must be made as to how to treat. You will find everyone here more than helpful and knowledgeable. Please write me via email if you want, but there will be so many more of "us" that will respond to your inquiry.
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I was scared when I first found out about my AN also. Don't be despari. We all go through this emotion. As you research more for your treatment options, your fear will be reduced. This is a great group of caring people here. There is also tons of information and experience to help you through your process. I was a basket case for a while but once my decision on treatment was made, I felt much more at ease. This is the most difficult part of your journey. Look at the bright side, it's benign, treatable and you will live!!!
I think there is a cutoff of radiation treatment at 3 cm. Surgery is an option as well. Check with your doctor for the best decision and ask lots of questions.
We are all here for you.
Best wishes,
Mary
Welcome to the board and you are at the right place.
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I am soooo glad to have people to talk to. My family tells me to relax, but, the tumor isn't in their head, it is in mine. I have alot of anger issues, because, I have told my doctor and been treating a problem in my left ear for over a year. He never did an MRI, I had to go to an ENT, who did a hearing test, ABR and an MRI. Less than a week later I find out I have a tumor. I guess anger is OK. I am a singer, so this is very upsetting to me. I have had a problem with my singing. Echoing and tinnitus. I guess I will deal with whatever comes along. I guess I can still sing with only one good ear. I have a question, does the tinnitus go away. It is deafening and extremely annoying.
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Hey John,
Anger issues! Tisk, tisk, boy didn't we all have that one too--you're not alone. This tumor is difficult to diagnose based on the patients symptoms (and sometimes gender as with me I got the hypochondriac, older woman, diagnosis from some) and almost all of us went years with visits to different specialists, tests for this and that, I remember being so certain there was something ominous going on with me, but every diagnosis had me second guessing myself. I can now look back and had I been diagnosed years earlier I would have been told to "wait and watch" as sometimes these tumors just don't grow and you can go years with it (as I did anyway). So please don't be angry for too much longer as you literally don't have room for it. I know with me stress of any kind, anger, physical, joyful, sickness, etc. had a detrimental effect on my symptoms. Stay as stress free as possible.
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Hello singers, I still have tinnitus and more of it post-op. I doubt it will go away for you. We learn to ignore it, say it isn't there.
Pre-op (when the hearing in my AN ear had dropped to 30%) I had problems dealing with other singers in the group who were off pitch, but I could manage.
Post-op I have no tolerance for off-key or bad pitches. Post-op I have better luck singing alone or accompanied by a well tuned instrument backup. I harmonize well and always have done this by ear. I have natural pitch and I read music a bit. Others tell me my singing is the same. Since I started using a bone conduction aid I am better able to hear myself singing.
So, I encourage you to keep on singing, learn to ignore tinnitus. Continue to exericise and enjoy your vocal instrument.
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Hi:
Sorry you were diagnosed with an acoustic neuroma or, as my neurosurgeon always refers to it, a vestibular schwannoma. Here, we just call it an 'AN' for short. However, I'm glad you found this website and these forums. As previously mentioned, there is a wealth of information available on the web regarding this tumor. When I was diagnosed (May, 2006) I went to my computer, pulled up Google© and typed in 'acoustic neuroma'. I was shocked to note that there were over 480,000 sites that had 'acoustic neuroma' as part of their content. I believe this site - the 'official' ANA site, is among if not the best, in terms of concise, accurate information. The message boards are invaluable. This is where folks newly diagnosed and 'posties' - people like myself and others who had an acoustic neuroma and underwent surgery and/or radiation to remove and/or destroy the tumor - can ask or try to answer questions. We collectively try to provide the best answers we can. Of course we're not doctors and cannot offer specific medical advice, but beyond that inevitable restriction, we can usually be helpful because we've 'been there' and can relate and empathize to and with other AN patients.
I can tell you from reading the posts on this board for the past 10 months that many doctors are not familiar with acoustic neuroma tumors. Unfortunately, AN's are often misdiagnosed or simply ignored while doctors play guessing games and diagnose the AN symptoms as anything from 'a sinus problem' to 'whatever'. Only an MRI (magnetic resonance imaging) scan can clearly (and unequivocally) show the tumor, which is relatively small but very troublesome because of it's location. If your AN is actually 3 cm - you need to have that exact information - it qualifies as mid-range and you may be a candidate for radiation treatment. Only a qualified physician can determine that.
The one thing I wish to emphasize is that, for your own peace of mind as well as to give you better odds of a successful outcome to this medical challenge, you must have a surgeon and/or radiologist who is very experienced in AN surgery and/or radiation. Unlike cancer, heart or back problems, an acoustic neuroma is a relatively rare condition. That means that many neurosurgeons are not familiar with it and while they may be well-qualified surgeons, they are probably not a good choice if you require microsurgery. You want to ask any surgeon how many of these operations has he performed and what is his success rate. 'Success' being defined as not only removing the tumor but that the patient did not suffer facial paralysis or other complications, afterward. Your knowledge based on research is your strength in this situation.
Radiation is a bit different. There, you want a radiologist experienced in treating AN's as well as a facility with the latest and best equipment. Again, experience (physician, facility, staff) are crucial. Don't go with the first doctor or opinion you receive. It's tedious but you'll need to schedule at least a few physician consultations and ask many questions. Do not be intimidated by any doctor. This is your life, your health, your decision.
While I often describe treating an acoustic neuroma tumor as a 'minefield', usually, the less the severity of your symptoms 'going in', the better the chances of a good outcome. Usually. Of course, being in good physical condition is a major factor, too, whether you choose microsurgery or radiation. I had a large (4.5 cm) AN and underwent both microsurgery (to 'de-bulk' the tumor...hollow it out) and then, FSR (Fractionated Stereotactic Radiosurgery) to kill the remaining tumor DNA. It wasn't a lot of fun but I'm now just about where I was before my AN made itself known to me via dizziness, imbalance, lethargy, loss of taste and single-sided deafness. I experienced no surgical complications: no facial paralysis, double vision, swallowing problems or CSF (cerebrospinal fluid) leaks. My balance is just about normal and my ability to taste has returned. As my doctor prudently warned me, pre-op, the single-sided deafness remains. However, my 'good' ear has excellent hearing and I find that while the one-sided deafness is a mild handicap, I can deal with it. You will, too, I'm certain. Following my AN surgery, I was home in 4 days. I was driving again within two weeks. I was treated as an outpatient when I underwent the radiation treatments a few months later. They took about 30 minutes a day, five days a week for 5 weeks. Tedious but painless. I'm retired but probably could have returned to my old (desk) job within 3 weeks or less.
When you do your AN research, you'll read of the many things that can go wrong during and after surgery and/or radiation treatments. While complications can and do occur and no doctor can guarantee the outcome of any procedure, if your surgeon/radiologist is experienced with treating AN tumors and you're in good health with a good attitude going in, the odds are that you'll get through this just fine. During your physician consultations and especially if you need to be hospitalized, you'll want an advocate. A spouse, family member or friend who will stay with you and make sure you're being treated well and have whatever you need. It's a tough job and a 'labor of love'. Other posters will offer even more advice, I'm sure.
Your anger, although quite understandable, is really a waste of your energy at this point. Venting is healthy and you're quite free to do that here, but ultimately you have to go forward, not backward. You don't really have the luxury of wasting time being angry over what you cannot change, now. Focus on researching acoustic neuroma tumors, learn all of your options, talk to as many doctors as you deem necessary and finally, come to a decision on addressing your AN that you're comfortable with. Many AN patients come through this experience quite well. I was 63 and had both microsurgery and radiation. I did very well and I hope and will pray that you will, too. We're here to support and advise as best we can. We all wish you the best. Come back often.
Jim
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Hey Jim,
Thanks,
Just so you know, I am affectionately known as Johnson, even though I am a woman. HAHAHA. I am trying to keep my sense of humor. I guess we all go through the anger. I am first seeing a neurosurgeon at Thomas Jefferson Hospital. It is the best neurosurgical facility in Philadelphia. This doctor performs only brain surgery. I am sooo glad to have found this website. My daughter who is 28 found it, she, along with my whole family is upside down over this. I think they just need to chill. I am going to be fine, now that I have a wonderful support group to help me. My daughter's step mom dropped dead at 47 suddenly about seven years ago. Three months later my exhusband committed suicide at her gravesite. Seven months later my husband was in a bad construction accident and was buried in a 20 foot ditch. He has not worked for 7 years, and is just about to go back to work, and now I get sick. I told him that he is not to cancel his plans, WE will survice. I got through that I think I will survive this.
Thank God for all of you. You will be my heros.
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Hi Johnson!
I was recently diagnosed also. My appt with the Neurotologist is on April 3. We are in the same boat as far as the waiting goes. I am in Wyoming where we have no specialists, so I am going to Denver, CO for my appt. I have also contacted House Ear Institute for a consult. I talked to Dr. Fayad on Monday, but he hadn't recieved my MRI disk, so he is to call me back Monday to continue the consult. He thought that by what I had told him, that I would probably need surgury as I am too young (38) for radiation. So, I will wait and see what he says and also wait to see the doc in Denver on the 3rd.
Well, I just wanted to let you know I was here and this is a great support group.
Take care!
Carmen
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Hi female Johnson :D
In line with everyone else to send a hello and a hearty welcome. Thrilled to have you here and tickled your daugther stumbled across us to help you all out. As you can see, we certainly do our best, give our good ears and shoulders if need be and serve up watered down drinks. I'm sorry you all have had it rough, but as you can see, we all do certainly thrive here and know you will too. :)
If you need help around the site, please email me or JoeF (your friendly website moderators) or ask anyone around here for guidance. Some of the info here can be overwhelming to initially absorb, so I usually recommend that you grab a beverage of your likings, sit back, prop your feet and let your fingers do the walking.. or clicking on the mouse, in this case... around.
Again, welcome.
Phyl
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Hi Johnson and welcome to our family. We're here to help calm your fears and give you as much info and support as you need. I am so sorry, you certainly have had more than your share of sadness and pain. I went through something similar with my husband, he went through his own very serious medical issues for almost 2 years (I almost lost him) and just as he was back on the road to recovery, I was diagnosed with an AN. At that time we were in our early 40's. I know what you mean about anger!
First thing about AN's, they are treatable and benign, and that was the mantra that got me through my first few days of diagnosis. It also helped ease everyone around me who I noticed suddenly looked at me differently (two heads) and afraid to talk to me. I quickly noticed that I was the one comforting everyone, but that was actually good for me, because the more I said "Don't worry, I am going to be just fine", the more comfortable and accepting I became.
What are you symptoms? My tumor was 3.5 cm and I did end up losing my hearing. Just remember there are hearing aid options now available for SSD (single sided deafness), while they don't restore what you know as normal, stereo hearing, they do make life easier. Less head turning and saying "what?" I ended up with tinnutus and listen to high pitched bell ringers 24/7 and the louder my environment, the louder the tinnitus. I am generally able to override the tinnitus, so while it is annoying at times, it doesn't interfere with daily life. At night it's either my tinnitus or my husband's snoring.....I'll take the tinnitus :o
I know this AN journey can get scary, confusing and frustrating, so please feel free to e-mail me.
hang in there!!
hugs,
Cheryl
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Cheryl,
I know what you mean about snoring. We sleep in seperate rooms so I can sleep. Thanks for all the support. I am so fortunate to have found such good friends on this site.
Laura
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Hi Johnson!!
Keep up with the humor - It will keep you going strong!!
We have all been there and I echo all the above stuff, including not being too mad at your doctor. There is a doctor on here that had never heard of an AN until he got one (Hi Sam). I went back to my to my GP for my pre-op and it was so obvious that he felt bad treating me for fluid behind the eardrum. If it had not been for my orthopedic surgeon insisting that I get to the bottom of my symptoms so he could do my first hip replacement, I would probably still have that sucker in my head. Thank you Dr. Teynor!!
Anyway, welcome to the forum. Kathy
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Hi Johnsli, Don't get too upset about not getting diagnosed. I have come to see this as a terrible norm with acoustics. I too had symptoms for a long time, was ent to the ER by my doc several times and the ER docs asked em why I was there. It was very upsetting because I knew how ill I felt. This went on for four months until I ended up back in the ER with an ocular migraine (no headache) and they showed some concern. After I got diagnosed by the neurologist I wanted to go back to the ER and tell them how angry I was at their mistreatment and dismissive attitude towards me. even my own doc dismissed me, making up many different diagnoses without any treatment or testing. What a nightmare. Keep your head held high and remain in control. You are the captain of your ship. I wish you the best..
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Hi John, I’m sorry to hear that you have AN.
I had the same fears you are experiencing. But like you it was until I went to ENT doctor that I found out I had an AN tumor in the left side, except he called and told me while I was at work the bad news and I broke down.
When he sent me to my surgeon did I feel comfortable? My doctor said, he’d done a thousand of them and not to worry. And he was right.
er
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Hi Johnson,
I also extend a warm welcome to the forum and I'm glad you found this place early on. These are great people who are more than willing to hand out great information and wonderful support to all who enter here. This is a dastardly thing that has happened to us all, and we've all been through the disbelief, confusion, anger and sadness at our diagnosis. That's certainly normal! It's been a little over a year since my treatment for my AN, and I still sometimes can't understand why I would get such a strange thing like this. But, we learn, we cope, we get our treatment, we move on with our life. We have learned that we have a "new normal" for us now and that there is something each of us has to learn to live with - single sided deafness, or partial deafness, varying degrees of tinnitus, to name two of the most common. Some of us are further along in the journey than others, but we are all learning together, I think. I wish you the very best in your treatment and recovery.
Sue in Vancouver USA
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What Bruce says here is so true. There is so much offered on this site and it helps in so many ways....
Also I am beginning to see so many others diganosed after a bewildering time with symptoms. When I think of the times i went to the Er and even one time when i insisted i had a lump in head and it wasn't followed up on... one time after a ct scan I could see this doc looking at the scan on the screen and i saw him lean fwd all of a sudden staring at it and i thought aha he's found it but then he sat back and relaxed and came over and told me all was fine. In the end, I ran off to a neuro and said well if not's what i think then it has to be ms ? But my neurotologist had also ordered an mri. Truly anger doesn't help. Our enrgy needs to be placed on dealing with it. There is a bit of irony for me too. In the year before An was found i got a couple of other diagnoses which made surgery for me more problematic in that my risks went up, so in a way, it was one of those blessings in disguise maybe.
Wishing you all the best too (as for all the other new aners posting recently.... )
W.
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Hi John!
Nice to see that you found the forum. I didn't find it until two months after my surgery. Great place to obtain information and consolation.
I am a musician as well.
Have you had any dizziness or lightheadedness along with the tinnitus? How about double vision? Chances are that the growth at 3cm has not grown big enough yet to wreak that much havoc.
You'll get though it all. Just try to find the most experienced doctors in this area and keep in mind that it is NOT cancerous. Hope to talk with you later.........it is now 3:40 am!
Paul
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Heh guys,
I have found over the last 24 hours, encouragement, friendship, and hope. You guys are so uplifting. The only problem right now that I have is shouting pains up the back of my neck. Kind of like a migraine, but, sudden, coming and going. They have usually gone away, but, this time they aren't going away. Any suggestions besides IBP, and heating pad. Doctor has said that they are stress related, but, I have had them off and on for over a year. ENT said not related to the ear problem, but, it is hard to believe any doctor right now. Any help
Laura
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Laura, I cannot answer re: your pain but maybe, since it's on the back of your neck, I'm sure stress may be a contributing factor.....
Hang in there!
Phyl
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Hello Johnson and Welcome to this site.
When first diagnosed I felt like you did. But I found this wonderful site. I couldn't tell you anymore or any less than anyone else on here. I can only reiterate what everyone is saying by telling you to talk to as many doctors as you feel necessary. Make sure above all that whichever doctors you talk to are "experts" in this field. Meaning they have experience experience experience.
To help with travel many will accept your MRI films and call you for a consult.
Remember one thing that kinda gets me through all this..... God would not give you anymore than he thinks you can handle or your family for that matter. It sounds like you have a great support group already and that is one very important key to a successful outcome. The most important of course is attitude.
I will keep praying for you and your family to have the courage to complete this journey together. Bless this board for keeping an otherwise insane issue real.....
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Dear Johnson: I am going too give you a different perspective than the other's. I am on my 2nd go around. Had 1.5CM back in 1988-surgery which left me deaf in left ear. In 2005 they found one in my right ear-this one is 2.4CM. Well if I had surgery that would leave me totally deaf. So I opted for FSR Radiation at Johns Hopkins this Past summer. I am now about 9 months out. My recent 9 month MRI shows swelling-which is good and previous scans showed necrosis-which means tumor is dying-also good. However my hearing is so bad now that one sided hearing was actually a gift. Anyway- I found through the years that your biggest supporters are sometimes your least. Example- I told one of my sisters that I may go totally deaf-she says " Oh well-if you do you do". My sister in-law last Xmas told me I need to get out more. So it has become a joke with my wife and I that my problem is that I do not get out enough even though I work a 40 hour job and by the time I get home at 6PM I am exhausted and ready for bed. Huh-at 6PM. You betcha-I get up at 5AM and my body needs rest. Sleep is the healer of the body. Anyway-I feel we are in a quick fix society. So much so that people give you a certain time too adjust and that's it. It just does not work that way. That is why I like this group because people here care and understand. I consider these people my family even though I do not know all of them personally. I am off of my soap box-so Best Wishes-Take a deep breath and stay with us on this forum. You will surviive and manage-Trust and Patience. Thanks-Ron
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Welcome to our elite club! ;) I had a 4 cm tumor removed almost 3 years ago and I think that the most stressful times were before the surgery, so what you are feeling is normal. Stay strong, do your research and things will get better. As for the neck stuff, have you tried medical massage? It might help. I go to a guy locally and it's only $35/30 mins and well worth it.
Good luck to you....
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Hi Laura,
Well stress can make the neck stiff and cause pain, and then there are other reasons too. I was told my neck pain was not caused by the An also, and since i do try to practice stress relief things but the pain would or could still be there and I had some intuitive thoughts about my spine, i asked for a spinal mri. It came back with a number of things found. A benign tumour for which nothing is done really, not supposed to be a problem, some spinal cord compression in various places including the neck, and a few other never-before-heard- of- big-medical-names, along with the general stuff that can show up in a spine due to "old age" haha.
I don't know your history but in mine a few rear enders from some not-paying-attention-drivers gave me a few whiplashes which did contribute to the neck/ back issues.
This may have nothing to do with your neck pains but i thought i'd pass it on as a possibility....
Hope you find out what yours is from and can get some useful way of coping. I never could use heat warming pads on my neck all that much for relief. Sometimes a hot shower on that area has helped. Plus your run of the mill pain management pills etc. but truly giving my neck a rest and lying down helps the best though that can be a boring thing to do.
Ron, that line "get out more (or enough) " IS pretty funny.... haha.., of course i'd feel better gallivanting around haha i really ddon't think i have an An either.... ::)
quick fix? probaby the mantra of modern society... ;D
Cheers,
W.
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Laura (sorry for calling you John!),
Neckaches are very common for people in our condition (ask Joef!) When I had the tumor, I was plagued with a sore neck, radiating from the base of the back of the skull. If you will feel the back of your skull at the base, you will feel that there are two points - almost like nubs - one on each side. I would always be pressing on them and wondering why they were such painful pressure points. I thought that I had a neck subluxation, causing neck-aches, double vision and lightheadedness. I sought chiropractic care - to no avail. I'd describe my symptoms to the chiropractors - yes, more than one - and they'd give me a very grave and concerned look, asking, "Have you had this checked out medically?" A chiropractic solution is an example of wishful thinking. Earlier on, someone said to me, all-knowing and matter-of-factly, "Oh, it's a virus". The better part of you wants to believe these things. I remember asking one of my friends what he made of my symptoms, the double vision in particular. Without missing a beat, he blurted out "Brain tumor". He was right and I knew it, I just couldn't bring myself to admit it. However, I knew - somehow - that whatever was wrong with me was not cancerous.
Well, off to another dinner party! Take care, Paul
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HI Crazycat,
I am really glad to see you write this above as I've had a hard believing that the An is not responsible for some of my neck pain.
There are different kinds of pain and one of mine defintiely seems to come on at same time as some weird head stuff. I figure something in the head is messing with the neck in that area you mentioned.
Sure some real neck things can cause symptoms in neck but i bet the An is having an ipact on mine simply from reading what others have said here too.....
Thanks.
W.
PS enjoy that dinner party! :)
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Thanks everybody, I've had these pains since my ear problems started. It is just more frequent now than before. I tried to relax today, and the headache and neck pain has seemed to be less severe. I'm not going to a dinner party, but, I am a great cook, and just finished cleaning up after a great dinner. Honey BBQ Garlic chicken, Fresh broccoli and a nice salad.
YUMMMIE
Maybe I could through a nice dinner party after I get this mess done. HAHAHA
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Someone told me (I cannot remember which doctor, nurse, chiropractor etc...) that the neck pain could be caused by the vestibular nerve being compromised by the AN. We would never even notice that our brain and good side nerve are trying to compensate for the loss and or misfiring of the AN side. Unconsiously, to stay upright, we are using muscles in a way we never had before.
I had my hips replaced shortly after my AN surgery. I had annoying back pain for years before my first total hip. Severe pain after the first replacement and zero back pain after the second. My load was balanced again, so no back pain.
It sounds like a good theory but I really don't know if it is true. ::) Kathy
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Just got back. Great dinner, very nice people!
That food you're preparing sounds very appetizing Laura!
About the neck-aches. They were constant during the course of my illness. I never had any headaches, only neck-aches (as strange as that may seem). They disappeared after my surgery. But then, that's just me. We all respond differently with symptoms and how we fare after treatment. Chances are though, the AN is the source of your neck pain. I say this only because I've heard others report the same symptom and not just because I've experienced it. It is interesting to note that, by the time I had my surgery and had been released from the hospital and had healed up in a month or two, I had forgotton entirely about the neck-aches because they had long since stopped. It wasn't until I began reading about other's experiences with them here on the forum that I remembered how much I suffered from them. If I reach back and press on those points at the rear skull base now, there is no pain whatsoever.
Paul
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Hi, I had severe neck pain radiating down my arm and thought it was due to a martial arts injury. I saw a chiropractor, had massages, took lots of Aleve, nothing helped. Finally saw a pain Dr. about 7 months later, had a neck MRI, they still didn't see my tumor (don't know how they missed it), several months later started losing my hearing and was getting headaches and my pain DR ordered a brain MRI. My tumor was on my brain stem pressing against my spine and reason for my neck pain. The great news is after my surgery I didn't have head aches and my neck pain disappeared.
I am not a prescription pill taker but after they diagnosed my tumor I asked for pain pills. I apologize I don't recall what kind but they helped me tremendously. I took them for about 3 weeks before my surgery. They did help a lot and after my tumor was removed I didn't have to take anything.
Hang in there, our prayers are with you!
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John,
Anger, been there done that one, you will find peace, I am 8 weeks post op, and I sing our church choir and they tell me I sound better now that I am Deaf in left ear, I can't tell the difference. Good luck at you appointment, go there with a list of questions and get them answered, some advice, if you want is to call ana and ask for their WTT list, talking to a surgery survivor who was 10 years post op and thriving ratcheted my fear level down a few notches and helped me to open up. Also gosh this is a great place to find help and just vent. Expressing your feelings is fine here, many of us have been through it all and can offer tidbits of advice, I have recieved some great advice, there are also inspirational stories here. Hang in there and make sure you are comfortable with your decision whatever it might be.
God Bless,
Steve
:D
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hi,
i am 1 year post surgery, and I can understand your anger. You will experience every emotion under the sun, that is normal. Make sure you have a Strong support system, you will need it. Also do not make any earth shattering decisions untill you have recovered. I moved house 2 weeks after surgery, craziest thing I have ever done. Accept help, love, care, free meals, anything friends and family offer, take it. Try and find extreme patience, recovery can be slow [ hopefully not in your case ] Accept you will be very tired a lot of the time and if you don't feel up to visitors, don't see them. 1 month after my surgery I checked into a hotel and didn't see anyone for 5 days I had room service and i my husband brought food every night, and then he went home. It was the best thing I ever did, my friends thought I was nuts, but you will get inundated by visitors and sometimes it is just nice to be totally alone. I wish I could have afforded to stay longer. Life is different now, I am trying to embrace the new me and all of the changes. I have still kept my sense of humor and I think that has really got me through tough times. A therapist gave me a good piece of advise, " amongst all of this horse sh-t there is a pony " I am still looking for one and I have my saddle ready.
Lainie.
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PONY? We get a PONY? OH Boy! Getting my saddle ready too!
Laura I had excruitiating head pain and was told by the so called "experts" that it could not be caused by my AN. However, When I finally met the surgeon I chose they gave me decadron and my head pains went away. I did not realize until that point that my head was hurting as bad as it was as I was a migraine sufferer for years prior to the AN. The decadron is a nasty drug but one that helped saved my sanity before my surgery. You sound like you've had your unfair share of life and then some. I'm wishing you smooth sailing through all this We're all trying to come your way in July for the symposium so don't be surprised when we all show up for the dinner party :o)
Big Hugs!
Michelle
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Hey guys,
I am really having a bad day. I went to the dr on Wednesday, and I have another apointment with a dr on 15th of May. I have decided to have the surgery. My hearing is so far gone already, that there is not too much to save. I was sitting hear at work and was talking on the phone with my good ear, and I heard a noise and couldn't distinguish it. It was my bosses phone from the other room. I could hardly hear it. I guess I didn't realize how bad my hearing was. I then thought, wow I am going to lose it all after surgery.. I just started to cry. My husband called just as I was in the middle of my meltdown, and as much as I tried to hide it he knew. He tries to understand, but, he can't. He is a fixer, and he can't fix this. I knew that I could write to my buddies on the forum, because, you have all been there. This seems to be the worst 3 weeks of my life, and unfortunately it's not going to get better real soon. I have already lost some balance. (Funny story, my husband and daughter said, not to get stopped by the cops, I won't pass the sobriety test) I am real sorry for boo hooing, but, I just need to vent, I don't like people feeling sorry for me. Just listen to me, let me vent, and I will get over it. I am looking at surgery sometime in June. I want to have my daughter finish school and all of her baton competitions will be pretty much over by then. I know with my friends here and God't help, I will get through this. WOW, I really do feel better. Thanks for listening.
LOL
Laura
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Laura,
Glad to hear you were crying--very normal behaviour. It's the body's way of releasing tension and bringing itself back to neutral. All of this is overwhelming, I am sure this won't be the last time you release, and trying to stop the tears will "stuff" more tension on top of that which is already there. Stuffing stress is not a good thing, so go ahead and have yourself a cry or two. Been there and do do that!
Tell "Mr. Fix-it" there is nothing he can do to fix this, but listening (w/o offering help) to you vent is something he can do. I too have a "Mr. Fix-it" and he's learned if I "shush" him, he knows to just listening. It really helps. I'll be thinking of you and look forward to hearing from you sometime after your sugery--all my prayers to you.