ANA Discussion Forum
General Category => AN Issues => Topic started by: Mark F. on March 27, 2025, 09:05:18 pm
-
Ok. I've been reading posts on here for a while but this is my first. I was diagnosed in 2022. At the time it measured 10x6x6. I just had my typical 6 month MRI and as of 3/24/25 it is now 12x8x8. I have been wanting surgery since I was diagnosed, I am one of those people who just wants it gone. Anyway, I have most of the typical symptoms, legally deaf in my left ear, balance issues, I've literally had a headache for over a year, it's always there just usually mild, and then gets worse at times. But I have had some odd things pop up that I think are related, but my neurosurgeon claims is not. One is recurring double vision particularly when I'm tired or at night which makes night driving really interesting at times, and the other new symptom seems really odd, at night only and not all the time, I struggle sometimes to say what I want to say. I know in my mind what I want to say, but I have to concentrate way more than I should to actually say the words. Several years ago I had a pretty bad concussion from a traffic accident where I bounced my head off the steering wheel and the air bag did not deploy, for two weeks after that I had this exact same issue. Then it was from the concussion, now I am wondering if it is somehow related to the acoustic neuroma. Has anyone else had this type of issue? By the way, the issue is just in speech, when I feel like that I still have absolutely no problem typing an intelligent text. I will be talking with my neurosurgeon on Monday and I really want to push for having the surgery soon. As a background, I am 56, but other than this tumor I am in very good shape. I have a very active job, and until last year when the balance started becoming more of an issue I was one of those people that ran 5k's every chance I could. So my overall health shouldn't be a factor in weather or not to have surgery.
-
Thank you, Mark F., for posting your story on the ANA Forums. Please keep us updated on what your neurosurgeon says on Monday.
Like you, I lost my hearing in my left ear and have struggled with balance issues. And like you, I wanted surgery to have the acoustic neuroma gone! But as years have gone by and my vestibular schwanoma has not grown, I have seen wisdom in waiting and watching.
However, in your story, you do have growth, so I will be interested to hear what your neurosurgeon recommends.
Best wishes on your journey!
Don
-
Your signature at the bottom says you were fitted with a CROS hearing aid. Do you like it? My ENT told me that was the only option that could work for me, but he said he honestly didn't recommend it because he said in his experience most of his patients who tried it hated it. And he said the hearing in my right ear is very good so I am actually not missing much. Just really quiet sounds on the left.
-
Hi Mark, I haven't had either of your issues so I can't help you there. I just wanted to say that the doctors don't know everything so it's possible your issues are related to the Neuroma. I had my surgery a long time ago and the doctor told me I wouldn't be able to drink out of a glass after surgery, my left eye wouldn't close and my left eye would tear again after my nerve healed! He was wrong on all 3 counts. I hope your doctor is willing to listen to you and help you figure out if the issues are related. Also, I hope you get your surgery soon so the headache, double vision & and problems with saying what you want to are relieved. Let us know how it goes on Monday! Jill
-
I will update everyone on Monday. Thanks. For information sake I'll let you all know that my neurosurgeon is at John's Hopkins. I live about 2 hours away from there, but I chose them because of reputation, and the fact that they have an Acoustic Neuroma department. I really like my surgeon, I don't always agree with him, but I do trust him. Like the Michael J. Fox quote, the real expert is the person going through it. Even the best surgeon can't understand what it's like unless he has had it himself.
-
Thanks Mark, we appreciate you keeping us informed. Although I don't know you we have been down a similar path so we understand what you are going through better than some. Therefore the Michael J. Fox quote makes total sense to me. I hadn't heard the quote so will share it with others that would appreciate it. Really glad to hear that you like and trust your surgeon, that's definitely a plus. Jill
-
Hi Mark,
I am sorry you are going through this. I have a couple of remarks related to your questions.
I definitely had some word-finding trouble in the two years between diagnosis and surgery. After surgery, it was better, from my perspective. I also had some odd stuttering, which was new for me, and which completely went away immediately after treatment. (Could it have been stress-related? Sure. I really don't know the cause.)
I don't think I ever even asked a doctor about those issues, and whether or not they were symptoms of the AN. I probably was just too overwhelmed at the time, by the balance trouble, hearing loss, twitching in my face and tongue "numbness".
My balance is nearly normal post-trans-lab surgery. My facial twitching and tongue issue also went away after the tumor resection. (I had a small-then-medium-sized tumor.)
Choosing either radiosurgery or microsurgery was difficult for me, at the time. Definitely super stressful. Only after I chose microsurgery with trusted MDs, did I start to have some emotional relief. And after surgery, I had much more emotional relief. If I could do it all again, I wouldn't have waited so long for treatment, but it's OK.
I had surgery at 65 yo. My age was not a problem. (See my other posts, if interested.)
Hope you receive good information on Monday, and I hope that you can choose a good plan that makes sense to your MD/team and yourself. I remember someone on this forum remarking that the time before choosing a treatment plan was the worst time. For me, that turned out to be true, too. Wishing you well.
Best,
Skier
-
Skier,
Thanks, for the hope that I'm not just losing my mind here. I have said all along I wanted surgery, but as the time got closer the lack of a recovery period started making radiation look more appealing, till I talked to some people who went through that and ended up getting surgery anyway years later because the radiation either didn't work at all or the tumor just grew back anyway. So I'm back to wanting surgery. I feel at 56 I am still in pretty good shape and have a much better chance at a good recovery now than say 8-10 years from now. I certainly hope that this period is the worst, I know surgery has risks and possible side effects, but I am so ready to start seeing improvement instead of new symptoms. Whatever the outcome from surgery, I just want to know that ok this is where I am, no more guessing what's next.
-
Ok. Here's the update. After talking to the neurosurgeon today, we are moving forward with surgery. I don't have a date yet, I was told I would have an appointment to meet the other surgeon who will also be a part of the team first, then we would schedule.
At first he started out saying watch it for another 6 months, but when I started telling him about the progressive issues I've had with balance, that's when he started talking about the risks and possibilities of the surgery, and he said he realizes balance issues are no joke and that we would proceed with the surgery instead of waiting any longer.
I told him I was ready, and that I felt doing now was less risky than waiting because I'm not getting any younger, and isn't it easier on him to get it out while it's smaller? To which he said that was true.
So here we are, I am going to get my surgery, see where that leaves me, and hopefully after recovery start actually getting better instead of constantly getting worse.
-
Hi Mark, I'm really glad to hear that the Neurosurgeon agreed to not wait any longer for the surgery. I bet you were relieved when he agreed with you that because of the balance issues it was time to proceed. Good point, the tumor will be easier to remove now, another plus to having the surgery soon. Please let us know when the surgery is scheduled. I'm sure you will have lots of questions about what to expect and how to handle recovery. We will be hoping your surgery will happen soon so you can say goodbye to the headaches! Jill
-
I had a good appointment today with the second surgeon on my team. I liked this surgeon too. He said he agreed that it is a good decision to remove it now while it's still easier on them. He also said he would try to preserve my hearing nerve so that I could possibly be a candidate for a cochlear implant to get my hearing back on the left. Best news I've gotten since this whole thing started. Not guaranteed, but at least he said it's possible. Everyone else said the hearing on that side would be gone and there is nothing we can do about that. No firm date for surgery yet, he said probably in 4-8 weeks from now since it's not an emergency. I will have a firm date soon, possibly even tomorrow.
-
Great update and news. Good luck
Dan
-
Thanks so much Dan! It means I can focus on other things (cardio as my Lp(a) levels are high).
-
We can and have shared cardio stories, I am not 1 year post OHS and got a great report from my Doctor. Free to self monitor for the next 9 months instead of 6! Take care and I hope it is cooling off!
-
Ok. Surgery date set. May 13th. For anyone who who hasn't been through this yet, there are also two other appointments before surgery. One for Pre-op physical and blood work. The second is for another MRI that has to be done on the day before surgery.
-
welcome to the forum Mark. I used to feel bad about asking for help, especially with academic stuff. But after giving фcademized https://academized.com/thesis-writing-service a shot, I’ve realized that support systems like this exist for a reason. They helped me handle a challenging assignment while I focused on recovering from burnout. I finally have some energy again—and that feels like a huge win.
-
Mark, Glad to hear you have a surgery date! Please let us know how you are doing before surgery and of course how you are after surgery when you feel up to it! Jill Marie :)
-
Well how I'm doing now just over 3 weeks from the big day is very nervous. I tell people that everyone else seems happier about me getting surgery than I am. Don't get me wrong, I am glad that I am finally in the end game and looking forward to seeing some things improve instead of constantly in a slow decline. But the gladness is only one of the many feelings I have. I'm also scared to death of the surgery, worried about the outcome, and anxious about the length of recovery time.
-
Today was a Pre-op appointment day. Blood work, EKG, vitals, basically making sure I am healthy enough for surgery. It took longer than I thought it would. But everything was good. Basically half a day spent there. It's getting more real every day, only 2 weeks away now.
-
Only down side so far is they told me no ibuprofen for a week before surgery. Ibuprofen is the only thing that seems to cut the headaches down. It doesn't eliminate them, but does make them more tolerable. So that last week may be a bear
-
Hi Mark, I was trying to think of the things that helped me before my surgery which was over 30 years ago and yes I still remember a lot of that time very clearly. I was hoping to be able to tell you something that may help you. Unfortunately we found out one of our sons has cancer not long after your post about the date for your surgery so I haven't felt up to posting. I mention this because I said I hoped you would keep us updated on your progress and you did, but I never replied.
I understand your being nervous about the surgery and outcome, you've had a long time to think about it which doesn't help of course. Everyone is happy the date is near because we see good things in your future and are looking forward to hearing that the headaches and other problems you have been dealing with are gone or at least manageable. I'm thankfully a person that is able to get busy doing things I should have done already when I have things on my mind that worry me, that is of course after I deal with the realization of what's in store for me. Hopefully you have everything planned as best you can now and can immerse yourself in doing projects or something you enjoy doing to keep you from thinking too much. That of course is if the headaches allow as I read that you can't have the ibuprofen you need. I so wish I had a crystal ball so I could tell you the outcome is going to be everything you hoped for. As for the length of recovery time I assume you are concerned about not being able to work, it's always hard to be a patient, patient. Are there things you can do while recovering that you wouldn't normally have time for?
I'm glad you got the pre-op appointment done and all went well. I will be checking the board when I can to see how you are doing just before surgery, if the headaches allow you to post. We look forward to seeing a post from you after surgery. Jill
-
Jill,
Sorry to hear about your son. I hope things go well for him. Don't worry about the late reply. What we all understand on this board is that things happen out of nowhere that we can't control that can turn your life upside down.
I'm in that last week now, and a nervous wreck. Didn't help that I recently saw all these stories about the dangers of MRI contrast dye, and I'm sitting here thinking that I will be getting yet another MRI with contrast on the day before surgery, making 7 within the last 3 years.
You are correct that I worry about getting back to work. I know everyone says you're health is the most important thing, but the bills don't stop because you're not feeling well.
I have set a goal for myself that I think should be easy to achieve. I always ran a few 5k races each year, except last year as my dizziness made running difficult and I didn't want to just walk them. But my goal is to enter this year's Turkey Trot 5k on Thanksgiving. I want to be able to run it the whole way, but I plan to finish it even if all I can do is walk. I never thought walking a 5k would be considered a goal, but that's how life goes sometimes.
I stopped the ibuprofen early. They told me at least 7 days before surgery, I stopped at 10 days before. It's been a little rough, but not as bad as I feared, so there's a plus.
-
Hi Mark,
I want to send you a link, for some recommended "visualization" tools on a page by Memorial Sloan Kettering Cancer Center. But sending links is not allowed, but if you google visualization and MSKCC you will find the page, I think.
Background: I had cancer 15 or so years before I had my Acoustic Neuroma. I had time (and motivation) to learn about different guided meditation tools, then, and I found them simple to use and incredibly helpful.
Ten minutes of guided meditation could really create calm and positive self-talk, especially before and after procedures. There's a lot of science behind it, as well.
I was able to use these tools leading up to my AN surgery. Helped me a lot! :) Highly recommend trying at least once.
Sending you all the best wishes for your healing!
-
Thank you, I'll check it out.
-
Mark, slier sent me some information before my Open heart Surgery and it did help, please read it is time well spent.
-
Hi Mark,
Thank you, we have been busy trying to find the best clinics and treatments for him. You are so right about things happening out of nowhere, he has always taken really good care of himself.
I can well imagine you are a nervous wreck. I hadn't heard about the MRI contrast dye, I will have to look into that.
Insurance pays most of the medical bills but unfortunately it doesn't pay the other bills. I wasn't working when I had my surgery (stay at home Mom) so didn't have to worry about getting back to work. I hope you recover as quickly as possible so you can stop worrying about work/money.
I love your goal to do the Turkey Trot, it will surely help you keep pushing to heal. My goal was to walk the 7.5 mile Bloomsday course in Spokane WA in May. I broke my leg in 3 places a month before my surgery not long after walking the course so I was looking forward to doing it again with my two boys and friends. I did it!
I'm so glad to hear that the headaches aren't as bad as you thought they would be after stopping the Ibuprofen. I applaud your ability to stop it even sooner than they told you to, don't think I could have.
I have been thinking about you and hoping the next 2 days go quickly so you can get the surgery done with and start the recovery process.
As a good friend from this board always said when signing off - Always Good Thoughts! Jill :)
-
One last post before surgery.
Had my Pre-surgery MRI today. They put 11 marker stickers on my head in various places that have to stay there till I show up for surgery tomorrow. I wish they had told me about that, I would have brought along my bandana to cover it up so I wouldn't have been going around with round stickers showing. But otherwise it was good. I got sick again from the contrast dye, but that is nothing new, happens every time.
By tomorrow this time I will be getting out of surgery. Idk when I will feel up to posting again, but when I do I'll let you guys know how I'm doing.
Thanks for the support.
-
Mark F - wishing you all the best tomorrow, successful surgery and seamless recovery.
-
I am 6 months post surgical removal of a facial schwannoma with transplant of a nerve from my ear. Leading g up to my surgery. I was told worst case to expect. Had my nerves going insane. I couldnt sleep for weeks leading up to it. I had a wonderful team of surgeons at the University of Penn. My surgery lasted 12 hrs. Just prepare your family for a long wait. I on the other hand had a wonderful anesthesiologist and I never remember leaving g.preop and woke up to my husband giving me a kiss. With the best days sleep I ever had.
To give some back ground my AN needed to be completely removed and was causing palsy on the right side of my face and was.miss diagnosed for 6 months. Thanks to a great nurse practitioner she got me the correct diagnosis and to the correct doctors. They told me to expect to be in the hospital 3 to 5 days and I would most.likely loose all hearing in the right ear. I was prepared for the worst. The hospital being 5 hrs drive one way from home, my husband would be staying at a local hotel. As it turned out, I lost no hearing they were able to avoid removing those bones and went under. I was discharged the following morning to recuperate at home. It's now 6 months later and they tell me it will take another 6 months before they can determine how much recovery will be co.plete. but so far things are.improving. I just wanted to reach out and try to ease the anxiety. If it wasn't for family and friends, I would t have gotten this far. I joined today to look at some other issues that may or may not be related, but my over all experience with my surgical team has been great. You have to go in with a good attitude and.possative outlook. I'm 56 and have 6 kids, so when I told them I was dying my hair blue for surgery, they thought it was cool. I have kept crazy colors since to keep my mood upbeat. I get lots of compliments to and it's a talking point for my situation but has lead to lots of outside support. Every month I change the color and do update photos to keep track. My surgeons love it. I shaved the underside of my hair to prevent them from. Making a mess of my hair style but it's been woth it. Hair goes back. You have to do what gets you in a possative outlook. One of the best thi gs that happened, I was waiting for a dr apt and someone who had surgery 15 yrs prior came up to me and Introduced herself to let me know I wasn't alone and that thi gs will get better. I'm trying g to pay it forward by speaking out and supporting those who need it. I wish you luck and the best recovery. Everyone is different but it does get better. I don't know if you are religious or not but I accepted every prayer anyone offered. I will say a prayer for you that you have a speedy recovery and the best.possible outcome. Best of luck.
-
Mark, While you're in surgery we will be thinking about you, hoping and praying all goes well! Looking forward to seeing a post from you when you're up to it! Jill
-
Well first post after surgery. First day was rough, no sugar coating that one, but feeling better each day. Spent 2 days in ICU, now I'm just out on the floor. Told I'll most likely be sent home Monday, making my stay 6 days. They were able to preserve what hearing I had, although it isn't much, as I was already legally deaf in the left ear, just not totally deaf, so I can still tell direction of louder sounds. Balance am told is better than most at this point. I got up and walked the hallway yesterday afternoon with just someone holding my arm. Yesterday morning I was using a walker so that was a quick transition. Post op headache was probably the worst headache I ever had in my life, but after 2 days seems to be gone now. Thank you all for your support and advice, it was useful and I believe really helped.
-
Terrific, Mark! Very happy to hear this.
Best,
Skier
-
Outstanding News! Mark - So glad to hear that you are doing well and each day improving.
Take Care - Sissy
-
Great news, thanks for sharing. Keep on getting better.
-
Skier,
I think you are on to something with keeping as active as possible. Since I was a runner I used my treadmill everyday before surgery, even when my balance was questionable at best I used the handrails and did what I could. I really believe that my surprise walking ability after surgery has everything to do with having strong legs that can help me steady myself. If I could give anyone any word of advice it would be do whatever you can to keep active and keep your legs strong right up to the day. I'm not doctor, but it helped me.
-
So glad to hear you are making such progress.
Ellen
-
I just realized that I didn't mention the results from that last MRI the day before surgery. I was a little surprised as I had just had an MRI 4 weeks prior, and in those 4 weeks it grew 1mm each direction. Final measurements on it was 13x9x9. When it was first diagnosed I was at 10x6x6.
-
Surprised it grew, glad it is gone! Keep on moving.
Dan
-
Hi Mark,
Wow, I was really surprised and pleased to see that you posted just 3 days after surgery. I didn't think we would hear from you for at least a week or two. Glad to hear your balance is better than normal, that will certainly help your recovery. I was on crutches after breaking my leg a month before surgery so I'm lucky they even let me out of the hospital. Lol. Speaking of getting out, tomorrow is the big day, bet you're looking forward to it. So sorry to hear that you had such a rough time with the headaches, thankful of course that they went away. Considering the growth in your tumor recently I imagine you're really glad you got rid of it. Take Care, Jill :)
-
Ok I did hit a setback on swallowing. Still not on solid food, and now but just got moved up from liquid only to soft food. I'm told I probably won't be going home today, maybe tomorrow depending on how it goes with the food. The doctors seem to think I came in with a mild infection and the combination of the surgery, breathing tube, and steroids just blew it up into a full blown Thrush infection in my esophagus. It is getting better, sad I might not go home as soon as I wanted, but it's temporary. The big thing for me is I have now been off my pain medication for 3 days already. I was surprised to learn that the minor amount of pain I have now is absolutely nothing compared to what I apparently was living with every day of my life for the last three years.
Jill: One thing you have in the hospital is a lot of free time, way too much actually so I've been watching the website a couple times a day.
-
Officially released from the hospital!!! 7 days here was longer than I expected, but three of those are due to the throat infection problem. I could have been released from a neuro standpoint Saturday.
-
Hooray!
Ellen
-
Hi Mark,
Really glad to hear that you put your "Ruby Slippers on, tapped them 3 times and now you're home!" Congratulations!! Glad they got the infection under control so you can at least eat soft food and got to go home. Being off the pain meds so soon is definitely a plus, less side effects. What a huge difference in your life now having the awful constant pain gone. I'm so very happy for you! I bet you can't wait to celebrate how well you're doing. Perhaps not dealing with the pain anymore is your celebration!
Glad you were able to have a computer so you could check the website and update us! Jill
-
Three weeks post-op and just returned to work today. Only did 4 hours because I started getting tired and didn't want to overdo it. But I was really happy to get back out there even if it's just half a day. Had video follow up today, and surgeon was very pleased with my progress and cleared me to drive and light work.
-
This is great news! I am new here, and was just diagnosed. I've read all your posts, and also live in Maryland. I would love to hear more about your JH experience if you would be willing to share!
Brittany
-
Hello everyone,
I’m interested in understanding how effective current migraine treatments are not just in relieving pain but also in managing other symptoms and improving quality of life. Migraines can affect so many aspects beyond headache intensity, including nausea, sensitivity to light, and cognitive function.
What treatments have you found to address these broader symptoms effectively?
Are there any promising new approaches or combination therapies?
How do you measure success in migraine management beyond just pain reduction?
I’d appreciate insights from both clinicians and patients about what really works in comprehensive migraine care.
Thank you!
-
Brittany,
I'm happy to share/answer any questions. I did get your email and sent a reply back, hope you got it, and hope all goes well with your journey. I am pleased with my experience at Hopkins, and for anyone else wondering if there are positive results from surgery, absolutely there are. Everyone has a different experience, and I can only tell you from my experience. Before surgery I had a headache that lasted 2 years. It was there every single day. But since surgery that headache has vanished. I never realized how much that affected my daily life till it was gone. I had other issues as well, and I'm still recovering from some things, but just having that daily headache disappear was worth going through the surgery for me.
-
Mark,
I am impressed that you are back to work, great job,credit to you.
Continue you successful journey,
Dan
-
Congratulations Mark! So very happy to hear you returned to work already, had to read the post twice to make sure I read it right! Three weeks after surgery and you're back to work, that's amazing. I bet it's a load off your mind knowing you're able to work again. I read the post and was getting ready to post and ask about THE HEADACHE then I read your next post. I was hoping/praying that your 2 year headache would be gone, so glad it is. Your posts are sure to help those just starting there journey! Jill
-
Quick update. Tomorrow makes 7 weeks since surgery. I continue to improve daily and my doctors even seem surprised at how quickly I was able to bounce back, I would say my balance is just as good now as it was before surgery, and it is still improving. My double vision is fading. It's not there all the time now only sometimes, and it is getting noticably better each week. I wish my taste buds would get back to normal, I am getting tired of things that I know I really like having a strange flavor or no flavor at all. I know that will resolve itself too, I'm just getting a little impatient with it. It is hard to believe that I am now doing nearly everything that I did at work before surgery almost like nothing happened. I only get unbalanced if I turn my head too fast. The post surgery fatigue has also pretty much disappeared. When I first went back to work I only did 4-5 hours a day and I got pretty tired. I am now full time and do not feel any more tired than normal.
I still can't hear out of my left ear at all even though the surgeon said they saved the nerve, he says I could still get some of the hearing back once all the swelling is gone, which could take some time.
I update this because when I first started looking on here it was really scary, it seems that nearly all the comments were of things that didn't go right. I suppose that most people don't come back to post if everything went well, and I just want people out there to get a little hope that yes there are positive stories. Life may be different now because of the acoustic neuroma, but in the grand scheme of things, I feel very lucky to have had such a quick recovery, and such a positive result. So I hope I gave someone a little hope and a little relief from the anxiety. I appreciate all the support I had, and I plan to keep an eye on this site and provide any information or support I can for others.
-
Mark, Thank you for this positive update and tone.
-
Your speech and double vision symptoms likely relate to the tumor pressing on nearby nerves or brain areas. It’s common and worth mentioning to your neurosurgeon. These issues support your decision for surgery. Your health and activity level are good signs for recovery. The pre-op physical, blood work, and MRI before surgery are standard steps.