Author Topic: Thinking of surgery but worried about the recovery time..Please advise  (Read 6935 times)

shilu

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I am from Aurora,Illinois around 42 yrs of age and a healthy guy. Diagnosed with 5mmx5mmx4mm AN on the right side.  Like radiotherapy but worried long term issues as there is a chance of malignant tumor. Surgery the recovery time could be months and I have a mortgage and  2 small kids one just 15 months and no relatives in this country. Please advise.

ANGuy

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Consider waiting.  With your size AN and age, you don't have to rush right out and get treatment.  you could very well be 52 before you need treatment and the treatment methods could be better by then, your small children will be big children (young adults).
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

PaulW

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Your Tumour is very small, so you have all three options W&W Surgery and radiation.
Around 60% of tumours your size do not grow, so most doctors will advise you to go into W&W until growth is detected.
You could avoid any treatment for many years potentially forever.

While there are risks with radiation there are also risks with surgery, Deaths in surgery do occur, as well as disabling effects from the surgery.
While this is rare for an experience team, it is not so rare for an inexperienced surgeon. Drug resistant Golden staph infections are the cause of many deaths after surgery for AN's. One of the reasons W&W is advocated for a small tumour is because the surgical risks outweigh the benefits. However their are people who suffer from disabling vertigo and may choose surgery or people that just want them out.

The risks of radiation are reasonably well understood. Most malignant transformations have occurred to people with NF2.

You need to weigh up the risks of death and permanant disability now or risk of malignant transformation down the track
Personally at 46 with youngish children I chose radiation as the safe option, with little risk of immediate disabling side effects.

I would seriously consider observing the tumour

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3199160/

 
« Last Edit: April 13, 2015, 03:17:52 pm by PaulW »
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

shilu

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Thanks for your responses. But I also have vertigo issues and and whenever it comes it comes with a kind of anxiety attack that lasts couple of days and top of that causes extreme fatigue. Has anyone faced something like anxiety attack and if so is there any way to control it ?

ANGuy

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I think vertigo can be managed.  At least in my case it can be.  There are meds that mitigate the vertigo.  Coincidentally, they also treat anxiety.  Benodiazepines like valium are first-rate vertigo drugs and are used for anxiety.  You don't take it all the time, just relatively small doses for a day or two to get through the attack.

Yes, vertigo can bring about anxiety.  You'd have to be a pretty cool customer to not be anxious when your world is spinning.  I know I was anxious the first few attacks I had.  Valium is a miracle for anxiety.  Also, anxiety, in terms of it being a disorder, would be for people who get anxious about everyday things.  But, a severe vertigo attack is not an everyday thing and I don't think being anxious about it is somehow not "normal".  This is not a medical opinion, just my own two cents.  I think you will be less anxious in future attacks now that you know why they are happening.

My ENT explained to me that as the AN impedes the vestibular nerve, that nerve losses it's effectiveness.  When this happens gradually, you don't get sick with vertigo, your brain just makes the small adjustments as needed.  The vertigo bouts come from larger, sudden, drop-offs in the performance of that nerve.

The performance of that nerve can be measured with testing.  For instance, mine was about 50% when I had it tested a few months ago.   Yours is not 100%, but how close it is to 0% you don't know.  Eventually it will be 0%, this is virtually certain.  The nerve will degrade over time and if you get surgery, they will cut that nerve.  When the nerve is cut, it will be at 0%.  Once the nerve is at 0%, your brain will compensate for that, and you will no longer get the changes that cause vertigo.  The closer you are to 0%, the less chance you have for getting vertigo.  That 0% is not as bad as it sounds since the other ear, plus your eyes, plus your skeletal-muscular system pick up the slack to give you your balance.  Your balance won't be as good as it once was, but it will be pretty good and you won't get sick anymore.

This is how my ENT explained it to me and my understanding of it all.  I think this is pretty conventional thought, but there may different views on this.  I don't know how radiation treatment plays into all of this.

So, overall, IMO, I think vertigo can be treated and will ultimately subside.  For this reason, I don't think vertigo should be a big factor in your approach to the treatment of the tumor.

Also, you can carry your vertigo meds with you should you have an attack away from the house.  I keep one of those pill keeper key fobs on my key chain.  In it I keep valium and zophran.  Zophran is a miracle cure for nausea and vomiting for me.  When I get an attack, I take a zophran which immediately stops the vomiting.  Then I take a valium which takes an hour or two to stop the dizziness.  The zophran gives me no side effects and the valium leaves me feeling a bit sleepy and very calm.  All anxiety is relieved and I am pretty euphoric at that point.  It aint a perfect solution, but we aren't in the perfect business at this point.  It's as good as it is going to get at that point, and fortunately, that is pretty darn good.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

shilu

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Thank you for your detailed response. It has helped me to relax. I am currently taking Meclizine whenever I have the vertigo symptoms but it makes me drowsy. I will check on other medications that you mentioned.

ANGuy

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I think anything that helps with dizziness and vertigo will make you drowsy.  But, some drugs are more effective and some are less drowsy and this could be different for different people.  Also, dosing can make a difference.  Many pills can be cut in half and this could give you the full benefit with less drowsiness.  When I get an attack, which is rare, I pretty much consider myself out of action.  I liken it to a sick day that other people would take off for the flu.  I lay around, half-stoned, napping and watching TV, for a day or two. 

If I feel a little queezy, but not really dizzy, I'll take one benedryl which is a half dose.  Benedryl is in the same family as meclazine and it works the same way.  It gets rid of the uneasy feeling, makes me a little tired, but it doesn't put me out of action.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

PaulW

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You may want to try Ginger Seasickness tablets. They do work..
You need to take the maximum dose, and the effect is subtle but there are no side effects.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

jeansaunders

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Re: Thinking of surgery but worried about the recovery time..Please advise
« Reply #8 on: October 08, 2015, 01:35:06 pm »
Your tumor is considered very small (10mm= 1 cm, and 1 cm is considered small) and a watch and wait is usually the recommended treatment. these grow extremely slowly. Usually only a couple of mms a year or less. As far as vertigo goes, I had terrible vertigo that lasted 48 hours for a couple of years. I have not had any bouts of it for a few years now even though my AN has increased in size (10mm) I asked my doctor why, and he said my brain has adjusted and I am not burdened with vertigo any longer. As far as anything that will help... my doctor prescribed valium. It only made me go to sleep, but when you are asleep, you don't have vertigo, so I guess that was his reasoning. Nothing will work to stop it in an awake state. It isn't vertigo from water in the ear or anything like that. It's unfortunately a tumor.Try to bear with the vertigo and it will eventually stop. Good luck my friend.
« Last Edit: October 09, 2015, 03:29:23 pm by jeansaunders »

michellef08

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Re: Thinking of surgery but worried about the recovery time..Please advise
« Reply #9 on: October 09, 2015, 07:08:51 am »
If you do decide to go the surgery route, as you are healthy - doctors normally recommend you take 6-8 weeks off before returning to work full time. Personally, I felt comfortable to drive again at 4 weeks, and was back at work full time with no issues at 6 weeks. I was 27 though, so I'm sure that definitely helped my case. For those 6 weeks at home - my mind felt normal and ready to go out and do things, but my body felt very tired and I had to take it easy and take naps a lot. It is brain surgery after all!

Hope this helps answer your question!
« Last Edit: October 09, 2015, 07:12:57 am by michellef08 »
Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.

Doc

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Re: Thinking of surgery but worried about the recovery time..Please advise
« Reply #10 on: October 09, 2015, 08:29:35 am »
If you were diagnosed with an AN, which are not malignant, you’re worrying about nothing. Like others have already pointed out, your tumor is very small and ‘Watch & Wait' is probably your best choice for now.

As for recovery time, we’re all very different and react to treatment in different ways. I had a very large tumor (5cm x 5cm / golf ball sized). I was in the hospital for three weeks after surgery, which included two weeks of in-patient rehab to learn how to safely do things like walk, shower, and swallow (had nerve damage to overcome). I was released on a Monday, went back to work at my desk on Wednesday, and flew out on a business trip the following week--still walking with a cane mind you. I had CyberKnife treatments six months later to ensure what was left of the tumor no was no longer a threat. My Doctor wanted me on the bench for three months. I didn’t wait. Again: We’re all different!
« Last Edit: October 09, 2015, 08:40:52 am by Doc B. »
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

ANnIdaho

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Re: Thinking of surgery but worried about the recovery time..Please advise
« Reply #11 on: October 10, 2015, 10:00:14 am »
For what it is worth, I had middle fossa surgery at usc with Dr Friedman on Sept 22nd. I was up and walking the next day and am back home now and able to walk unassisted and am managing pain with just Tylenol. I told my office I would be off work (I am a computer programmer that works from home) for 4 weeks but I'm feeling well enough to start back part time next week. Everyone is different and recovery times vary.  Just as everyone's tumor regardless of size manifests in different symptoms. I wish you the best of luck in whatever you decide. 
3/3/2015 MRI 9.2mm x 5.4mm AN discovered
Removed Middle Fossa 9/22/2015 by Dr. Friedman Keck Medcial Center. Hearing preserved! Doing great.  If you'd like more details as to surgery/recovery feel free to visit my caringbridge.org website @ http://www.caringbridge.org/visit/sayonaraschwammy