ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: BeckyMax on February 11, 2012, 10:21:05 am
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Hi everyone, first let me say that these forums are so so helpful. After experiencing hearing loss in my left ear for several months which I attributed to allergies, I finally saw an ENT about 2 weeks ago. My hearing test did show some loss, but the ENT said the loss was not as great as I perceived and was probably due to a virus, and that I really had missed my window on steroid treatment. I resisted saying I thought it was worse than that. He then suggested an MRI. I nearly cancelled the MRI, thinking it was unnecessary and that he ordered it just to appease me. My husband was in a car accident last year and we have spent the entire year dealing with his recovery and the medical bills, I didn't need a bill for an expensive unnecessary test, particularly since our deductible had just reset, and I have actually dropped off his plan and am insured by my own company's lower coverage plan (big mistake!, we thought by dropping me, the healthy one, we could increase he and my sons coverage to his companies premium plan and everything would be fine). Anyay, to my shocked the doc called on Sat and told me of a 5mm x 7 mm AN on he left side.
Holy cow, not at all what I was expecting, and now the fun begins. The night of the MRI, while talking to an acquaintance I found out she worked for an ENT. I quickly called her to get recommendations from her doc on other doc. I have appts scheduled for next week and the following week with 2 different docs. I also plan to send my records to House for an opinion.
Symptoms are hearing loss, occasional tinitus and fullness feeling. At 5mm x 7 mm, I'm hoping for watch and wait and then to add myself back on my husbands insurance in January.
Medically, there are the facts, emotionally....wow, so many things running through my head, silly, but I always wanted to get certified to scuba dive. My son was certified a few months ago and I was waiting till my husband was ready, which we expect would be sometime this year. Don't know how this will affect that. I turn 40 next week, and have been feeling the need to do something, accomplish something such as the scuba cert or a backpacking trip. This is not now I intended to spend my 40th birthday. But I'll go with the flow, research and be diligent. There is a support group meeting today, YEAH! Life has thrown us alot of challanges and we always persevere, this will be no different.
Becky
5mm x 7 mm AN Left Ear
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welcome Becky,, and wow what a story.. but your attitude is great and that will be a big part of your journey,, you have been through so much already,, you know how to handle adversity.
As small as your AN is, and no more symptoms than you have, you should be able to w&w for long enough to do many of the things you are wanting to do.. I am not a Dr though,, so take their advice,, not mine :)
good luck and keep us posted as this is a great forum to vent and talk and research and get help.. Good luck Jane
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Hi, Becky, and welcome to the forum. Thanks for posting.
There is no reason why you can't do a backpack trip while you're in W&W mode. And depending on the type of treatment you eventually choose (assuming it even becomes necessary; some tumors never grow), you should be able to go backpacking within several months following treatment. As a backpacker myself, I know this to be true.
I must say I admire your attitude. I was a complete train wreck for about two weeks after my diagnosis. With an attitude like yours, you're going to do great. And the fact that your tumor was discovered so early gives you a huge advantage on many levels (health maintenance, time to research your options, etc.).
With a tumor as small as yours, there is no need to rush into treatment. It makes sense for you to first have a followup MRI in six months to be able to tell if the darn thing is even growing; some ANs don't grow at all over the course of 20 years, although this is uncommon. Should your hearing, tinnitus and fullness symptoms worsen, however, I recommend you get two or three expert opinions on the wisdom of waiting before receiving treatment, tumor size notwithstanding. That's because you don't currently have any imbalance symptoms, and you want to keep it that way. The vestibulocochlear nerve (the branched nerve that comprises both the vestibular-- or balance -- nerve and the hearing nerve) is quite sensitive to irritation and pressure from a tumor, which is why your tiny little AN is already causing so much trouble for your hearing. The balance portion of the vestibulocochlear nerve is situated just above your hearing nerve. So what is now affecting your hearing nerve is likely at some point to affect your balance nerve, too. An increase in your hearing-related symptoms could possibly mean increased pressure on the vestibulocochlear nerve, which could at some point lead to balance issues. Treating the tumor could possibly prevent balance issues from ever developing. But it could also irritate the balance nerve and precipitate the very symptoms you're hoping to avoid. This Catch 22 is why, if your symptoms increase, you should get a few expert opinions on whether timely treatment is your best course of action or not.
In the case of surgery, the anatomical continuity of the balance nerve can be completely preserved and yet the function of the balance nerve can be compromised (by the stress on it caused by cutting away any portion of the tumor that is adhering to or wrapped around it). According to esteemed doctor Steven Chang (Stanford University Medical Center), however, CyberKnife radiation treatments (CK) are not likely to cause new symptoms you don't already have (e.g., imbalance problems) but may exacerbate those symptoms you currently have (fullness in the ear, tinnitus and hearing loss) if only usually on a temporary basis.
So you can see that you can never predict with certainty a win-win outcome with these risky treatments, although some outcomes -- mine included -- are phenomenally successful. You want to use the best judgments of the best doctors regarding if and when to treat. But do keep in mind that any increase in your symptoms should impel you to seek immediate advice vis-a-vis fully preserving your currently intact balance functions.
Again, you're way ahead of the curve, seeing as your tumor is so small and you have no balance problems currently. You are highly likely to have a terrific outcome to all this as long as you do your research and get at least 2 or 3 highly qualified opinions. Btw, Dr. Chang will review your MRIs for free and give you his free recommendation. He is both a CK practitioner (perhaps the most experienced CK practitioner in the U.S.) and a neurosurgeon. His email address is sdchang@stanford.edu.
Best wishes,
TW
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P.S. Another doctor who will review your MRIs and counsel you by phone for free is Dr. Derald E. Brackmann, world-renowned neurosurgeon at House Ear Institute in California. You should seek his recommendation, too.
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Thank you both for your kind words and encouragement. Although it seems I am doing just fine, I can relate to
the trainwreck feeling you speak of, my emotions are like a roller coaster, I choose my top of the hill moments to read and post and my ruuning down the hill moments for crying :) I feel as though I have just lost a part of me that I will never get back. The scuba certification has been my lifelong dream, get certified, go to Australia and dive the barrier reef. With all that I am finding I don't think I would even consider attempting it, even if given the go ahead fro my doc. I would just not want to take the risk.
Time to find another dream I guess.
The support group was wonderful, I left there feeling great, then came home and read over info I got there and down I go. Dinner at Red Lobster....left while waiting for a table, just couldn't do it. Wednesday seems like an eternity away, i realize my tumor is small, but still would like to hear docs opinion asap. Patience is not my virtue.
Becky
(Where do I create the signature line you are all using?)
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(Where do I create the signature line you are all using?)
Just above this (or any other) thread, there are menu selections: from left to right, they are Home, Help, Search, Profile and so on. Position your mouse over "Profile," and a drop-down menu appears. Select "Forum Profile." A form appears, in which you can type in whatever you want to appear in your signature line.
As for the roller coaster ride, it gets better, Becky. It's really really tough right after being diagnosed, but I promise you that you will get a firm footing again very soon. I thought my life was over after getting diagnosed. Now, life is great.
Don't give up your dream of diving the barrier reef. As far as I know, there is no medical reason for you to forfeit that dream. Your doctors can tell you if it's a potential problem, but I doubt it will be. When I fly at high altitudes, my ears get terribly clogged up, and yet the pressure doesn't bother my AN at all. So I doubt diving would either.
When I got treated for my AN (with CK), I asked one of Dr. Chang's nurses what I should and shouldn't do afterwards. She said to me, "Live your life. The people (with ANs) who fare the best are the ones who just go on living a rewarding life."
Don't give up your dreams. There is absolutely no reason to!
Best wishes,
TW
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Hi and welcome.
I have to concure with the other comments, never give up on your dream. My husband and children are all scuba divers, I however am not, because my ears do not equalise themselves. I have to have tubes in all of the time to help with the pressure, unless this is an issue, I don't see why you couldn't scuba dive.
As far as the size of your AN, I think that it depends on where it is sitting as to symptoms. And yes it is so hard not to let it run your life. It does get easier.Some days it runs my life due to symptoms, sometimes I can go weeks, but knowing what you are dealing with helps and this forum is a god send.
Go scuba diving, at least go for a tri dive and see if you want to pursue
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I tried to go Scuba diving a month ago, but the health declaration that you need to sign would stop you unless you have a medical certificate.
ie do you have a brain tumour, or balance problems.
You will need to get a clearance from a doctor before you can go.
If you have clearance its all good.
No reason I can think of as to why you cannot Scuba Dive with an AN
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According to esteemed doctor Steven Chang (Stanford University Medical Center), however, CyberKnife radiation treatments (CK) are not likely to cause new symptoms you don't already have (e.g., imbalance problems) but may exacerbate those symptoms you currently have (fullness in the ear, tinnitus and hearing loss) if only usually on a temporary basis.
Best wishes,
TW
After re-reading what I wrote, I have to correct one part of it: After CK (or any type of radiation treatment), you may experience additional permanent hearing loss. Some patients do, others do not. I was thinking of increased balance issues when I wrote that; they are almost always temporary. Again, since you don't currently have balance issues, CK is highly unlikely to cause them.
It is unclear whether the CK recipients who suffer additional hearing loss do so because of the radiation or because of the tumor. Radiation doesn't immediately kill a tumor; that takes many months. It's the radiation's damage to a tumor's DNA (and it's blood supply) that kills it, because the tumor is unable to undergo cell division and continue to grow. That process takes awhile, during which time the tumor is still alive -- though dying -- and may be the cause of further hearing loss. It's possible that a CK patient who loses additional hearing might have lost that hearing over the same time period even without treatment. Nobody can say.
Sorry for my partly inaccurate statement.
Sincerely,
TW
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I met with a Neurotologist on Wednesday and he advised me exactly as I expected, to wait and watch. I left his office feeling very relieved but as the week ended and I approached my 40th birthday on Saturday, I started really feeling down. This is just so much to take in. I know I don't need to make any decisions right now, but it is so difficult just knowing that I have this tumor in my head. We had a weekend getaway with some friends and I ended up coming home about 6 hours earlier than planned, I just didn't enjoy myself and couldn't understand why everyone else seemed to be having so much fun.
I'm seeing another doctor tomorrow for a second opinion, maybe I'll feel better after that.
Glad to have some place to express my true fears and know that you all understand.
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Hi Becky .....
You are describing exactly what many of us felt upon learning about our ANs ..... after the shock of the initial diagnosis.
It truly changed my viewpoint on life, at many points. The important things in my life shifted quite noticeably (to me!). I was one who could not have waited and watched, knowing that "thing" was growing in my head. But, not everyone is like that and I respect that.
All that being said, did you ever send your MRI CD to House Ear Clinic for another opinion? If not, you should. It will help you to make an educated decision. You are under no obligation to do what they recommend.
It is your body and your life. Only you can make the decision on what to do. Many thoughts and prayers during this very difficult decision-making time.
Clarice
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My second opinion didn't go as planned, he advised surgery. Although I had been told ahead of time that his reputation is to operate i thought that certainly with the size of mine, that wouldnt be the case. Already I'll from a head cold, I was really stressed and depressed after this appointment. Pretty much stayed in bed for 3 days, sleeping, crying, researching. Made an appointment with a third doctor and saw him on Friday. He totally disagreed with doc #2. He set me at ease and I've decided to watch and wait. My outlook today is so much better. I hit the gym last night and this morning. I've booked my scuba trip on our upcoming cruise, which all 3 docs have said is OK. I've decided to let doc #3 follow my case. Dr. B is a surgeon, stated that he is so and that he makes a living doing surgeries, but he also does not advise a surgery that will leave a patient worse off than when they started. Being that my tumor is so small and that I have only slight hearing loss as my only symptom he would not recommend undergoing such an invasive procedure at this time, and even if it grows and becomes more symptomatic he would recommend radiation over surgery. He went on to say this would be his recommendation if this were his wife.
I love Dr. B! He said everything I was feeling and clearly is a good fit for me.
(Wondering now how my insurance company is going to treat these 3 appointments)
Becky
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Being diognosed with a 1cm AN approx. 5 years ago at 58 really changed my way of thinking. I just do everthing to the MAX (especially health orintated things). At 63 and stable W+W, feeling pretty good retired I have NO boundrys. I attribute my well being feeling (under the circumstances) to Just DO It approach. Wishing the best for my AN family, Mickey
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(Wondering now how my insurance company is going to treat these 3 appointments)
Becky
So sad that we have to worry about such things! I saw a local neurotologist, another at MEEI, the chief of neurosurgery at MGH, and Dr Plotkin at MGH - and my insurance paid up without any trouble for all four visits. Hopefully yours will pay up as unquestioningly too!
Susan
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Mickey, so true! I really do feel as if this has been some sort of wake up call. I had already started working on my health, exercising and eating better. I was down 16 lbs. I now feel, motivated to keep going, trying for another 9 lbs.
Susan, that's good to her. I've only been on this job for 5 months and have not used my medical insurance at all yet, other than for a prescription.
I'm doing well and want to thank everyone for their support.
Becky
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BeckyMax
I too have just been diagnoised with AN in the left side. I am a avid diver & with the water warming have a trip planned. Unles the Dr on my 3/28 visit says otherwise I'll let yo know.
Don't let this interupt your dreams!!
I'm 54 and in 08 had a hell of cancer scare. I survived that and plan a long & health retirement in the future.
Prayers be with you and keep your faith.
Craig
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Craig, you posted this 2 days after my dive. I did it!!!! So glad I did, I replied on your thread as well.
Becky
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I identify with many of your feelings and concerns. Like you, I am staying physically active and it gets my mind off things. I too am watch and wait-I had two opinions,and both were to watch and wait until August MRI. I do have an ABA April 18th and I wonder if that will tell us more about whether to watch and wait. Only one of the ENT's ordered that, though.
Carry on! Millie
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I do have an ABA April 18th and I wonder if that will tell us more about whether to watch and wait.
Millie, did you mean an ABR (auditory brainstem response) test? If so, that will tell you how well your hearing nerve is conducting impulses to your brain stem. Knowing that, your doctor will have a better idea of which treatment would best preserve your hearing (if you still have useful hearing on your AN side). Typically, people who have poor ABR results will lose all their hearing during surgical resection. If preserving your hearing is of primary concern to you, an ABR test is all the more important.
Best wishes,
TW
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Yes, TW...I had an ABR on April 18th, but I have not yet gotten the results. The doctor who gave me the ABR said my tense muscles were sending electrical impulses that interfered with the test and that probably happened to me previously at Mt. Sinai when I was told the machines weren't working properly due to building consruction. (They are very sensitive.)
The same day my husband was found to need a laminectomy and spine surgery, for which he goes to Hospital for Special Surgery May 4. Somewhere down the line, he will have his aortic valve replaced.
No word yet on the ABR results. I have been gardening like a mad woman which is good for me as it keeps my mind off things but now suspect I have poison ivy. I am about to go to the therapist then take my mom (90) to her oncologist. I am praying my wonderful son, college grad, layed off salesman, gets a job soon. I have not been able to see my grandkids lately due to other appoitments-and they are the light of my life.
I am trying to stay positive. I notice the ear ringing and fullness a lot, then, maybe when I am quiet, it seems not so bad. I think I can deal with hearing loss since I seem to have it already. Now I am worrying maybe I will get more bad news. What else can they tell me about my ear? However I did spend Sat at a women's retreat so as I said...I am trying to be positive and control those thoughts!
Sorry to vent but sometimes I get tired of all this "stuff."
Hoping today is a good day-for us all...
...Mil
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Millie, I can so relate to all that you are dealing with.....like reading my own post! Be sure to post back you ABR results.
Becky
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BeckyMax and everyone:
I have not been on the forum until today May 11th because my husband, instead of spinal surgery, had a quadruple bypass and his aortic valve replaced. Last night was my first night home and I am doing bills and trying to catch up. I am going back to the hospital where he has been for ten days and he hasbeen moved out of intensive care and should be home newxt week. For those with heart issues St. Francis in Roslyn L.I. is the place to go.
I am fried.
I have not gotten the results of the BRA hearing test so I called the doctor's office and asked to please be updated. My blood test when I had the poison ivy revealed elevated liver enzymes but I don't know what to think about that; I have not had a glass of wine in almost two years. Honestly I am so weary and afraid of talking to another doctor!
Sometimes my symptoms seem worse I think it is the stress and being tired. Just wanted to explain why I have not been around.
Praying for us all...Millie
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Wow Millie,, when it rains it pours huh???? Bless your heart,, and your husband,, I sure hope he is out of ICU and recovers without incident...
Elevated liver enzymes can be many things and they can change daily.. you may be referred to a gastroenterologist for futher testing,,just what you want I am sure,, but not always a "big deal',, but I am not a Dr either....I am sure you know stress can alter so much in our lives too... TRY to relax some and not worry about it until you find out there is anything going on...
Our prayers are with both of you.. Jane
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BeckyMax and everyone:
I have not been on the forum until today May 11th because my husband, instead of spinal surgery, had a quadruple bypass and his aortic valve replaced. Last night was my first night home and I am doing bills and trying to catch up. I am going back to the hospital where he has been for ten days and he hasbeen moved out of intensive care and should be home newxt week. For those with heart issues St. Francis in Roslyn L.I. is the place to go.
I am fried.
I have not gotten the results of the BRA hearing test so I called the doctor's office and asked to please be updated. My blood test when I had the poison ivy revealed elevated liver enzymes but I don't know what to think about that; I have not had a glass of wine in almost two years. Honestly I am so weary and afraid of talking to another doctor!
Sometimes my symptoms seem worse I think it is the stress and being tired. Just wanted to explain why I have not been around.
Praying for us all...Millie
Millie,
Sorry for all of your troubles. I will keep you and your husband in my thoughts and prayers.
Liz
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Hi Becky,
I'm sorry to hear about your diagnosis. Others have covered a bunch of topics here, but I want to chime in with an encouragement to keep living your life exactly the way you want to live it. IMO, there is NO reason you need to change your behavior because of this. Just keep tabs on your symptoms and monitor your tumor responsibly... these tumors, especially when small and not pressing against the brainstem or some other absolutely vital structure, pose exceedingly little danger to you.
My illustrative example: I was diagnosed with a very large/giant AN this year (avg diameter 3 cm, largest diameter 4 cm -- way bigger than yours). Obviously this has been there a long time. In retrospect, I started noticing a feeling of fullness in my ear 4 years ago when I was 30 years old, so this thing has been around since then and probably a very long time before that. I've not been limited in any way, in spite of the size of my tumor. So don't think that this tumor means you've got to stop doing the things you enjoy!
Sean
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Thanks, Sean, I've had many days of feeling sorry for myself, I'm done with that for now, my husband suffered a pulmonary embolism on Monday, could have died from it, my problem is so minimal compared to that. As they say, it can always be worse, even with what we are going through with him we are reminded that others are in worse shape than we are, guess it took this for it to really mean something to us.
Becky
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Thank you for the information. I have also just recently been diagnosed with AN, after noticing marked loss of hearing in my left ear in January. MRI in March and a visit to House in April. On the watch and wait process until October when I have another MRI. My neurosurgeon stated is was the size of a grain of rice. Experienced some tinnitus, basically a drone sound with some clicking until May 3rd. Now it is a raging river with many crickets and sonar pings in my head and next to no hearing in that ear. Sleep is almost null. Has anyone experienced such a drastic change so quickly?
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Rondyone, it's common for such sudden changes in hearing and tinnitus to occur. Hopefully you told your doctor about the changes and they prescribed steroids for you to try to regain your lost hearing. Taken more than 24 to 48 hours after the hearing loss occurred, however, steroids are a lot less likely to be effective. That said, before I was treated I had multiple bouts of sudden, partial hearing loss, and I always got back most (but usually not all) of the hearing lost during the most recent episode within a couple days, without steroid use. You too might recover some of your hearing spontaneously.
You should always tell your doctor about sudden changes such as you've experienced. They may be cause to seek treatment on an expedited basis (not because your life is in danger, but because it might save your hearing or other important cranial-nerve functions).
Best wishes,
TW
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Thanks TW
Have an email into my MD - waiting for his reply.
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Hello everyone and Becky Max-
Becky- I can't believe your husband had a pulmonary embolism while you are trying to deal with your AN. Thank God he is recovering. As you may or may not know, my own husband, Tom, was diagnosed as needing a sudden quadruple bypass and a new aortic valve while undergoing a catheterization (heart) to get cardiac clearance for spine surgery. So he had open heart surgery May 3 at St. Francis in Roslyn, L.I. instead of spine surgery (scheduled for May 3rd) at Hospital for Special Surgery in Manhattan.
Yes, these life-threatening experiences only make us appreciate every day even more. Tom could have had a heart attack at any time; his only sympton was tiredness and loss of appetite and lethargy-which he attributed to the spinal stenosis back pain. He had no chest pain or shortness of breath but two arteries were completely clogged , a third was seventy per cent and I don't know what the fourth was.and his aortic valve was shot. So they shipped him to St. Francis after the catheterization at St. Catherine's. St. FRancis is a noted heart hospital here on Long Island. I stayed at various hotels near the hospital until he got out of cardiac intensive care-about nine days.
He came home May 14th and so I have not been on line. However he has been doing better every day. The physical therapist has come three times and we go to various doctor tomorrow and next week. Like you, I am considering us blessed now that the big crisis is over. These events make us do so much soul searching.
As for our own ears and their issues, I guess we are also blessed if all we have to deal with is hearing loss, ringing, and strange feelings in the head. That feeling of pressure. I did find, and maybe you did too, that at the end of a long day at the hospital- for example, surgery day, my ear was buzzing out of control and the pressure-feeling was relentless and I could not wait to get back to my hotel room to lie down at 8 oclock. I think stress makes our symptoms worse.
Tom is home now, thank God and progressing slowly but surely. I usually put my feet up for an hour from about 3:30 to $:30 and it seems to help. I notice that when I arise in the a.m., and all is quiet, my ear is feeling almost normal too. However sometimes, I am walking along and the balance thing happens. Not that I fall but I know that I did not have these head issues last year-only a little hearing loss. Then I was diagnosed this past February. Then LIFE HAPPENED some more!
Oh-and I heard from the ENTon the way to the hospital one morning. I called him because I had not heard the results of my ABR hearing test. He did get back to me-He told me that according to my ABR, I would lose my hearing from surgery or treatment. The issue of blance and feeling out of my head MIGHT be helped, but no guarantees. He told me to have another CAT? MRI of my head in July and see him in August. So I think I will deal with this just fine, in light of the heart issues that our poor husbands have had.
So stay strong, Becky. And thank you to everyone for their compassion-we are in each other's prayers, I know. God hears us.
Love, Millie
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Oh-and I heard from the ENTon the way to the hospital one morning. I called him because I had not heard the results of my ABR hearing test. He did get back to me-He told me that according to my ABR, I would lose my hearing from surgery or treatment.
Millie, I don't know the particulars regarding your AN (size, location, etc.), but it's possible that radiation might save your hearing. I say this because my ABR test results also suggested I would lose all my hearing on my AN side if I had surgery. (6 out of 6 AN specialists I consulted with concurred I would be SSD.) So I chose CyberKnife (CK) radiation treatments. Almost 4 years now after treatment, I still have very useful hearing on my AN side.
One of the doctors who recommended I have radiation instead of surgical resection was Dr. Derald E. Brackmann. He is a famed neurosurgeon at House Ear Institute. He usually recommends surgery for treating ANs, and he doesn't personally practice any form of radiation therapy. But because my ABR test -- which he impelled me to get while I was in W&W -- returned such poor results, he recommended I avoid surgery and have radiation instead so that my hearing might possibly be saved. (He recommended GammaKnife, but I chose CK, which is very similar.)
Your situation might be different than mine with regards to radiation being a viable alternative. But if you are concerned about preserving your hearing, it would be worthwhile to consult with a couple radiation specialists to see if they think radiation might save your hearing. And a second (and sometimes a third) opinion is always a good thing when it comes to such a major decision as treatment for a brain tumor.
Best wishes,
TW
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Thank you, Tumbleweed-
I think next week, I will ask another ENT about a possible hearing test (ABR) and then his opinion/recommendation, as you have suggested. I also could have the results of the April ABR sent to another NYC ENT. This is on my to-do list for next week.
It sure would be nice to get that hearing back although I am getting used to this. When I hold my good right ear closed, I can see that my AN left ear really has very little hearing left. I don't know if that could be brought back.
Today my husband has his doctor's appt. following open heart surgery, so I will check in on Monday with you guys!
Thanks for everything.
Millie
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Hi, Millie:
Since an ABR test is usually only performed once, I suggest you simply send a copy of your recent ABR test results to any doctors from whom you plan to seek a second or third opinion.
Sorry to say, your hearing is not likely to recover on your AN side. But it's (remotely) possible it might, if only partially.
Best wishes,
TW
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Thanks Tumbleweed. One ear is all I need! As long as it works.
I also am wondering if the dizziness and cloudy feeling may leave after treatment. These feelings are intermittent, but definitely there in the last months. I am gettin used to the feeling of fullness.
Millie
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Some people report more or less completely regaining their balance. In my case, I regained about 80%. But I still have mild disequilibrium ("wonkyhead"). For example, I can't keep my balance when standing on one leg with eyes closed, whereas I used to be able to do that before my AN symptoms began years ago. About 25% of CK patients at Stanford U reported their balance improved after treatment.
The feeling of fullness should eventually go away after treatment, but nothing is ever guaranteed when it comes to ANs. Everyone's recovery is at least slightly different from that of others.
Best wishes,
TW
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What a great thing to look forward to! The feeling of fullness gone! Thanks, Tumbleweed, for your advice.
What is a hypoglossal that you have been diagnosed with 12/28? How are you doing?
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A hypoglossal schwannoma is similar to an AN, just in a different location (on the hypoglossal nerve instead of on the vestibulocochlear nerve, as is the case with an AN). It's also 100 times more rare than an AN, affecting 1 in every 10 million people. I have had no symptoms from my hypoglossal schwannoma to date. Like the facial nerve, the hypoglossal nerve is a motor nerve which is very resilient. In my case, the tumor has not grown over the past 4 years (since it was discovered). So unless it starts to grow again or I start getting symptoms (for example, having trouble moving my tongue from side to side), the best course of action is W&W. The only bummer (besides having the damn thing in the first place) is I have to get an MRI series taken every year to make sure it's not growing. Otherwise, it doesn't affect me. I don't think about it that much.
Best wishes,
TW
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Thanks Tumbleweed!
You have had quite a journey.
My thoughts about the annual MRI are the same as yours-what a pain to have to do that every year. In fact, just yesterday, my daughter, just 42, said she is so tired of doctors, her own tests and the stress they bring. But another scan like the MRI is just something else we must do to safeguard our quality of life.
Stay strong and thanks for sharing.
Millie