Author Topic: 3 neurosurgeons pressuring me to get CK during pandemic! 1 said I could wait 20.  (Read 3285 times)

BigJoeBass48

  • New Member
  • *
  • Posts: 31
Not many people on here have answered my posts, a few have, maybe too long. I just spoke to the 4th neurosurgeon who is pressuring me like 2 of the other 3 have. That a small AN 1.4x1.6x1.6 is of UTMOST importance to get CK on ASAP! 1 CK doc said I could live 20 more years with this AN which would make me 83 and that would be a good life to me.

The other 3 want me to drive 4 1/2 hours, get the CK and drive home right after! That sound right?

I have intermittent tinnitus in right ear, a little in left on bad days. OTHERWISE NO SYMPTOMS! No dizzyness, no falling down, no headaches. They say AFTER the procedure (post CK) AN could get bigger, could have symptoms, might have to have radical surgery then. But this guy today said 80% chance tumor would shrink but tinnitus could worsen. WHAT TO DO?

I have many underlying health issues including High BP and asthma and male over 60 and 95 pounds overweight. This pandemic has killed over 50,000 Americans as of today. I have this procedure down now and 6 months later I have all kinds of symptoms and I can't just run to ER during the "resurgence" of Covid.

Kathleen_Mc

  • Hero Member
  • *****
  • Posts: 782
I'd be tempted to wait. You're currently not in any danger and not suffering from the AN so why toy with it ?
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Greece Lover

  • Full Member
  • ***
  • Posts: 198
obviously, I'm not a doctor, but I'd agree with Kathleen. Unless a doc has told you your AN is an emergency, and it doesn't sound like it is, it is unlikely that waiting a few months would make much of a difference.
I know there are many AN patients right now in limbo because of the virus and I"m sorry about that.  hang in there.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

BigJoeBass48

  • New Member
  • *
  • Posts: 31
Greece Lover and Kathleen_Mc-----Thank you very much for these 2 replies, I seldom get any reply to my Newbie posts. Yes, I am going to tell them I want to wait and see at least until the next MRI in January of 2021. I never like to argue with my doctors but I have to see what happens with this Covid 19. We've got over 900 cases in the area I live which could just be the tip of the iceburg if we could get testing done, it takes 6 months before any adverse symptoms of CK occur and that is right at the height of flu season.. Thank you again, Joe

Greece Lover

  • Full Member
  • ***
  • Posts: 198
That seems smart. Remember, too, you can always do a distance consultation withe the house clinic in California.  I believe they do that for free.  Even if you don't intend on going there, they're universally thought to be the best, and it could give you another opinion while you're in wait and see mode.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7447
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Hi all,

Had to chime in since I am a LONG CK AN'er.... just celebrated 14 years post-CK. :)

BigJoe, sounds like you are doing the proper homework to see what will work best for you.  Typically... your size AN is borderline small to medium (I believe medium range starts at 1.5mm.... any over 3cm is deemed large, but again, that is the last time I checked...) and, where your symptoms are there but tolerable, I would continue to peruse the discussion forum for specifics. There is the "Search" option on the home page to see if you can locate specific discussions regarding CK.... re: House Ear Clinic/Keck (Dr. Rick Friedman) and additional wealth of information.

For me, my AN was smaller than yours (1cm).  My neurosurgeon did my baseline MRI, then 6 mos later, we did another so we could do "comparison" to see if it was doing anything. In my case, it was. Like you, I did my research here on the forums... and also took advantage of the ANA Peer to Peer talk list (phone/email). For me and my particular situation, CK was offered here in Boston and that is the route I took. For me, it was highly successful (I can say this 14 years later!) and yet, as we all know, "individual results may vary."

Suggestion ... This Sunday, May 3 from 5p-6p EDT, the ANA is hosting an upcoming virtual event, where I will be co-hosting with the ANA and Mark McLaren, who was my mentor in my AN journey. I believe Mark is approximately 20 years post CK.

Participants need to register with the ANA for access to this discussion.  It may be worth checking out as you are doing your research and have questions.

https://www.anausa.org/programs/support-groups/upcoming-events

Regardless if microsurgical or radiation, know that we are here for you! :)  Hope to have you join us this Sunday.

All, be well... stay safe!

Phyl

"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

notaclone13

  • Sr. Member
  • ****
  • Posts: 290
Hi Phyllis, nice to see your post. You remain a hero and trailblazer to all of us on this site. Sharing of your CK experience has provided encouragement to so many of us. Glad to hear you are doing well 14 years on. Thank you for  all the wisdom you provide.

BigJoeBass48

  • New Member
  • *
  • Posts: 31
PPearl 214 and others who have replied to my post I just wanted to say "Thank You!" and I can see why PPearl 214 is a hero member. I checked on the forum discussion for 5-3-2020 and it is all filled up but I might make the one on 5-7-2020.

I know 1 woman who had CK done for "Trigeminal Neuralgia" which I also had after a botched root canal on 10-12-2016. 18 months on heavy opiates. I finally had a "nerve block" on 4-24-2017 which set off this horrible tinnitus. But 3 months before the nerve block I was already diagnosed with the 0.8 AN (at that time) which has grown to 1.4x1.6x1.6 so AN was already present BEFORE tinnitus. But my Head/Neck doc at Kaiser insists the AN is 100% responsible for the Tinnitus. No way! Right?


"Bushwoman" had CK on Trigeminal nerve. 5 months post CK she had horrific facial pain and tinnitus, unable to sleep, some loss of vision in right cornea, Feelings of something crawling or tugging on her face, drooling after drinking water, unable to kiss, she sounded almost suicidal in her post back in 2016 which I still have and showed to 1 CK doc which irritated him immensely. I just don't need this to happen to me. Especially now with this Killer Pandemic.

BigJoeBass48

  • New Member
  • *
  • Posts: 31
For some reason, the site is not letting me post a "New Topic"....I have not been on since May 1st or so, today is 9-27-20. I have been diagnosed with pretty serious "VERTIGO" which I have never had before, when I first get up or exercise with back on floor I am off balance, I go into a REM state while awake sometimes.. Never heard of it except for an Alfred Hitchcock movie. I've had 1 serious fall in June but my hip and knee already needed replacement which Kaiser won't do because of the Pandemic. Excruciating pain from hip to toes in my right leg, pain meds worthless.

I have also been having "pulsating" or "pulsatile" tinnitus as I heard a member describe hers. I bought a "wind tunnel" fan which worked ok at first. When I leave it on when I go to bed now the pulses are screeching loud and keep me awake until I turn the fan off. If I leave "white noise" on through blue tooth I cannot get to sleep.

I have spoken with 4 brain and CK surgeons. 1 CK doc told me I could live 20 more years w/o touching it. 2 said I could wait awhile. But the main guy is almost in a panic trying to get me to go for CK. 1.6x1.4x1.4? I already know he is gonna go into hysterics as to how this Vertigo and pulsating tinnitus is directly related to the AN. I was all pumped up to go for CK in March until this lousy Pandemic hit. I thought Pandemic was way more serious than it "currently" is. ANY ADVICE FRIENDS?

CoopCrafts

  • New Member
  • *
  • Posts: 6
Hi Joe, vertigo is the WORST.  I'm sorry you're going through it.  Has your doctor tried steroids with you yet?  For me, it really helped with symptoms, including vertigo.  I know your post is a little old, I wondered how you're doing now?
Tiny 3mmx2mm Found 10/23/20
Dizziness, Wonkyhead, Vertigo,
Slight Hearing Loss, Tinnitus on Left
Future Mid-Fossa Before It Grows

ANSydney

  • Hero Member
  • *****
  • Posts: 722
BigJoeBass48, it sounds like you've got time to check things. I would get at least 3 MRIs 6 months apart without contrast. Then check the size yourself. Your tumor may no longer be growing.

BigJoeBass48

  • New Member
  • *
  • Posts: 31
SEVERE VERTIGO on 2-1-2021, any advice would be so appreciated please?
« Reply #11 on: February 02, 2021, 03:21:29 pm »
Thank you for this reply! I have not been on for awhile, I don't know how to post, I forgot.. I have been postponing CK since August of 2017 when my AN was 0.8. I wasn't even going to go this year (2021) because of the drama of the neurosurgeons insisting I need CK/surgery and I despise the claustrophobia of the MRI tunnel.

Now, I have no choice. I had my 3rd episode of VERTIGO on 2-1-2021, yesterday. I woke up at 4:30 am to use bathroom and was falling all over. I could not focus, some s.o.b.. I went back to bed, got up at 8:45am, vertigo was the same. Phenegren helped with nausea, I called ambulance who said my vitals were fine and told me to ride it out, don't go to ER, many covid people there. Today better, not out of woods yet, I was able to drive. I use Ofloxacin 0.3 for tinnitus, was working since 2017. But right ear gets plugged up quickly now and this Vertigo happens. Tiny bit of tinnitus in left ear, I don't medicate that ear.

I thought Vertigo was only the name of a good Hitchcock movie. It isn't, it is terrifying stuff. I know it is from the ear drops, but already surgeons and doctors say it is from the AN. I only postponed CK because of the Pandemic, I didn't want to be going to ER with facial pain and have the Covid docs curse me for not staying home.

ANSydney

  • Hero Member
  • *****
  • Posts: 722
Do the neurosurgeons say that things will improve with CK?

BigJoeBass48

  • New Member
  • *
  • Posts: 31
I have spoken to my main neurosurgeon. He said that Vertigo is not indicative of AN tumors. So this makes me narrow it down to the Ofloxacin 0.3% ear drops. I used them almost 4 years, they really knock tinnitus down for me. My 5th MRI since 2017 is next week, I hate that claustrophobic tunnel. The neurosurgeon prescribed me Valium for next Vertigo attack, I have not taken yet because no attacks since 2-1-21.

BigJoeBass48

  • New Member
  • *
  • Posts: 31
Sydney, I have Kaiser HMO here in California. These CK surgeons are super pushy and always say "maybe" hearing can be partially saved. I feel like they are using me as a lab rat to "see what this does"... They never said until today that I have to drive 5 hours from where I live to this South San Francisco CK place where the team "zaps" my brain 3 times in 3 days, Kaiser supposedly partially re-imburses Hotel fees "maybe" which matters not if you are dead. Then they say I can just drive 5 hours home, no problem. Then 5-6 months later all the symptoms show and the lab rat expires? ewwwww! I've been reading all the posts about eye troubles, lost hearing, lost balance.

 


anything