37 YR Male, 6.3cm AN, 4 surrounding cysts - post surgery success story Chicago

[Jet747]

Hello,

First, I wish I would have found this forum a few weeks ago as there is some great information here!

I will post some details of my case and if you have specific questions please email me and I will be happy to reply.

I had been having noticeable balance issues for 3 months, I would just fall over.  No dizziness, no headaches, no nausea.

I had been seeing my primary doctor who suspected I was becoming allergic to my allergy medicine.

After taking a big fall on May 10th my wife and I suspected MS and asked for an MRI which I had May 11.  May 12th I received a call at work whereby I was notified that I had an extremely large tumor.

I was told I needed surgery ASAP and met with 2 neurosurgeons from 2 different practices.

I had my first surgery with Dr. George Bovis of the Brain & Spine Clinic operating out of Lutheran General Hospital, May 19.  During the surgery he found another cyst in my brain stem.  I had a second surgery May 21 (they used the same entrance).

Long story short I returned to work today (part time) and already feel much better than before the operation! 

I can share my MRI's & post op staple pictures if your interested just email.  (Not sure how to post here)

My tumor was very large, it was located on the left side and pushing against the brain stem, hence my falling.  I did have some minor ringing in my left ear.

The main tumor was surrounded by 3 cysts which where also removed.

I'm scheduled to have gamma knife treatments in October to kill the remaining tumor.

All in it was very scary for my wife, I honestly didn't know what to think and everything moved so fast so it was not too bad for me.  I stayed in hospital a total of 7 days.  I used ATI for my physical & occupational therapy.  My balance is restored and I have zero hearing loss, I'm quite lucky thus far.

Anyways, I mainly am posting to offer encouragement and if you want to email I will respond.

Best of luck,
Jet

[Jet747]

Hello again,

I think I figured out how to post a few images.

This is the AN, post surgery staples and my daughter who enjoyed the wheelchair rides!

[/url]









[/img]

[keithmac]

astounding!  best of luck for the future!   

[rm516]

<<<My balance is restored and I have zero hearing loss>>>>
Jet74, You may be the only person on this forum (wouldn't be surprised if in this entire world) who had such large (6.3 cm) AN and did not lose hearing. Congratulations!!
 I thought, I was the lucky one, still retaining ~50 % hearing after AN surgery(Rt side) in Jan, 2013. My AN size was 3.5 cm X3.5 cm . Although,  I still have nearly 25 % of remaining tumor, although and it hasn't grown after surgery (~1.5 years). I am 59 years old.
Neurosurgeon (Dr. Sisti) said, if it grows I may need Gamma otherwise I am good to go.

Thank You for sharing such good news, because it gives encouragement to newbies.
BTW:  Did you have any other temporary issues (like Facial nerve, dry eye etc) during recovery.
Good luck for your upcoming Gamma sessions .

[Jet747]

Rm516,

Indeed I feel very "lucky".

I have had no post-op issues (thus far). 

Honestly I have no idea and I didn't do anything special.

I do feel as though I kept a very positive attitude and I would say Dr. Bovis did an excellent job (2 times). Lutheran General Hospital also did a great job while I was in ICU (5 days).

Post-op my only complaint was the drug they gave me, Delaudet (sp?).  I didn't like the effects so 1 day after my second surgery I switched to 500mg of Tylenol.

Perhaps the cyst that encased the tumor helped facilitate such a good result?

I do want to offer words of encouragement to everyone going through this and indeed I believe there is strong hope for remarkable outcomes and recovery!  It wasn't exactly "fun" to go through the surgery but it wasn't too bad either.

Best,
Jet

[Ruthie Mac]

Amazing! Thanks for sharing your story. You have such a positive outlook - what an inspiration to us all...wishing you all the best!
Ruthie

[Jet747]

Hello,

Today I had my staples removed!

What a great feeling, not painful at all although a bit red/tender afterwards.

Neurosurgeon is following up with a CAT scan in 4 weeks to see how things are "settling" into place.

Plan now is to have gamma knife in mid-October to kill any remaining tumor.

Still no post-op negative side effects.  Hearing in tact, no facial issues, no ringing.  Hoping all stays well!

I would say that before operation I was tired all the time and would sleep roughly 12 hours per day, never really feeling rested.

Now I sleep 5 hours and feel completely rested, so that is a bit of an adjustment.

Dr. thinks I've had this growing for 7-10 years.  I tell all my friends that beat me in any sort of competition in the past few years that their win is void due to my tumor...it is a great excuse!

I HIGHLY recommend Dr. George Bovis, out of Chicago.  Skilled, affable and confident!

The bills are now starting to come in, luckily we have BCBS with $2,000 deductible.  I can't believe this ordeal could cost $400,000.  That just seems crazy.

Best of luck to you in your journey.  I only wish to provide encouragement to whomever is reading this.

 

[Jet747]

9 week update.

Things continue to be going great, just had my first post-op CT scan (no contrast die) and Dr. is happy with the way my brain is settling into place.

I still maintain full hearing with no facial issues.  Between the scar and my ear I have no feeling yet (Dr. indicated that can take up to a year to regain). 

The main issue I have noticed is if I lay completely flat or bend over so my head is lower than my heart I get EXTREME vertigo.  To the point I can easily pass out, and did so once.  Dr. says to avoid those positions and there isn't a "cure" for vertigo.

Overall I still am extremely happy with results and would offer encouragement to anyone.  If your in Chicago use Dr. George Bovis, he's amazing.

Gamma knife is set for October to kill remaining tumor, I will post an update then.  Not too concerned about that as it sounds pretty easy compared to surgery!

Good Luck!

Pre-Surgery



Post Surgery Tumor



Post Surgery Cyst



Awesome and supportive family!!!

[NYLady]

Hello Jet747....

First, congratulations on your progress!

Your films absolutely blew me away.  I cannot imagine an AN that size!  For the folks looking into treatment and wanting a positive story....I think this is a shining example of the way someone has dealt with what he has been given.  You are a young man, with a beautiful family (baby is adorable).  I think you made the positively best choice in having surgery.  Compared to surgery, GK is easy.  There are symptoms after all treatments...sometimes temporary, sometimes not.  I am about a year out from GK with balance issues (going for vestibular therapy and it is working), hearing loss (Phonak Bicros, which are great) and looking forward to getting better going forward.  Good luck to you Jet and all the best to you and your family.

NYL

[wsflyer]

That is amazing they saved your hearing.  Great for your wife to push for the MRI.

Wish you continued success on your recovery.

[Jet747]

Here is my 4 month post retrosigmoid operation update.

Monday, I went in for my first post-op MRI (previously had a CT scan but you can't really see any details).

As you can see below the actual scar is healing quite nicely; which is great since I have a bald head.

The remaining shell of the tumor is approximately 2.8cm X 1.2cm X 2.7cm.  This might seem large but considering the starting size of the tumor it is quite small.  The Dr. removed the "guts" of the tumor and what remains is the outer shell which is collapsing on itself quite nicely.  The radiation will then be "shot" at the collapsed shell.

Gamma Knife radiation is now scheduled for October 30th and the Dr. is confident the radiation will kill and stop any future tumor growth.

I still have zero hearing loss, zero facial palsy - really no post-op issues to speak of.

The goal of my treatment plan has always been to take a conservative approach and to preserve hearing if possible.  There is still a chance hearing loss could occur sometime after the Gamma Knife radiation but the radiation is necessary to minimize the chance of tumor regrowth.

I have enjoyed having several phone calls with several people who have reached out to me via this forum.

Our cases might be very different and our outcomes might be slightly different but we are all human and need encouragement.

I am very glad to chat, text or e-mail with anyone who reaches out via e-mail.

My next update will be after the gamma knife experience.

I'm asking Blue Cross Blue Shield for an itemized billing statement (which I will post) as I believe this experience has now cost somewhere around $350,000; of which I paid a $2,000 deductible.  I have no idea how much the radiation treatment will cost but I'm glad I'm having it this year as I already met my health insurance out-of-pocket maximum.

MRI taken 9-14-15

image sharing

Scar, almost gone!

windows 7 screen shot

My wonderful daughter!!!

image hosting over 5mb


upload pic

[keithmac]

Amazing changes!  What a large bill and still more to follow - good thing you have insurance cover.  A great outcome and you're well on your way to resuming an ordinary life.  That's what we here love to hear!!

Keith

[GaryWNT]

So happy for you! I have a feeling that those last two pictures have a lot to do with your recovery and positive results . . . lots to live for!
Gary

[MG]

Thank you for sharing your AMAZING positive outcome Jet! Best of luck with GK! Thanks also for sharing pictures of your family. Your baby is so cute!

MG

[Jet747]

Update

Just finished with gamma knife.

All in not too bad.  The device they screw on your head hurts quite a bit but the procedure goes pretty quickly.  1.5 hours.

I left with a headache and I'm tired but I feel like the journey is finally winding down.

I have an MRI in 6 months to see how things are going.

Keep emailing me questions and I will keep responding!

Best wishes to you all!!!