MGH Retrosigmoid Surgery experiences

[Else2m]

Hello to all,

I am 30 years old and was recently diagnosed in early August 2014 with a 2.6cm AN (and or a meningioma) on my left side of the skull base /CPA . I had the MRI due to tinnitus (ringing in the ear) on the left side and slight hearing loss.

The scary part for me is that my wife and I just had our first child in July (a boy), who is barely sleeping. So I've been concerned by the additional stress this is causing her, as she is up every night with a NB baby. Ultimately, i just want to make it thru this ordeal and enjoy life with our new and growing family.

After seeing multiple surgeons, we elected to go with a team approach offered at Massachusetts General Hosptial (MGH) of Dr. Barker, & Dr. McKenna of Mass Eye and Ear Institute. They seemingly have done the majority of their surgeries within the skull base for both Meningiomas and Acoustic Neuromas. The only problem in my eyes is that their schedules are booked, and I cannot have the operation until the day after Thanksgiving (Nov. 28 2014) - more than 3 months away of waiting and potential further growth of the tumor and its symptoms.

I was hoping someone in the forum has had this particular operation (Skull base - retrosigmoid ) for a AN / Meningioma (cant tell via MRIs)  tumor, at MGH , with Dr. Barker etc. that can share their experiences. Any help in what to expect, surgery, recovery etc. would help not only myself, but my wife and family to rest easy as we wait for the operation over the next 3 months.

Thank you!

[CHD63]

Hi Else2m and welcome to this forum .....

Although I am sorry you have been diagnosed with an acoustic neuroma or meningioma, you have come to the right place for support and caring by people who have gone before you.

If you have not done so already, I urge you to check out the abundance of material available on the ANA-USA web site home page:  https://www.anausa.org/

As you know, on the average, ANs are very slow growing so I feel certain Drs. Barker and McKenna would have scheduled you sooner if they felt you should not wait.  If you experience any new symptoms or drastically worsening of your symptoms, by all means contact them with this information.

Actually these three months will give you plenty of time to get things in order for the recovery period afterwards ..... finish any urgent projects, do some fun family things, etc.

Please feel free to ask any specific questions you might have.

Many thoughts and prayers.  Clarice

[raji83]

Hello,
First of all congratulations on the arrival of new member in  the family. Second thing is just relax. AN is not dangerous. I am also 30 year old and found i have AN in this June. I also have a new born who gonna turn 1 tomorrow. I can imagine this initial phase is really depressing and annoying but we don't have any control over it. SO looks like you have decided your surgeon. Are you sure that you have researched enough and had fair number of opinions. My surgery has still not been scheduled because we are having many opinions. It's all your choice but just sharing m experience.

I am from Philly,PA and i have met all the best neurosurgeons around the area. We liked Dr. Tamargo from Johns Hopkins. But we do not want retro approach so we passed him. But we found he is the best doc for retro. Recovery time usually all docs say is 6 to 8 weeks but again as they say every person and every AN is unique so can't give exact answer. But yes again don't stress your self by thinking about it. Her AN size is not that big so hopefully she will be recovering  fast and god will bless her with all good things. And for the sake of baby god will have to take care of your wife. This is my way of thinking because i also have little one with me.

If you need more information or you have any questions please feel free to contact me. I am available to talk on phone as well.

Thanks

[volleymom]

Hi Else2m,
I'm glad that you have found our little club, welcome.
I was diagnosed in August 5 years ago, and my Retrosigmoid surgery was not scheduled until the Monday before Thanksgiving. That was perfect timing for me because I didn't want to miss any of my daugheter's volleyball season.  I spent the first post-op night in ICU, then I moved to a regular hospital room. On the afternoon of Thanksgiving I was ready to be discharged.  I mostly slept upright in the back seat on the 2 hour drive home. I was able to be at the family table for Thanksgiving dinner but don't remember details.  It was hard to sleep at night for the first few weeks, not because of pain, just restless from steroids.
I lost the hearing in one ear and my facial nerve had weakness for a few months, it is just an uneaven smile, and eye opening now. I was weak and had blurry vision at first, needed frequent eye drops but that was temporary. At 10 weeks post op I went back to work full time nightshift as a nurse.
At 3 years post op I got the Cros hearing aid and that has helped me at work and out in the public.
Now, I can do anything that I ever did before surgery, but some things make me more tired than they used to. I have ringing in my ear but it is not terrible.
Your baby will be sleeping longer at night by November. If you lose hearing, you will find that you sleep well on the good ear side and might not notice the baby crying or an alarm clock.  Once you are home, you will be just focused on resting, walking and eating well. I didn't need constant care at home, just someone to cook at first. Later, I did the cooking to work on my endurance with being up on my feet.
I hope my story gives you more confidence with your plan.
 

[Kerrybr92]

Hello Else2m,

I am glad you found this forum.  I have been on since I was diagnosed in 2011 but have not posted until seeing your request for information.

I was the same way as you thinking this was something that needed to be taken care of immediately but the tumors do grow very slowly so I can not imagine that will be a problem.  I know there is some peace of mind to do it sooner rather than later.  The few months you have will give you time to get a few things ready before you go in.  I too needed to wait 3 months.
I had about the same size tumor as you and also chose Dr. Barker and Dr. McKenna.  I was confident that they had the most experience in the Northeast.

I have to say that I was very naive going into the surgery.  My husband is even a Neurologist but we still did not fully grasp what was going or could happen. 

I spent the night before the surgery in a hotel so that we would be ready go super early.  At that time I did not see either doctor but did see their residents.  I think it was that time I realized this is pretty serious.  The surgery was very long since the tumor was very sticky and awfully difficult to remove from the facial nerve.  I think about 16 hours.  They left some tumor attached to the facial nerve so that they did not cut it.  During the surgery they were testing the facial nerve and were confident that it was intact just stretched a little.  I spent 1 day in the ICU I had a very hard time coming out of the anesthesia and I think that was the worst part form me.  I then moved to a private room.  The nursing staff was excellent.  Over the next few days they realized my facial nerve was not recovering as they had hoped and I had a consult with Dr. Hadlock.  She is the facial nerve expert at Mass Eye and Ear.  I also had trouble with my vision so I saw a Neuro ophthalmologist.  Neither could help me in the short term since every thing takes time, especially the facial nerve.  I stayed in the hospital for 8 days since I had a few set backs with.  I received both physical and occupational therapy while there. 

Once home I was really out of commission for a solid month.  I was weak, exhausted and in pain.  I has severe headaches almost daily and I needed to use a walker to get around since my balance was not great.  I did lose my hearing in the right ear so that takes some getting used to.  My facial paralysis was dramatic.  I could not close my eye and it was so dry that I needed to have lube in it all the time.  I needed to drink everything with a straw.  I also did not look great.  We took pictures every month so that we could see the progress since it was so slight.  I went to vestibluar therapy to help with balance issues.

I returned to work the end of January but only half time for the first two weeks and then full time.  To say I was tired would be an understatement.  I would work, eat and sleep.  I have two boys who were 13 and 15 at the time.  They were able to really take care of themselves and my husband carried a huge burden.

Flash forward to today.  There are a few things I still can not do.  I used to love to run.  I can not. The up and down movement in my head causes a headache.  I now have very few headaches which is a relief.  At night my balance still is not great but ok.  I am still getting used to SSD but do not plan to do anything about it as far a BAHA right now.  I have been using a sclerel lens to combat my eye dryness for about 2 years.  That has been great.  I worked with the Boston Foundation for Sight and they are amazing.  Since I have no tears or saliva on the right side my mouth gets very dry in the winter.  My taste has been off ever since the surgery.  I did some facial therapy in Dr. Hadlock's office for about a year and that has seemed to help but I still can not fully close my eye so I had a platinum weight put in the eyelid to help it close.  My smile is still a little off but so much better than before.

So it is hard to say that I had a good experience at MGH but of course I did, it's all relative.  The care I received was excellent and I was able to get fast consults when problems arose.  I would go back there again if I needed to...hopefully not though.  I hope I did not bore you or worry you more than necessary.

[New girl]

Congrats on the little one!   

I had retrosigmoid with Dr. Barker (MGH) and Dr. Lee (MEEI) in September 2011 for an AN.  I spent one night in the ICU and the one night in their neurosurgery unit.  I was lucky that I did not have any post op complications and I still have most of my hearing.  I do have some minor balance issues when I am extremely fatigued.  I do find that getting in better physical shape helps a lot.  I have constant tinnitus but I also had this pre-surgery.  After I was diagnosed I spent hours on this forum reading other people's experiences so that I was as prepared as possible for all outcomes.  Barker and McKenna are definitely a good choice - you are in great hands!   I went back to work after 2 months.  I think I really could have used another month off.   Let me know if you need any more specific info.  I cant believe it has been three years after my surgery.