ANA Discussion Forum
General Category => AN Issues => Topic started by: EJTampa on October 09, 2008, 12:27:03 am
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Hello Group. My name is Ernie, and in about 8 hours I will officially be diagnosed with AN.
My MRI results say:
A 1.3 X 0.8 CM mass in the right cerebellopontine angle extending into the internal auditory canal consistent with vestibular schwannoma.
I think I have read nearly every thread there is here on this site in the last 12 hours :). I guess it's probably time to get some sleep soon before my appointment. I sure feel better about going to my ENT appointment armed with the knowledge I have gained by reading all your posts!
Some background for you. About 6 months (could it be a year?) ago, I started to notice some hearing loss in my right ear. I have had a long history of temporary hearing loss due to wax buildup, and ear drops followed by flushing with warm water has always corrected the problem. Well, this last time, it didn't correct for my right ear. I repeated the process but got no more wax. Strange, I thought, but dismissed it. About 2 months ago (or is it 6?) I noticed a ringing in my right ear. Great, I thought. Now I'm getting an ear infection. The ringing persisted, but with no pain. Over time, the ringing increased in intensity, and is now at the point where I can't ignore it. It pretty much overpowers any background noise I have on, and when I do find myself in a noisier environment, the ringing gets so loud that when I get to a quiet place, it's amazingly loud.
My AN is considered small by most standards, but I don't yet know the growth rate. I have had vertigo, but no numbness or facial problems. It's funny that after reading so many posts here, I find a lot of people concerned (and rightfully so) about complete hearing loss in one ear. For me, if that meant stopping the ringing, I'd be all for it.
Thanks for being here for me and everyone else who comes here looking for support!
Ernie in Tampa Florida
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Welcome Ernie,
Yes, you're most likely correct that in a few hours, it will be official. You have new friends here to help you---hold your hand.
It's wonderful news that yes, your possible AN is on the smaller-side and caught early-on.
Once you have tennitis---that is usually always present. You learn to "tune-it-out" over time........."so to speak." It comes and goes but, is really always present. Your mind/nerves do adjust to the loud prominent noise. Noisy places are very irritating and frustraiting.
Things will get better once you discussis this in length. I'm up and wide awake with a severe toothache. I just had rootcancal and have two more to go in a week. (plus opening the gums and stitches) I've had 21 major surgeries and much physical therapy. Most of my surgeries weren't AN related. (few caused by the stress and trauma relation) Yes, balace is a real problem, among other issues.
You will get better no matter the path you choose for treatment. I'm not that far from Stanford so, I was treated there with CK almost two years ago. I will soon find out if I have an NF2. (end of next mo. is my next six-month MRI and ENT appointment) I will have the creatintin testing before my MRI and next ENT appointment.
How severe is the vertigo? What is your occupation?
Good luck and feel free to contact all of us...........we are here for you.
Palace
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Welcome, Ernie!
This is the right place to be for all AN related maladies. Most of us do have tinnutis. Mine is just "white noise." It is there in the background, but I don't notice it unless the room is quiet. This is the tight place to be for support and encouragement. There are no dumb questions, so don't be afraid to ask anything,
Sorry you had to join our motley crew, but it is a great bunch of people.
Maggie
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Hi Ernie and welcome.
Well, as I tout around here.... "always be the best, well-informed patient you can be...".... and it sounds like you have armed yourself well thus far for such a short amount of time. I'm sending wishes to you today for your appt... and know that we are here to help (as you already know). Will wait for your appt outcome update so I/we can further support you...
Again, welcome... (now, don't hit me.... ) from a BoSox Nation permenant resident! :)
Phyl
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Again, welcome... (now, don't hit me.... ) from a BoSox Nation permenant resident!
Hy Phyl! Actually I'm trying to get tickets for one of the games, and since I was born and raised in Brockton Mass, I have to say GO SOX!
Thanks everyone for the encouragement. I'm heading out to hear what my ENT has to say (while I still can :) )
Ernie
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Good luck Ernie, and post again so we know the results. As you can see and have read, this is not good news but it is treatable and most of us come through just fine.
Thinking of you,
Marci
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Ernie:
Hi - and welcome. I'm never happy to learn that someone has been diagnosed with an acoustic neuroma but I'm always glad to see an AN 'newbe' post here. It shows real interest in researching your condition. More importantly, I know these forums and the folks that fill them will surely be able to provide information and support based on real-life experience, not merely theoretical, which is all most doctors can offer. As you know, we're not doctors (well, most of us aren't) and we don't attempt to offer medical advice or tell anyone what they should do as far as treatment. We simply offer our hard-won knowledge with the vagaries of the AN experience and of course, our full support in whatever path you may choose as you walk through this journey no one wants to take.
You seem to have this pretty well covered, Ernie. The early risers and non-sleepers have responded with good thoughts and I can only add that if and when you have that 'official' word (from your ENT) that you do have an acoustic neuroma, we'll be here with whatever we can offer. Don't be shy about asking questions. We've all been where you are now, and we completely understand your emotions and the kinds of questions you may have. Use these forums as a sounding board, venting place and a refuge.
Here's to better days. :)
Jim
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Hi, Ernie and welcome to our world :)
Sorry you have an AN, but very glad you found us.
As you say, your AN is small but it's on the higher end of small. You may decide to watch & wait a while before treatment, or you may decide on radiation or surgery. I'm sure your doctor will be able to help you with that decision.
Although your treatment decision is a very personal decision, we'll all be more than happy to give you our two cents worth and share our personal experiences - if you'd like.
In addition, I'd like to recommend you contact the ANA for their informational brochures; I found them very helpful and an excellent resource.
Good luck with today's appointment.
Jan
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You will get better no matter the path you choose for treatment. I'm not that far from Stanford so, I was treated there with CK almost two years ago. I will soon find out if I have an NF2. (end of next mo. is my next six-month MRI and ENT appointment) I will have the creatintin testing before my MRI and next ENT appointment.
Palace
I do hope they confirm that you are not NF2. If by chance they do the NF2crew website is a great place just like this place is. Like I said I do hope they find it not to be true.
Do you have any family history?
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Welcome aboard Ernie!
The people here are so amazing, it still blows my mind how helpful, knowledgable, and GOOD everyone is. I joined up about 3 weeks ago, so I still consider myself a newbie, but the things I have learned, this place is irreplacable. (pardon any spelling errors please)
Sorry you have to join us here in "Dizzyland." As others have said, whatever route you chose to take, learn as much as you can! We're here for you!
Andrea
Oh, and our Motto is "I may have a brain tumor, but I'm not crazy!" ;)
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Hi Ernie,
Welcome, I too read every thread before I finally posted my own story. I have felt at peace here. Asking questions and getting lots and lots of support. Honestly I feel that it is truly been helpful in my recovery - I don't feel alone. We are here for you.
Michelle ;D
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Hi Ernie-
Welcome! Hopefully you will get a firm diagnosis today. Meanwhile, so glad you found this site and have been educating yourself.
I didn't have the tinnitis problem and have not really had any problems with that since surgery either, other than some mild symptoms for the first month or so post op. Since I had translab, I am SSD, but that isn't nearly as bad as I had anticipated. I also got the dreaded facial palsy, but at 5 months I am starting to see some real progress on that too.
As I am sure you already know, knowledge is key. As is getting several medical opinions concerning treatment options. I consulted 3 different doctors who all recommended the same approach and who all said I wasn't really a candidate for radiation due to the location of the tumor. Everyone is different and while "size does matter," location is of equal or greater importance.
As you travel this path, know that you have lots of new friends here so you'll never be walking alone.
Debbi, from NJ
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Hi Ernie,
Wow, you sound so calm. Knowledge is power! I think you are well ahead of the game. Sorry that it looks like you are a new member to our club, but trust you will find great info and support here.
Trish from Toronto, Canada
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I'm back, and about to head off to work, so I don't have much time to answer the questions that were asked here (yet). Doctor doesn't really want to wait too long, and is strongly recommending surgery. I put a picture of my MRI up, since I just thought that was the coolest technology I had ever seen :).
If anyone knows of any outstanding surgeons in the Tampa area, please let me know.
Ernie
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It concerns me a little that your doctor doesn't want to wait - make sure YOU are comfortable with what is going on! Your AN is small and you have time to research and get 2nd or 3rd opinions if you so desire (unless there's something unusual with your AN). Please don't feel rushed.
BTW, though almost everyone still has their tinnitus after surgery, I like to be rare - this time in a good way - and mine is greatly diminished to the point where I really forget it entirely. Sometimes I even think it's GONE!
Take Care,
Tammy
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Hi, Ernie:
O.K., you're 'officially' a member of the relatively rare group of people who have been diagnosed with an acoustic neuroma. :)
I heartily concur with Tammy: you might do well to seek out more than one doctor's opinion and above all, don't be 'rushed' into surgery. AN surgery is painstakingly delicate and serious. It can leave you with problems you'll have to deal with for the rest of your life. I did well and so have many others who post messages here but usually, those who only talk to one doctor and are hurried into surgery when there is no apparent need for extreme urgency regret it, later. Just a thought.
Check out this 2007 thread from a fellow (Adrian) who used to be a frequent visitor here and had his surgery at Tampa General.
http://anausa.org/forum/index.php?topic=4141.0 (http://anausa.org/forum/index.php?topic=4141.0)
His initial post gives links to doctor's websites that may interest you. He had his surgery and did quite well, too. I trust this will be helpful and you'll consider consulting other doctors before making your final treatment decision.
Jim
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Hello Ernie and Welcome!
Glad you're here, but sorry you need to be! As you no doubt now know from your 12 hours of reading, this is a great place to be...
Please be sure to take a breath (and maybe get some sleep ;) ) before you make any treatment decision. As others have said, you should not feel pressured or rushed into any decision.
Take care and please let us know how we can help!
Cindy
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I'm back from work now. Wow, you guys write so much! I will, of course, seek additional opinions. I know I have an AN, but I also know I have options. I asked the doctor if there was any harm in waiting until the first of next year to decide, and he said that should be perfectly fine. He mentioned that most people have very slow growth, so it is unlikely that it would cause any harm. I have a wedding cruise in January (a Niece), and I don't want to be worried about recovering in time.
I think I am going to have to go back through this thread to look for all the questions I missed. I remember someone asked what I do for a living, so I can answer that one. I am a meteorologist (not a TV one though). My wife is a registered nurse, and I think she is having a tougher time than I am with this.
For the record, I'm not that concerned about living with visual defects. I'm most concerned about the tinnitus, and the possibility of severe post-op headaches. I haven't ruled out radiation yet, but my current doctor (who is pretty young) seems to be against it for my situation.
Oh, I have tickets to game #2 Saturday night for the Red Sox and the Rays! Go Red Sox!
Ernie
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Ernie -
I'm even rarer than Tammy ;) I didn't have tinnitus pre op and still don't post op. No bragging, just pointing out that everyone here is different.
The same applies to serious post-op headaches; some have them, some don't. There are no hard and fast rules when it comes to ANs - there are no guarantees either.
I didn't get the impression from your post that your doc was "rushing" you into surgery, but I do agree with the idea of getting a few additional opinions - especially if you feel you need them.
Like Jim, I was going to suggest Tampa General. The docs there did wonders for Adrian.
Jan
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Hi Ernie,
Welcome to the club, I know I'm late in welcoming you but I see everyone else did a superb job in that!
For doctors in Tampa, check out Dr. Bartels. I don't know where you are specifically located (don't tell us) but I had my surgery done at Shands at U of F in Gainesville with Drs. Antonelli and Lewis. I highly recommend Dr. Antonelli (neurotologist). Check him out for second opinion. Also Dr. Friedman who runs the SFR radiotherapy end of things. Even though your doctor discouraged you from this option, why not go for one or two opinions in this area of treatment protocols? Better to cover all bases here before you make your decision. You'll feel lots better you did.
Given the size of your tumor I know most docs are in agreement that size does matter regarding difficulty in saving the facial nerve and they do recommend having one undergo surgery before the tumor becomes larger than 2cm.
If you are having an important event in January and can wait, IMO I would do this as one doesn't know how they will heal after surgery or radiation. Each vestibular schwannoma is different and each person heals differently. Doctors will not be able to make a definitive call on your reaction to treatment, but usually they will say give yourself 6 weeks to three months, some patients take up to one year, where others have gone beyond the one year mark (my case for example). Feel free to ask me questions regarding my process if you want as I won't go into it now to save time in getting this to you.
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Hi Ernie,
This is a pretty elite club you have just joined. Not just anyone can get in! ::) All the advice you have gotten is great. I too am wrestling w/where I want my sugery performed, as alll the drs. I have consulted with said surgery was the best option. I was going to House, and still haven't ruled that out, but I have also had my MRI read by the Barrow Institute and have talked to them. The surgeon here in Houston has a very good reputation, so I have big decsions to make since I want this done in December. Make sure you have done all your homework before you make any decsions. There is a lot of info out there and it takes time to sift through even part of it. If you know anyone in the medical community, lean on them. I think I have talked to all of my husband's old college buddies more lately than he has, since most of them went onto medicine!
Keep us posted on your progress. We want to be able to encourage you.
Maggie
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Another AN'er welcoming you aboard, Ernie. I am so glad Jim mentioned Adrian's posts. Yes, please look them up! And be sure to look into all your options. If you do elect to do surgery, just make sure they are a highly experienced team. And read Adrian's posts. He had a large AN and he was very happy with his surgeons. They are top rated in Florida.
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I think I'm going to be saying thank you alot over the next few days as you all make me feel very welcomed! While I'm not really in the wait and see club, I do have some time to consider options. I read most of those posts that Jim asked me to read (Adrian's experiences), and wow, that was some scary times for them! I'm glad he was happy with the results. I had to do some searching to find the post-op messages, since they started new threads :).
I will definitely look into the surgeons Adrian used, but I haven't ruled out radiation either. I know my ENT isn't crazy about it, but I still want to talk to a radiologist as well.
Ernie
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... but I haven't ruled out radiation either. I know my ENT isn't crazy about it, but I still want to talk to a radiologist as well.
It is not unusual for ENT's to not be crazy about radiation, usually because they are not aware of how successful it is with small ANs. It doesn't mean they are not good ENTs, only that they may not be current on every possible treatment for every possible ear-related condition.
Talking to a radiation oncologist about it makes the same sense that talking to a surgeon about surgery does. If possible, an oncologist that has treated ANs with Cyberknife or GammaKnife. Maybe Jerome Spunberg, for instance, in Palm Beach. Here is a link to the new Cyberknife support site, where he is an online doctor; you could also post a question for him in the forum there.
http://www.cyberknife.com/forum-doctors.aspx
By the way, a radiologist is different, they are the ones that read MRIs and X-Rays.
Oh, and welcome to the forum. :)
Steve
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Hi Ernie,
Just to add to this thread, I have far fewer headaches post-op then I did pre-surgery. In fact, I have had no severe headaches at all. Also, I still have my hearing and my tinnitus is tolerable to the point that I do not notice it (unless I'm in a very quiet place). As Jan says, we are all so different, or, rather, our tumors are different, that it is difficult to predict what anyone will experience. I do know that at 3 months post-op I feel pretty good, have resumed working and playing and am learning to deal with residual symptoms that I hope will resolve.
I agree that you should check out Dr. Antonelli--I have heard great things about him and his team.
Best,
Marci
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Hi Ernie,
Sorry I'm a little late coming to this thread but I wanted to welcome you to our group. Your an is small and I'm glad to hear you'll be getting other opinions. My doctor is young too, but that can be a good thing. Although I don't know any doctors in your area (as you can see, I am from NYC) there are lots of wonderful doctors out there and I'm sure you'll find the ones that are a good fit for you. Whichever treatment choice you make, be certain it is what YOU want, not what a doctor persuades you to have. Unless the location of your tumor is a determining factor, the size says you have a choice between stereotactic radio surgery and microsurgery. I'm glad you've read so many posts because as others have said, knowledge is power -- the more you have, the better you will feel when you make your choice. I wish you luck as I know this is the hardest part of the process (at least it was for me).
Best wishes,
Wendy
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Hello again!
Got back from the ball game (Red Sox at Tropicana Field) at 3 AM! Slept in this morning even though I was supposed to get some stuff done around the house. Stephen King was 3 seats to my left (same row), pretty cool. Snapped a picture or two of him.
I'm a sox fan, but it was a great game, and good to see an extra innings game go to the Rays when playing at home. My wife was wearing a rays shirt, while I had my Fenway shirt on :).
Hmmm, this post looks off topic. So lets fix that. Thanks, Steve, for the link to cyberknifesupport! Lots of good discussion there. I had to dig into the archives because they recently moved to a different forum format (I think). Even without talking to a radiation oncologist first, I'm leaning toward CK. The only real symptoms I have are hearing loss and Tinnitus, so I think less invasive is better. If we could just stop the growth of the tumor, and if I can get used to the ringing, I'd be a happy camper. Don't worry, I'm still gonna get second/third opinions. :)
Ernie
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No one has mentioned, so I will, for you to google "House Ear Institute" in L.A., California. I am here now. They are world renown for performing AN surgeries. The best 'first step' with House Institute is that you can send a copy and for FREE OF CHARGE they will evaluate your MRI and give you a second opinion over the phone at no expense to you. It's at the very least a free service that I would explore while researching your options.
Ernie -
as Cheri mentioned House (HEI) is world renown for performing AN surgeries and they will give you a free consult. Just keep in mind that HEI generally recommends surgery over radiation, since that is what they are experts at.
So, if you are still open to radiation as a possible treatment choice, make sure you consult with some doctors who do radiation also.
Wish I would have seen Stephen King - I think I've read just about everything he's written; I'm a huge fan ;D
Jan
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Hi Jan,
Here is a pic that I snapped of Stephen King at the game:
(http://i395.photobucket.com/albums/pp31/flessanguam/th_101108_202601.jpg)
You can click that image to make it bigger (I think).
I am still open to radiation, so I will be checking that out next. If I decide on surgery, I will definitely look into HEI. Thanks so much for all the great information!
Ernie
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Picture wasn't clickable, so here is full sized so you can see it...
(http://i395.photobucket.com/albums/pp31/flessanguam/101108_202601.jpg)
I'm working 10 PM to 6 AM, in case you are wondering why I'm still up :).
Ernie
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Cool.
Wonder if the book under his seat is one of his? ;D
Jan
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Hey Ernie, Looks like you've gotten lots of amazing advice so far. The first neuro I saw after diagnosis told me radiation was not an option for me due to the location of my tumor. It was only when I saw a neuro with experience treating ANs with GK/CK that I learned these were perfectly good and reasonable options in my case, along with surgery. If you are interested, in my website below, I have recounted in detail the process I went through of researching treatment alternatives (surgery/GK/CK) and how after consultations and research I ultimately came to choose CK for my Acoustic. Hope it is helpful and hope you are doing well.
Take care,
Francesco
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Hello Francsco!
Wow! I just spent the last 45 minutes reading your 1+ year journey through AN treatment! I must say, I have been leaning toward CK based soley on information obtained from the net, but would never make the final decision without talking to doctors. If you've read my story, you can probably tell I'm basically W&W until January, so I can attend my Niece's wedding cruise without adverse surgical or radiation effects.
Your story actually scares me a bit, to be honest. I keep telling myself that my tumor is small, so my recovery time will be short, but I also know I'm just fooling myself. Don't get me wrong, I think the improvements you've seen in one year are right in line with what I've read, but I keep focusing on the "quick recovery" stories that I find :).
In any case, I feel it's best to have an optimistic outlook, but a guarded one at that. It's important that I be realistic. My job is such that I could safely take 4 to 6 weeks off without worry of losing my job or pay, but it would be more troubling to have to take off work at continued intervals over a one or two year period. You have given me much to think about, and I hope you will continue to update your page, which I have book marked for future reference!
One thing I've always wanted to do before I expire is to hang glide off a rocky cliff down to a sandy beach. I'm thinking now that I should do that before I get treated :).
Ernie
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Hey Ernie,
One thing to keep in mind is that the vast majority of AN patients do not participate on this forum. Most of them just go back to their lives. While there are quite a few here whose treatment was uneventful, I think it's safe to say that most of the folks are here because they're having problems or concerns. So we have a group who may not be representative of AN posties. I had surgery 4 months ago, and even had some major bumps in the road afterward, but all in all felt 90% recovered by 3 months or so. I just have a bit of residual facial palsy, but that is resolving too. If I had the desire to hang glide, I'm sure I could manage it no problem - I began bicycling again after about 2 1/2 months. I guess what I'm saying is that while you should be prepared for the worst (always a good practice), you will likely be pleasantly surprised, no matter what treatment option you choose.
Best wishes,
Tammy
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Excellent point, Tamara.
Lots of AN patients join us as newbies and then don't participate much after their treatment is completed.
Jan
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Ernie,
Hey - I really feel for you with the loud tinnitus! Mine is extremely loud also - it is very
annoying - especially as my job is listening! Although I rarely post, I read this site a lot
and I learn new things things! Much luck to you!
Paula
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Thanks Paula. I see you are in the watch and wait arena too. I've been going back and forth between surgery and radiation, but I'm beginning to think surgery would have the best shot of saving hearing and possibly reducing the tinnitus.
Tammy and Jan, yes, I was wondering the same thing about the posters here. It makes sense that those with few, if any, lasting affects would be least likely to hang out in the forums. I suppose the same could happen with me, although I will absolutely let everyone know how things turn out when I do decide on treatment.
I'm really enjoying the company here, so I expect to be a long term poster.
Ernie
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Hi Ernie,
My AN was close to your size.. I was told by a Dr. at Barrows that it is important to determine growth rate. So I had another MRI at about 3 1/2 months and mine had grown by about 30%. Thus watch and wait was not an option for me. I was considering waiting as it was small.. but the booger grew in 3 months so I did CK 2 weeks ago and am doing pretty well.
Some dizziness as before and I felt flu-ish the first couple of days after, but so far not unmanageable side effects. Good Luck in your decision making process. For me, I wanted to try CK first and then have surgery as an option down the road if needed. But I am optimistic that BIG ROBOT EYE... did the trick. Let me know if I can answer any questions....
hang in,
Sherry
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Hi Ernie, I also am a new An patient. My tumor is 1.4 x 1.0. I have known since July and I finally made an appointment to have surgery Nov. 21st at the Mayo Clinic, MN. Process Retrosigmoid. I have only lost a little hearing, also have ringing, and slightly off balance. Some hearing should be preserved and hopefully no facial disfunction. But..there is no guarantee until after surgery. I am excited to have the surgery and get on with life. It was a very hard decision but I want it out.. Good luck with your decision, do alot of research.
Bell
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Hi Ernie,
Sorry you have to join our group. Living in the Tampa Bay area, Dr. Bartels was the first surgeon I saw. If I had decided on surgery I would have had Dr. Bartels do it. I chose radiation, at MD Anderson in Orlando. I do think you can opt for wait and watch until you decide on surgery or radiation.
OK , I'm a Tampa Bay sports fanatic. Go BUCS...Go LIGHTNING...Go RAYS... But as a child my dad and grandmother took me faithfully to the Phillies at Connie Mack stadium. So this will be some series for me.
mema
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Thanks Bell and Mema. I am only waiting so I don't have sympotoms for my Nieces wedding cruise in January. I will certainly look into Dr. Bartels as well as others out of state. My insurance is pretty good, BCBS Federal, so I'm hopeful I won't have too many problems in that arena.
Bell, I see your surgery is coming up next month. Our situations sound pretty similar, Tinnitus, some hearing loss, and some balance issues, but I know every tumor is different. I wish you luck with your surgery and be sure to keep us informed! :)
Mema, since my Red Sox are down now, I'll join you in wishing the Rays well :). Can you tell me how things went with the radiation in Orlando? Maybe I can find it by searching :).
Thanks for posting,
Ernie
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Hello again fellow ANers,
Did anyone ever have an increase in neck pain with their AN? For the last week now, maybe longer, I've had some pretty severe muscle pain on the AN side, and just behind the ear. If I swallow with my head turned at all, I get a sharp pain that feels like it's in the center of the ear. I know, you guys are not doctors and I should seek a professional opinion and all that other stuff you have to say :). I was wondering if anyone ever had that, though, and if it was a symptom of the AN.
On the bright side, I've been taking Ibuprofen, and that is controlling the stiffness and the pain very well. My already very loud tinnitus has stepped up a notch, which is discouraging since that's one part of the AN we get to keep for life. I can still hear well out of the AN ear, as I have only lost the high frequency sounds. I still use that ear for my phone conversations and such.
Anyway, just figured I'd post my newest issues, and let you know that I haven't fallen off the face of the earth. When I have a surgery date set, I will let you all know for sure.
Ernie
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Your pain in the neck while swallowing is pretty normal for those with this tumor, but I cannot explain why this happens. Most have neck/shoulder issues that dissipate once treatment is over. Gentle stretching does help keep the muscles supple allowing blood to flow freely through the tissue decreasing pain.
It is very possible your tinnitus will decrease once you have the surgery, until then welcome this annoyance rather than trying to reject it. The more we reject the tumor issues the bigger they become--this goes for post treatment too. These issues annoy us to no end until we acknowledge them where the symptoms decrease to an acceptable level or even go away--too bad this doesn't work for the tumor itself!
Deep breaths, eyes closed, no thoughts--peace!
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just to give you hope-my tinnitus was a symptome before surgery and got better after an eventful surgery. i also had terrible headaches and occassional vomiting (which is why i went to the doctor) that have gone away since surgery. i do get occassional headaches, but find releif by cranio-sacral therapy (which btw is very helpful for neck pain) best of luck to you. patti