Author Topic: Successful AN Surgery at the House Clinic on Feb 18, 2016  (Read 20798 times)

UpstateNY

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Successful AN Surgery at the House Clinic on Feb 18, 2016
« on: March 12, 2016, 11:04:31 pm »
I wanted to share my experience at the House Clinic, so others considering microsurgery can be aware that there are successful outcomes (at least so far).

Background:
I was diagnosed with an 8mm AN in April 2015.  My symptoms included high frequency hearing loss, fullness of the ear, some imbalance (lightheadedness), and a decrease in word discrimination in my left ear.  Since we were not sure if the tumor was growing at this time, we took a wait-and-watch approach.  A follow-up MRI in October 2015 showed a growth to 12mm, which is a fairly rapid growth for this type of tumor.  My hearing in the AN ear had decreased to almost nothing and the other symptoms remained.  My local ENT and other physicians I had consulted with thought it was best to have treatment.  I also started to get tinnitus in my AN ear that consisted of various noises ranging from crickets to static that would increase in volume with stress. 

Treatment Decision:
The most difficult part for me was deciding on a treatment.  Due to my tumor size and age (50), I was a candidate for both radiosurgery and microsurgery, or so I was told.  I spoke with the top physicians and treatment facilities in the US.  This included USC (Drs. Friedman and Gianotta) and House Clinic (Drs. Schwartz, Slattery and Wilkinson) about microsurgery, UPMC (Dr. Lunsford) and NYU (Dr. Kondziolka) about Gamma Knife, and Stanford (Dr. Chang) about Cyber Knife.  Each admitted they were biased to their type of treatment and did somewhat of a selling job, but I had expected that.  Even so, all were very respectful of the others and clearly said the decision was my choice. 

I had initially scheduled microsurgery at the House for Dec 2015, and then cancelled after second guessing my decision in favor of Gamma Knife.  My thinking was "Am I crazy for choosing surgery with all its risks over Gamma Knife?"  After further discussions with the various physicians, along with a past patient of the House, I came back to choosing microsurgery at the House.  My reasons were the following, although others could argue against microsurgery as well...that is what makes the decision so difficult:

- My tumor had what was considered aggressive growth for an Acoustic Neuroma.  Several physicians (although not all) thought Gamma Knife or Cyber Knife would not have the 97-98% control rate for such an aggressive growth and could fail in the long-term. 
- Radiosurgery has data out to 15-20 years, but very little data exists past that.  As per Dr. Kondziolka, very little data exists past that since most patients that had Gamma Knife more than 20 years ago are dead.  This is because radiosurgery was only performed on older patients (65 or older) some 15-20 years ago and these patients have died for other reasons.  This doesn't mean radiosurgery will have bad results past 15-20 years, but there just is no good data available.
- Personally, I could live with the tumor in my head, but would prefer to have it removed and avoid the radiation if at all possible.  I guess you could say this provides some peace of mind, although there is no guarantee the tumor won't grow back after microsurgery either.
- If radiosurgery failed, the tumor could be much larger and increase the risks of a surgical removal.
- Dr. Schwartz provided statistics that showed for tumors < 2cm using the translab method, he achieved similar results to what the radiosurgery physicians were providing (98% long term success rate, <1% facial weakness, etc.).  In my opinion, Dr. Schwartz is indeed a genius as others have stated and was very open with his results and what could be achieved surgically.

Regarding the facility, I chose the House primarily because of Dr. Schwartz.  He had no problem with speaking to me for 30 minutes at a time and even provided me with his mobile number to contact him at anytime.  I liked both Drs. Slattery (House) and Friedman (USC) for the Neurotologist, but for me it came down to the most qualified Neurosurgeon since that is who would be removing the tumor.  I felt Dr. Schwartz had far more recent AN experience than the neurosurgeon at USC.  Dr. Schwartz removes over 100 per year.

Surgery:
I live in New York, so my wife and I flew to Los Angeles for the surgery after only phone consultations.  We had the pre-surgical appts on Feb 17th where we pretty much reviewed what had been discussed over the phone.  This was the first time we met Drs. Slattery and Schwartz, and they certainly made us feel relaxed and that everything would go smoothly.  The surgery was Thursday Feb 18th and lasted 6 hours.  The first thing I recall was waking up in the ICU at approx 3pm and seeing Drs. Slattery and Schwartz asking me to smile and move my face.  I had no facial weakness and both were surprised that I had absolutely no vertigo or nausea.  Even though the tumor was relatively small (estimated to be about 1.4-1.5cm at the time of surgery), most of the vestibular function on the AN side was already lost and compensated for.  Dr. Schwartz said he completely removed the tumor.  They ended up performing a transotic procedure as opposed to translab, since I had a small mastoid and the tumor extended up to the cochlea.  This was discussed as a possibility prior to surgery, but on the positive side reduced the possibility of a CSF leak since they sutured the ear canal.

The first night in the ICU was the longest I ever had, since I woke up every 5 minutes due to noises and constant monitoring by the nurses...but for good reason.  I was moved to a private room on Friday Feb 19th, where I was able to walk the halls without any issue once the catheter was removed.  By late Sunday afternoon Feb 20th, I was released.  I really did not have too much pain and was only using some Tylenol the last day in the hospital.   This was primarily for the ear and jaw pain caused by the sutures in the auditory canal.

Recovery:
We stayed at Seton Hall which was very convenient.  For those trying to book Seton Hall, I found that they respond to email much faster than voicemail.  It took them 2 weeks to reply to my voicemail, but the email was answered in a day.  We stayed at Seton Hall until the post-op appts were completed.  Since Dr. Slattery was at a conference, I was scheduled to see Dr. Luxford on Thursday Feb 25th (7 days post-op) and another with Dr. Slattery on the following Monday Feb 29th (11 days post-op).  From the first day I was released from the hospital, I walked 5-10 miles each day with very little fatigue.  I continued to have very little pain where I only needed to take Tylenol two nights the entire week.  The pain was occasional throbbing from the ear sutures that traveled to my jaw. 

After the post-op appts, I was cleared to travel home.  At that time, almost all pain subsided, my balance was as good as or better than pre-surgery, and I still had absolutely no facial nerve damage.  Quite honestly, if it were not for the incisions and need for my hair to grow back, I could have went back to work (in an office environment) 2 weeks post surgery.   The tinnitus I had prior to surgery is gone, but has been replaced with a different form of tinnitus.  Now, I hear a low volume squeak in my AN ear when either I speak or have a louder noise coming in my good ear.  This is not really a concern for me, since I only hear it if I pay attention to it and is a better trade-off from what I had pre-surgery.

It is now just over 3 weeks post surgery and my recovery continues to go well.  I plan to return to work this coming week, but will refrain from traveling for a few more weeks. I travel internationally and wouldn't want to get into a situation where I needed to find urgent medical care in a foreign country I was not familiar with.

Drs. Slattery, Schwartz, and Stefon at the House are absolutely incredible.  I can't say enough good things about them.  As others have said on this site, Dr. Schwartz is an absolute genius. The nurses and staff at St. Vincent's Hospital took great care of me.  The areas for improvement would be on the administrative side and physical therapy.  The House could use a Patient Navigator like USC has, since I had to follow-up with them each step of the way.  When I did, I had to leave a VM most times and keep following-up until I reached them or got an email address.  The Physical Therapist didn't provide good instructions on what to do when I was discharged, but luckily I knew what to do based upon a conversation with a prior patient.

Someone on this website also suggested getting the surgical reports.  I did and they were quite interesting, so would definitely agree with that suggestion.

If anyone would like to speak, please feel free to PM me.


UPDATE AUGUST 2016: My 6 month post surgery MRI showed no indication of regrowth or residual tumor.  The recommendation was to have my next MRI in 5 years.  I continue to do everything I had done prior to surgery.  There are also no additional side effects other than what I had just after surgery (i.e. SSD and some form of tinnitus).  So far, so good...
« Last Edit: August 26, 2016, 08:15:25 pm by UpstateNY »
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

ANGuy

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #1 on: March 13, 2016, 08:29:59 am »
What a great post about a great outcome!  Could you elaborate on what "transotic" means?
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.

UpstateNY

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #2 on: March 13, 2016, 11:57:24 am »
Transotic is an extension of the translab approach where additional middle ear components are drilled/removed.  In my case, the last MRI showed the tumor extending up to the cochlea, so this approach allowed better access to the tumor and the facial nerve.  It was referred to as the transotic approach in one of my surgery reports and as the transcochlear approach in the other surgery report.  I had two reports, one from the Neurosurgeon and one from the Neurotologist.
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

ANGuy

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #3 on: March 13, 2016, 08:15:11 pm »
Thanks for the information.
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.

michellef08

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #4 on: March 14, 2016, 11:12:17 am »
Great outcome, and I'm sure your full description will help pre-treatment patients!

I agree with you that Dr. Schwartz is a genius, and I also had a great outcome from House! They preserved my hearing with the Middle Fossa approach, and I didn't have a single balance or facial issue!
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.

mcrue

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #5 on: March 14, 2016, 06:04:58 pm »

- My tumor had what was considered aggressive growth for an Acoustic Neuroma.  Several physicians (although not all) thought Gamma Knife or Cyber Knife would not have the 97-98% control rate for such an aggressive growth and could fail in the long-term. 


Thank you for the very well written and thorough report, and congratulations on your fabulous outcome. I agree Dr. Schwartz at the House Clinic in Los Angeles is a genius in his field. 

I too was considered an excellent candidate for radiation until my first 6-month "post-diagnosis" MRI indicated my Acoustic Neuroma had grown 5mm in 5 months (they usually only grow 1mm or 2mm a year).

To make a long story short,  apparently because of the aggressive growth (and previous suicidal tinnitus) Dr. Chang said I was no longer an excellent candidate for radiation (I should have gone 6 months earlier lol) for the same reasons you were given regarding aggressive growth. He said aggressive AN's usually require salvation surgery in the long run, and therefor Chang recommended microsurgery.

Dr. Chang and Dr. Friedman (before he even knew about the aggressive growth that would follow 6 months later) were the only doctors whom I consulted with that recommended microsurgery out of all the specialists I consulted with.

Dr. Lundsord and Dr. Sheehan actually told me the complete opposite, claiming that the faster growing tumors were better suited for the Gamma Knife radiation treatment and actually responded more favorably.

What' a  lay person to decide with all this contradicting info?

Plus, according to some members on this website,  Dr. Chang and many radiation specialists have treated children/teenagers with radiation, so I don't believe "age" is big factor as it once was regarding cancer, etc.

Dr. Schwartz indicated radiation would likely still be my best option considering my preferences, although since my AN was "aggressive" the success rate would likely be less than the advertised  93-95% (probably more around 85-90% which is still good).

I'm glad to hear your tinnitus has changed (for the better?), and thanks again for sharing your success story.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

UpstateNY

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #6 on: March 14, 2016, 08:26:11 pm »
AnGuy
Thank you for the kind comments.

michellef08
I'm glad to hear your outcome was very good as well.  If I still had hearing at the time of surgery, the Middle Fossa approach would have been my choice.  Unfortunately, my tumor was right next to the cochlea so completely took out my hearing in a matter of 6 months from initial diagnosis. 

mcrue
I too had conflicting info, especially between the radiosurgery physicians.  USC and House both recommended microsurgery (as expected), since my tumor was relatively small and would have minimal risk, but both said GK or CK were reasonable options if that was my preferred method.  UPMC and NYU both recommended GK (again as expected), but said microsurgery with a good surgeon should produce similar results.  I know many say that Dr. Chang is unbiased, but he basically told me he recommends CK for most patients since it avoids the open surgery risks unless there is a specific reason not to (e.g. large size, fast growth rate, patient preference, etc.).  Of all the physicians I consulted with, I believe Drs. Schwartz and Kondziolka were the most straight forward with me and had no issue with how much time it took to answer my many questions.   Both microsurgery and radiosurgery physicians commented about how the tumor control rate can be affected by the growth rate if choosing radiosurgery.  In the end, none of us can predict what will happen over the long term since we all respond differently to treatment, but both methods have a very high success rate at the Centers of Excellence so our chances are very good no matter which one we choose.
« Last Edit: March 15, 2016, 06:56:34 pm by UpstateNY »
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

mcrue

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #7 on: March 22, 2016, 09:26:09 am »

Of all the physicians I consulted with, I believe Drs. Schwartz and Kondziolka were the most straight forward with me and had no issue with how much time it took to answer my many questions.

I agree 100%
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

areles

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #8 on: March 22, 2016, 12:23:49 pm »
congratulations on a great outcome!  my son was at house a few days after you, with Drs. Schwartz, Miller, and Stefan (we loved all three, and frankly, i wish dr. stefan could be our PCP!).

i will echo for others' benefit both the response time/email being the better way to reach seton hall (we actually didn't hear back from them in time, and ended up in a local hotel - BUT, i didn't start trying to reach them until about a week before surgery, so that was our fault; they DID call back the day before surgery, but it was already too late for us to switch gears), as well as the following, which was our experience as well:

"The areas for improvement would be on the administrative side and physical therapy.  The House could use a Patient Navigator like USC has, since I had to follow-up with them each step of the way.  When I did, I had to leave a VM most times and keep following-up until I reached them or got an email address.  The Physical Therapist didn't provide good instructions on what to do when I was discharged, but luckily I knew what to do based upon a conversation with a prior patient."

how i longed for a patient navigator!  the onus was on me to follow up on authorizations as well as appointments (which a couple of times got moved around without us being notified in advance unless/until i contacted to confirm), which is not something i would have expected.  still, at the end of the day, it was a minor inconvenience to have my son treated by such skilled physicians.

how did you go about getting the surgical reports?  i'd definitely be interested in that as well.
22 y/o son:

2.8cm dx 12/31/15
translab (10 hours) at house clinic 2/23/16 - dr schwartz, dr miller
surgical repair of csf leak 2/27/16 - dr miller, dr chen
as of 2/28/16, still in hospital, with tentative release scheduled for 3/1/16
{indeed sprung 10:15a 3/1/16}

UpstateNY

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #9 on: March 22, 2016, 03:20:58 pm »
areles,

We also very much liked Dr. Stefan.  He was very personable, knowledgeable, and to the point.

I asked Dr. Slattery for the surgical reports at my post-op appt and he had them printed out before I left.  You should be able to call Dr. Miller (or her admin) and ask for them to be sent to you, since I don't believe they have a patient portal where you can access them electronically.

I wish your son the best with his recovery.
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

gahanorama

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #10 on: March 24, 2016, 11:04:19 am »
I will also make a separate post but I just wanted to chime in here. I had my AN removed at House on March 9th. I live in central Texas and have four kids. At first, the decision to travel to LA seemed kind of nuts but right now, two weeks out from surgery, I am so happy I took the trouble to go to House. My doctors were Wilkinson, Schwartz and Stefan. They are amazing. The AN was 1.7mm and was extending into the brain stem. Middle fossa was not an option so I did retrosigmoid. Everything is going great. I had barely any sickness or dizziness. I was reading books in the ICU by the next day which was a huge relief.

I was in the ICU for most of my stay at St. Vincent's because Dr. Schwartz decided to put a lumbar drain in during the surgery so that he could drain spinal fluid as a preventative measure to avoid a spinal fluid leak later. He said that some people have more porous bones and that if I ended up having a more "honeycombed" skull, that he would install the drain during surgery in order to be able to relieve excess fluid in the days following the procedure. I thought this was a great idea because one of the main things I worried about was having to have a drain put in while awake. From all accounts this is painful. The ICU can be noisy but I thought the nurses were the best. I did not mind the noise knowing that I was being monitored very closely.

As soon as I was released to Seton, my husband and I went on excursions around LA. We mainly used Lyft to get around which was very convenient. We went to the Griffith Observatory, Santa Monica pier, Malibu and the Getty Villa. Walking was no problem except that my head felt like a foreign object (it still does a little). My main issue was sleep. The steroids make it hard to get good sleep. Also, I need to force myself to rest because I do feel pretty close to normal. But, sometimes the end of the day will come with a vengeance.

They did preserve my hearing as well which was definitely not a given with retrosigmoid. It is definitely not great hearing but I won't know how it is until I get a hearing test in a month. Tinnitus is still there but I think it is different than before and also, due to steroids and ongoing healing, the doctors said it may take a month to settle down to the new normal. I definitely think that it is better in that loud, sharp noises do not aggravate it like before.

Hope that helps.

mcrue

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #11 on: March 24, 2016, 12:12:42 pm »
Dr. Schwartz decided to put a lumbar drain in during the surgery so that he could drain spinal fluid as a preventative measure to avoid a spinal fluid leak later. He said that some people have more porous bones and that if I ended up having a more "honeycombed" skull, that he would install the drain during surgery in order to be able to relieve excess fluid in the days following the procedure.

Congratulations on another success story from Dr. Schwartz. A true genius in his field.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

areles

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #12 on: March 24, 2016, 12:13:42 pm »
>He said that some people have more porous bones and that if I ended up having a more "honeycombed" skull, that he would install the drain during surgery in order to be able to relieve excess fluid in the days following the procedure.

this is exactly why my son developed a leak - that porousness.  i have to wonder if the experience with him (he was released eight days prior to your surgery) is what resulted in their preventive measures with you (dr schwartz was likewise his surgeon, and all were surprised by the development of the leak a few days later), and if so, i'm glad that's the case!  regardless, i'm very happy for you that you had such a positive result!
22 y/o son:

2.8cm dx 12/31/15
translab (10 hours) at house clinic 2/23/16 - dr schwartz, dr miller
surgical repair of csf leak 2/27/16 - dr miller, dr chen
as of 2/28/16, still in hospital, with tentative release scheduled for 3/1/16
{indeed sprung 10:15a 3/1/16}

UpstateNY

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #13 on: March 26, 2016, 08:32:39 am »
Quote
I was in the ICU for most of my stay at St. Vincent's because Dr. Schwartz decided to put a lumbar drain in during the surgery so that he could drain spinal fluid as a preventative measure to avoid a spinal fluid leak later. He said that some people have more porous bones and that if I ended up having a more "honeycombed" skull, that he would install the drain during surgery in order to be able to relieve excess fluid in the days following the procedure. I thought this was a great idea because one of the main things I worried about was having to have a drain put in while awake. From all accounts this is painful. The ICU can be noisy but I thought the nurses were the best. I did not mind the noise knowing that I was being monitored very closely.

gahanorama,
Congratulations on your successful outcome.   In my opinion, this shows why it is so important to pick surgeons with a high level of AN experience.  Whether the actions were due to a surgery performed a week earlier or the hundreds (if not over 1000) that Dr. Schwartz has performed in the past, having this experience allows him to know how to deal with issues that arise on the fly or mitigate potential complications.  This was certainly one of my considerations.
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

gahanorama

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Re: My AN Surgery at the House Clinic on Feb 18, 2016
« Reply #14 on: March 26, 2016, 10:07:50 am »
"this is exactly why my son developed a leak - that porousness.  i have to wonder if the experience with him (he was released eight days prior to your surgery) is what resulted in their preventive measures with you (dr schwartz was likewise his surgeon, and all were surprised by the development of the leak a few days later), and if so, i'm glad that's the case!  regardless, i'm very happy for you that you had such a positive result!"

I actually thought about this because, of course, I was reading the forum posts in the weeks before the surgery. I am sorry it happened to your son and I hope he is doing well right now.

I am just amazed that I had brain surgery 2+ weeks ago. I almost feel completely back to normal. I would say my head is still a little numb and I am still taking ibuprofen during the day and the hydrocodone at night. More as a preventative measure than because I have pain.

Take care!