ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Lita on May 25, 2010, 06:35:56 pm
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I was recently diagnosed and am interested in NYU, probably surgery. I saw posts about Dr. Lalwani's and Dr. Parker, both comments were favorable. Does anyone have further experiences and opinions about them? I liked Lalwani and I am meeting Parker on Friday.
Also I notice many have lost a lot of hearing. I am wondering if the loss of hearing was because of the treatment, because you waited, or because the AN was fast growing. I have moderate to severe loss at the higher range now. I didn't notice my hearing loss because the tinnitus was so loud I thought that was why I couldn't hear correctly.
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Hi,
I went to NYU and had Dr. Roland and Dr. Golfinos. I can't say enough great things about them. They are absolutely superb in what they do! Extremely skilled and completely compassionate. A winning combination for me and many others on this board! Do yourself a favor and meet with Dr. Roland before you make any decisions. I give them both A+++++
Jen
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When I tried making appointment with Dr. Roland they switched me to Dr. Lalwani for insurance reasons. I would have liked to have met him. Did you think the hospital was good too? Was the surgery scheduled quickly after you decided to go ahead? Thanks, Lita
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Dr. Roland didn't accept my insurance but I fought it with my insurance company and they granted him as "in network" for me. It was worth it! What's your insurance? NYU is a great hospital.
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Empire BCBS PPO. You went twice to NYU, both Roland? Have you lost hearing, and at what point?
Have you heard anything about Parker or Lalwani?
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I only went once to Dr. Roland. I had moderate hearing loss with the first surgery. After the second, I lost all my hearing. I had the Translab done and you're guaranteed to loose all your hearing with that approach. Translab has benefits it is the most direct approach and has the least chance for recurrence. Faster surgery in and out. Don't know much about the other doctors but Roland & Golfinos are very well known.
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I started off kind of positive, reading and moving ahead steadily with this AN. Now I have had enough and disgusted that anything I had thought I figured out is uncertain. Mine is 1.1 and I have that annoying ringing. I don't know how much of my trouble hearing is from some hearing loss (at 2K to 8K mod to severe loss) or the damn ringing. I had seen two neurotologists and considering surgery at NYU (retrosig). My thinking was if I have the surgery now it would go better as it is small. I was thinking hearing would more likely be preserved. More dangerous if I was older or had a medical problem. It so far has not caused balance and facial problems.
When I looked at the survey on this site most people who had hearing before surgery lost their hearing - from levels 1 to 5 (not including translab surgeries). Also on the survey people who watched and waited in many cases - it seemed like 30% - did not have growth that caused problems. Other studies I read seemed to indicate there was eventually growth and many lost their chance for saving hearing.
Just spoke with someone from Ear Clinic (CA) tonight. He explained I could wait and enjoy my quality of life as I am hearing without other symptoms. Or I could have surgery, middle fossa.
So now the surgery I hoped would save usable hearing would possibly make me lose my hearing. The approach and doctors are even in question. If I were to have surgery this summer would be the best time for many reasons, although I know there is no rush it would be best for me. I can see there is no end to the issues involved and why this is a good place as everything is discussed right here. But I am tired and have trouble concentrating (do you ever get used to the ringing) I feel like just giving up from weariness already, and I'm just starting!
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Lita, welcome to our little club, sorry you had to find it, but you will not find more compassionate and caring people anywhere else!! I had middle fossa surgery done about 6 months ago. I retained my hearing, but it's slightly less than it was when I went in, but i'll take that any day! I would suggest doing a search for the term middle fossa and finding out more info about it all, there's many different opinions and experiences out there dealing with that particular thing. If you have anymore questions, please post 'em, you'll get plenty of replies, I am sure! Take care and good luck!
Jay
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Hi, Lita - and welcome.
I'm sorry for the belated response to your initial post but I've been a bit preoccupied with non-ANA things lately. However, I wanted to let you know that your feeling of frustration is fairly common when you find yourself diagnosed with an acoustic neuroma and seeking the best way to address it. Although it's a relatively rare condition, there can be a lot of options when the tumor is small at the time of diagnosis. I'm assuming that you've decided against irradiation treatment and are set on surgery to remove the AN but I also assume that you have the option of simply observing the tumor via semi-annual MRI scans to determine if it is growing. Often, these tumors lie dormant for years, as mine did. Post-surgical hearing retention is usually chancy but an obvious goal, although even with the Retrosigmoid or Middle Fossa surgical approach, there are no guarantees. Unfortunately, this is one of the inevitable risks involved with addressing an acoustic neuroma.
One of the realities you're apparently learning regarding ANs is that each AN patient's situation is unique and there are no 'magic bullet' approaches. Some surgical patients do splendidly and recover quickly with little-to-no hearing loss while others lose their hearing or see it greatly diminished but otherwise come through just fine while others (thankfully rare) may lose hearing (in one ear) and also struggle with intractable issues for some time. However, most AN surgical patients have a few temporary problems post-op, then recover nicely. I had almost no post-op issues and a good recovery. A few months later I underwent FSR treatments to kill the remaining tumor's DNA. That went well, too. Unfortunately, I had procrastinated about addressing my unilateral hearing loss (later found to be caused by my AN) and the hearing nerve was fatally compromised so hearing retention was never a real issue with me, pre-surgery. Although my neurosurgeon always held out a glimmer of hope, I just assumed my hearing was gone for good in one ear and I adjusted to that reality. That turned out to be a prudent decision as my hearing has never returned in my 'AN ear' (my left). I compensate as necessary. We're a very adaptable species.
We all share in your sense of frustration. It's a tough journey with many crucial decisions involved. No one wants to make a mistake and bitterly regret it later. The critical issues are (a) to find a doctor with extensive experience surgically removing acoustic neuromas, (b) a doctor that you feel comfortable with and, (c) a doctor that accepts your medical insurance and is 'in network'. ;)
These forums exist to help AN patients. We offer our collective advice, information that is practical and based on AN patients' 'real-world' experience - as well as our unequivocal support. We don't second-guess other AN patients medical decisions and we try to offer as much encouragement as possible. We even have a bunch of folks who are willing to talk on the phone to people dealing with AN issues, especially the newly-diagnosed, like you. We know you're in a tough spot because we've been there, too. We made it through and so will you. We don't offer you happy-face bromides but we are positive and try to help those who are discouraged see that this is not an insurmountable medical problem. We stand ready to answer your questions (if we can) or direct you to a place where you can get an answer (if we know of it) and we always try to look ahead, not focusing on past problems that can't be remedied. I hope you'll find the forums both friendly and informative. As I often state, we're 'open' 24/7. Drop in anytime. You're among friends, here.
Jim
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I am calmer today and glad you wrote. I just could not read all over the site as I could not process anymore all I was reading. Yesterday was the worst day I had. I imagine some people have also not noticed their hearing loss at first and lost it, as began happening to me and did happen to you Jim. I went from hearing loud ringing for two months to finding I have some hearing loss then diagnosis of AN. Now it seems I am having more trouble catching what people say and using that ear for the phone, and it seems my hearing is steadily changing. Do you ever get used to loud tinnitis which I find interferes with my processing.
I feel I am not comfortable waiting. The reason I feel this way is my symptoms are increased and it has only been two months. The other problems I don't have - with balance or my face. I want your outcome Jay but also know it may be more like Jim's. I spoke with four specialists (NYU Mt Sinai and House Ear) and all left it to me for either waiting or surgery, reviewing much of what you all already know. House and Smouha leaned toward waiting. I really really like Dr. Lalwani. Dr. Parker I saw today and he is just as wonderfu. He also was patient and explained everything, gave me as much time as I needed for questions. That and reading the posts calmed me down.
It is really a crazy situation though to make these decisions. The posts of what I thought I heard actually cheered me up quite a bit. Aren't we resilient when we could have different outcomes and make the best of it. Still hoping I will have Jay's. I have feeling I will be here more because this is only the beginning. Thanks for writing, Lita
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Hi Lita and Welcome to the forum!!
For starters I have to say Jim covered much. The biggest point being "each AN patient's situation is unique and there are no 'magic bullet' approaches". Boy is that the truth!!
Have you had any other tests done yet like an ABR (Auditory Brain Response....for hearing) or others for balance, facial nerve, etc??? Those may help play a big role in decision making. Like since your hearing is already affected some, if the ABR comes back with bad readings there may not be a good chance to preserve hearing. (just saying, but not positive...doctors should know more). Translab is the surgery that is 100% hearing loss. The Middle Fossa "supposedly" gives the highest chance to preserving hearing, but I am not sure I believe their stats. Now Retro too has chance of hearing preservation, but seems like it might be the higher chance of post op head ache issues. Now with all the surgeries and the stats, nothing is guaranteed and everyone IS different.
Now you asked about hearing. I was in watch & wait for awhile because my AN was found not due to symptoms from it, but having a CT after hitting my head & another (benign & stable) brain tumor was found. My AN was very tiny at the beginning, but was growing for sure. So by the time it was around 1cm and just started to affect the ABR test I decided to go with Middle Fossa (for me I couldn't do radiation, wasn't crazy on what I read & I am more a worrier, so just wanted it out of my head). Anyways, my hearing loss was not before the surgery, and probably not right away. But my doctors monitored the ABR while in surgery and mine tended to good bad once, but came around during closing. Then I ended up with some big time post op brain swelling & delayed facial paralysis. That made me lose my hearing for sure (which I am not 100% positive how much was really there anyways). The doctors said the swelling did a final "toasting' of my nerve. I did my research after and found very few people got "lucky" enough to have hearing preserved. You mentioned Jay & his situation would be the best & most idea forall of us, but all different. I even once thought maybe because his tumor was smallere?? Not necessarily either. I know 3 others that had Middle Fossa around our time and tumors smaller than his that lost their hearing too, ugh! So much depends on where the tumor is when they get in there too. As for tinnitus, I got that almost sometime post surgery too. Seems like most people who have it before surgery, it don't go away.
I hope I am not too much of a bummer post here, but I know you are at probably the hardest point of this journey I can remember. Sometimes I had just wished my tumor had been big enough it damaged my hearing & balance before, so then Translab would be only option....no even radiation is an option after some sizes. OH, as for balance ans smaller tumors...not sure if your doctor mentioned this....but usually the balance nerve gets severed during surgery because majority of the AN tumors are on that nerve. Well with smaller tumors our body & brain hasn't started compensating for the balance issues much. Whereas with larger tumore many times the brain & body has already started to compensate for the balance issue which makes it easier in recover. PLEASE note I didn't try to give any guarantee, I use many "Many or Some"
Once again, I don't want to be bummer. But believe in honesty and honestly for me personally I didn't read too much before surgery and really had my hopes up to have 'that persons outcome', but it didn't happen. So that too was frustrating. Knowledge of possibilities can actually be of help.
Best wishes!!
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Gee, you would think I wrote enough already.....sorry.
I forgot to mention or ask if you got any information from the Acoustic Neuroma Association (ANA)? They have GREAT booklets of info and newsletters (even past ones available posted on their site, if you join the group). You can join or just buy specific booklets what you want. I think the annual fee was $40 (well worth it for me).
Their website: http://anausa.org/
Best wishes!
Denise
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Hi Lita! After reading your post I see alot of simiarities. I`m with Drs. Roland + Golfinos at NYU have a 1.1x.06 AN, tinnitus with just a slight hearing loss on my AN side. There is alot that goes into our decisions. In my case tinnitus has been with me for 30+ years and I`ve tried everything with the best results coming from Neuromonics at NYU. It still hasn`t cured the tinnitus just made it more tolerable to live with. While being diognosed 3 years ago at age 59 and possibly having this AN much longer I`ve decided to Wait + Watch. So far keeping a healthy life style everything is "stable" going for my next yearly MRI in AUG., with my hope of never having to intervine unless necessary. Under my circumstances my choice was made especially with me approacing 62 now. All circumsances are different and I`m knowing whatever your choices with todays knowledge your going to be fine. Best Wishes, Mickey
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Hi, your experiences help. When I read all from the past posts, especially newbie questions as there is where I thought I should start, I really became overwhelmed, also having trouble thinking with the ringing. I am going to look up neuronomics.No outcome per se is a nightmare to me except dying in the OR. The rest I can consider and want to know as much as I can focused like this.
Pretreatment is it possible to have the ABR not good and still have usable hearing? I was considering this test. I don't know if this is necessarily a good sign but my tumor is more medial with the lateralmost portion of the canal clear. I also wonder if that is why he suggested the retro. How does middle fossa help minimize the hearing loss? It seems the tumor is kind of tangling the nerves which is one reason for loss and the swelling is another reason. Denise, do you have any hearing in that ear? Did you have problems after surgery with balance, and still now? He told me the balance nerve would not be saved.
Micky, I am 59 right now which gives us another similarity at diagnosis. Has your tumor not grown? Also, I hear some don't grow at all or grow so slowly even less than 8 mm per scan. But do the symptoms remain the same. When I thought of waiting I imagined them insidiously grasping onto nerves or something. Many thanks, Lita
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Supposedly the Middle Fossa can give more of a direct approach to the tumor while seeing the auditory nerve the best and that is why it is 'supposedly' the better of chances for preserving hearing. ALTHOUGH, it is only a slightly higher % than retro. I had read on here before that some doctors don't even do Middle Fossa, whereas some don't even do the Retro. Don't exactly know why. There also seems to be different side effects after surgery for the 3 types of surgery. I "think" it may be possible to have a not so good ABR and still have usuable hearing, but not sure to what degree and how much of a difference it all makes. Doctors would have to answer those questions better.
As for me, yes the hearing is completely gone in that side. I actually had real crappy balance for a couple weeks that I had to use a walker. I think a lot of it was for security purposes too that I had the walker. I've had a history of passing out & hitting my head. Last thing I wanted to do was stumble and hit my newly messed with head. I did all the vestibular/balance exercises the doctor sent home with me, plus plenty of walking the first month post surgery, so that helped get me back on track good overall. My balance is not perfect, but my doctors told me it probably never will be. Seems like a lot of people have that here. Not an issue for me really.
Personally I think watch & wait is always a good thing depending on the size of the tumor and what it may be causing.
Interesting on the similarities of you & Mickey ;) (maybe I missed), but have either of you looked into radiation at all???
Take care,
Denise
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Hi Lita,
Just wanted to jump in here cause it sounds as if you want to have the surgery to stop the ringing. It sounds like none of the drs. you have seen so far have told you-the ringing never goes away. Something about the brain sending some signal to the ear, dont quite remember how it was explained to me. I actually have a hissing sound, had surgery in August 2008 and still have the hissing and always will. I had retosigmoid surgery, still have the same hearing I had before the surgery (mostly) but I just wanted to let you know, the ringing doesn't go away so dont base your surgery desicion on that. If you have any questions or want to talk feel free to e-mail me.
Take care,
Lois
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The tinnitus does bother me although it is hard to say what is causing my trouble hearing, how much is the loss on that side (which seems to have worsened since 2-3 months), the tinnitus sound, distraction of tinnitus, or combination of all. I looked up the neuronomics and it is something I would consider if I end up having this permanently. They told me it is uncertain as to whether this would go away following surgery, as is everything uncertain!
How many AN surgeries is considered experienced for a neurosurgeon, I guess counted by how many a month or year rather than total as some doctors are so much older? Is it true the neurosurgeon does most of the surgery and the neurotologist just kind of opens up and assists? Is it best to leave the hospital as soon as you can and are stable to avoid all the nasty infections in hospital? Did you have balance problems before surgery Denise? Thanks all, you are such a nice group to remember what it was like when you were in this situation first diagnosed and help us just starting out.
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How many AN surgeries is considered experienced for a neurosurgeon, I guess counted by how many a month or year rather than total as some doctors are so much older? Is it true the neurosurgeon does most of the surgery and the neurotologist just kind of opens up and assists?
My neurosurgeon performed the entire operation with some help from his assistant who is also a neurosurgeon, but much younger (it was a 9-hour surgery). He is in his 60's and has been performing AN surgery for over 30 years. He stated that he had 'lost count' of how many AN surgeries he had performed but that it was "many hundreds". I believed him. The hospital nurses all told me that I "had the best doctor in the state for someone with an acoustic neuroma". This was reassuring. In fact, he did a fantastic job (no complications at all).
Is it best to leave the hospital as soon as you can and are stable to avoid all the nasty infections in hospital?
Yes, if possible. However, your release is determined by your doctor based on your condition. For AN patients, the usual time in hospital hovers around 5 days but some come home sooner. Some stay longer but usually only if there are post-op complications, such as a CSF leak.
I hope my response helps answer a few of your questions but others will add to the thread, I'm sure.
Jim
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Hi all! My AN has stayed "stable" no change for 4 MRI`s since 58 years old.. My second yearly coming up in AUG. with no changes in symptoms as of now and even feeling better goin on 62 now.. Of course you must know from my past posts of all I do to stay healthy, W+W boards etc.. If I ever needed treatment I probably would look into Radiation first with my Dr. who does both. My ultimate goal is hopefully not to intervine ever with my symptoms being very bareable. Mickey
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Has any one done the radiation twice . I did it once and don't know if I should do it again the AN started to grow again.
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Lita,
I had middle-fossa with Dr. Roland & Golfinos, I was very lucky, my hearing actually improved (currently 96% speech recognition) , I did have some ringing but can honestly say have not had any since the surgery. Did have facial paralysis but it has greatly improved, if you didn't know about AN's you probably wouldn't know.
During the time from diagnosis to treatment- my hearing had decreased a little so that is what made me decide to go forward with the surgery, especially because I wanted to try the mid- fossa approach.
Make sure you ask how many surgeries your doctor has done for your procedure- there are not as many surgeons with experience in mid-fossa approach for instance. I would think at least 50- 100 surgeries would be good experience.
NYU was a great hospital I had surgery on a Wed and went home Sat morning, you should be concerned about infection but I have to say every time someone came into the ICU or my room they washed their hands. I had my surgery right before the July 4th weekend so, I never even had a roommate.
every person/ surgery is different. I know this is a struggle but everyone on this forum is rooting for your success
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Thanks, I am pretty good now, from reading a lot here and now having a plan - I am going to NYU on June 22. I see some have just had surgery and others also have dates coming up. I decided on surgery as I felt I would regret waiting. I've lost hearing already and if I lost more hearing or had balance, face and other issues and then had surgery, I would regret it. I feel I have a chance at keeping some hearing and now reading Darlene, I see it could even get better. Dr. Lalwani is an associate of Dr. Roland and does about two a week, Dr. Parker does them less frequently but it seems in the good range. Both have been wonderful at the consultations, giving me full explanations and plenty of time for questions. I feel comfortable with them.
I had a week or two that were difficult. The decision making was rough. Some people have been not particularly kind which took me by surprise, but most have been great and true to their nature, that is why they are good friends.
How long were you in ICU Darlene? Did you have much hearing loss on the audiology test before surgery? With the day coming up for me it is so good to know you and some others felt it was a good hospital. I guess the stay will be a few days, but getting out once I'm stable sounds good. In the past it used to be the insurance wanted you out so they didn't have to pay. But leaving to avoid infections is a good reason.
I was told the tumor is on one vestibular nerve but both will be removed/not working. Does it really only take a few days to get your balance and walk okay?
Is having hearing in just one ear very different other than not knowing from what direction the sound is coming? My other ear is fine but I have some hearing loss (my speech recognition is still good now), but with the loss I have and the tinnitus I feel I don't hear as well . I seem to miss what people say more than I did in the past. I'll see what I have after surgery.
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Lita -
the body does adapt to the balance issues post op, but it will take more than a few days to "get your balance and walk okay".
My doc had me do vestibular exercises both pre and post op and it helped a lot. Some surgery patients eventually go to a physical therapist for help in this area.
Everyone recovers differently, but it's fairly safe to say that you are looking at weeks or months, at least.
Jan
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Has any one done the radiation twice . I did it once and don't know if I should do it again the AN started to grow again.
Hi Howard and welcome. Glad you found us here. I don't personally know of anyone (off hand) that has had radiation done 2 times but have to ask, if you have already had it done once, what kind of radio-treatment did you have?
In my research for radio-treatments, I did have confirmed to me (as I did inquire) that if my initial radio treatment failed, could I be re-radioed? Answer, in the case of Cyberknife (CK) was yes, thus, one of my main reasons for choosing it. As I inquired about CK only (as that was the route I was taking), I cannot answer if other forms of radio can be re-done. Hoping others chime in as well.
Again, welcome.
Phyl
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My topic can now be "diagnosed, made decisions" as I will be having surgery this Tuesday at NYU. I feel calm enough but very fatigued due to working a little extra and preparing for this. Thought I could rest tomorrow but last minute things to get ready and was asked to come in for final MRI and markers tomorrow (don't seem to remember reading about this).
I also realize there are a few other newbies (wait, I don't think I am a newbie anymore) and want to welcome them - especially good wishes for Vincent as he is going tomorrow. So glad to have learned so much about AN, mostly the experiences of people with AN was what I needed most. Thanks everyone and keep me in your prayers, Lita
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Home from hospital, operation Tuesday. Tiliting and dipping, some double vision, tinnutis. Face is good. Tumor out was attached not so good to hearing nerve. Sound right to that ear almost feels like it transmits to my unaffected ear somehow but not heard really through me operated side. Don't know hearing may not have lost all as when I touch ear hear a little something. It was rough I felt and afterwards morphine got me through. Surgery 7-8 hours. Have trouble typing this and concentrating. Shaky and can't process conversation easy. Need a lot of help walking. Surgeons and NYU was good.
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Hi, 'Postie' Lita ~
Congratulations on your successful surgery - and being home! I'm glad to learn that you felt confident in your surgeons and comfortable in the NYU facility. You'll be in a transitory phase of recovery for awhile but soon, that will pass as your body heals. Do as much as you can and rest as much as you need to but please don't fret about posting. We understand that you're just out of the hospital after a serious, extensive surgery. We'll all be here when you're feeling stronger.
Jim
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thanks Jim. Had a drop or two from nose after eating something soft. Anyone think it sounds alarming? On other side nostril. Don't want to call or get checked right now, by far it was such a slight wetness, no taste. Thanks
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thanks Jim. Had a drop or two from nose after eating something soft. Anyone think it sounds alarming? On other side nostril. Don't want to call or get checked right now, by far it was such a slight wetness, no taste. Thanks
Not necessarily alarming but something to be aware of and report to your doctor if it continues and/or gets more frequent. However, I can understand your reluctance to risk being re-hospitalized this soon after your discharge. I would have felt the same way. Still, a CSF leak is not something to ignore so remain aware of the possibility and do what you have to, if you have to. I'm hoping this is something inconsequential - but time will tell.
Jim
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I called MD and will go in Thurs. Only a few 20 seconds of tiny drip felt a few days and taste in mouth is still yucky but not salty or metallic. No different headache. Double vision checking with Dr. Louhava or name like that neuroophth Thurs too. Facial nerves perfectly fine so don't know why some double at certain gazes. Thanks Jim, will call because looked at others experiences with leaks and dont want that.
too sicknow to say more but see there is a beta something simple lab test to assess for csf leak in mouth or nose. It seems too simple to not be done routinely at some point before leavinghospitalh.
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My beta transferrin test was sent out to be done and this was at a big teaching unversity so think maybe it is not a simple routine one. One can have the nose run just from eating and being active and get warm. So that is why is hard to tell about it. My surgeon only says is a leak if bend the head way over and the fluid has to drip out like a faucet and can even atake a bit of time. My nose runs on the left with eating a lot. On the right when I get too warm. I've had surgery on both sides with NF2 and also had a CSF leak. No headache, no salty tastge but just the drip from the nose.
Cheryl R
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Hi Cheryl, is this waht ou have after surgery or with CSF leak" My nose runs on the left with eating a lot. On the right when I get too warm. " Big help thanks for letting me know. Too chickento leanj forward. had amt this am about 1 Qtip side.
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Lita, I am NF2 and have had 3 tumors and 4 surgeries (the one being the leak fixing surgery) The left with eating and the right when active and warm is now, Last surgery was 2 yrs ago. The leak was on the other side and 4 yrs ago so have had and still do have runny nose on both sides. My surgeon had us do the bend over test at 3 days post op and then at home whenever needed to determine if a true leak. Several ANers have ended up with runny nose with eating or activity. I know right after surgery it is worrisome so can you ask questions thru the nurses or a resident where you had surgery. I go to Univ of Iowa and they are good about being called to answer our questions. A leak is usually constant and not just with eating.
Cheryl R
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Having the best day yet yesterday, called re the wetness on one side, clear. Unfortunately it was just befor you posted and did not see the drip drip part yet (i NOT have) Md called back and wantedchecked at NYU instyructed on call about drain and I was convincedi was in for a nasty ordeal. A friend had referred to her hosbnd's horror store re csf drain as excruciating on other occasssion - not at this time regarding me. I lost it as had been feeling so much better and any bravery disappeared. Checked in er many time tested with no true drip driip and could go home felt so emotionally drained.
Cheryl what you went through all those timesdont know how even if over years, too much. Sorry you have nf2. Not read around much cause focussed on plans before and now too dizzy and no sound and loud imaginary sound and double. Tomorrow NYU eye and surgeons.
you right beta TEST need lot of fluid so dont do routinely. I had total in day not ecven 1/4 teasp
today is eat and peace dau/
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Lita,
Just checking in hope you are doing ok? The first few weeks after surgery are tough, I hope they are not made worse by complications. I will keep you in my thoughts and prayers!
Darlene
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Hi Darlene, getting better and trying to get used to the sensory changes. Can finally see computer and type. Not yet navigate around much though. Now I am 2 weeks three days. No CSF leak, just trickle behind nostril for a few days. Spared hospitalization and procedures - didn't move was petrified. If you don't mind me going over them, I have tinnitus that sounds like a white noise machine is on a high volume and strapped to my operated side. I don't seem to hear anything in that ear except for the this (had other tinnitus presurgery). Voices I want to hear sound in the background to the tinnitus which is damn annoying. From what I read here before this is something I can continue to have and there are some things I can try to handle this. My surgeon's associate told me she felt it may go, but it is unknown when.
Balance is problem, can walk with a walker. Feel disequilibrium would describe it best and there is some altered vision such as double vision and movement sensations in some gazes. Gentle tipping like on a boat somewhat whether I move head. Given simple eye exercises for double vision. Can't tell if vertigo or dizziness or balance or vision specifically, just seems not right. Is this wonky? Doctor mentions evaluation at one month with possible vestibular or eye therapy depending on symptoms at that time. Emotions and concentration not normal yet.
Did everyone get contacted about path report by doctor or at follow-up? Since almost always normal presume just normal AN? Is a neuroma exactly the same as schwannoma? Could not find during a search.
I guess next week I should move to post-treatment with my notes on the bottom. Someone help me move? Thanks all. I still read a little here every day, really nice people. Thanks Darlene.