Here I come - Surgery after Failed FSR

[zjane]

Hi,  I want to come here and share my story with everyone.

First please pardon any grammar errors below as English is a 2nd language.

Yesterday I got confirmation from my radiosurgeon that indeed my FSR (Nov 2005) had failed.  I've posted on the Radiaton board before about Swelling vs. Growth. Well in my case it was Growth indeed.   Even the Necrosis from the previous scan had grown back solid.  My AN is now 2.1 from the 1.4 pre FSR.  My symptom is facial spasms and I lost pretty much all usable hearing on the right side.  I had an idea that was going to happen as my symptom kept getting worse and I had already started talking to forum members and AN surgeons before hearing the news from him.

So -

I talked to Dr. Wiet (I'm 2 miles from the hospital) from ChicagoEar last week.  I liked him alot and actually tentatively scheduled the translab for 6/27. (Another member here, Ellen is scheduled to getting hers done the next day in the same hospital so we can actually meet up  )  I later found out he's actually the current co-chairman of the ANA medical board.  He's so interested in my case, he asked my permission to present it at the symposium in Spain next week and also in July (Philly?)  because he's going to speak at both. (-- so those of you going to Philly, you might get to see my scan! -- )  Dr. Wiet has done 900+ AN with 15 or so post radiation.

Mailed my CD to House and Dr. House called me the day before yesterday.  He said the same thing - Translab and BAHA if I want it right away.  I'm waiting for more information on the different surgical teams from House.  In Crystal's story her team @ House had done 450 AN and 15 post radiation at the time.

Next I also schedule an appointment to see Dr. Leonetti @ Loyola, he's done 1000+.  I want to hear what he has to say. 

Unless something changes drastically I think I'm going to get the AN out locally (Chicago Area) since both surgeons are very experienced and I have a 3 yr-old who's not fully potty trained so staying local logistically makes it easier for my family member as well.

Okay - Just wanted to come here and share my information with everyone.  I still don't regret getting the FSR it was the best approach at the time.  Too bad it didn't work out but now I have an oppurtunity to really get it out of my head and move on with my life (have another baby, maybe!) .  I love this forum!  I don't post much but thanks everyone for all the information and encouragement.  And especially I really appreciate the few of you I have contacted and since provided much valuable information to me!

I'll keep everyone updated.  Thanks!

p.s. Seems quite a few failed FSRs are associated with Hemifacial spasm symptoms.  Very curious.

[Dealy]

These are one of the posts that you hate to read.I feel so much for and hope whatever surgeon you choose-it will turn out for the best.My prayers are with you. I have a stake in this too I guess because I had FSR-25 sessions in Summer of 2006. Coming up on one year MRI at end of June. I do not have facial spasms but I was put on Celebrex because I was having small nerve shooters in my face. I will complete a 60 day course in 10 days. Hearing has diminished to point that only way I can hear is with hearing aid. Last MRi at 9 months showed signs of swelling-this was verified by actually 4 doctors-where I had FSR and 3 doctors in Kansas City.Interested to see how things turn out for you. Hope I do not have to join your club. Thanks-Ron

[zjane]

Thanks Bruce.  I spoke with Dr. Chang back in January and have also mailed him copies of my MRIs.  I havn't heard from him.  I'm going to email him next week if I don't hear by then.  Judging from what happend to Crystal and Byron I think he probably would also recommend surgery. 

Ron - Please keep in mind the fail rate is still very low, please don't be discouraged because of my story.  I'm so grateful that this forum exists and I can get all the information and encouragement from people who really know what the AN experience is.

[Jim Scott]

zjane:

Hi.  Please allow me to extend my best wishes for your upcoming AN surgery. 

I'm sorry the FSR treatments didn't do the job but you seem to have recognized that approach did have some small risk of failure. 

I admire your positive attitude toward both the radiation failure and subsequent and necessary surgery.  This will make the surgery, hospitalization and recuperation go a bit easier, I'm sure.  At least, on an emotional level.  It worked for me. 

I went the opposite way: surgery (retrosigmoid) to reduce the tumor, then, 26 FSR treatments to kill it.  So far, so good.  All of my AN-related symptoms pretty much disappeared following the surgery.  The FSR treatments were unremarkable (no complications) and my last MRI - in late April - showed the beginnings of tumor necrosis.  My neurological evaluation also showed marked improvement from previous tests (I can now walk 'heel & toe') and the only question was over some slight swelling noted on the MRI.  I thought this was normal and was unconcerned.  My conservative neurosurgeon basically agrees but wants another MRI scan in June just to keep a close watch on the remaining tumor.  I can't argue with that and I remain optimistic.

Again, your clear-eyed recognition of the possibility for failure when receiving radiation treatment and, when that failure occurred in your case, your willingness to undergo the necessary surgery, with it's own risks, is admirable.  I truly wish you all the best.

Jim

[zjane]

Thank you so much for the encouraging words, Jim. 

I talked to Dr. Schwartz @ House today.  He sounded very sharp, he's done 530 surgeries with 20 being post radiation. Now I can't decide where to go for the surgery.  I'm going to see my local Neurosurgeon Monday and I pray for God to guide me to a decision.

[stein78]

Jane,

I just replied to your message, sorry it took me so long!  You can't go wrong with Leonetti!  I had a great experience with him and Dr. Anderson at Loyola and would recommend them to anyone.  Best of luck to you!

[Ellenmn]

Jane
Sorry you're having such a struggle deciding. In my opinion you don't need to go all the way to LA to have it done. I think that either Wiet or Leonetti will do a great job. If you do decide to go with Wiet we will see you at the Hospital the end of June.
By the way I think you will really like Kazan when you see him on Monday. I'll say a prayer to give you some guidance in this matter.

[zjane]

Thank you Ellen!

I can't wait to meet Dr. Kazan and the week after, Dr. Leonetti.  We can meet up even if I don't get mine out @ Hinsdale!  It's 8 minutes from my house!

Did Hinsdale call you for pre-registration?  They called me today and I had to tell her to hold off until I see Dr. Leonetti on the 11th.

Hang in there we'll be on the other side of it soon!

[Ellenmn]

Thank you Ellen!

I can't wait to meet Dr. Kazan and the week after, Dr. Leonetti.  We can meet up even if I don't get mine out @ Hinsdale!  It's 8 minutes from my house!

Did Hinsdale call you for pre-registration?  They called me today and I had to tell her to hold off until I see Dr. Leonetti on the 11th.

Hang in there we'll be on the other side of it soon!

I have an appointment with them on June 8th for the testing that needs to be done but know one called for pre-registration unless they called my house. Maybe they firgured they take care of it all on Friday.

[lmurray69]

HI Jane , I am here to tell you i also had gamma knif in 05 it didnt work, mine grew, so in nov of 06 I had suregery at house in La.. I am still having a few infection problems that i cant seem to get cleared up. I go thurs the 7th of June for my first MRI sence surgery. I am very dizzy and have to resort to a walker now. I got a rollator one that i can set down when i need to ..I am also going to the ENT to have a ear test and and then see the ent.. My nerves in my left arm is bad so have test to do that too. It just seems I am a mess. But i truely believe that they got all the tumor and it is jsut a glitch in the infection in the ear and head that is the problem .I do wish you the best . you can touch my site and see what else i have posted.   Linda

[IAHeel]

Jane,

My goodness; I am sorry the radiosurgery did not work. I do not know the local docs, but my wife had Drs. Friedman and Schwartz at House. They are absolutely world class.

Good luck to you,

Fred

[ppearl214]

Jane,

These are the stories we dislike to hear........I'm sorry you are going through this and sounds like you are going to be in terrific hands.  Please have someone keep us updated on how things go during your surgery.... I send wellness huggles to you that this part of the journey will bring you the wellness you so deserve.

Phyl

[zjane]

Thanks again everyone for your encouraging words.  I'll keep ya-all posted with the surgeon decision!

[Carol]

ZJane and everyone,

I can really sympathize as I've just had my first MRI post-25 session FSR and have been told that my AN has grown from 1.3 to 1.5 cm. I'm on Ibuprofen for 2 weeks to try to reduce possible swelling as I have had a return of imbalance and my hearing has deteriorated further on the AN side. The prognosis: an MRI every 6 months for two years provided growth is not dramatic, surgery if growth continues; more FSR is not possible. I, too, feel quite philosophical about the failed FSR - I chose it over other options and I still feel it was worth a shot. I am, however, disappointed at the outcome and hope that it will be possible to avoid surgery.

Carol

[Mark]

Carol,

Please try not to be too disappointed in your first MRI results. While all of us wish for the darn thing to just shrink and go away,the goal is that it stops dead in it's tracks and grows no more. It is also very probable that your AN is still experiencing some post treatment swelling which either steroids or a general anti inflammatory such as Ibuprofen will certainly help. Everyone's AN reacts at different speeds to the radiation depending on at what stage of activity the cell replication is in as I understand it. AN's may average 2 mm a year in growth, but they rarely grow in a linear fashion. Those in a growth "spurt" at the time of treatment will react quicker than those in a dormant stage for example.

Also, in reading back through your first posts, you initially indicated that it was at 1.6 cm prior to treatment so I'm not clear how the base point for the 6 month MRI is 1.3 cm. I'm guessing that there were either different MRI machines or different doctors involved in a couple of your measurements which might account for the different sizes being given to you. My neurosurgeon always told me that there was a 2mm measurement range of error in all MRI machines. So, I guess I'm suggesting ( and hoping for you) that it is very possible that a) your AN has in fact not changed or b) it may be slightly bigger do to some natural swelling. MRI's are snapshots in time and I think the next one in six months will give a much more definitive picture of how you are responding to the treatment.

Best wishes

Mark