Author Topic: ANother newbie  (Read 926 times)

ANderson1982

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ANother newbie
« on: February 07, 2019, 04:38:46 am »
Hi all. I was diagnosed with a 2.5cm AN on left ear 2 weeks ago. Have 1001 questions I wish to unload... Hope you guys can shed some light...

1. Given the size of the AN, doctor strongly encouraged for surgery as radiotherapy or wait and see are not suggested. True?

2. After ops, I will lost my hearing totally on the affected side as the AN is large. There is no way of preserving any amount of hearing left. True?

3. After ops, it will take about a month (most likely) to regain my balance without assistance from other people. I will experience dizziness and vomitting during this period. True? Any other side effects that will affect daily tasks?

4. Doctor mentioned that he will not remove the whole AN as not to affect the facial nerves. Around how many percentage of the AN can be removed? How long before it will grow back to the extent I will need another surgery?

5. Is there anything u do or not do that will aggravate the AN?

6. Is fatigue a real problem of AN sufferers? I noticed in recent years, I will felt very tired intermittently and dozed off.

7. Will AN cause short term memory loss? I realized I could totally forget things an hour or day before.

8. Does AN affect your thinking capability?

Thanks for any advice..

agavegirl

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Re: ANother newbie
« Reply #1 on: February 07, 2019, 12:48:34 pm »
While I am a newbie as well; diagnosed Jan 4, seeing specialist next week, I have done a ton of research. 
1 Large tumors need surgery, not gk or wait and watch. 
2 Loss of hearing depends on surgery type.  I have no hearing loss so I'm hoping the doctor recommends Middle Fossa Approach which has the best results for hearing retention.
3 Don't really know - everyone's different
4 Again this depends on your specific tumor.
5 My only symptoms have been balance and dizziness and fatigue, they are easily aggravated but just about everything.
6 Yes fatigue is real - I've read that it stems from your body working overtime to compensate for the loss of functioning in the nerve.
7 Don't know
8 Don't know - I've seen posts about word confusion, but I don't know that its from AN or maybe from the meds post surgery or something else.

Gtmochi

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Re: ANother newbie
« Reply #2 on: February 07, 2019, 05:24:41 pm »
Hi ANderson,

The just-diagnosed-and-figuring-out-a-path-forward part is the worst portion of this whole AN ride.  I am sorry you are having to deal with all of this.  You will be ok!

We have a similar sized AN, so I thought I’d share:

1.  In my case, the doctors with whom I met told me my options were either radiosurgery or microsurgery. Several leaned toward and encouraged me to have surgery. I chose radiation. When you have a choice, deciding what to do is a real exercise in soul-searching and fact gathering. So, to answer your question, to determine what your choices are, consider consulting with more than one doctor. Include a doctor who specializes in CyberKnife, Gamma Knife, or Proton. Ask every doctor (regardless of specialty) with whom you meet why they recommend a specific treatment over others in your specific case. Evaluate the data as impersonally as possible, and evaluate what choice seems to sit well with your heart and mind to determine what seems the best choice for you.

2. It is my understanding that depending on the type of surgery (which is determined by AN size, I believe) , the odds of hearing preservation can be none or decent. I believe that no matter what treatment, (radiosurgery or microsurgery) the hearing continues to be affected. Surgery because things  can get cut or damaged, radiosurgery because mass's continued pressure on the hearing nerve. Dr. Chang, who is one of my doctors at Stanford, told me he likes to use the following analogy with regards to the AN’s affect on hearing: Imagine an elephant leaning on a thin rope. It might hold for a while, but eventually it will fray and even give. The elephant does not have to get bigger - just the pressure of the elephant leaning causes this to happen. To what degree and how long it takes is a mystery.

3. I can’t speak to this one personally, but I have read many times, and was told by the doctors with whom I consulted on for surgery that vomiting often takes place in the time directly after surgery. I believe this has more to do with the body’s response to the anesthesia, pain medicine and shock to the body (any surgery, big or small is a surprise to the body!). The dizziness and vomiting after that 24 hour period seems to vary with the individual. Again, I did not have surgery, so feedback from some one who has is better!

4. I don't know the figures, but I can say that you might not need a second surgery. From what I’ve read,  the piece they leave behind sometimes does nothing. If it does grow, often a second surgery is not the only option at that time -  you’ll read about many patients here who elected to have radiosurgery.

5. I make sure I get enough sleep and exercise, as well as try to minimize stress. Whether this helps the actual AN or simply helps my overall health I can’t say!  I can tell you that directly after diagnosis my symptoms spiked due to stress and, consequently, loss of sleep. When I settled down, things got better.

6. I have not had a fatigue problem that I can attribute to the AN. However, there are folks here who do experience issues.

7.  I don’t know the answer to this one, but I can say at 43 I forget things sometimes too! Like where I left my keys or phone. But in my case, that’s a normal part of life for a woman my age, and its incidence is not consistent. Sometimes I totally remember all the things, sometimes I don’t. I had more incidence of this sort of thing at and directly following diagnosis - but I had a lot on my mind and was distracted. However, there are folks here who do experience issues.


8. At diagnosis, I was so stressed, upset, and preoccupied with the shock of  it all that for many weeks I was forgetful, inattentive,  and dull. In my case, the AN did not cause that in a physical way - just that it was looming in my consciousness  so much that it was taking up all my bandwidth.   As time passed and I chose my path forward, all of that eased and things are back to normal :).

All in all, know that you will be ok in the end. This part absolutely sucks. When diagnosed, as I wept on the couch and clung to my husband, I remember telling myself, “This time next year it will be better and this time will be behind me. I will be riding, writing, walking my dogs, and enjoying my life.” And I was right. Last year on February 15, I received confirmation of my AN. Now, I am post CK (CyberKnife) and things thus far are fine…I am doing all the things I promised myself I would. Things certainly quickly got better than they were that horrible day and time following diagnosis. And they will for you, too.

Warmly,

Jessica
« Last Edit: February 07, 2019, 06:00:45 pm by Gtmochi »
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

Cheryl R

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Re: ANother newbie
« Reply #3 on: February 07, 2019, 06:41:40 pm »
We all vary in how it goes after surgery.  I was never dizzy, my nausea was only a couple days.     How much the other side has compensated for the balance will play a part in how your balance is post op.    I never thought had a balance issue till walked outside or in large bright lit store.   I just kept trying to keep up walking and did not do any vestibular therapy .     Your AN is too big for mid fossa.   There is a big chance you will lose the hearing.    There are some ways to help this if is hard for you to live with.      So hard to say how it will exactly go for you.      Facial issues are not as common as may seem.   Not everyone needs to do more treatment if some is left on their nerve.                      You may get other answers from others as we are all different in how it went.    I was back to work as  RN in a hospital 2 mos after my surgery.     I go to Univ of Iowa for care and have been very happy with them.
                   I wish you well.     The timer before treatment can be the hardest part.                          Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

jami

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Re: ANother newbie
« Reply #4 on: February 09, 2019, 01:18:13 pm »
Caveat - everyone is different!! Here are my experiences.

1.   Re: surgery or radio surgery - different for everyone, but my surgeon also encouraged removal. It was large enough to affect my facial nerve (that was my primary symptom) and was pressing against my brainstem with additional ‘odd’ symptoms. There is a great seminar recording/transcript on the ANA site that talks about options. Look for "The Patient-Centered Approach to Acoustic Neuroma"

2.   Loss of hearing depends on the type of surgery. Due to size / location, my hearing and balance nerves had to be removed on the affected size. With the nerve gone, hearing is gone.

3.   Balance varies by person. It turns out that my years of ‘clumsiness’ were caused by the tumor growing on my balance nerve. The other side does compensate for most people. I never had dizziness and vomiting, and at 5 months later I can balance on one foot for 15-20 seconds with success. I walked like I was drunk for the first month or two, and still can lose my balance upon occasion or when tired.

The hearing doesn’t have the benefit of being able to be compensated by the other side. Its just gone.  However, there is a white noise that happens on the side where the hearing is removed. The brain is ‘listening’ and with no hearing nerve it seems to make up sound (I am not a doctor - that’s my laypersons description).

Affecting daily tasks, I work for a global company and am back at work full time (have been for a few months) and here is what is different.

-- When I get tired, the white noise gets louder, so I make myself rest. It means I now work 40 hours/week.
--I no longer go in the office at 6 am, instead I walk a few miles in the morning, enjoy time with the dog, and get in about 9 am. And I don’t feel bad about it. (My admin is amazing and supports me too, ensuring I take care of myself)
--My productivity is actually better because the year leading to the diagnosis/surgery, I was so tired all the time that I was just ineffective. I plan better now (as I can forget things still) as well. I think I am a BETTER leader now. (never expected it)
-Eating out, big crowds…I avoid or leave early.  The noise is tiring and its tougher to hear. (secretly, I never really liked it, so its nice so far).
-i manage my 'single sided hearing' pretty well, and sometimes wear things like Bose HearPhones to help. BUT its not been an issue for me yet.

4.   RE; Leaving some of the tumor - Similar to my situation. After 10.5 hours, they removed most of the tumor, but left a bit on the facial nerve and the brain stem. They worked until the brain started to swell, and stopped,  It is not guaranteed to grow back – reading the forum, some folks have it grow back, some see it shrink, others see no change. My 6 month MRI is in March.

5.   Re: aggravating the AN – all I can say is rest, and do lots of walking to keep your brain alert.

6.   Fatigue – YES. The brain is working through a lot, and getting tired. I expect tiredness will always be there, but I pay attention to when I am tired and rest.

7.   Short term memory loss – YES. Heck, for the months before surgery, there are SO many things I forget. For a while, I was taking credit at work for other people work, but we were able to all laugh about it when we saw it (My husband said I was angling for executive management.)

8.   Thinking capability – yes. I am not as sharp (although it seems to be coming back slowly), I use wrong words, etc. But I plan, write lists, and manage my tiredness.

Crazy as it is, I think that I am more together now than I had been in the year or two before the surgery. Its nice to understand what has been happening, I walk 5 miles / day to keep healthy, and I take more time for family / friends. The brain is amazing.

ONE thing which I wish I had been told (and could not find anywhere) -- take more time off before going to work (if possible) than you think you need. I did 6 weeks and wish I had done 2 months.

Best of luck my friend,
Jami

Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment

ANderson1982

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Re: ANother newbie
« Reply #5 on: February 18, 2019, 06:42:00 pm »
Thanks everyone for their invaluable comments.

I am at a dilemma between surgery and radiotherapy. I am at my mid 30s and wish for the minimum impact to my life. Surgery sounds like I will need a period to recover functioning...

My doctor has been strongly recommending the knife due to my AN size and my age. I am almost convinced.

I would like to find out more for those when went for radiotherapy with a similar or larger AN. Any negative impact? Heard about the risk if radiation 15yrs down the road but I am not so concerned. I am happy if I can live normally for the next 15 years.

Heard many recommendation to go for the knife for such AN size, would like to know those who will recommend radiotherapy.

Currently, I have tinnitus, 70% hearing loss/speech discrimination on affected ear. No balance problem. Getting more tired and forgetful ( not sure if it is due to AN).




 


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