ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Jet747 on June 08, 2015, 09:20:32 pm
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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
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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!
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astounding! best of luck for the future! :)
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<<<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 .
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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
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Amazing! Thanks for sharing your story. You have such a positive outlook - what an inspiration to us all...wishing you all the best!
Ruthie
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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.
:)
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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
(http://s6.postimg.org/u8dmj0bbh/image.jpg) (http://postimg.org/image/u8dmj0bbh/)
Post Surgery Tumor
(http://s6.postimg.org/5ge0bru4t/image.jpg) (http://postimg.org/image/5ge0bru4t/)
Post Surgery Cyst
(http://s6.postimg.org/54wjz0dot/image.jpg) (http://postimg.org/image/54wjz0dot/)
Awesome and supportive family!!!
(http://s6.postimg.org/q32px3djh/image.jpg) (http://postimg.org/image/q32px3djh/)
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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
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That is amazing they saved your hearing. Great for your wife to push for the MRI.
Wish you continued success on your recovery.
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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
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Scar, almost gone!
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My wonderful daughter!!!
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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
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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
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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
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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!!!
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Awesome pics!! Keep strong and keep it going on the positive side you are in my prayers!
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Alright Norton!!
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Ok, I'm not posting this to scare anyone. This is just my experience and I'm being honest about this whole adventure.
Radiation is NOT fun, but if I can get through it anyone can, I hate needles and I tend to faint at hospitals!
I had my RS in late May and took a conservative surgical approach. Meaning some tumor remained and I knew I would have radiation follow-up.
I had my GK treatment 10/30/15 and on 11/1/15 my eyes swelled shut for 2 days.
The swelling isn't from the radiation per se, it is from the stuff they inject to numb the pain from the device they use to lock your head into position.
My experience was it took about 1 week to really recover from GK swelling.
Unfortunately, I do have some good tinnitus now but I'm hoping it subsides in a few months. Also I can't stand music with a lot of treble as it bothers my left ear.
I'm finally feeling my energy levels return about 2 weeks after treatment.
I was glad I saw some pictures of GK swelling or I would have been quite shocked as it didn't really come on until 2 days after my GK treatment.
Anyways, I'm back to "mostly normal" now (2 weeks) and have my 6 month MRI scheduled in April. Not sure I expect to see any reduction by then but I'm thinking positively.
Feel free to email me as I'm an open book about this whole experience, I love chatting.
Good luck to you and I wish you well on whatever path your on!!!
Day 2, horrible swelling mainly in my eye area.
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Day 5 post treatment swelling down but not gone.
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1.5 weeks, swelling basically gone!
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Walking with my lovely daughter! Simply the best!!!
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Thanks for sharing your experience and photos. Wow, your eyes were really swollen! Glad all is back to normal. I think if I have to have radiation I will go with CK. I am allergic to everything and can not tolerate meds too well. Thanks again Jet747.
Best of luck,
MG
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Were you allergic to the numbing stuff they use or is it common to have swelling like that after GK? I'm sorry if I sound like a noob, but I am. I'm still not fully decided on how to proceed and trying to gather as much info as I can.
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Update 9 months post surgery and 5 months post radiation.
The great news is this is all fading quickly from memory, I think having a 20 month old helps.
Post treatments, still a bit of tinnitus in my left ear but it isn't as bad as it was 2 months ago. The scar continues to be healing quite well. I will say the winter in Chicago is unfriendly from the perspective that the titanium plate in my head feels weird when it is cold and I forget to put a hat on.
Honestly, all in, I would say I'm feeling at least 300% better than I was a year ago.
I will post an update in May following my MRI in April. I'm quite interested to see what this little guy looks like post treatment!
One of the many benefits which have come from this episode has been speaking with a number of people via this forum. It's a great site and I'm happy to talk to anyone. I'm becoming more and more convinced that your outcome is a combination of the skill of your Dr. and the positive attitude you carry in and out of treatment.
Good luck to you!
@Dizzy,
The swelling wasn't from an allergic reaction. It is simply a function of the volume of liquid they inject at the bracket mounting points. The liquid goes in but then gravity takes over and pulls the liquid down which is what caused the temporary swelling. It lasted about 2 days. Not such a bad effect. Email if you have other questions.
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Thanks!
It's great to hear your 300% better!
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Update - nearly 1 year post-op, 6 months post radiation (GK),
Just had my 1 year MRI follow-up appointment.
Everything went very well.
No change in tumor size which is great.
1 year beyond surgery I can report the following:
Balance is back to normal, I bike with my daughter all the time.
No dizziness, no facial issues, no hearing loss on surgery side. Remains at 95% which is the same as pre-surgery.
Slight tinnitus in left ear.
Sensitivity to high pitched sounds in left ear...going to an ENT next week to be fitted with an Etymotic device which reduces certain pitches of sounds.
All in I am extremely happy with how this ordeal is turning out.
I've enjoyed speaking with and e-mailing many of you over the course of the last year. Please feel free to send me a message if you have any questions and I will be glad to respond.
I plan to send an update in another 6 months after my 18 month MRI & I'll let you know if the Etymotic device works out.
Best wishes to you all,
Jet
Current state of the surgically reduced and radiated tumor.
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My awesome daughter who is growing up way too fast!
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Daughter and wife going to her favorite place...the fire station near our house.
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The family whom I love!!!
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Update August 13th 2016.
It's been about 15 months since the RS surgery and 10 months since my GK radiation.
I can report most everything is back to normal.
I will say the tinnitus didn't go away so I'm trying a product made by WidexUSA. It is extremely small and discrete and I wear it in my surgery side ear. Basically it plays random tones all day and somehow this makes your brain not "hear" the tinnitus. It isn't annoying and you can hear conversations just fine. I've had it for about a month and I would say it's definitely worth trying if tinnitus is bothering you. They give you a 30 day money back guarantee so it might be worth a try. It isn't a cure though. Also, my insurance didn't cover it so it cost me $2,300 but I still would recommend it for people whose tinnitus bothers them.
One other item of interest is I had 6 shots of cortisone in my scar about a month ago to help reduce swelling. Although I hate shots I would say I'm glad I did it and the scar inflammation definitely subsided (scar is obviously still noticeable though). A dermatologist recommended it & I decided to give it a try since I have a bald head. One nice benefit is the scar doesn't really itch anymore.
I have my next MRI sometime in November 2016 and will post an update then.
Hope your all doing well and if you have any questions feel free to PM me.
Best to you and your families!
Jet
Hearing Test Before surgery 5/19/2015 and hearing test 1 year later 6/7/16. A slight improvement in my hearing occurred, rare but possible I guess.
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The WidexUSA tinnitus aid.
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Widex "in action"...lol
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My 2 year old daughter and truly the best thing ever!!!
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Glad you are continuing to do well, and continuing to report back.
Cortisone is great stuff, for lots of things. My wife had a keloid scar on her lower back, about one inch in length, that was right where the waistband of her pants sit. It was raw and painful. Some cortisone injected into, one application, turned it into a "normal" scar within a week or so and it's been fine ever since. The shots are painful I'm told, but very much worth it. Repeat treatments might be needed, but not in her experience.
Fair skinned people can get keloids, though it is not as common, so maybe you had a bit of that going on with your scar.
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Update August 13th 2016.
I will say the tinnitus didn't go away so I'm trying a product made by WidexUSA. It is extremely small and discrete and I wear it in my surgery side ear. Basically it plays random tones all day and somehow this makes your brain not "hear" the tinnitus. It isn't annoying and you can hear conversations just fine. I've had it for about a month and I would say it's definitely worth trying if tinnitus is bothering you. They give you a 30 day money back guarantee so it might be worth a try. It isn't a cure though. Also, my insurance didn't cover it so it cost me $2,300 but I still would recommend it for people whose tinnitus bothers them.
Wow! I PAID $3300 for the exact same from Michigan Ear Institute. I feel ripped off. I came in there all suicidal and would have paid anything ..and apparently did!
Anyways, the WIDEX hearing aid with Zen feature has helped me cope with my tinnitus 75-80% which is life-saving in my opinion.
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18-month update.
It has already been 18 months since surgery and 12 months since radiation.
Here are the main highlights:
The remaining tumor has some apparent necrosis going on, which is excellent.
The remaining tumor is however slightly larger than it was six months ago -- this is considered "normal." Physically I don't notice but mentally it bugs me.
Tinnitus is annoying; I'm doubtful it is going away. When I remember to wear my Widex Zen thing, it helps, but I usually forget to wear it.
I have no hearing loss.
I have no balance issues.
My energy levels are at an all-time high.
All in I'm pleased with where I'm at. The next MRI scheduled for one year which is when I plan to update this thread.
If I knew how to, I would change the title of this thread to "post surgery story"...it is definitely premature to call this a "success story" because I have about 40 years of life expectancy remaining. Things that I would never have thought twice about before surgery now weigh a bit on my mind. Headaches for example; before surgery I never thought twice about getting one. Now I get one and there is just the slightest bit of suspicion that something is going wrong. I guess this is par for the course for everyone regardless of the way they choose to treat their AN.
My daughter is just over 2 now and brings us the greatest joy I could ever imagine. She is truly a gift from God and came at exactly the right time!!!
Good luck to you all, as always feel free to reach out with any questions/comments you may have.
Best,
Jet
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I'm so glad to see you doing so well. Tinnitus and headaches are things people who do not have AN's get too, so consider yourself normal and carry on enjoying your daughter.
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carry on enjoying your daughter
Thanks and that is exactly the plan! We try to live in & enjoy each moment as much as possible.
By the way, I didn't mean to imply I actually worry about headaches. I may get a minor one every other month or so; really they are not more/less frequent than beforehand. Just the mere fact that I think about them at all is annoying.
Good luck on your WW and I wish you the best!!!
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Thanks!
I know a thing or two about being a father of daughters, so I know where you are coming from. Boys are great too, but definitely different!
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Hi Jet! Thank you so much for your detailed testimony!
I have a question, I'm not sure if I missed this on your previous posts: Why wouldn't they surgically remove all of the remaining tumor, on your last operation? Was there a risk of affecting something else if they did?
My mom is 76. We just discovered a few months ago that she has a left ear neuroma, now 5.1cm in size. She lost all of her left hearing and lately it would affect her balance, just like in your case, no dizziness. Hence, she fell down 5 months ago and broke her left hip (osteoporosis not helping). Yes, it's been complicated!
Under medical advice and given her age, they applied a 28 session low power radiotherapy instead of surgery to try and weaken the tumor and maybe even reduce it. But it didn't help that much, tumor is still there and now she is showing other complications (post radiotherapy edema maybe have something to do as well). Now we must proceed with surgery and we are worried about the possible consequences. That's why I'm really interested in knowing, if possible, why wouldn't your surgeon remove all of the remaining tumor and if it was in order to avoid certain consequences.
Thank you in advance!
Mike.
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Mike,
The main details discussed were:
Location of tumor - the goal being not to get too close to the cranial nerves which can cause a wide variety of various issues if they are damaged.
My Health - fairly good at the time, the goal being to give a high probability for a high quality of life given my age and life expectancy.
Preservation of hearing - the goal being to retain it if possible.
So based on the above we all agreed to go conservative on the surgery removing around 65% of the tumor...then follow up with radiation to prevent it from growing back.
Nothing is guaranteed but, so far so good in my case!
Due to its size, radiation alone was never considered. My choices were a "big" total resection surgery (100% chance of going deaf in the left ear) or a "smaller" surgery followed by radiation (still a chance of deafness).
After the surgery my balance returned to normal almost immediately. I'm not sure if you've seen your mom's MRI, but if you look at mine the tumor was really pushing on the brain stem. Once the pressure was taken off the stem, my sense of balance came back even though the tumor wasn't 100% removed.
As you will see on this forum, every case is very different so it is really hard to make any sort of recommendation as to what is best. I'd say your best chance of a great outcome is finding a qualified team of Dr.'s who do this day in and day out. I'd imagine that there might be geriatric specialist within this already specialized field...though I haven't seen that come up yet.
Feel free to PM me if you have any other questions that I might be able to answer!
Best,
Jet
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2 YR Update
Happy to report back that 2 years after surgery and 18 months after radiation; remaining debulked tumor looks stable!
Life is pretty much back to normal. (as normal as life can be with a nearly 3 year old daughter!)
Minor tinnitus remains constant, however AN side hearing remains fully intact and no other issues have presented. I still don't like music with too much treble but other than that things are great. I have been using the Widex Zen for awhile, if you have tinnitus I definitely recommend giving it a try.
Should you ever wish to reach out with any questions send a pm and I'll promptly respond.
Best wishes to all of you wherever you are in the journey!!!
Jet,
Picture of each 6 month MRI side x side to compare volume.
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Picture of the awesome and supportive family.
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Pictures of my favorite kid!!!
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2.5 year update
Happy to report back that 2.5 years from RS and 2 years from GN the debulked tumor is shrinking nicely.
Took a non-aggressive approach to AN surgical treatment in order to try to preserve hearing.
2.5 years away post treatment my AN issues are limited to tinnitus (lessening over time), sensitivity to music with a lot of treble and inability to lay completely flat (extreme dizziness, no change since surgery).
Thankfully my hearing is still fully in tact.
I’m scheduled for a 3 year MRI then I move from bi-annual check-ups to annual check-ups.
Our 3 year old continues to amaze me with her endless energy.
Good luck wherever you are on your journey!
BR,
Jet
Spent 3 months working abroad this summer, photo in Prague.
(https://s1.postimg.org/6gzkbyh9cb/8_E64_A932-_F1_F2-4_E95-89_BA-979_C82979_CD9.jpg) (https://postimg.org/image/6gzkbyh9cb/)
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Congratulations Jet on retaining your hearing following surgery and radiosurgery. All the best for the future.