Terrified with all this

[Mary More]

Hi, I was diagnosed with cystic and solid 3cm AN on my right side, it is compressing my cerebellum as well as my brain stem. My symptoms so far are Hearing lose, balance,fatigue back pain on my middle right side along my spine and numbness of the right side of my face and tongue and I have no taste on that side. I am also starting to feel pressure in my right ear.I am feeling overwhelmed. I was highly advised by my ENT and Neurosurgeon that due to its size and the fact that it is cystic and solid it does not respond well to radiation, that surgery is really my only option. They have told me that in my case the retrosigmoid approach is the best one and are planing a 10 to 12hr surgery, which scares me. I have done a lot of research on line . I found that it has helped me somewhat cope with this very scary journey.  How ever, no matter how much I read, I feel alone, I know no one that has gone down this path and no one I know has ever heard of it. I would really appreciate hearing first hand from someone how can relate, I am scheduled for surgery October 28Th, seems so soon but yet too far. I an from Montreal, and having the surgery done at the Montreal Neurological Institute,  if there is anyone from around here I would love to hear from you. I would love to hear from anyone from anywhere with advise. I am terrified of what's in store for me. Thank you

[Echo]

Hi Mary,

You have found a wonderful support group within this forum.  Your fear is completely understandable.  I was fortunate with my AN that I had a choice between surgery or Gamma Knife and I opted for Gamma Knife.  It was a very long and tough decision and I can tell you I had an equal amount of fear regarding both choices. There were many days where I felt totally overwhelmed with what I was going through.  You are not alone! You will get through this and we will be here to help you.

As a fellow Canadian, can I recommend you also search out The Acoustic Neuroma Association of Canada - www.anac.ca.  There are support groups across the country and I'm sure you will be able to find contacts in Montreal, Ottawa and Toronto that will be of help.  I found it very informative and comforting to meet and speak with others who were using the same Hospital facilities and Dr.s as I was. 

Keep in touch and good luck.
Cathie.

[DeeDeeR]

Mary,  We are in the same situation as are many on this site.  I had my pre-op appointment yesterday, my surgery is October 24th.   It is so hard to keep it together in all of these appointments (or keep it together at all), the docs and personnel are wonderful, but when it is you, this "matter of fact" stuff is terrifying.   Just when I think I can't cry anymore,  here it comes again.  You are the only other person that I have talked to who has said that the AN has affected their tongue.  I feel like my tongue has been scorched and the side of my mouth in numb (I feel like I am drooling all of the time)  I am blessed with a wonderful husband, family and friends for support, but no one except those who have been through this know how it feels.  I started to journal my thoughts and feelings, it has helped.    Ultimately, I have my faith to rely on, God is my source for keeping sane during this.
Remember:  God will not allow a storm unless He has a purpose for it
                    Trust in God's faithfulness
Good luck and God bless.

[LakeErie]

I had a large, almost 5 cm, tumor that compressed both my cerebellum and brain stem and caused many of the same facial and mouth symptoms you are experiencing.
I had a subtotal removal of approximately 95% of the tumor with residual tumor left on the brain stem and facial nerve to preserve function.
I still have facial numbness and tingling along with taste disturbances but they are greatly improved at 2 years.
I cope well with SSD - single sided deafness - and have few balance problems any more. My right vocal cord and swallowing muscles were a problem but I began to regain movement of both at about 8 months. Overall my symptoms improved over a period of 16 months after surgery before reaching the present state.
It is impossible to predict any individual outcome, but in my case, any surgical outcome was better than the outcome from doing nothing. My recovery was no walk in the park but it did get easier with time and I did get better eventually. Give your body the time it needs to recover and be patient. Recovery is not a race. Try not to compare yourself to others. Recovery can come in small steps, but they do add up. Any complications you may experience will often be temporary, those that are not temporary you will adjust to as I have, and some others can be addressed medically. You will recover. Good luck.

[Brewers7]

I also had a very large AN with brain stem involvement.  Although I had many complications, I am back to work full time as a trial lawyer.  God bless you in your journey.

Susan

[MDemisay]

Dear Mary,

You are right brain surgery is very scary, especially if you are alone, however, EUREKA!!! you have found a website that is full of information and is wonderful for asking questions, getting answers and excellent for calming fears!

 All you have to do is research and select (the right for you) doctor and (the right for you) hospital. You have a big AN (mine was 3.1 cm) It took me one year and a half to get my self back. Still I have issues.

Which one is right for you? That can only be found out through research and interview. Now that you are here, you are not truly alone. Please take comfort in the knowledge that there are a great number of ANers on this website who have gone before you and there are a great deal that will come after.

Remain focused and you will be alright. You may be focused on getting rid of your pesky AN,  that is a good short term goal....However, if one looks at the big picture(long term) it is your return to normalcy that you should focus on. Which of us after we have been on this journey is ever the same, I would argue that for having known one another that we are better! Certainly ,we are more encouraged! Which of us in our busy lives really wanted to slow down? During your recovery, you will have a chance to reprioritize your life......take it.

It is a daunting task, you are on a long journey. Welcome, we will be with you in spirit( if not in body)! I came here terrified in February 2012, panicked by my prospect of having to choose Gamma Knife radiation but through a process of careful research and discussing my fears others who had gone before me calmed me down.

It is not a panacea (now that you are here) it will require effort on your part in choosing the procedure, the doctor and the hospital. The thing I didn't know at the time of my operation in 2004 is that there are several excellent outpatient treatment centers after the hospital.

I can tell you that the road your now on has been well traveled for sure. I can attest that it is definitely better than being alone as I was in 2004.

One way you can start making it smaller is by naming it! That's right! That way you can start willing it to shrink. My tumor was called "Irving" then in 2004 it was subtotally removed and became "Irv" then in 2012 when I had it irradiated it became "Dead Irv".

"Irving" was the most repulsive name I could think of! I leave you to your own devices to devise an equally repugnant name! Humor is one way of a defense other defenses I used were prayer and meditation.

One good thing is your tumor is benign. Can you imagine I thought mine was a brain tumor that was malignant! In 2004, mistakenly, I went on to a malignant tumor website It was a while, till someone told me about the ANA. By the time I had gone on to this website my surgery had already been scheduled and was a week away.

During the next weeks, you are going to be very busy, probably spend quite a few sleepless nights and have a few nightmares, I don't envy you this part, it was the most difficult for me. It helps if you can't sleep to journal your fears so that you can rationalize them in the morning.

Good luck get as much sleep as you can.  Remember, the computer is on 24/7. Personal Message me if you need to. Don't panic! Talk it out!

Mike

[Tod]

Mary, hang in there. It is all scary, but for most patients, everything works out fine. Sure, some of us go through hell for awhile or have deficits that take time to recover (or never do), but most everyone adjusts to a new normal after treatment.

I had a larger tumor with significant brainstem compression and was told I had three to six months to take care of it or face coma and death. What was planned to be a 14-18 hour surgery was 32 hours. I ended spending more time in ICU (2 weeks) and at home (10 weeks) than anticipated, but it has all worked out pretty darn well. Two years later we determined the remaining bit of tumor was growing again (they were only able to remove 90-95% of tumor) and so we did 28 sessions of radiation. Mostly that was a walk in the park.

Life is extraordinarily good. I have had some serious deficits but they have done a pretty good job of healing and fading away. Some remain, but they are of no consequence. You will have a lot of support on this forum, and perhaps with a local group as well.

Best of luck to you. Life really is good.

-Tod

[Mary More]

Thank you Cathie, I have contacted ANA of Canada, they have already given me a contact name. This seems to be very overwhelming at this point but thanks to this forum I can speak to others that have gone through this winding road.

[Mary More]

Deedee. Yes we certainly are in the same boat. Like you I have a lot of support from a loving husband, daughters, family and friends but as you know they can only imagine what I'm going through where as only someone who went through it or is going through it knows. Oh yes all the blood work,  ( 1 more on the 26) ECG loads of questions and so much info etc... It doesn't seem to end. I've been trying to be strong for my family, I find myself  consoling then . I haven't shed a tear, they say I'm in denial, but I have to say when the whirl wind of medical appointments has settled and now it's only starting to hit home. Ah yes the numb tongue, it is such an awkward feeling ,yes like I am drooling, wait. I am drooling. OMG your surgery is only four days before mine. Good luck, I pray that God is the eyes and hands of your surgeons, and that everything works out great. Please keep us posted.

[Mary More]

LakeErie, Brewers7, MDemisay and Tod thank you all for your advise, wishes and prayers. This seems like it will be a journey indeed. I hope you guys all had the support you needed at the Tim of your ordeal. It's a wonder how we get though this horrific experience intact. You guys are my new heroes, but at the same time I am totally frightened by all you have gone through and the fact that this might be in store for me.

I was diagnosed this summer, my hearing hd started to decrease a few years ago and I attributed that to getting older ( 52 on October 9). Saw my GP who referred me to an ENT two and half years ago. We talked about how I was not a candidate for hearing loss and he told me that the next step after a hearing test was an MRI ( to be sure there was not a tiny benign tumour) then I could fitted for a hearing aid. Well I was not ready for a hearing aid, I was not that old. And I never considered the possibility of a brain tumour, I take care of myself ( I am fit, eat well, don't smoke etc...). Fast forward to this summer. I finally face my demands and decide to get a hearing aid. Return to the ENT and he sends me to have an MRI done. The radiologist called me into the screening room and was very alarmed showing me the images and telling me how dangerous this tumour was and he called my ENT and sent me right back to see  him with the report and CD in hand. once  back at the ENT's he refers me to another ENT who specializes in this sort of stuff. ( we all react differently to stressful situations, after this kind of news I went to the mall " cause I needed sleepwear that opens in the front, cause I hate those hospital gowns. Mean while I don't want to tell my husband anything till he gets home (he's a pilot and was across the county. He needed a Clear mind in order to fly back safely) Met him, he explains everything, new meeting this Time with both the ENT and the Neurosurgeon we go over everything, my options, well really my only option is surgery considering that it 3cm solid and cystic, I was told it behaves more radially, doesn't respond well to radiation, tend to grow faster and Is more difficult to remove. ( I'm thinking "oh man I'm so screwed") both surgeons explain everything and how they do the surgery but rehabilitation is really my work, they recommended the retrosigmoid approach. This approach scares me cause I keep reading that it has more complications, although my Drs have reassured me that this is the best approach for my type of tumour.  I know they may not be able to remove my squatter completely and may have to do radiation. I have never been poked and probed as I have been in the last few weeks.

Thank you so much for this forum, it is helping me to cope. A close friend of mine how went through breast cancer treatments has told me and you guys seem to agree, that when we go through something this big we are never the same. Thank you for your support.

[volleymom]

Mary and Deedee,
Trust your surgeons and surgical teams to do their best for you.  I was lucky enough to have a reassuring friend who had gone through the same surgery with my same doctors several years before me.
You might wake up from surgery hearing little hammers in your ear, but one sided deafness is not so bad.
I had retrosigmoid surgery about 4 years ago and it all went well.  I learned the best trick from a nurse in ICU afterwards --if you start to feel nauseated, ask for an alcohol wipe. Inhale the scent of the wipe and your nausea goes away before she can draw up the nausea medication in the syringe.
My surgery was only about 4-5 hours long. I was discharged 3 days later on Thanksgiving day. I never had severe pain post op.  I had facial nerve weakness after surgery, but it keeps getting better and now most people don't notice it.  I was very fatigued for several months, but enjoyed being on my feet cooking in the kitchen during my recovery time until I went back to work at 10 weeks post op.
As soon as you can, start taking walks outdoors and do your balance exercises, your balance will get better.

I will be thinking of you in the coming weeks.

Kathy

[Mary More]

Hi Kathy

I agree, faith in our surgeons and surgical team is very important. I keep being told that I am in very good hands. With these surgeons and at this hospital. I checked on Rate My Doctor and my neurosurgeon rated not only 1st but 2nd also in Montreal, and my ENT surgeon only lost points cause he is a shy man, doesn't talk very much but is a great surgeon. so I think I'm in good hands. I was diagnosed with AN  in July, things moved real fast. The surgeons explained to me that they work with a specific Neuro-Anesthesiologist and team, and all have to be available. I was originally scheduled for surgery on September 30th but that Neuro-Anesthesiologist was not available, and because unless it's an emergency they rather have a well planed surgery with the right team ( to my surgeons my AN is considered a " medium size"( everyone else called it large)  they often operate on very large tumours ( if to them it's medium, fantastic). I agreed and it was rescheduled to the 28th of October. At this point all my pre-op tests are done except one last MRI on the 24th.

Thank you so much for the advice, I will defiantly be using the alcohol wipes. Wow only 4-5 hrs that's great, I'm jealous. You are my inspiration, I too want to be out in 3 days, even if they told me 5, I like 3 more! Thank you for caring.

Mary

[mk]

Hi Mary,

I just saw this thread, I didn't check the forum for some days because I was visiting Montreal! I am from Ontario, and travelling back home today.
I had a similar tumor as yours, a bit larger than 3 cm, previously radiated, similar symptoms, and I had a 11 hour surgery via retrosigmoid approach. At the hands of good surgeons you can have a great outcome. Feel free to send me a PM if you would like to discuss more, and I would be happy to discuss over the phone too.

All the best,
Marianna

[DeeDeeR]

You all are just awesome!   They told me Monday that they were doing the translab procedure, I  was freaked out to think they were going to do an incision on my side.  But considering what is going on in my head, I guess that will be minor.  I keep hearing the phrase "the new normal", I just am wondering what everyone is talking about.  How will I look? How will I function?  Will I be a different person?  I guess I won't know the answers until after the surgery.   This time next week I should be half way through the procedure, I pray it goes well, as I also pray for you.   I will try to post as soon as I am able after surgery.  Prayerfully, we will get through this.  Thanks to all...

[Jim Scott]

Hi,Mary ~

Please forgive my late response. 

In May, 2006 I was diagnosed (via MRI) with a 4.5 cm AN that was pressing hard on my brain stem.  After viewing my MRI scans, the very experienced neurosurgeon I engaged said he was surprised I was still walking around.  My symptoms included total hearing loss in the affected ear (my left), imbalance, dizziness, stabbing pain (at the AN site), fatigue and loss of the ability to taste (which precipitated a 35-pound weight loss). 

Three weeks later I underwent Retrosigmoid Approach microsurgery to 'de-bulk' the tumor (peel off it's layers) and make it vulnerable to planned radiation.  The surgery went very well - no cpomplications - and all of my pre-op symptoms immediately disappeared.  I was home in 5 days and after three months I underwent 26 FSR sessions intended to destroy the tumor's ability to grow.  Subsequent MRI scans indicated tumor necrosis and the beginnings of shrinkage of the remaining tumor.  In the seven years since my surgery and FSR, life returned to normal and I'm doing great. 

The majority of AN surgical patients have a similar experience.  Although the prospect of having your skull cut open and a tumor removed is daunting, with experienced surgeons on your team you should have a reasonable expectation of experiencing a positive outcome.

Please try to stay focused on the positive and use these forums as a resource.  We've all been where you are and want to support you in this journey no one wants to take, so you are not alone.

Jim