ANA Discussion Forum
General Category => AN Issues => Topic started by: sharibari on March 12, 2007, 12:01:53 am
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:'( I found this website on Wednesday just two nights after being diagnosed. I was doing alot of research on the symptoms treatment options etc. I stumbled across this website and I realize that most people with super outcomes aren't always the ones to go online and talk about it as my doctor warned me about. I have 3 kids and am unsure of the exact size he just said it is approximately the size of a pingpong ball to a golf ball. Not exactly knowing measurements or even thinking of asking him for measurements. I have had issues for quite some time, but was always told by my PCP that I had a plugged eustachian tube and to take sudafed and I would be fine. Well needless to say.....it's not a plugged eustachian tube. I was pretty much told that I should have surgery due to my age and the size of my an. He felt this would be the best recovery and overall outcome. He said that I will lose complete hearing even though my hearing has come back to 50 decibals. He said that hearing could have been preserved if the an was smaller. I am already having facial numbness/tingling and pressure and fullness in my ear and lower head. Some occasional eye aches, unsure if related extreme lathargy and alot of head "cloudiness". I sometimes feel like I don't know what I'm doing or going to say. I lose my train of thought. I am glad I found this website, but I am just extremely angry and worried as the same day I found out my diagnosis, on my way out the door to my appointment to get my MRI results, I informed my employer that I needed to cut back my hours as I felt overworked and very "stressed". They told me that I couldn't and basically would replace me. I then found out that I had an AN and was extremely overwhelmed with the fact that my employer was now going to be replacing me, plus everything.. my kids, my recovery.... I know I just found out and I feel overwhelmed. But we really can't afford for me to be jobless right now either... Sorry for the sob story but I just wanted to vent.. Thanks for listening...Shari
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Hi
You will get lots of support here. My tumor is 22mm, the size of say a quarter. If that gives you something to compare the golf ball, to.
Anyway, yes the knowledge is power and see the surgeon, radiologist, do your reading and ask all questions you want on the forum.
It is hard and I know what you mean about the facial numbness and tingling. I have that also. I did have CK but it's only been three months. (no real change yet) One thing that hit me hard when reading your symptoms, which I have all of the symptoms you mention except the one change, is the fullness seems less for me) I do have water behind the eardrum now since Jan. 1st which is painful. There isn't room in there with the tumor for the water, the doctor mentioned. (ENT doc)
I'm typing this at midnight so, it might not make as much sense as, in the later morning. I need to get back to bed. I wanted to respond to you.
Hang in there and we will be there for you. You will get through this and your health is the most important thing for you now. Yes, you have children and take this one step at a time or it is over-whelming. I don't know where you live or the type of work you do but, you will get there.
I'm supposed to get another MRI and audiologist test in three more months, then the cons back at Stanford, again. It is a long road and you are now in our club. We will help you.
Hugs,
Palace
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Hi Shari...
So sorry that you too have been diagnosed with an acoustic neuroma but the good news is...it is benign and treatable...you will be OK!
Because it is a slow growing tumour there really is no need to panic and to be rushed into immediate treatment. If your AN is not over 3cm then in normal circumstances you do have treatment options available other than invasive surgery. I was diagnosed 5 years ago with a 2cm AN and I am still subject to the 'wait and watch' procedure. Acting upon my neuro's advice and subject to suitable annual MRI scan results, I will remain in 'wait and watch' mode until such time that I must decide upon an ultimate treatment option which in my case will be non-invasive stereotactic radiosurgery. I suggest that you should give this form of treatment your fullest consideration should you be considered a suitable for it.
Be sure that you carry out as much research into treatment options as you possibly can and you have already made a great start by accessing this amazing website where you will get loads of information, help and encouragement on your AN 'journey'.
Remember above all else that your ultimate choice of treatment should be YOUR decision based upon your own thorough research and only the opinions of neuro experts who are specialists in dealing predominantly with acoustic neuromas and who have literally dealt with hundreds of such cases.
Best Regards
Derek
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HI Shari,
I would say that judging by the size of it, it sounds to me unlikely that radiosurgery would be an option. BUT, this said, make sure you talk to experts in the field, one for surgery and one for radiosurgery. Experience is the key in this, go for the most experienced people you can find. You'll find that most good specialists will look at your MRIs if you send them to them.
Surgery for above 3cm ANs seems to be the standard, and yes, loss of hearing on the affected side is the case. I would suggest you find out what the tumour size is, and read as much as you can bout this. This is a good place you have found, with kind people all willing to help. we all had our experiences, and no, not all of us had 'bad' outcomes. Some of us had it comparatively easy compared to others. Either way, this is not an easy thing to deal with, regardles of how good or uneventful the treatment and recovery were.
We're here to listen and glad to be a sounding board for you. Ask questions, somebody is bound to have an answer.
Keep us posted.
Lorenzo
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Hi Shari, I understand being upset with your initial misdiagnosis. A year before my surgery I had pain in my neck/arm thinking it was an injury due to martial arts, was treated by a chiropractor, pain didn't improve, saw a pain dr several months later, had a neck MRI but they didn't see the tumor on my brain stem which was pressing on my spinal cord, was put on Celebrex and then developed head aches and hearing loss. I thought it was due to Celebrex (found that bit of info out on a website) shared that with my pain Dr and he examined my ears and stared into my face and felt I needed a brain MRI (God bless him) where they found the tumor, saw a neurosurgeon the next day and we talked about my situation.
Remember, AN is benign. Find a DR that you trust and feel comfortable with. If you don't feel comfortable with the DR that you saw recently, find another one. I too was worried about my work situation but once diagnosed I shared with my management team and they fully supported me. When I returned back to work I felt so much better.
The side affects are a pain at times but being alive and enjoying my family again is worth all that in the world!! Stay positive, pray and ask others to pray and help you. :D
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HI Shari: I had Cyberknife treatment and the only days I missed work were the 3 days of treatment. I hope you will check out the treatment options and consider all before making your decision. As others have said, it is worth taking the time to fully research your options.
Best Wishes,
Bev
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Hi Shari:
If you saw some of my other posts, I too was diagnosed on Thursday (Mar. 8) with a 1.5cm x 1cm AN on my right side. I had some of the same symptoms as you, but they only appeared within the last month and my ENT ordered an MRI right away. Like you, I am scared, but the more I read and the more I am on this forum, the more I realize that while serious, it is something than can be dealt with and whether its surgery or radiation, we can all move on to lead relatively normal lives. If loss of hearing in one ear is one of the more serious consequences, I can deal with it, if I have to. I am going to start talking to doctors this week and while I know I do not have to rush into any procedure, once I make a decision, I want it over with. Please
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Hello Shari,
You and I had the same experience. A year prior to my diagnosis I was also taking decongestants for an eustachian tube blockage. Sudden deafness as I awoke one morning just prior to halloween put the Dr.'s on the right track.
I just had trans lab surgery on Feb. 13. Like you I surfed the "net" and came to the conclusion that many people that have good outcomes after surgery stop posting in forums like this or stop updating their own websites. One thing that you will find in this forum from folks that still have some problems after recovery and something you should emmulate is their resillience, their fight. The fire in thier bellies that won't let them give up. Once you can be like that you will find some peace and the decisions that you will have to make will become clearer and come easier. It is still good to research as much as possible to prepare yourself for the worst. But you must also work, hope and pray for the best.
So far, one month out of surgery, my progress has been great. My facial fuction is 100%, my vertigo is mild (moderate if I'm tired) and I am taking walks to build stamina back. I'm on track and there is a great chance that you could have a very successful outcome as well. I'm early into my recovery and have a ways to go...but I remain positive and am prepared for a setback (God forbid) should it happen. Afterall, I wasn't perfect before my AN...and I'm still imperfect. Nothings changed.
My best advice to you is to learn as much as you can from the people in this forum and folks that have their own websites sharing their AN experience. Absorb all of it; The good, the bad and the ugly. Also know that everyones recovery is individual. You may have some of the issues during recovery that you've read about...or none.
If you have family and friends nearby that you can share your thoughts and feelings with, do so. A strong support group will help a great deal.
There is a poster on this site named Boppie and several others that had fantastic outcomes and are doing just about everything that she did before surgery. I'm sure that I will have some limitations in the future. I plan on doing all of the things that I have always done...I just might have to adapt and do them a little different.
God bless, and please post often...you have at least one support group right here.
Dan
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I'm so sorry to hear about your diagnoses. I'm 10 months out from my surgery and doing well. I also have children. The best advice I can give is to do your research on the Drs. Ask your Dr. how long they think the surgery will be. My local Dr. told me it would take him an average of 11 hours for surgery. I went with a Dr. with experence and it took only 5 hrs. I just thought I wanted my brain open for the smallest amout of time possible. I had a trans lab. My hearing was already destroyed. I kept telling my DR. about my hearing and kept being told it was my sinuses. After doing my research and talking to different DRs. I decided to go to the House Ear Clinic in LA. I live in TN. The Drs there will also let you send your scans to them and they will look at them and tell you what they think. I went with Dr. Friedman. He will discuss your films over the phone. Just do your research. I truly believe this web site can help make your decisions easier. I hope and pray the best for you. Lana
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Hello Shari,
I am genuinely sorry that you have an acoustic neuroma. You will be in my prayers and in my thoughts daily as you deal with everything that is involved.
As I am sure you will continue to discover, your experience is shared by many of us. In my case, I went to my local Dr. in early August of 06 thinking I was dealing with my usual allergies to cotton ginning season. He thought so as well and treated me for fluid behind the drum. Over the course of the next 2 months, my allergies were much improved but my ear was still "blocked". I took my self to the nearest ENT practice I could find and after the Dr. there spent a litle time with me, he sent me for an MRI. Found the AN which was 3.6mm by 9mm. Went from there to San Antonio to a Dr who was supposed to be among the best in this part of the country. I was not impressed with him but am doing the wait and watch thing while I look for another specialist. My next MRI is just about a month away. Once we have those measurements to compare, I'l have a better idea of which way I want to go and how fast to do it. Hopefully your treatment options will be succesful and no additional problems will arise. Please know you are not alone in this and that we are here for you in whatever way we can be.
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Hi Shari,
I was just diagnosed also. I guess we will be going through this together. Your AN is a little larger than mine, so our treatments may be different. Well, I just wanted to let you know that you are not alone. Take care, Carmen
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Hey ShariBari: on behalf of all the gang here- welcome to Club AN. We hope your stay will be enjoyable. Okay, sarcasm aside, the first weeks by far are the most difficult. And yes, there are lots of patients who have positive outcomes with surgery: Jim Scott, IXTA comes to mind as well as our other buddies who have posted on your thread. Also some of the newbies are doing really well post surgery. All the doctors I spoke to warned me about the websites, that they were dominated by victims.. the more I think about that comment, the more angry I get. Although we have some people that are struggling to regain facial nerve movement in particular, this group is a fighting force to be reckoned with. I think the medical community forgets the "support" in patient support groups- they operate or zapp us but really don't get what it's like to be the recipient of such procedures. My experience was if you really want radio-surgery (radiation) you have to go outside the normal ENT field to get it as the standard protocol is surgery. Having said that, surgery may be your only option, but at least talk to someone who is practicing both types of procedures- that way you really will get an unbiased view and you will be assured that you made the right desicion. I'm sorry to hear about your employer ( perhaps you need to get a lawyer- people can't fire you for medical reasons - I'm in a family business so while my brothers are the experts in employer law, I know we can't do that - hell they would have fired me years ago for being the wacky kid sister if that's the case!).. Take care, it does get a bit easier the more you read over time- Annie PS(worse case you can get COBRA Insurance Coverage).
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Thanks for all the support. I really appreciate it. My office manager is trying to get me to go out on disability even though my Dr. nor I have thought about it. I don't know what is up with her. Well this too shall pass... By the way being a newbie to this diagnosis and terminology, what is translab and what is CK and GK??? is translab the same as cranial base surgery?? Thanks for everyone's time in posting back. My thought are with you all.....Shari
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HI Shari,
Just another AN'er wishing you all the best with your treatment and recovery. I had GK and I'm doing okay. I'd be doing "better" if the symptoms had gone away, but they are still with me. Still, the stupid thing is now officially "dying" and I couldn't be more thrilled. We all understand most of what you are going through and I'm so sorry your employer is giving you grief. Not very understanding, are they? And just to say...they might be able to put you out on "disability" but if you apply for disabiltiy from the SS office, be prepared that that is a journey fraught with problems and not very good odds of having it come out in your favor, and many here can attest to. You do need to have your own lawyer who speicializes in that.
Still, I wish you all the best.
Sue in Vancouver USA
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Hi Shari and Evan:
Welcome!! Sorry you needed to join this club but it is good to have both of you on.
I am almost three years post op and not a whole lot is different for me than before surgery. I did have a radiation consult but was borderline candidate due to placement of my AN.
CK is Cyber Knife, GK is Gamma Knife. Both are types of radiation. Translab is a surgical approach. It does guarantee deafness but gives the surgeons a better view of the facial nerve.
Keep the questions comming. Someone on here will have an answer for you.
Best of luck to you both, Kathy
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Shari -
I'll never forget last June one day after my MRI, I had just gotten home, and my child said that the doctor's office was looking for me. The ENT office told me to get back in my car and drive to their office, where they told me in person I had a tumor the size of a "golf ball." I also had a cyst next to it the same size. I have 4 children, ages 3-13, and all I could think at the moment was, "What about my summer?" I want to have FUN this summer with my family. I had surgery on July 19th, and truly it took me about a month to recover from the big stuff. But my face was never paralyzed from the surgery. Once I started getting out and about, I started to adjust to being deaf in one ear from the surgery.
But for me, I was very thankful in many ways:
1. thankful it wasn't cancerous (Not to minimize AN, but can you imagine Cancer patients who have to go into surgery KNOWING that after their tumor is out THEN they have to do radiation/chemo?)
2. thankful they could get it OUT! (After the initial shock, and once I scheduled surgery with an experienced surgeon, I felt a lot better.)
3. thankful that after looking at statistics that I wasn't going to die from the surgery. Hey, this means I still get to see my children at every milestone in their life!
4. thankful that my surgeon was able to quote HIS personal percentage of successful surgical outcomes with no facial paralysis
I'm not a doctor, but by the size you mentioned, it seems that you will have to get it removed. The key here is finding the very best surgeon. Find one who has removed hundreds of acoustic neuromas per year. Travel where ever you have to go to get the best surgeon. This is very important. If you live next to an expert, then by all means, use him... but please don't use someone who is close to your home just for convenience sake. Please. Please. I know you have children, but you will be much better off if you focus on just getting this thing out by a VERY EXPERIENCED surgeon, and getting on with your life.
You'll be needing several opinions. There are some important things you need to do:
1. Call the radiology office where you got your MRI from, and you can get a CD of your MRI. You can buy a couple of them.
2. Send the CD and MRI report out to a couple of the MOST EXPERIENCED Acoustic Neuroma surgeons in the United States. The surgeons will review your MRI for free, and you'll have an expert opinion. Even if you end up not being able to use them, this information will be valuable.
3. In the meantime, you can still visit some local surgeons too. Just make sure you go with the most experienced surgeon - it can make all the difference in your outcome.
4. Contact the Acoustic Neuroma Association and tell them you were just diagnosed. Have them send you all pertinent pamphlets on your condition. This was VERY HELPFUL to me.
Acoustic Neuroma Association
600 Peachtree Pkwy, Suite 108
Cumming, GA 30041-6899
Phone: (770) 205-8211 or 1-877-200-8211
Fax: (770) 205-0239 or 1-877-202-0239
email: info@anausa.org
I ended up fine. I have no paralysis, and yes, I am deaf in one ear, but I'm okay with it. I still have so much to be thankful for, and I appreciate the things I have so much more.
Blessings to you and your family.
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Shari,
1st, let me say welcome to you. As you can see by this thread, so many of us truly do understand and give great advise, support and shoulders when needed. There is nothing I can truly add to what has been stated here already but I did want to say welcome....
Phyl
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Just got my MRI on cd and found out my an is 2.1cm x 2.1cm x 11cm in length. I also discovered that my husband's health insurance is going to be changing in midst of all my care. What else? I told him to find out regarding pre-existing conditions. sometimes through group plans this is waived, hope so. I have lots of appointments to keep. This too shall pass. Thanks for the ear everyone, you are a great bunch of people....
Shari
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Oops I meant 2.1cm by 2.1cm by 11mm silly me must be my tumor talkin'''''' lol
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Hi,
My AN is similar in size...radiosurgery is probably very possible for you, if you choose to go that route.
Sue in Vancouver USA
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Shari,
Sorry about the discovery of your AN. I hope you are doing better and are less stressed. I don't have much to add, except, anyone able to communicate on the website, I consider a success story. There are alot of really GREAT caring people on this website as you will find, if you haven't already. Vent any time you want, someone at sometime on this website has had a similar feeling or experience. You are NOT alone.
Denise
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Sharibari:
Hi - and welcome.
As I usually say to 'newbies', I'm sorry you've been diagnosed with an acoustic neuroma tumor but, since you have, I'm glad you found this site and this forum. As others have mentioned, although the words brain tumor have the ability to frighten us into near-panic, they really shouldn't, at least in our case. As your research will prove, an acoustic neuroma is a benign tumor that does not invade the brain. It is treatable with surgery and/or radiation. Neither are enjoyable but both treatments are bearable and usually efficacious. I know. I've undergone both - for the same large AN tumor - which was reduced to less than half it's original size via surgery (the 'retrosigmoid approach') then treated with FSR (Fractionated Stereotactic Radiosurgery). My last MRI, in December, showed some signs of necrosis, (cell death within the remaining tumor) just 2 months after I completed my (26) low-dose, daily radiation treatments in October.
I'm one of those success stories you're looking for.
My tumor was quite large (see my signature, below, for details) but I had never experienced facial paralysis or some of the other complications some AN patients suffer with, even though it had - according to the MRI report - pushed my brain entirely to one side and was pressing on my brain stem. Pre-diagnosis, I had lost all hearing in my left ear (the 'AN side') my balance was shot (I walked like a drunken sailor and couldn't walk down stairs without clutching a handrail for dear life). My appetite was affected (I lost 30 pounds) and, although never 'athletic', even when younger, I was becoming unusually lethargic. When my wife finally dragged me in to be examined by my primary care physician, he listened to my symptoms, then confidently told me that I 'probably' had a 'thyroid condition'. A blood test ruled that out. My thyroid was functioning just fine. My doctor (a nice guy) then sent me for an MRI scan, suspecting 'a sinus problem'. Nope. The acoustic neuroma tumor was clearly visible on the MRI scan and he informed me that radiation 'surgery' ('Gamma Knife'/'Cyber Knife') was not an option due to the size of the tumor. He referred me to a local neurosurgeon.
My first consultation with the local neurosurgeon was disappointing. He seemed somewhat aloof and I suspected that he was almost intimidated by the size of my AN tumor. Having done my research, I inquired as to how many of these tumors he had removed. He dithered around and finally mumbled "around 60". At that point I felt that, despite his medical degrees and state license, he was inexperienced in this specific surgery and that he was uninterested in my case. Next!
I soon located an out-of-town neurosurgeon on the recommendation of my wife's neurosurgeon, who had done numerous spinal surgeries on her. He didn't perform brain surgery but a member of his practice did - and he specialized in AN cases. This surgeon, Dr. Ike Goodrich, turned out to be a genteel and very experienced older neurosurgeon who seemed genuinely concerned for my well-being and, best of all, had over 30 years of experience removing acoustic neuroma tumors. When I asked about CSF leaks, he informed me that he used a titanium mesh to seal the skull (not belly fat) and hadn't had a CSF leak in 'years'. I also expressed great concern regarding the surgery resulting in some level of facial paralysis, which was not a symptom I had experienced at this point and certainly had no desire to endure if it were possible to avoid it. Dr, Goodrich assured me that he would employ nerve monitoring during the surgery and would only remove as much of the tumor as was feasible without disturbing any facial nerves, leaving the remaining tumor to be treated by radiation (FSR). Dr. Goodrich especially impressed me when he stated he would accept whatever my insurance paid (I had Blue Cross) toward his fee and not to worry about money, just getting better. I hired him on the spot and he scheduled the surgery for a week later due to the fact the size of my tumor made it's removal imperative.
Now, before any major surgery is performed, many 'pre-op' tests are required by both the hospital and the surgeon to be sure the patient has no underlying medical conditions that might cause an unforeseen problem during surgery. I had all of those tests, including a CT-scan of my entire body, and it showed a 'mass' (a dark spot) on my liver. Oh-oh. While no one said 'cancer', it was pretty obvious that was what it looked like. My surgeon was notified and he regretfully canceled the AN surgery until the 'mass' could be identified. He basically said that there was no point in my undergoing th AN surgery if I had another, even more serious condition that might kill me within months. Oh, being the gentleman he is, Dr. Goodrich used more delicate language - but I got his point. Now I was getting nervous. I was immediately referred to an oncologist who was pleasant and sympathetic but clearly suspected that I had cancer of the liver. My wife was getting pale and didn't say much. I tried to remain optimistic. It wasn't easy. The oncologist ordered a liver biopsy, scheduled for the very next day. We weren't wasting any time, now. That evening, my PCP called me at home to offer what amounted to sympathy. I gently reminded him that there was no real evidence that the 'mass' was a tumor and that I was not going to start writing my will quite yet. He said he understood (but probably thought I was just 'in denial'). No, I was simply being optimistic as well as prudent and refusing to despair or become depressed over something that had not yet been proven. I had the biopsy the next day - it wasn't that bad. I received a (much anticipated) phone call from the now-elated oncologist that evening, informing me that the biopsy showed that the 'mass' was a hematoma - a blood clot. According to this doctor, not worth being concerned about. No treatment was necessary. Everyone was relieved, of course. My wife and I thanked God and started breathing again (so to speak). :) Dr. Goodrich re-scheduled the AN surgery for 10 days later (the earliest he could reserve an operating room) and I prepared for it as best I could. I prayed a lot, bought new PJ's and packed a 'hospital bag'.
Surgery day - June 7th, 2006 - finally came. To make a long story short, the surgery took close to 9 hours and was successful. Dr. Goodrich and his team removed over half the tumor. I came out of it with no facial paralysis or other complications. I had some double vision for a few days but it quickly abated. I was home in 4½ days. It took a weekfor my body to recover from the hospital meds (steroids) and the effects of 9 hours of anesthesia. I spent the next seven days or so either in bed, sleeping, or in my favorite recliner, watching TV and/or dozing. Mostly dozing. Finally, after a week at home, bored and finally feeling more 'like myself', I began getting out (my wife did the driving). My balance steadily improved and I felt better all the time. Two weeks after my surgery, during my first post-op visit with my neurosurgeon, he commented that my recovery level was 'in the top 5%'. I asked if I could begin driving. He said that I could, but to take it slowly at first, which I did. Within a week, I was driving as much as I ever did. Although I'm retired and my only child is grown, I'm fairly active in other pursuits so I resumed my activities and began to return to normal, again. I felt good.
I was scheduled to begin the FSR (Linux) treatments September 11th. I had a 20 minute treatment every weekday for 5 weeks (plus one day) aimed at 'zapping' the remaining AN tumor and destroying it's DNA so it would effectively 'die'. The FSR was painless but tedious. However, I remained resolute and finished the treatments on October 16th of last year. A December MRI indicated the beginnings of necrosis in the remaining tumor so I'm very pleased, as is my wife, son and neurosurgeon. I have a very slight 'dry eye' on rare occasions and a slight numb spot on my tongue and lip, which the radiation oncologist says will eventually disappear, although it could take a long time. I can accept that as my appetite has returned to normal (I'm trying - successfully, so far - to keep excess weight off), my balance is near-normal and I've long since adjusted to the loss of hearing in one ear (the hearing in my functioning ear remains excellent). I'm very grateful that I escaped most of the post-op complications some AN patients suffer. I'm also grateful for an excellent neurosurgeon and my general good heath, aside from the AN, of course.
This forum has other positive stories from AN patients. Although some AN patients with successful, uncomplicated outcomes may abandon this site and the boards, I've resolved to remain an active poster a bit longer in order to encourage and/or advise other AN patients and to present the kind of account I've just written so that newly diagnosed, scared and sometimes confused AN patients can know that this is a treatable condition and one can survive it relatively intact in many cases. It's not all gloom-and-doom. Of course, no one can guarantee anyone else's outcome from surgery and/or radiation but many AN patients do just fine. I firmly believe that a positive attitude and a strong support system (family and/or friends or a combination of both) are essential elements to a good recovery. No, attitude can't repair physical problems but it certainly can make recovery a lot more pleasant. I highly recommend trying to be positive and realize that you have a benign tumor that is completely treatable in a variety of ways. Do not allow your AN to define you. I haven't.
I wish you all the best, Shari and I trust this forum can be another support for you in the weeks and months to come. :)
Jim
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Thanks to all Bruce, Sue, Denise and Jim and everyone else who has responded so graciously to my posting.
I have some let up in stress however the overall concerns still remain. My MRI results showed that the tumor is against my brain stem and that my facial nerves are being effaced. I am seing my doctor again Monday to discuss additional options but will probably opt for the surgery. My husband's new insurance has no pre-existing conditions, thank goodness and everything is paid @ 100% with no copay.Cool huh? As for my work, I do collections, billing and patient accounts for a medical practice and was just told that my services will no longer be needed that I "scared them" when I told them I was going to be looking for another job (this was told to them prior to my finding out my diagnosis) so they then turned to a outside billing company and signed the contract with them, so I will no longer be employed effective the end of March. Bummer. I am not too mad. I was honestly going to change jobs before I was diagnosed. But this is awful timing. But it could be positive in the same respect. I will have time to get prepared for my surgery, further research and just spend time with my family. This has been quite a month for me! Well everyone who has supported me I thank you for sharing your stories....You all are very brave and caring people......
Shari
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Bruce,
Thanks for the positive input. It will be for the best in the end in regard to my employer. As for my treatment, I meet again with my doctor I think on Monday and will find out more then. I just have alot of symptoms which I am sure most of you have too. But it is scary to know exactly why these things have been happening and releived in the same respect to know finally why you were having these problems. eh? :D
Well I will for sure keep up to date on my progression as it unfolds.
Take care........
Shari
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Shari I've been away from the boards for a few days as I just started an online MBA program and am feeling overwhelmed. I did not read what everyone else wrote but wanted to welcome you to our exclusive little club and tell you I'm sorry you are joining us. Question for you regarding your job. Did you tell them prior to your diagnosis you were leaving? Or did they decide after your diagnosis you were leaving?
My brain stem was involved to and I had a lot of the symtpoms you described. My best advice is to avoid stress as much as possible which I know with everything going on is probably next to impossible. Just remember to take a few minutes a day to do some deep breathing and relaxing! Bubble bath by candle light will do wonders for you! If you're experiencing headaches don't let the docs tell you an's don't cause headaches as it's not true. I had horrible head pain prior to my diagnosis and after I chose my treatment team I started decadron which helped tremendously with the pressure just don't count on sleeping. Also, NO ROLLERCOASTERS! Please know if you have any questions I'll gladly answer them just shoot me a PM (private message) if you want a faster answer.
All my best to you,
Michelle
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Hi Shari - I received your e-mail regarding Dr. Roberson, I hope you got my reply.
hugs,
Cheryl
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Shari,
We have all been through the initial “shock� of the Acoustic Neuroma (AN) diagnosis… we all can definitely relate. As you’ve read in many of the posts here…AN’s are NOT cancerous and they ARE survivable. As with anything that faces us in life, education is the key. I found that the more I learned about my AN…the more comfortable I felt about choosing a treatment path that I felt comfortable with. You are absolutely right about how those with great results don’t hang around to share their stories of good fortune… but that is not necessarily a bad thing…this means that good results CAN and DO happen!!
Having a AN will give you the feeling of having a “minor� in medicine…I talk to my doctors on a level of better understanding since my research. They see me as an educated patient, and feel better relating to me…without the usual “don’t scare the patient� approach given to the general public. I would recommend going to Barnes & Noble (or the library if money is tight), and getting a book on the anatomy of the brain (with the nervous system). This will help when you research and to better understand your docs, and the research that you do. Go to your nearest BIG hospital and ask to have access to their medical library for research. They will have current articles, journals, and studies. You will quickly learn that there is much repetitive info out there on the web. Info older than 7 years is great for background info, but try to get current info to make your treatment decision off of.
Try not to panic, surround your self with friends (and cyber friends…like here), and family. Do some research, ask a lot of questions, take a friend/relative to your appointment so they can take notes for you…become knowledgeable about you’re AN. There are many people on this site, who have had all of the various types of treatments. Ask questions…vent…share how you feel, it’s what we all do. Welcome, everything’s going to be OK. :)
Gary
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Thanks to all. You are all very inspiring. I will now have time to be with my family before surgery since I am being replaced at work. They claim it isn't because of my diagnosis but I often do wonder. It's all for the best though, I wasn't happy there any longer anyway. I am going to forward my MRI to House Ear Clinic for a second opinion. I have spoke to another person on this forum who used the same doctor and she can't say enough nice things about him. Which is the impression I get from him as well. Again thanks and Will be speaking with you all in the near future.
Shari
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I too am a mother of 3 and had a lot of your symptoms. Stay strong.......
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Shari,
I was numbed by my diagnosis, but was buoyed by using the ANA WTT list that they can give you on request, it is a list of patients that have been through treatment and are Williing To Talk about it I found a Mom near me who was 10 years post op and she was well, and that gave me such hope, your tumor is little bigger than mine but I lost my hearing during surgery and had a cerebellum injury during surgery, but, my face is back and I can whistle and make fishie faces at my little girls again and my tumor is Gone which is a huge relief, mine was pressing n my brain stem and well OUCH! So glad it's gone (along with it's searing painfulness), the size of your AN probably will make surgeons steer you to the OR, but I have heard of good results with radiation for patients like you, Look around on the site here. Surgery is not a walk in the park, but in my case I am glad I did it, it was that or possibly lose left eye function (resolved), permanent Billy Idol lip twitching (wife was not attracted to it even when I put it in those terms)(resolved as well),Threat to life (resolved), Pain (resolved), walking like drunken sailor (resolved, after two weeks of in-patient rehab). After almst 8 weeks post surgery, I got on a bicycle today and rode down the street while fooling noone that I was lance armstrong adn am able t change my 14 month olds diapers again Yipppeeeee! Seriusly Best wishes and God Bless on your new journey, if it has happened to an AN patient, I have seen it here, so peek around.
Cheers,
Steve
BTW- if you need to talk I will talk to you and If your spouse / significant person needs tips, my wife thinks she has some.... Send me a message, I will forward my number.
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Well, I've been off the grid adjusting and coping and spending time with family. The surgery Is now only 17 days away. I am getting anxious but trying not to at the same time. I have decided to go with translab, to me this is the choice I want to make. The thought of being single sided deaf is a bit disturbing, however I am experiencing it off and on now anyway. It will just be a definite . I decided to go with the baha afterwards. I want to thank everyone for the advise and support and I will try to update after surgery to let everyone know how everything turns out.
Thanks again for all your support,
Shari
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Shari,
You are going to do great! Sending MAJOR huggles to help keep you strong during this waiting period... and know that I am cheering you on for wellness and a speedy recovery.
Phyl
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Hi Shari...
Very best wishes for your impending surgery....and you will adjust OK to the single-sided deafness as nature has a way of dealing with that. Indeed I hardly ever notice mine at all these days.
Best Regards
Derek