ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: Mei Mei on November 26, 2009, 07:29:00 pm

Title: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 26, 2009, 07:29:00 pm
Hi Everybody,  I'm another Newbie that was diagnosed with a 1.1 cm x 6.1 mm x 8.1 mm AN on Nov. 10.  It's all so new to me and already I've started feeling dizzy and having facial symptoms.  Last Thursday I went to see Dr. Selesnick in NY and he gave me three options:  Surgery, Radiation, Wait and Watch
The next day I went to see Dr. Niparko in Hopkins and he gave me only one option: Surgery and said that there is a possibility of stroke from the pressure on the brain.  Of course I don't want a stroke so I agreed to surgery on Jan 12th and have an appt to meet Dr. Tamargo on Dec. 21st.  I've already got a 35dB loss in the rt ear from this and don't want to lose any more but the risk from surgery is that I might lose is all.  It is saddening me.   My health is good and this is something I have to do to get this thing out of my head.  I'm not looking forward to the recovery time.   I have a 95 year old father that I have to put in respite care for a few weeks and he'll have to understand me for that and then there's the dog that's very attached to me and my father.   Life happens when you're making plans.

Any advice on the differences in opinions...it's a puzzle to me.

Mei Mei  in Chevy Chase, Maryland
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on November 26, 2009, 11:01:10 pm
Mei Mei -

I'm puzzled by Dr. Niparko telliing you that surgery is your only option.  Did he give you his reasoning?  Does he only treat ANs with surgery?  Sometimes docs who only do one kind of treatment (radiation vs surgery) will tell you that the other treatment option is not a good choice simply because they don't perform the procedure.

Although I don't personally know either of these doctors, Dr. Selesnick has a very good reputation and I don't think he'd tell you that radiation was an option for you if it wasn't. 

Have you contacted the ANA for their informational literature? Perhaps it would help you make a more informed decision.  I'm not questioning your choice here, but I recommend you look into both radiation and surgery further.

Yes, strokes can be a side effect of AN surgery, but generally the statistics are not high.  A lot depends on the location of your AN, but I'm sure Dr. Selesnick was aware of that when he gave you your options.

Jan
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 27, 2009, 07:57:17 am
Dear Jan,
Thank you for your quick reply and concern.  I really liked both doctors.  I wanted to clarify something.  Dr. Niparko I think said that there was a possibility of stroke if I didn't do the surgery which is why I want to go ahead and do this and get the tumor out.  Dr. Niparko also wanted to proceed with the surgery because I am already symptomatic ... am getting dizzy at times, tinnitus all the time and have a 35 dB hearing loss and feel tingling on the face, scalp, and lip every now and then.  These were concerns to him.   Dr. Selesnick left the choices all up to me:  Surgery, radiation, watch and wait and told me to give his secretary a call if I chose surgery.


Also, Hopkins is 40 minutes from my home which makes life much easier for appts.   It was a 4 hour ride there to NY and then Selesnick made me wait 2 hours.   I almost missed the bus back to Washington.    Dr. Niparko took me on time to the minute.   Everything went so smoothly there. 

I'll go to my ENT who diagnosed me for a consult and talk things over with him as a courtesy and a chance to sit down with him and talk these critical decisions over.

Did I explain myself well?
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: pjb on November 27, 2009, 08:29:54 am
Hi, I had surgery back in July with Dr. Selesnick and Dr. Stieg my AN was 1 cm. and my experience with Dr. Selesnick was wonderful and something must have happened for the 2 hour wait because everytime I went to him I was taken right away at least within 10 minutes.  My surgery was a success as far as the tumor that he completely removed I did lose hearing and there were other post operative problems but nothing to do with the actual surgery. Dr. Selesnick was with me from the time of surgery and every day thereafter was very compassionate, confident and truly a concerned doctor. I would not hesitate for a moment in recommending him to anyone.
Title: Re: Surgery Date at Hopkins, January 12
Post by: pjb on November 27, 2009, 08:31:57 am
I am sorry I forgot also to mention my biggest concern was the hospital and Weill Cornell was rated in the top 10 for neurosurgery and that was a major factor in my decision.
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 27, 2009, 08:34:28 am
Thank you for your reply.   I am lucky to have met two such wonderful doctors.  How are you coping with losing your hearing?  Dr. Niparko at Hopkins does the Coclear Implant for that.
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: pjb on November 27, 2009, 08:49:17 am
Not coping well it is all a new experience now because I had no hearing loss prior to the surgery but I new that this was possible and just thankful that the tumor was totally removed sometimes a piece is left behind and then you have to worry about regrowth.  Also I am just so glad that I had no facial parlaysis which many do experience after surgery.  What has started now is tinnitis which is driving me crazy but have to do research on this and possibly a hearing aid right now I am hoping that the good ear will compensate for the AN ear. The only good thing about this tumor is that they are benign and my regular physician and my neurologist both said they only would opt for surgery so I took their advice.
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 27, 2009, 09:00:32 am
Dear PJB,
I'm sorry you are having hearing loss and tinnitus.  Welcome to my world.  It's isolating and drives you nuts.  I'm a teacher and it's hard to concerntrate in front of a high school class and keep them focused with all this going on in your head.  Did this start after the surgery?   I don't know why you are getting tinnitus now after your surgery.

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: pjb on November 27, 2009, 09:31:28 am
It must be so difficult with this being a teacher there are quite a few teachers on the post surgery site you have to contact them as to what to expect safter surgery sometimes it helps but then again too much information can be overwhelming also, you just have to remember that everyone heals differently.  My neurosurgeon Dr. Stieg says that my tinnitus is possibly due to scar tissue which started about 2 months after surgery ?  I read others have it also after their surgery so at least on this site you do not feel so alone.
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 27, 2009, 09:38:01 am
I know, we are all in this together.  That is what is so special about this site.   I didn't know that you could get tinnitus from the scar tissue after surgery.  Yeegadz.  What next to think about.  This surgery really isn't that perfect, is it?   It'll be really hard to concentrate on teaching with the noise.  I'm feeling frustrated as it is with the hearing loss and the tinnitus and lightheadedness.
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Nickittynic on November 27, 2009, 11:17:57 am
Hello and welcome from a fellow Marylander!
I had surgery w Dr Tamargo at Hopkins roughly two months ago. Feel free to PM me if you have any questions or check out my blog - http://buginthebrain.blogspot.com (http://buginthebrain.blogspot.com).
Title: Re: Surgery Date at Hopkins, January 12
Post by: Jim Scott on November 27, 2009, 04:42:46 pm
Hello Mei Mei ~

I just wanted to welcome you to the ANA forums and tell you that I've added your surgery date to our 'AN Treatment Calendar'  http://my.calendars.net/an_treatments/d12/01/2009?authenticate=&display=M&style=B (http://my.calendars.net/an_treatments/d12/01/2009?authenticate=&display=M&style=B)  It's a bare-bones entry because I wanted to give you the opportunity to add the details, if you wish, or I can do that for you, if that is easier. 

I think your decision to go ahead with surgery is certainly yours to make.  I hope it goes well and although it isn't 'perfect', I'm sure you'll be better off in the long run.  These tumors, although benign, do grow and are in a very vulnerable area.  Their growth can cause a lot of problems so, if surgery is your choice of treatment, the sooner it's out, the better.  Tinnitus is frustrating but can be handled, as many do.  I'm one of them.  Of course, as individuals, we all have varying symptoms and post-op issues but generally, they can be surmounted.  Patience and determination are assets when dealing with an acoustic neuroma, but you probably know that already. 

I trust you'll receive much good advice from our members - and I hope you'll continue to find these forums useful.

Jim
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 27, 2009, 04:59:09 pm
Dear Jim,
Thanks for putting me on the calendar and making me official.  Since I don't know how to maneuver  the system I'll ask you to add the details for me.  I'm relieved that a decision is made but not looking forward to the recovery period and the possible side effects that I might have to endure:  Hearing loss, facial paralysis, more tinnitus than I have now.  The questions and expectations about when I'll be back at work are also an issue.  I'm a high school teacher and they'll need coverage.  We'll just have to take one day at a time and get a lot of back up support.

Thank you and all of the members for keeping in touch!!!
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on November 27, 2009, 07:28:36 pm
Mei Mei -

thanks for the clarification.  As I said earlier, I'm don't know either of these doctors.  Reading your first post gave me the impression that Dr. Niparko was pressuring you into surgery when radiation might be an option for you.  I apologize for misinterpreting that.  From your subsequent posts it sounds like that isn't the case at all and that you're comfortable with your choice.  I'm very happy to hear that  :)

As far as hearing devices for SSD (single-sided deafness), if you decided to get one you would be getting a BAHA (bone-anchored hearing aid).  Cochlear implants are for individuals who are bilaterally (double-sided deaf).  The BAHA is an incredible device - I've had one for about 16 months now - and will help you immensely.  I have a Divino, but will be upgrading to the BP100 in January.

Good luck with your surgery - and if you have any questions about the BAHA, please don't hesitate to ask.  I'll tell you anything you want to know.

Best,

Jan
Title: Re: Surgery Date at Hopkins, January 12
Post by: pjb on November 27, 2009, 07:48:50 pm
Just remember what I said earlier everyone heals differently there are alot of people who recover quickly with little or no complications and I am sure you will be one of them.  The only good thing at least you have a little time off for the Holidays and also think about requesting enough time off from teaching to give your body time to heal and state if you feel better you will return sooner.
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 27, 2009, 08:14:39 pm
Yes, I've already requested 2 months and am wondering if that is enough time.  I hope that it is and will put my father in a nursing home for a month because I don't think I can care for him for the first month. Hw won't like it very much, but I can't handle him by myself.

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Kate B on November 27, 2009, 08:22:29 pm
Mei Mei,

What subject do you teach? I am a curriculum director for a large suburban school district west of Chicago.

Under most circumstances, two months should be enough time. I was able to return to work full-time after five weeks. That being said I was tired that first week back.  Is there a way to return that first week to a half-day schedule? 

You may have said this already, but which type of surgery are you having done?

Kate
Title: Re: Surgery Date at Hopkins, January 12
Post by: pjb on November 27, 2009, 08:33:45 pm
With the FMLA you are entitled to 3 months without any problems with your place of employment with the Board of Education I am not sure if it is different. Besides having surgery you have to worry about your dad which of course is a major concern but you have to make sure that you heal first so you can care for him.  How old is he and how much care do you have to do for him?  Maybe when you are both home maybe you can see if you can get him homecare so that you have less to do and worry about you do not need any extra stress.
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 28, 2009, 08:08:02 am
Thanks Jan and PJB,
There's so much to learn.  I didn't know the Coclear implant was for bilateral patients.  I'll have to make a note of these devices for when it comes time for me to get mine.  I sure hope I come out of this with my hearing in tact but am ready for the worst.  I have to get this tumor out of my head before it gets too big.
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on November 28, 2009, 09:16:39 am
Mei Mei -

all patients recover at different rates post op, but 2 months should be more than enough time off of work.  Most docs say it generally takes about 6 weeks.

I'm not a teacher (I'm an accountant) but I found it very helpful to work half-days when I first returned to work.  If that's a possibility for you, you might want to consider it.  It helps you get acclimated to the work environment, plus it comes in handy if you want to nap in the afternoon or sleep late in the morning.  The fatigue post op has to be experienced firsthand before you can really appreciate it. 

Jan
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 28, 2009, 10:02:30 am
Hi and thank you all for your thoughtful replies,

I teach ESOL in Montgomery County Public Schools which is a large Suburban public school system just outside of Washington, DC.  I have two new curricula this year for my 2nd year and 4th year classes so there's an extra amount of work this year.   My father is 95 years old and had a stroke in 2005 so he is in a wheelchair for the right hemiparesis.  We have home health care coming in from 6:45 to 3:00 p.m.  and that costs about $4,000 per month.   I do the evening care to save the money and have some privacy in my home.   I called the County Respite to see about putting him in a nursing home for the first month and while I'm in the hospital.   He thinks he's going to the hospital with me to wait outside in the waiitng room.   My daughter doesn't want to bring him.  There's just too much to think about, but he will want to know what is going on and we won't be able to contact him in the  nursing home because he doesn't use a telephone.  He has a 60 dB hearing loss. 

My tumor is still considered small so I am hoping for the best as far as outcome and recovery time.   I'm just not looking forward to recovery at all.  I'm home alone and my bedroom is on the second floor.  I will buy lots of frozen dinners and use instant oatmeal and instant coffee for breakfast.   I've had my flu shot and have an appt for the H1N1 on Dec 8. 

I  think I've answered your' questions and thanks for your interest....

Sincerely,
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: wendysig on November 28, 2009, 11:04:28 am
Hi Mei Mei,

Welcome to our group -- I see the welcome wagon has already been out in force, as usual.  I really don't have much to add except that  ideally, it would be best if someone could stay with you or you could stay with someone (perhaps your daughter?) for the first couple of weeks after surgery.  You might have a problem with the stairs or just dizziness in general -- this too is very individual.  How much of a problem does your doc think you will have with balance after surgery?  As everyone has said, feel free to ask questions -- we are here to help.

Wendy
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 28, 2009, 11:42:28 am
I'm overwhelmed and touched with the welcome wagon.  My daughter down in Chalottesvilles, Va about 3 hours south of here is having her second baby around Dec. 17th and her other baby is 15 months old.  I'm not even sure if she is coming to the surgery.  She hasn't committed to anything.   I'm kind of disappointed but understand.   My other daughter from NY who is single is coming for the surgery.  She gets 3 day family leave for this and will take more .   She's a judge so has to get back up for hearings.  My other daughter will be on maternity leave.  I don't know how to leave to get to her house since I won't be able to drive and I don't want to leave my father behind.  Then there's the dog...I can't ask the neighbor to keep him forever.    I am the main caretaker of this household and now everything is going haywire.    I  have to make sure all the bills are paid before I leave for the hospital and be ready for tax time.

As for balance issues, I haven't met the neurosurgeon yet, and will meet him on Dec 21.  I'll have a list of questions for him.   My father has the Link to Life so I think I'll be wearing that and leave the front door unlocked just in case I press the button.

I forgot to answer the question which surgery I was going to Have.  I don't know the name, but the doctor said he was intend to enter from the posterior position if that clarifies things.  I'll have to read up on what Middle Fossa is.   I'm still pretty new at all the terminology.  What is all ironic is that my background is in Speech and Hearing!

Talk to you all later!

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on November 28, 2009, 02:30:23 pm
Mei Mei -

Wendy is right, you should try to have someone with you when you're home from the hospital.  Sounds like your daughters have their hands full, but perhaps the home health nurse could help you, as well as your father, during your recovery.  You might want to check with your insurance company. 

I'm sure if you explain the circumstances to your neighbor, he/she will be happy to take the dog for a few weeks.  Just mention brain surgery. 

It's often hard to ask for help, especially when you're the main caretaker (I know this from personal experience) but most of the time you'll find if you just ask, people are more than willing to help.  You may even have some colleagues at work who'd be willing to assist you - or take the dog for a while.

Just some thoughts,

Jan
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 28, 2009, 04:29:41 pm
Dear Jan,
Yes, it is hard to ask for help and it will be hard for the dog to be away from home.  He is so attached to us.  This whole recovery is going to be so stressful on all of us.   I need it to go as smoothly as possible.  Maybe it would be better to have my father in the house and the aide here till 8 for a month and have her give him dinner and put him to bed.  At least there would be someone in the house.  I'll figure this out this week when the Respite papers come in.  Being under one one roof has its advantages.  I just don't want to have to lift my father while I am recuperating.  He is  6 ft. tall and a rt. hemi paresis so he weighs heavy on you when you try to transfer him from the bed to the wheel chair and vice versa.  That's why I needed to know how long the recovery time would be because I have my father depending on me.   

I'll have to ask the doctor all these questions on the neurosurgical visiti at the end of December. 

I'll also ask that they not use residents and ask which kind of surgery they are going to do.


can you think of any other questions?

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: sgerrard on November 28, 2009, 06:01:17 pm
Hi Mei Mei,

Just saying hi. It looks like you are already into it all pretty deeply.  ;)

Steve
Title: Re: Surgery Date at Hopkins, January 12
Post by: pjb on November 28, 2009, 06:51:22 pm
You have so much to prepare for everyone else before your surgery it must be so overwhelming for you, at least in one way it takes your mind off of the actual surgery and to focus on your recovery instead and I am sure it will go well.  You cannot imagine how caring co-workers, neighbors etc., will come to your assistance after the surgery and don't be afraid to ask for their help. Definitely call your insurance company and also your dad's they might have homecare coverage even for a few weeks it would be a great help and savings to you and one less thing to worry about.
Title: Re: Surgery Date at Hopkins, January 12
Post by: moe on November 28, 2009, 11:58:13 pm
Mei Mei,
Just a belated HI. Sounds like you are on the right track getting all your duckies in a row.
The issue with your father is very tricky. You do NOT want to have to worry about lifting or assisting him when you get home.
Unless you have 24 hour care in the home, the nursing home sounds the safest for at least the first couple of weeks.
It is unbelievable the cost of care. It just blows my mind :o
The size of your tumor is small, so think pos, you should recover fine.
Balance/dizziness are very common symptoms post op. Plus the fatigue of course.
Hopefully your daughter who is the judge can stay with you when you get back for a week....?
We lived in Bethesda, MD for 3 years, and then later on in beautiful WALDORF MD for 8 years (military). I have heard it has grown and grown down in that area.
Things will work out, the answers will come. You will feel so much better.
Does your father understand the issue with his age? Is he confused? Of course he doesn't want to be "abandoned" but just keep reminding him....BRAIN SURGERY....
Hang in there,
Maureen
Title: Re: Surgery Date at Hopkins, January 12
Post by: suboo73 on November 29, 2009, 07:48:13 am
Mei Mei,

Just wanted to add a belated 'welcome' and hope you are finding all the answers you need.
Certainly sounds like you have A LOT on your plate - so please don't be afraid to ask for help.
I agree that having additional help in the house for the first few weeks sounds like a good plan.
If you get better faster than anticipated, then all the better!

I am not done researching my treatment options but met with Dr. Tamargo. 
He was very nice and explained things clearly, also indicating that I should meet with a radiosurgeon (in my case) as he thought that was also a treatment option for me.
I appreciated his honesty in explaining all my possible treatment options.

My thoughts and prayers are with you and your family during this time.
Sincerely,
Sue

Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 29, 2009, 09:50:39 am
Dear Friends,   
Thanks for all the replies and offer to make me a hat.  I was just growing my hair long again, too!  I have my application in for Montgomery County Respite Care.  They are pretty flexible.  You can use them either at home and pay a friend or take the person to a nursing home.  I might just pay the aides to be here taking care of him and then she can tend to me at the same time if I need something.   Tomorrow's Monday and I'll make my calls then.  I guess the dizziness post op is due to the swelling from the surgery and the poor brain needs time to settle down.  Boy will I have lots of questions for Dr. Tamargo on my visit on Dec. 21st.

Talk with you all later.
Mei Mei :)
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on November 29, 2009, 04:50:38 pm
 
Thanks for all the replies and offer to make me a hat. 

Wow, you've already been offered a hat by Steve  :o  Used to take years to get on that list - he must be working overtime!

Like Moe said, you seem to be getting all your ducks in a row.  Good for you!

Jan

Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 29, 2009, 05:03:18 pm
I am a lucky person.   Don't you think?   He doesn't know where to send it though!
 I'll have to tell him ...I'm interested, can you tell me about your surgery?  What does it say on your signature file?  I have to get my ducks in a row, there are too many ducks depending on me;   it gets confusing around here directing traffic with all the quacking!!!
 Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: kshcon on December 06, 2009, 08:24:27 pm
Just had surgery with Drs. Niparko and Tamargo 11/19.  I am in the health care field and did a lot of research and met with several surgeons before deciding to go to Hopkins.  I felt I was putting myself in the best hands possible.  2+ weeks after surgery still feel the same.  They were great, and I completely trusted them.  It is all such an individualized decision, and a difficult one.  Research, talk to a lot of people, and do what you think it is right for you.
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on December 06, 2009, 08:29:49 pm
Thank you for this.   How are you doing?   Is your hearing in tact and how is your facial nerve?   What was the size of your tumor?   Mine is 1 cm x 1.6 mm

I hope you are having a good recovery?  What was the date of your surgery?

Take care,
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on December 07, 2009, 06:23:21 pm
Dear KSchon,
I am sorry, I didn't read  your note carefully and was so excited to get your response.  You had your surgery just the day before I met Dr. Niparko.  My youngest daughter got her PhD at Johns Hopkins and is 6th author on a paper with him where he is 10th author.  I just found this out after I met him and haven't had a chance to tell him.  I will meet Dr. Tamargo on Dec 21st and will tell him about all my questions such as my previous surgeries that Dr. Niparko had concerns about.  In 1988 I had a cervial Laminectomy at Georgetown where the residents operated instead of the doctor that I consuted with.  He took the wrong disc and cut the nerve that moved my vocal cord...the Recurrent Laryngeal Nerve  (RLN)  and so a year later I had to have an anastamosis with the nerve that moves your tongue the ansahypoglossi otherwise my breathing was being compomised.   I couln't should or run or say certain words.  It has reinnervated somewhat.  Dr. Niparko is concerned about this nerve in the surgery and the care and preservation of the prior surgery in the current surgery.   It will be complicated.

I am hoping that you are recoveriing well.  It was good of you to write to me just two weeks post op and I thank you for that.   Take good care of yourself!!!!

Sincerely,

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Tricia (horsekayak) on December 08, 2009, 05:01:52 pm
You have a lot to consider, I admire your concern for the others in your life, and hope that you will be gentle with yourself as you take care of your recovery.  I'll be sending good thoughts to you from down here in Georgia!!!
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on December 08, 2009, 06:16:09 pm
Thank you for your good thoughts.  We all need them...don't we? ;)

Sincerely,

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12 RetroSigmoid
Post by: Mei Mei on January 10, 2010, 07:05:07 am
 :)Well my friends, I'm off to Baltimore tomorrow to stay in a hotel so I can get up early enough to get to the hospital on time.  My daughter is going to stay there to be with me and it will be good to have someone in the waiting room out there to meet with the doctors.   I finally got a good night's sleep last night after several days of pre operative worry.

One thing ... last week the mastoid process ... the area behind the earlobe started to be tender and swollen.  I called the ENT on my case Dr. Niparko's office and a resident called me back.  I was concerned that this would get in the way of the surgery.   She said not to worry and that the tumor was probably pressing on the masoid process.  I wasn't before, so I guess the tumor is growing, not a good thing.  It good to get this tigger out of my head.

Will be in touch if I can Post Op from the Hospital, but If I can't,   I will write when I get home!!!!!

Sincerely,
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: sues1953 on January 10, 2010, 09:26:54 am
Good Luck tomorrow Wow!  I just found this site and I am still trying to figure out how make contact.  I am newly diagnosed.  God Bless you!
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on January 10, 2010, 09:36:39 am
Good luck to you, too with your new diagnosis.   I am sorry about your diagnosis, but you've found one of the best resources you'll ever need for your support and information.   Write to us whenever you need us.
Sincerely,
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on January 10, 2010, 11:34:37 am
Mei Mei -

best of luck to you.  I'm looking forward to hearing from you as a postie!

I'm confident things will go well, but I'll still keep you in my prayers  :)

Jan
Title: Re: Surgery Date at Hopkins, January 12
Post by: Vivian B. on January 10, 2010, 01:20:20 pm
Hi Mei Mei,

Just wanted you my prayers and best of luck.

Vivian
Title: Re: Surgery Date at Hopkins, January 12
Post by: suboo73 on January 10, 2010, 06:40:07 pm
Mei Mei,

All my thoughts and prayers as you go forward with your surgery.

Sincerely,

Sue
Title: Re: Surgery Date at Hopkins, January 12
Post by: pjb on January 10, 2010, 06:58:58 pm
My thoughts and prayers will be with you tomorrow, hope to hear how you are doing really soon...

Regards,

Pat
Title: Re: Surgery Date at Hopkins, January 12
Post by: Jackie on January 11, 2010, 01:32:35 am
Mei Mei,

Sending you good wishes for an outstanding recovery, you're in my prayers along with  your daughter too.
Blessings to you,
Jackie
Title: Re: Surgery Date at Hopkins, January 12
Post by: nteeman on January 11, 2010, 07:49:13 am
Mei Mei,

Best of luck tomorrow.  It happens to be my birthday but I will make a point of sending some good thoughts your way.

Cheers,
Neal
Title: Re: Surgery Date at Hopkins, January 12
Post by: opp2 on January 11, 2010, 08:16:09 am
Good wishes Mei Mei.
Title: Re: Surgery Date at Hopkins, January 12
Post by: Lynn Mc on January 11, 2010, 08:32:00 am
Mei Mei,

Thoughts and prayers to a great recovery.  Thinking of you.

Lynn
Title: Re: Surgery Date at Hopkins, January 12
Post by: NancyMc on January 11, 2010, 08:33:36 am
Good luck, Mei Mei.
Happy Birthday, Neal.
Title: Re: Surgery Date at Hopkins, January 12
Post by: moe on January 11, 2010, 08:59:20 am
Mei Mei,
Surgery tomorrow. Prayers going your way for a successful surgery.
See you in "postie" land :)
Maureen
Title: Re: Surgery Date at Hopkins, January 12
Post by: jaylogs on January 12, 2010, 03:18:55 pm
Good luck Mei Mei, thoughts and prayers are with you!
Jay
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on January 12, 2010, 11:02:31 pm
Mei Mei -

hope things went well today.

Happy Birthday, Neal.

Jan
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on January 17, 2010, 05:19:28 pm
Dear Friends,
I'm home from the hospital and am a postie now.   My AN was removed on Tuesday in a 9 hour surgery.   I got out of the ICU on Wed at noon and had an MRI at 2 pm.  So far no facial symptoms but they said to expect some in the next few weeks.   I lost most of my hearing in my AN right ear,  I think all...I can't hear anything on the phone at all right now.   The resident came in from the ENT team and said they were recommending the BAHA 3 to 8 mos down the road.  I'll have to start looking into that more heavily as I recuperate.   Right now I get in home PT for the next two to three weeks and have 24 hour care in home.  The docs and the nursing care at Hopkins were all great and I couldn't have asked for better support.  Well, I'm going to sit down to dinner with my dad and daughter.  Thanks for being there with me over the past months!

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: pjb on January 17, 2010, 06:04:42 pm
So glad that you are home and sitting done eating that is a tremendous accomplishment in such a short time sounds like you are doing great and hope that it continues.

Best Wishes,

Pat
Title: Re: Surgery Date at Hopkins, January 12
Post by: moe on January 17, 2010, 09:06:59 pm
Hi Mei Mei,
Welcome to postie land! If you experience facial symptoms, know that they will most likely be temporary. Lots of swelling going on in there. Are you on the lovely steroid medication?
Please follow the rules for post op brain surgery. Resting, walking, sleeping, drinking lots of fluids, repeat cycle.
And no bending over-this may cause headaches. Let us know how things continue to go. I'm so glad you have in home PT. That is great!
Are you having bad balance problems?
Maureen
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on January 17, 2010, 09:31:53 pm
Mei Mei.  You're back!  Good to see you  ;D

Glad to hear that things went well.

I'm not a resident, but I recommend the BAHA too.

When you're ready to think seriously about it, please don't hesitate to ask me anything.

Get lots of rest and don't overdo it.

Best,

Jan
Title: Re: Surgery Date at Hopkins, January 12
Post by: sgerrard on January 18, 2010, 01:28:38 am
Sounds like it went well, Mei Mei. Congratulations, you are a postie now. Rest and recover, you will soon be almost as good as new. :)

Steve
Title: Re: Surgery Date at Hopkins, January 12
Post by: Nickittynic on January 18, 2010, 07:31:32 am
Glad you're home and doing well! You're already hugely ahead of where I was at your time in recovery! Keep resting and don't do too much!
Title: Re: Surgery Date at Hopkins, January 12
Post by: lawmama on January 18, 2010, 07:35:15 am
Mei Mei,

Congratulations on being a postie, and I am so glad to hear that you are doing so well!  Keep your spirits up and keep resting. 

Lyn
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on January 18, 2010, 10:52:59 am
Thanks, everybody for your replies.   They are really heartwarming.  I had breakfast this morning and expect Home PT to come tomorrow.  The stitches come out on Wed at 9 and I shampoo on Fri.  Yay!    My daughter is going home today at 2 pm and I will miss her being here with me.  Everything went so smoothly with the Home Health Aide;  she took such good care of my Dad and the dog, Punky.  My mind is at peace at last. 

Talk to you all later!
Sincerely,
Mei Mei


Title: Re: Surgery Date at Hopkins, January 12
Post by: Jim Scott on January 18, 2010, 03:03:34 pm
Mei Mei ~

I'm a tad late here but want to add my congratulations on your successful surgery and what will, no doubt, be a good recovery.  Enjoy the rest!  :)

Jim
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on January 18, 2010, 03:26:28 pm
Thank you, Jim!   I am resting comfortably!
Sincerely
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Tod on January 18, 2010, 08:07:09 pm
This is really great news Mei Mei. I hope my own surgery goes as well.

Tod
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on January 18, 2010, 10:06:26 pm
Ah, the first post op shampoo  ;D  I still remember it VERY well.

Now there's a milestone worth celebrating!  Enjoy every minute of it, Mei Mei. 

Jan
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on January 24, 2010, 11:58:30 am
I did the shampoo on Friday and that was great.   I still have a horrible pinched nerve on the surgery side of my neck that won't go away no matter how much balm or heat I put on it and it sends some pain up to my eye at times.  I keep resting but this neck and shoulder thing probably left over from the position I was in during the long 9 hour surgery will have to resolve itself somehow.  Maybe I should go to accupuncture but don't know when is too soon to interfere with the brain surgery that I just had.
I'll ask my Primary Care on Friday when I see him

Sincerely,
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on January 27, 2010, 07:32:11 am
Mei Mei -

the neck problem is  from surgery.  It will improve in time - like most issues post op - but asking your primary care physician what you might do to help things along is a great idea.

Jan
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on January 27, 2010, 08:15:52 am
Thanks, so much.  I'm putting heat on it and on my shoulder.  I just have to be patient.  I'm also feeling pressure in my head when I get up from sitting to standing but only for a few seconds.   The blood pressure is perfect though.  The physical therapist that comes to the house says this is called Intracranial Pressure from the surgery.   I'm seeing the Primary Care on Friday afternoon and will discuss it with him.   

Otherwise everything is progressing and I'm walking OK....Thanks for writing.

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: moe on January 27, 2010, 09:58:11 am
Mei Mei,
Great- just keep taking those baby steps and listening to your body cues. Give yourself at least 4-6 weeks of gentle activity and spoil yourself every day in some way.
(or have some one spoil YOU). You'll make it :)
Maureen
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on January 27, 2010, 10:16:47 am
The Physical Therapist just left and said that the swelling feeling I have when I go from a sitting to a standing  (not all the time) is probably the brain adjusting to the titanium closure at the back of my head because that is where I feel the pressure. 

Just a Note for those of you reading this and might be experiencing the same thing.

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on February 03, 2010, 11:06:07 am
I had another question for everybody.   My scalp is all numb on the entire right side...the surgical side.   I wanted to know how long it will be numb and feel different than the non-surgical side.  It feels really strange and lopsided.
Sincerely,
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: JerseyGirl2 on February 03, 2010, 11:54:19 am
I had another question for everybody.   My scalp is all numb on the entire right side...the surgical side.   I wanted to know how long it will be numb and feel different than the non-surgical side. 

I can only relate my own experience, but my numbness lasted quite a while -- about a year and a half before it was totally back to normal, though I'll hasten to add that the improvement was steady (though slow). Over the course of time the numb area decreased in size, and one day I just realized that there was no numb area left.  I should also mention that I had my BAHA abutment implanted at the same time as my translab surgery ... so I don't know how that combination affected the numbness situation.

Hopefully you'll be able to get used to it, and remember that it will get better!

Catherine (JerseyGirl 2)
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on February 03, 2010, 12:34:19 pm
Thanks, I've been wondering about this and it's nice to have a guideline for the numbness and getting back to normal.  I think I'll have the BAHA in a few months depending on what they say at my Post Surgical meeting on the 22nd.

By the Way, my father has a house that he is renting out in Holmdel (Monmouth County) He is now 95 and lives with me.  Our house was in Lincroft.  We moved down here in 1981.

Thanks for your reply,

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Jim Scott on February 03, 2010, 02:45:18 pm
I had another question for everybody.   My scalp is all numb on the entire right side...the surgical side.   I wanted to know how long it will be numb and feel different than the non-surgical side.  It feels really strange and lopsided.

Mei Mei ~

The 'numb' skull is typical.  Mine lasted for approximately 9 months.  I couldn't sleep on that side.  Now, I'm fine, although the 'AN' side of my skull is slightly less sensitive than the other side but this is not a problem as the difference is minimal. 

Jim
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on February 03, 2010, 03:19:16 pm
Thanks, Jim.   It's good to look forward to.   I like having a time frame to keep in mind.   My head feels so delicate right now.

Sincerely,
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on May 09, 2010, 09:07:01 am
Just found out on a google search today that retrosigmoid approach is high risk for post operative headaches.   It is highly documented here and thought all of you should see this.   I am now suffering from this on a daily basis.

Here is my search on google:

http://www.google.com/search?source=ig&hl=en&rlz=&q=retrosigmoid+approach+postoperative+headaches&aq=0p&aqi=g-p1g7g-s1g1&aql=&oq=retrosi&gs_rfai=

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on May 09, 2010, 09:25:38 am
Mei Mei -

thanks for the link and sorry about your headaches.

However, with all things AN, not everything can be applied to everyone.

I had retrosigmoid surgery almost 3 years ago and have had no post op headaches whatsoever.  And I don't think I'm alone in this.

I hope you find a solution to your headaches quickly.

Best,

Jan
 
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on May 09, 2010, 09:31:58 am
Dear Jan,
I am very glad for you.   I look at all these links on my google search and see the amount of research on retrosigmoid surgeries and post op headaches.   It looks like you are a very lucky lady!

Sincerely,
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: leapyrtwins on May 09, 2010, 09:33:29 am
Not so lucky as you'd think.

There are lots of us on the Forum who had this surgical approach and don't suffer from headaches.

I am not unique in this.
Title: Re: Surgery Date at Hopkins, January 12
Post by: Jim Scott on May 09, 2010, 02:27:00 pm
Mei Mei ~

As a corollary to Jan's last post (#79), I underwent a 9-hour Retrosigmoid Approach AN debulking surgery almost 4 years ago and never experienced any headaches.   I don't believe those of us who had 'retro' surgery sans headaches are necessarily 'lucky'.  I very pointedly asked my neurosurgeon about post-op headaches and he assured me: "my AN patients don't get post-op headaches'.   He was correct, in my case.  Although post-op headaches remain a risk, modern surgical techniques have greatly reduced that risk.   

Jim
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on October 16, 2010, 01:28:15 pm
I wish that I had your surgeon because I have to this day two to three terrible one sided headaches.

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Jim Scott on October 16, 2010, 01:45:26 pm
Mei Mei ~

I didn't mean to diminish your suffering in any way, I simply wanted to make the point as a follow-up to Jan's comment that not all AN patients that undergo the Retrosigmoid Approach surgery end up with post-op headaches.  Yes, we may be a statistical minority - but a noteworthy one.  I believe that the surgeon's skill and precautions are a major factor in avoiding post-op headaches for AN surgical patients that undergo the 'retro' procedure.  My neurosurgeon had over 30 years of AN removal experience and he assured me that he had practically eliminated the risk of post-op headaches in his 'retro' surgery patients.  He was casually confident so I didn't give it much thought after that.  His confidence proved to be well-founded.  I did not experience post-op headaches, for which I'm very grateful.  Because Jan and I had different surgeons and live far apart, I believe our lack of post-op headaches can be mostly attributed to our doctors skill and not sheer luck.

However, I realize that does nothing for you as you struggle with headaches.  I just wanted to let you know that I sympathize with your distress over your headaches and that I don't believe undergoing the AN 'retro' surgery and experiencing intractable post-op headaches is axiomatic.  Of course, I hope and pray that you can find relief from your headaches, soon.

Jim
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on October 16, 2010, 02:11:22 pm
Every time I go to a local meeting and hear of someone that went to HEI in Los Angeles, I regret not listening to Dr. Friedman that offered me the choice of the Middle Fossa at HEI.   I chose to stay home and have the convenience of being in Baltimore because of my elder father.   In 1989 I had vocal cord surgery in Irvine California and I didn't have my father living with me at the time.   I regret now finding the help for the ten days to get out to HEI and do the Middle Fossa out there.   I told Scott to go there and he seems to be doing fine.   I will continue to tell people to stay away from Hopkins and the Retrosigmoid approach.

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on October 17, 2010, 06:54:49 am
Dear Donna Lynn,
Thanks for your kind words.  I was so touched and really appreciate them and your prayer.   I've tried almost everything except for Botox which I can't find and my neurologist says won't work for me.  I've had three nerve blocks, Verapamil, Neurontin, Lyrica and now Lithium which I'm not happy about because of the side effects.  The other drugs also had side effects as they kept me up all night and now in spite of cutting the dose in half, my hands tremble and I'm very nervous.   I still had a bad headache yesterday that came on so suddenly...they just come on so suddenly and get out of control that I have to drop everything and take the Alleve and Tylenol and put ice around my head.

I see that you had Dr. Friedman.   He talked to me and was trying to get me to come out there and said he would do anything to help me.   He sounded so nice and suggested the Middle Fossa for me.  I regret that I didn't go there.   I know Capt. Deb has problems but the people from my group that went there are OK.   I just don't know what to say, but am not happy with my follow up experience.   I feel at a loss.   I went to the Hopkins Headache Clinic and they gave me a resident that said my headaches were caused by the Alleve and Tylenol and to stop taking it and tough it out until they go away and come back and see him in six weeks.   I just can't do that because the headaches are too horrible to get through without help.   He offered no help.    I have sleep apnea so will go to the sleep apnea clinic and try to get a mask to see if that makes a difference in my headaches.

Hope you have a great Sunday.   It looks like beautiful weather.

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on October 17, 2010, 12:39:43 pm
Hi DonnaLynn,
Thanks for all the great advice.  It's really natural and healthy and I will surely put it to good use.   I have to find out where to get the amino citocoline.   I use the website Puritan's Pride to get my products so let me see it they have that and St. John's Wort.   I take Vitamin D3 with Calcium twice a day.   I don't take Vitamin K and will call Puritan's Pride about that.

I just joined a fancy new gym called Equinox and they have Yoga.   I used to go to Yoga before my father moved in with me.   He really ties me down.   I have been having a hard time even getting out to the new gym.  He keeps waking up and wanting something and I don't have help on the weekends to save money.   It cost $7,000 a month to include the weekends so we cut back.   I really miss it.   I take Cymbalta for the myofacial pain that I have and it is also meant to be an antidepressant.

Right now I am dealing with a flea infestation from my dog.  I have flea bites all over my legs and feet and body and scalp.   They dog went to the vet and got meds by mouth and another to take when he got home to prevent worms from the fleas.  Sure enough he vomited the food and worms came with it.  I freaked out and felt so bad.  I called the ER and they said this was normal and to call the vet on Monday morning.   The janitors from the school are shampooing all my rugs and on Tuesday the exterminator is coming to do the whole house including the baseboards.

My father has surgery next week for a thyroplasty for his weak vocal cords so he can eat and drink.  He is going to be 96 on Wed.
Oh I meant to tell you my headaches are at the top right side of my head andsometimes the bottom right side occipital area.
Will live through this eventually.
Hugs,
Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on October 17, 2010, 01:31:40 pm
Dear Donna Lynn,
I went just now to Puritan.com and looked for amino citicoline and couldn't find it but found many other Amino Acids.   It's all very confusing as to which is the best to buy for you.

I guess I need a nutritionist to advise me.  No?

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: tenai98 on October 17, 2010, 03:03:00 pm
Mei Mei
For a natural flea control, take a pie plate or something along that line and put water in it half way up.  then hook a light (lamp without shade on it) over the  plate/bowl of water...and leave on overnight...fleas are attracted to the light and will jump into the water and die....it of course wont kill eggs and eggs can lay dormant for yrs until conditions are favovable to hatch....
JO
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on October 17, 2010, 04:03:31 pm
Thanks, that is a great suggestion, but we are dealing now with the eggs as well.   I had the guys from my high school spend the afternoon here and they steam cleaned all the carpets in the house.   They are outside on the deck drying now.   The dog seems to be flea free for the first time today and that hasn't happened since Tuesday.   Last night after I gave him the worm medicine the vet gave us in case he got worms from the fleas he vomited up his dinner and it was full of worms.  I freaked out and called the ER and they said this was normal and to see the vet on Monday.   The exterminator is coming on Tuesday morning so we'll zap the eggs throughout the house.  I'm worried about the use of chemicals in our home and cancer, but this situation is really bad.   Thanks for your concern!

Mei Mei
Title: Re: Surgery Date at Hopkins, January 12
Post by: Mei Mei on November 30, 2011, 06:09:19 pm
Dear Forumites,
I am very sorry that I went to Jhons Hospikins ENT which was near my home in D.   I should have gone to HEI in Los Angeles even though it was farl from him .   These doctors at Johns Hopkins did not do well by me and I have been suffering ever since.  I hope that you do not suffer as much as I have.

Please call Dr Friedman at HEI.  He will do well by you.  I promise.

Hugs,
Mei Mei