ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: mcrue on March 07, 2016, 01:30:10 am

Title: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on March 07, 2016, 01:30:10 am
I'm officially a "postie-toastie."

I had my Gamma Knife treatment on the morning of Thursday, March 3rd, 2016 at 9:30am.

My treatment plan lasted 52 minutes.

I was treated by Dr. Jason Sheehan at the University of Virginia in Charlottesville, Virginia. I believe they are the third largest Gamma Knife treatment center in the country.

Prior to my visit from Michigan, I was concerned I may not fit inside the MRI, CT ,and Gamma Knife machines due to my "Big & Tall" stature. I'm 6'3 tall and 375 pounds with a giant head and even bigger beer belly.

The good news is I did fit in all the machines; however, they couldn't "screw down" my face plate inside the CT scanner, so they decided to just scan me with the CT with my face plate on (but not "screwed down" and "in place" as they did in the Gamma Knife machine).

Obviously, I was really concerned this might affect the outcome and precision of my treatment.

I was able to have my head frame "screwed in" to the Gamma Knife machine.

Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Glupson on March 07, 2016, 02:35:12 am
Congrats!  :)

First few days are diffucult to go through, some headaches can occur. But, in 4-5 days, you should feel just as before!

Keep us informed!
All best,
G.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Janey on March 07, 2016, 03:59:49 pm
Hoping for great results.    I have an MRI next Monday to see where I stand with W & W, but think
I've decided on Gamma Knife if it comes to treatment.  Keep us all informed of your progress!
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: tdlight on March 08, 2016, 04:20:23 pm
Congratulations Mr. Toastie!  Hoping for a completely uneventful recovery for you.

I have heard the head frame may be a little more traumatic than some of the marketing literature would have you believe.  How was it?
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: rupert on March 08, 2016, 08:23:59 pm
Just a walk in the park mcrue.  ;D   I know you had some concerns.  Glad you reached a treatment decision.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on March 09, 2016, 03:32:06 am
Thank you blw, glupson, janey, tdlight, janey, and rupert.

It means a lot to me.

The head frame was the easiest part. After inserting an IV, they wheeled me to the "head frame room" where there must have been 10 people waiting for me. It felt like a pit stop at NASCAR. My head frame was affixed in less than 2 minutes.  I felt zero pain.

Apparently the IV gave me fluids and "conscious sedation", plus they apparently gave me 4 shots to the pin hole sites on my skull. I felt nothing when they put it on, and I felt nothing when they took it off. It was easier than I had anticipated. I had no headaches. I just felt very minor pressure feeling at the pin sites which is barely worth mentioning.

The anxiety the 48 hours prior to treatment was the worst part for me. Plus, when they couldn't screw my head in place for the CT scan machine I started "OCD'ing" about whether-or-not the treatment would be as effective.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Echo on March 09, 2016, 04:49:21 am
Congratulations Mcrue!
I found it a huge relief to have the treatment behind me and to start moving forward again.
All the best.

Cathie
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on March 09, 2016, 11:27:05 am
Congratulations Mcrue!
I found it a huge relief to have the treatment behind me and to start moving forward again.
All the best.

Cathie

Thank you.

I agree; however, once you become a "postie-toastie" you can't ever become "untoasted."

I hope everything is successful in the long run.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on March 09, 2016, 10:12:52 pm

Unfortunately, less than a week after Gamma Knife, my hearing has declined significantly from almost 100 speech recognition to only 40. That' a huge decline in just 5 days post Gamma Knife.

Also, as feared, my tinnitus is "rock star" loud again, most likely due to the new hearing loss.

Headache still persist 5 days post-op,  so they prescribed a "zpak" type package of 4mg methylprednisolone steroids, which taper off each day for 6 days ( no refills).

Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: tdlight on March 10, 2016, 12:04:57 am
Hang in there big guy...
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on March 10, 2016, 09:10:16 pm
I would expect a roller coaster like ride. If you read throughout the board you'll see all types of outcomes. Just stay even keel. I hav'nt really had much going on. I had a slight dull head ache a week ago for a few days, and my hearing fluctuates, but I think that is exacerbated by allergies. I think after radiation, at three months, things can really start to flare up. It's a long process with ups and downs. You had a larger tumor, so you may some wild swings. The UVA group was pretty responsive--I spent hours asking questions and they were very patient, answered everything. If you want to know if you made the right deciion, go to You tube and watch an AN removal by surgery.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Echo on March 14, 2016, 05:33:56 pm
Hi Mcrue,

You'll be okay, don't panic!  Blw is quite right when telling you to expect a roller coaster ride.  Some of us experience a bit of a ride while others don't, it's not uncommon.  I had a very uneventful first 3 months post GK.  From the 3 month point to 18 months I had lots of different things happen. The things that happened to me came and went. Sometimes I'd have just one issue and sometimes I'd have a few at the same time:

- Through numerous hearing tests over the first 2 years, my word discrimination has gone from 40% to 20% to 40% several times.  The good thing for me is that my hearing hasn't completely gone and my Phonak BiCros has been a life saver.

- I experienced many wonky head days and balance issues. I couldn't walk a straight line for close to 20 months.

- I developed ocular motor issues. When I walked, buildings and trees moved up and down and sideways. Items on grocery shelves blurred and jumped when trying to scan and find something.  (Driving was okay as long as I didn't go on the expressway or drive at night.)

- Extreme exhaustion set in and I learned to take naps at noon and get to bed early at night. Rest and more rest was the answer, trying to fight it just didn't work.

Between 18 - 24 months things started to settle down and disappear.  My 2 year anniversary was last September and since then I've basically been back to normal.  It's actually quite boring - no more bouncing buildings or wonky head days, and no more going to bed at 8 p.m.   I was fortunate, I was able to ride through the discomfort without taking anything more than ADVIL.  What you need to know is that the roller coaster ride can happen. It's usually the AN swelling and reacting to the radiation and it can do this several times over the first 2-3 years.  Hang in, and know that you will get through this.

Cathie.





Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on March 14, 2016, 06:21:55 pm

Thank you very much Tdlight, BLW and Echo. I appreciate your thoughtfulness and replies.

I think my headaches and increased tinnitus were caused my a very bad cold/flu I received just 4 days out of the hospital. Who knows if I picked this cold/flu up during my short stay in the hospital ward, the hotel, or the 4 airplanes I had to take; however, finally my headache is gone since I got some low-dose Vicodin and steroid (and Allegra-D), and my congestion is tapering down. I think in 4-or-5 days I should be back to normal.

Obviously from this point out, I'm going to think every little thing is caused by the treatment.

My main concern now is the nerves immediately behind my eyes feel like they're squinting at times. Like someone is stepping on them.  It's hard to describe, but it's obviously the nerves directly behind my eye balls. I hope this is also because of my recent flu and congestion.

I received the surgical report today, and found out Dr. Sheehan administered 12 "Gray" with a maximum of 24 "gray." Does this mean I had 24 "gray" of radiation at some point? My treatment only lasted 52 minutes.

Does it usually take 4 or 5 years before everything is "done," and what's going to happen is going to happen?

How soon before I know if it was successful or failed?

I still can't believe my hearing went down from nearly 100% word recognition to only 40% word recognition in less than a week post treatment.

I wish I had some clarity on whether-or-not the fact that my head-frame was unable to be screwed down in the CT machine (immediately prior to Gamma Knife) would have any effect on the outcome?

Anyways, I'm already missing the Charlottesville, Virginia local  "40 Mile IPA" beer  from Three Notch'd Brewery. It's the best draft beer I ever had (and I normally don't drink beer - only soda pop).

Thanks again for all your support and encouragement. Whether it's microsurgery or radiosurgery, all I had to do was sit there and then recover. It was the doctors who did all the work. Either way, the process is life-changing and makes you realize what really matters in life and place things into perspective.

If you visit Charlottesville, be sure to stay away from the Hampton Inn, as the water pressure was nearly non-existent haha.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on March 15, 2016, 05:52:44 am
I'm pretty sure the "squinting feeling" behind my eyes was caused from the Sinusitis from my cold. I'm the type of patient that needs constant reassurance when it comes to life changing events like brain surgery treatments.

As others have mentioned, I'm very fortunate to have been treated at one of the Centers of Excellence and by Dr. Sheehan at the University of Virginia. I feel it was well worth the extra money, time, and effort to make the trip to Virginia to be in some of the best and most experienced hands regarding Gamma Knife. Plus, he is well published and was highly recommended by others on this forum.

I told some of his staff I wish I could get him to be featured on the Dr. Oz show. I'm very fortunate and happy that I'm finally on "the other side" of the decision-making process after all these months.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on March 15, 2016, 11:29:06 am
I think at about 2 years they have a good idea of whether it worked or not. Part of the dying process can involve swelling of the tumor and that will push on nerves, with all sorts of symptoms. When they radiate it, they are hitting the nerves which will become irritated. I think the hearing nerve is more sensitive than the facial nerve, so your hearing can fluctuate and gradually decrease. The facial nerve should eventually get back to normal, but it innervates your whole side of your face, so you can have eye, mouth, cheek, and other areas that go crazy. From everything I've read, just think up and down. Good days and bad days, and eventually the good days will prevail. But you shouldn't be shocked by anything, even if the MRI comes back and says it got larger. That is typically swelling. The Grey units are the radiation does and it is calculated by the area of the tumor. I think they give it as a range.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Echo on March 15, 2016, 05:38:07 pm
Actually yes, it can take up to 5 years before you know if GK was completely successful.  My neurosurgeon explained to me that as these tumors are very slow growing they also die off very slowly after radiation.  Swelling can occur randomly for up to 24 months post treatment with symptoms related to swelling coming and going during that timeline.  It's not uncommon to not see any necrosis until years 3 to 5.  When I saw my neurosurgeon for my 2 year MRI review, everything was stable.  There had been a minor reduction in size, but the fact that everything was stable was in his opinion good news - I was heading in the right direction. 

Cathie
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on March 16, 2016, 04:10:15 am
Plus, Dr. Sheehan's nurse Greg is very charismatic and full of positive energy. He made the entire process entertaining and flow very smoothly. He is very committed and knowledgeable regarding everything Gamma, and answered all my questions. He helped me relax. As blw mentioned, they have a good team at UVA.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on March 16, 2016, 11:03:51 am
That guy was pretty cool. The nurse practioner was also very good. Very professional operation.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on April 15, 2016, 12:07:23 am
That guy was pretty cool. The nurse practioner was also very good. Very professional operation.

Dr. Sheehan is certainly one of the best.

It's just been over 6 weeks since my Gamma Knife treatment at UVA, and like others on this forum, I'm a bit concerned about what may or may not transpire during months 3 - 6 "post-op."

Currently, my main issues are fatigue, hearing loss, and some eye issues (which may-or-may not be from the radiation). As blw mentioned, I also don't regret my decision for one second to have GK treatment. Compared to open brain surgery, radiation treatment was a "no brainer" for me. I hope to see some "necrosis" of my tumor on my 6-month follow-up MRI.

Here is a nice video of Dr. Sheehan discussing his craft.

https://www.youtube.com/watch?v=tyCRJCTDN6w

Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on April 15, 2016, 12:24:00 pm
I think the eye issue is related to facial nerve irritation. That was one of my early symptoms, some droop and dry eye. I had a round of steroids and it went away, and hasn't returned. It's kind of like throwing a stink bomb into the phone company. All sorts of communications get affected, and it clears after the smoke is gone.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on April 16, 2016, 09:44:39 pm

I think the eye issue is related to facial nerve irritation. That was one of my early symptoms, some droop and dry eye. I had a round of steroids and it went away, and hasn't returned. It's kind of like throwing a stink bomb into the phone company. All sorts of communications get affected, and it clears after the smoke is gone.


May I ask which steroid and for how long? After my first week post-op, I was put on an extremely short course of low-dose methylprednisolone dose pack, which tapered down over just 5 days. I didn't notice any improvement with such a low dose.

My eye issues are slightly different, and they're very concerning. I'm not very articulate; however, I can best describe my eye issue as an "eye palsy." About 3-4 weeks post-op, I began feeling involuntary tremors which felt like they originated from the nerves/muscles directly deep in the back of my eyes. It's hard to explain, which combined with the symptoms, increases my anxiety.

It feels like my eyes cant decide between squinting or staying open. When I look in the mirror my eyes look perfectly normal and there are no visible signs of twitching, but I can feel the nerves/muscles in the back of my eyes pulsating or trembling out of control. This last for 10-15 seconds and repeats about every 4 minutes. My eyes are extremely dry as well, but I still have tears.  This is why I attributed my eye issues to allergies  in the beginning. Also, when I turn my head from side-to-side, left-to-right, I can hear the muscles moving! My eyes will make a sound similar to the "clicking" sound of arthritis from an arthritic  knee or elbow.

I've had to cope with a constant dull headache (1 out of 10) since treatment which usually responds to ibuprofen. I have low energy and a lot of fatigue. The increased hearing loss has contributed to increased tinnitus; however, my WIDEX hearing aid with Zen is still very effective in reducing the discomfort.

My balance has declined significantly, especially if I close my eyes while standing in the shower. I also notice while I'm walking that I constantly "sway over" to the right side. I have to make a big effort to re-align myself back to the middle. It's like I'm a walking drunk in public and is very embarrassing. This "disequilibrium" didn't exist prior to GK. Thank goodness I don't have Vertigo or Dizziness.

My depression and anxiety and OCD have increased post-GK.

My main concern is getting these involuntary eye muscle/nerve tremors (which aren't visible but I can definitely feel them) under control. They only happen when I' m awake and never when I'm sleeping.

I hope it's transient.

I'm not a doctor, and the only information I can find online is in regards to  "papilledema" and "hydrocephalus".

The worrier in me is concerned about Brain Necrosis or Glioblastoma, but I fully understand how minimal that risk is.

I have appointments scheduled next week with an Opthamologist and an Allergist/Immunologist, and Weight Watchers!. Perhaps I will call Dr. Sheehan's office as well and see what he thinks about my eye issues.


Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on April 18, 2016, 02:55:33 pm
Yes, ask Dr. Sheehan, but I have transient symptoms as well. Balance, some light headache,m but I also have bad allergies and they exacerbate everything. Since the nerves get hit, they can get inflammed, and as the tumor starts to die, they release proteins that also can mess things up. I think the rule is expect anything, symptoms will come and go, but over two years they will decrease and go away if the radiation worked. I didn't request steroids, though I think they gave me some at the time of treatment, not prescription.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on April 22, 2016, 02:29:52 pm

As promised, this week I went to see a professional Immunologist/Allergist as well as an Opthamologist (eye doctor/surgeon).

The allergy doctor says my (self diagnosed) "eye palsy" has nothing to do with allergies. I can rule out allergies.

My eye doctor claims the condition that I was so concerned about is officially called: "BLEPHAROSPASM."

I will call Dr. Sheehan's office next week (after the weekend) to confirm this diagnosis, as perhaps Dr. Sheehan might think it's something else. I'm also wondering if i should go on steroids? The eye doctor simply told me to take artificial tears and sent me home. That sucks! I was hoping for a more permanent fix.

I really nailed the description in my earlier post (how symptoms got worse during the day and is basically non-existent during sleep).

My eye issues feature symptoms occurring intermittently during the day, especially while watching television (computer is just fine though), I will feel a "sustained rapid involuntary muscle nerve spasms/tremor/trembling" deep directly behind both eyes. It last about 10-15 seconds and I can hear the trembling in my ears. This repeats itself several times throughout the day.

It may or may not be a side effect of the GK treatment (but it didn't exist prior to treatment).

My eyes look perfectly normal in the mirror while these tremors are occurring. Trust me when I tell you it's a very alarming feeling. I don't feel my symptoms have anything to do with my eyelids, so I'm a bit concerned if this is the proper diagnosis.

I pray this is transient and will go away.  Anyhow, I cut-and-paste some info below.



http://www.dystonia.org.uk/index.php/professional-research/types-of-dystonia/blepharospasm


and


http://www.klapperplasticsurgery.com/pagesroot/Pages/Problem.aspx?p=Blepharospasm-Hemifacial-Spasm




Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on April 22, 2016, 03:07:07 pm
Mcrue
Sorry to hear about your eye problem. These kinds of problems that are caused by radiation are horrible. I didn't have that problem, but after my very low dose of radioactive iodine for thyroid cancer, my eyes felt dry and were irritated, kind of stinging. Also I had red patches on the roof of my mouth for a few days. Radiation is very nasty and I can only imagine how scary this is to deal with. I know my type of radiation was very different from your treatment, but it's nasty stuff. I did well, but some folks suffer a lot. Effects can be delayed too. Hang in there.
My only wish is that all doctors were forthcoming about the risks so patients could truly make informed decisions. That's all I ask for.


Thank you for the kind words Cityview.

As you know, I am entering the dreaded 2-6 month post-treatment period, where symptoms and side effects from radiation usually manifest at their peak levels.

I'm hoping this is "transient".  A word which was mentioned often prior to treatment regarding possible side effects.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on April 26, 2016, 05:20:49 am
I think the eye issue is related to facial nerve irritation. That was one of my early symptoms, some droop and dry eye.


Is "eye droop" the same as "bags under the eyes"?

I have puffiness with large bags under the eyes, as well as dry eyes and a "bulging" eye appearance. Not to mention my recently diagnosed Blepharospasms.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on April 27, 2016, 12:56:20 pm
Don't think so. The eye droop is probably related to closure of the eye, which is a facial nerve issue. Bags under the eyes are completely different.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on April 27, 2016, 11:16:34 pm

Thanks blw. You're coming up on your 3 or 4 month mark. I hope all is well.

Here is a good website and video regarding a diagnosis of Blepharospasm:


https://www.blepharospasm.org/dry-eye-video.html


Apparently, blepharospasm may-or-may not have been caused by my acoustic neuroma or the radiation treatment. For all we know it may have manifested on its own. These things are unclear (such as with an acoustic neuroma) and there is no known cause.

When I searched this forum for "blepharospasm" it only revealed limited cases, mostly from microsurgery.
 
If the diagnosis is correct, I would say I'm at the very beginning stages. Thankfully the symptoms are transient and usually only occur while watching television.

So far so good as I approach my 2 month mark. Going to my (second) local Michigan ANA support group meeting this Sunday, and then Montreal next week!
 
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on April 30, 2016, 09:31:30 pm
I should probably be getting the call to make to MRI appointment.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on July 03, 2016, 06:45:05 pm

I'm headed for my first follow-up MRI on July 15th. It will be 4-and-a-half months post-op (Gamma Knife).

I also plan to have another MRI around December 15th, so I can determine whether-or-not to retain my current (expensive) insurance into the following year (2017).

The good news is my "eye nerve" issues have greatly improved. I don't think "blepharospasm" was the correct diagnosis by the ophthalmologist (who saw me for less than 60 seconds). The eye issues I have been experiencing have reduced 95% and are almost non-existent at this time. Yay!

Naturally, I have a lot of anxiety regarding the results of my upcoming MRI. I believe most people may show some swelling at 4.5 months.

My main side effects post-op have been constant dull headaches. significant fatigue, noticeable short-term memory loss, increased hearing loss (100% word recognition reduced to 25%), constant tinnitus (same as before GK), the eye nerve issue, and some minor cognitive issues.

I was informed that my major depression and sleep apnea might have a bigger role in the side effects I'm experiencing; however, the Aleve and Ibuprofen do very little to alleviate my headaches. 

I know in 2-to-3 years it will all have been worth it. Plus, I can still use my WIDEX "Zen" hearing aid to successfully mask most of the tinnitus.

I need to investigate the meds available for fatigue and my very noticeable short-term memory loss.

Currently, I'm very concerned about 4 issues: hydrocephalus and papilledema, as well as tumor swelling and brain necrosis. I'm hoping the follow-up MRI may shed some light on these fears. ‏‏

Finally, I know what's done is done, but I just can't seem to stop obsessing over the fact they weren't able to screw down my head frame into the CT scan (which is performed immediately prior to the Gamma Knife treatment).

They literally just scanned me "raw" without screwing/bolting down my head frame (as it is normally screwed down in 99% of cases).  In my mind, there has to be a good reason they normally screw the head frame down for patients.....as opposed to not doing so especially right before a GK brain surgery. 

So yeah, I know I'm the paranoid type, but it is causing me some concern all these months later that they scanned me "raw" (because I wasn't able to fit due to my giant size).

I will post a follow-up later this month with hopefully encouraging results from my MRI.

I am so glad to have taken the advice of the many world-renowned neurosurgeons I consulted with and move forward with GK. I consider it one of the best decisions of my life to have followed the Gamma Knife route.

Dr. Sheehan and his staff at University of Virginia are top-notch.
 
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Janey on July 04, 2016, 10:02:25 am
Hoping for a very good report!
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on July 04, 2016, 10:08:57 pm
Glad the eye thing resolved McCrue. I'm in for my 6 month MRI in a couple weeks. Some symptoms have kicked up the last month. No big deal. I expected them. Compared to when I became symptomatic, this is easy. All my symptoms appeared suddenly over a two week period--balance, dry eye, facial droop, massive localized headache, and each resolved.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on July 05, 2016, 01:43:11 am
Thanks Janey and BLW.

One of their favorite words at UVA was the word "transient," as most symptoms from Gamma Knife are transient/temporary during the first two-to-three years post=op.

My fatigue kicked in within the first week post-op; however, my eye issues stopped after the first 3 months. The headache and fatigue are most prevalent, along with the constant tinnitus and declining hearing.

Glad to hear your symptoms resolved. Keep us updated on your follow-up MRI.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on July 05, 2016, 11:51:11 am
Yup. Best not to get anxious until the doctors give you a reason to be.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on July 06, 2016, 10:03:40 pm
LOL! I just reread your description of when they put the head frame on and that is exactly as I describe it--pit stop at Indy. They had a room ful of people, bunch of quick shots, IV, and they bolt that thing on in seconds. Pretty funny. I didn't get enough sedative so I was talking the whole time and remembered everything.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on July 11, 2016, 02:18:42 am
LOL! I just reread your description of when they put the head frame on and that is exactly as I describe it--pit stop at Indy. They had a room ful of people, bunch of quick shots, IV, and they bolt that thing on in seconds. Pretty funny. I didn't get enough sedative so I was talking the whole time and remembered everything.

Yes, I borrowed your words. A pit-stop is exactly how it felt to have the mask placed on my skull. I was also awake the entire time and talking as well. I remembered everything too. I think it's designed that way.

On other fronts, I would do anything to stop my constant tinnitus. The reality that I have to live with this tormenting condition for the rest of my entire life is just awful.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on July 11, 2016, 03:55:34 am
Yup. Best not to get anxious until the doctors give you a reason to be.

I think a lot of patients with AN's (myself included) suffer from "reassurance seeking" and wanting to make sure we are making the absolute right decision for our unique circumstances, etc.

http://ocdla.com/reassurance-seeking-ocd-anxiety-1952

I, for one, like to know all the facts. There is no such thing (for me) as too much information. While others like to have things "sugar-coated" and may like hear fluff like "everything will be okay." I want to know worse case scenarios, etc.

For example, at my last local AN support group i was informing this new member that Dr. Chang advised me that 1 out of every 500 people who have surgery will die on the table, compared to 1 out of 20,000 who may get cancer from radiation treatment.

Needless-to-say, some of the "everything will be okay" crowd were very unhappy that I mentioned these facts/statistics (from Stanford's Dr Chang) to our new member who was swaying back-and-forth between microsurgery or radiation treatment.

In my opinion, we don't attend group for fluff.  We attend group for information to make educated decisions.

Anyways, I digress.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on July 11, 2016, 10:20:59 pm
Oh yeah--that was my bigest focus, what happens if it fails? For radiation, you can repeat or have surgery. My hope is that I get 10 years or so before it fails, if it does. That's a lifetime in medical reasearch, so my thinking is they could reradiate with even newer more accurate technology. As for as catatrophies, my exact reason for avoiding surgery. 1) It is major surgery of the brain type, and all the problems that can go wrong with major surgery, 2) If they damage the facial nerve, you are in a whole new world of problems. 3) Surprisingly, surgery can fail to remove all the tumor and you get regrowth.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: UpstateNY on July 12, 2016, 07:17:25 am
Quote
For example, at my last local AN support group i was informing this new member that Dr. Chang advised me that 1 out of every 500 people who have surgery will die on the table, compared to 1 out of 20,000 who may get cancer from radiation treatment.

Sorry Mcrue, but I have to jump in here because 1 in 500 people dying on the table from surgery is not a real number and would certainly concern me as well.  Such an outcome is significantly based on the personal medical history and physical condition of the patient.  A patient going into surgery with a poor medical history and condition may have the odds of 1 in 500.  However, a person with a good medical history and condition could be more like 1 in 100,000.  There are risk calculators available if a person wants to find out their odds that take into consideration their medical history and physical condition.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on July 12, 2016, 01:32:27 pm
Actually, older studies say it is higher--about 1%, more recent studies have it at about 2.5 per 500 (0.5%). I think that number can be influenced by a lot of factors. Many are patient specific (co morbidities), which could cause the odds to go up or down. Some are not--infection, competency of the medical team, length of surgery (some of these operations can be crazy long), type of surgery, quality of the hospital, quality of the aftercare (dying on the table is one thing, but fatal complications can arise once you wake up). In any event, this is major surgery and it has identifiable risks that are certainly real.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: UpstateNY on July 12, 2016, 09:23:11 pm
I would certainly agree that older studies would have higher rates and all of the factors you mention do come into play.  Many years ago, very few people made it through surgery.  However, surgical techniques have significantly improved through the years just as radiosurgery accuracy has improved.

The top surgeons I spoke with had zero deaths on the operating table and they have performed thousands of surgeries combined.

In general, I believe most surgical fatalities for any type of procedure arise from complications with anesthesia, which is why the medical history and physical condition play important roles.

Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on July 12, 2016, 10:12:11 pm
Quote
For example, at my last local AN support group i was informing this new member that Dr. Chang advised me that 1 out of every 500 people who have surgery will die on the table, compared to 1 out of 20,000 who may get cancer from radiation treatment.

Sorry Mcrue, but I have to jump in here because 1 in 500 people dying on the table from surgery is not a real number and would certainly concern me as well.  Such an outcome is significantly based on the personal medical history and physical condition of the patient.  A patient going into surgery with a poor medical history and condition may have the odds of 1 in 500.  However, a person with a good medical history and condition could be more like 1 in 100,000.  There are risk calculators available if a person wants to find out their odds that take into consideration their medical history and physical condition.

Sorry UpstateNY, you can chime in all you like; however,  this is the statistic Stanford-educated Dr. Chang freely gives out to several of his patients (not just to me) in an attempt to put into perspective the risk regarding developing cancer from radiation as opposed to dying on the operating table.

Dr. Chang is a highly respected, world-renowned surgeon considered at the top of his field. It's a sobering statistic in my view.

One of the things they always teach you in Journalism school is to cite your sources and back-up your facts. If you have any issues with the statistic, please contact Dr. Chang at Stanford for clarification.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on July 12, 2016, 10:13:43 pm
Oh yeah--that was my bigest focus, what happens if it fails? For radiation, you can repeat or have surgery. My hope is that I get 10 years or so before it fails, if it does. That's a lifetime in medical reasearch, so my thinking is they could reradiate with even newer more accurate technology. As for as catatrophies, my exact reason for avoiding surgery. 1) It is major surgery of the brain type, and all the problems that can go wrong with major surgery, 2) If they damage the facial nerve, you are in a whole new world of problems. 3) Surprisingly, surgery can fail to remove all the tumor and you get regrowth.

BLW, I agree. I 'm very happy to avoid brain surgery at all costs. As you mentioned,  1) It is major surgery of the brain type, and all the problems that can go wrong with major surgery, 2) If they damage the facial nerve, you are in a whole new world of problems. 3) Surprisingly, surgery can fail to remove all the tumor and you get regrowth.

Good luck with your upcoming MRI.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on July 12, 2016, 10:18:51 pm

In general, I believe most surgical fatalities for any type of procedure arise from complications with anesthesia, which is why the medical history and physical condition play important roles.

Considering 2/3 of the country are obese, I think the stat is accurate.
I didn't pull the stat out of a hat.
I highly doubt Dr. Chang would mislead his patients.

I also knew someone who was in excellent health with a great team and didn't make it out of surgery. I think PaulW also recalled a situation similar.

To suggest brain surgery in the year 2016 is safer than radiation treatment for Acoustic Neuroma citing fears of developing radiation-induced cancer just isn't accurate.

The entire reason for citing the stat is to put patients fears/concerns into proper perspective.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: UpstateNY on July 12, 2016, 11:21:30 pm
mcrue, my point is that the stats you have from Dr. Chang are much different than those from other physicians and centers of excellence (which they openly share).  Maybe Stanford just has worse surgical results than other facilities because they are biased towards Cyberknife for most patients and only perform microsurgery on the largest and most difficult ANs.  Whatever the answer is, it is important that those choosing a procedure are not skewed by the results from one physician, but look at the results from the facility/physician they are considering treatment from.

I'm not advocating any particular procedure because both surgery and radiation have risks and pros/cons, just looking to clarify the data.   Of course, we are all also welcome to our own opinion, but I am more a data driven person.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on July 12, 2016, 11:58:26 pm
mcrue, my point is that the stats you have from Dr. Chang are much different than those from other physicians and centers of excellence (which they openly share).  Maybe Stanford just has worse surgical results than other facilities because they are biased towards Cyberknife for most patients and only perform microsurgery on the largest and most difficult ANs.  Whatever the answer is, it is important that those choosing a procedure are not skewed by the results from one physician, but look at the results from the facility/physician they are considering treatment from.

I'm not advocating any particular procedure because both surgery and radiation have risks and pros/cons, just looking to clarify the data.   Of course, we are all also welcome to our own opinion, but I am more a data driven person.


UpstateNY, I am a fact-driven person as well, and as you know statistics in general can be manipulated/swayed in many different ways to favor almost any result. 

Stanford is known for its world-renowned higher education and is one of the centers of excellence for treating acoustic neuromas. I highly doubt they have lower surgical results, as you implied, compared to other institutions.

As you know, many people have even accused the House Clinic to be biased towards microsurgery, similar as you have suggested Dr. Chang is in favor towards Cyber knife.

To make your point, Dr. Schwartz said he has only lost 1 person in his entire career from an untreated blood clot several weeks post-op. So yes, the team makes a huge difference. But that doesn't take away from the stat Dr. Chang provided that on average, 1 in 500 die on the table. Not at House. Not at Stanford. But on average.

It is important for those choosing a procedure to absorb the facts and statistics regarding AN's as a whole.

As I mentioned earlier, the bottom line is the stat was provided to give perspective to that patient who is fearful of later developing radiation-induced cancer from Cyber Knife or Gamma Knife, so they may be persuaded to favor radiation treatment.

I don't think the stat should be wholly dismissed just because it comes from a radiation oncologist. As you said, everyone is entitled and free to have their own opinions.

Again, if anyone wants clarity on the statistic provided by Dr. Chang, I advise them to contact Dr. Chang.

Best wishes.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: PaulW on July 13, 2016, 05:12:52 am
Here is a paper showing the death rates are 1:200
http://www.ncbi.nlm.nih.gov/pubmed/21856684

My education of acoustic neuromas came from a friend who died 3 weeks after surgery.
She was fit, 34 years old not overweight and in good health.
This happenned 6 years before I was diagnosed 2004..
Her surgery was 12.5 hours for a 2cm tumour.
She died from acute liver failure caused by an allergic reaction to the anaesthetic..

There are also significant numbers of people that have died from antibiotic resistant golden staph infections and meningitis. We have all heard about CSF leaks through our nose.. It doesn't take much for the golden staph virus to enter the brain via the Leak. The difference between one surgeon or another is pretty frightening. Disabling headaches, brain damage, permanant disability, loss of use of limbs, speech..
It all happens. There are doctors out there that have 2% death rates and many times that are permanantly disabled.. It's why the ANA advocates centres of excellence and choosing an experienced team.
It's not just the old, sick, and people with large tumours that have issues.
I have met a few people with very small tumours who have had debilitating problems after surgery.
If you have surgery you roll the dice.. The odds are far better with an experienced team.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on July 13, 2016, 08:51:53 am
I agree if one is getting surgery with Dr. Schwartz (or comparable), then that statistic from Dr. Chang is pretty much irrelevant and meaningless. As everyone concurs, it depends on the team of doctors and facility....but the caveat is not everyone can afford to travel to a so-called "center of excellence."

In that case, this is where Dr. Chang's stat would become more relevant in my opinion.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: UpstateNY on July 13, 2016, 09:36:17 pm
mcrue and PaulW, I appreciate the lively discussion and can certainly sense the passion in your replies.  I also believe we are all saying the same thing.  Statistics differ from place to place, so the info to pass on to those in the decision phase is to obtain the stats from the facility and physician they are being treated by.  Also, as we all have stated, Centers of Excellence or high volume centers provide the best outcomes no matter if one is considering radiation or microsurgery.

PaulW, I am very sorry to hear about your friend.  The paper you provided the link to is very interesting, but did you realize it used an inpatient sample from 1994-2003 for the analysis?  That is 13-22 years ago.  Just as radiation treatment has become more accurate over the years, surgical techniques have also significantly improved over the years. 

All of the different stats and percentages being thrown around made my head spin when determining a treatment, which is why I focused on the stats and info from the physicians I planned to be treated by.  They are required by law to provide this. 

Regarding Dr. Chang, I had also consulted with him along with at least 10 other physicians.  I believe he is extremely knowledgeable and considered the top Cyber Knife physician in the country.  My comment meant that Cyber Knife is what he primarily recommends and performs, and only suggests surgery to patients he believes are not candidates for Cyber Knife.  In my mind that is biased, but there is nothing wrong with that since all physicians favor the procedure they perform most.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on July 21, 2016, 11:36:53 am
Well apparently my 4 and 1/2 month post Gamma Knife "follow-up" MRI indicated my tumor has swelled 2mm according to my local ENT.

It now measures 20mm x 11mm + 10mm extension.

I will speak with Dr. Sheehan hopefully in a few days.

My new and current symptoms since Gamma Knife radiosurgery are:

profound short-term memory loss
chronic fatigue
loss of energy
depression
lethargy
persistent dull headache
significant loss of hearing - word recognition reduced from 100% to only  10% in just 4 months
constant tinnitus – same as prior to treatment
blepharospasm – feels like nerves deep behind my eyes will tremor involuntarily for several seconds
(the blepharospasms have completely stopped after the first 3 months post-GK)

As long as I can still hear some sound in my AN ear, then I can still use my WIDEX hearing aid with "Zen feature" to help mask the constant tinnitus. Once my hearing is completely gone in my AN ear, God help me with treating my tinnitus.

That's a pretty breathtaking and dramatic decline in hearing in just 4 short months post-GK (from 100% to 10% word recognition). I thought I would have at least a couple years of decent hearing post-treatment, especially since they went out of their way to avoid the cochlea, etc.

But even Dr .Schwartz told me I would likely lose all my hearing in my AN ear within 10 years regardless of the treatment method I chose or watch/wait.

There are no signs of:

hydrocephalus
papilledema
tumor necrosis
brain necrosis
no facial paralysis
no balance issues

I'm hoping my short-term memory loss is one of those "TRANSIENT" symptoms, but the hearing loss is likely permanent.

My fears now are:

fear of treatment failure
when will we know if treatment was successful
tinnitus management after hearing is completely lost in AN ear 
did we hit the mark with the Gamma Knife or have a geographic miss?

The technicians weren’t able to “pin down” my head frame in the CT scan immediately prior to performing Gamma Knife because of my size. As you know, the headframe is typically “pinned down” in most cases for a reason.  In my case, the technician simply ran me through the machine “raw” without pinning down my headframe.

In any event, I have my “9 month post-op” MRI scheduled in December.Those results will determine if I should keep my current (expensive) PPO for another year and possible re-treatment, or to switch back to a more affordable HMO for the following year.

So basically the near total hearing loss on my AN ear, the never-ending constant tinnitus, the noticeable lethargy, and the profound memory loss are my "new normal" just 4 months post-Gamma Knife.

Were keeping our fingers crossed the treatment was successful and the tinnitus remains manageable. I don't have much hope regarding the memory loss and chronic fatigue.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: researcher on July 21, 2016, 12:34:19 pm
So sorry you are having so many symptoms/complications. Once the procedure is over we have to live with our ever-changing list of problems. Hopefully your tumor will shrink soon and your symptoms will get better. Take care.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on July 21, 2016, 03:02:46 pm
I don't know that a size increase is a bad thing. Lundsford has said no, early on. I am experiencing balance issues now and decreased hearing. My word recognition was also 100%, but I'm sure it is way down now. Look at it this way. It is unlikely that radiation would stimulate growth. The most likely explanation is what is frequently observed. It is swelling, pushing on stuff, and triggering symptoms.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on July 25, 2016, 02:28:47 pm
I wonder if an earlier course of steroids would have prevented the dramatic loss of hearing?
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on August 02, 2016, 10:21:19 pm
U.S. News Ranks UVA No. 1 Hospital in Virginia, Honors 8 Specialties

https://news.virginia.edu/content/us-news-ranks-uva-no-1-hospital-virginia-honors-8-specialties?utm_source=UFacebook&utm_medium=social&utm_campaign=news
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on August 02, 2016, 10:32:58 pm
Dr. Sheehan indicated my tumor "shows some slight and likely transient expansion, but a decrease in the central contrast enhancement within the tumor. This may represent a small post-treatment effect."

He would like another MRI in just 3 months.



Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on August 14, 2016, 06:02:38 am
Unfortunately, my Blepharospasms (eye nerve condition post Gamma Knife) have returned.

I am 5-and-a-half months post-Gamma Knife. I had the bed sheets over my head and could feel the eye twitches/spasms move the sheets rather authoritatively. It was very alarming.

Hopefully this too shall pass.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on August 24, 2016, 02:03:48 pm
Just got my 6 month MRI, waiting for results. 3T large bore. Actually not too claustrophobic.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on August 24, 2016, 02:31:27 pm
That's fantastic  BLW. I'm sending good vibes your way!

Hopefully you will have a "decrease in the central contrast enhancement within the tumor. This may represent a small post-treatment effect."

Keeping you in my thoughts for a successful result.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on September 23, 2016, 04:17:41 am
Just got my 6 month MRI, waiting for results. 3T large bore. Actually not too claustrophobic.

Blw,

It's been a month. I hope you're doing well.
 
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on September 23, 2016, 08:29:26 am
Put them in the mail this week. It is a nightmare getting and transferring medical records. Does he email results back or send by regular mail?
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on September 23, 2016, 09:40:17 am
Hello Blw,

I usually have the MRI place make me 3 (free) copies of my MRI CD before I leave their facility as soon as my new MRI is completed. This way I can mail the new MRI CD straight to Dr. Sheehan's office via USPS Priority Mail on the same day!

I usually will have the envelope already pre-addressed, so I just have to pop in the CD and pay for postage at the post office.

Dr. Sheehan will send a letter via regular USPS mail with his review and analysis of the new results.

I did receive a phone call from the nurse practitioner about 10 days prior to receiving the letter from Dr. Sheehan. This was because they noticed an issue with my MRI results (swelling of the brain 2cm) and wanted to put me on a very short-term mild course of steroids as well as schedule an earlier follow-up MRI in 3 months rather than 6 months.

I would say from the time I mailed my CD with Priority Mail (on the same day of the MRI) to the time I received Dr. Sheehan's letter, it was about 3 weeks that had transpired. It might be longer if you send via regular mail. I just send my MRI and not any medical records.

Anyways, I have an upcoming follow-up MRI on October 13.
I'm hoping to receive good results before Halloween.

I know we're in good hands with Dr. Sheehan and his fantastic world class staff at the prestigious UVA. Greg the Gamma Knife nurse is superb.

Looking forward to hearing your good results in a few weeks.

Best wishes.

Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on September 23, 2016, 02:12:22 pm
Yeah, that's what I did. Just got the CDs and took care of it myself. My symptoms seem to have improved a little this week. I hope things progress well for you.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on September 28, 2016, 11:48:17 am
Results came back. Tumor is enlarged with a central area of darkening. On schedule--swelling and necrosis. I felt the swelling last month as my balance was off but feel better now. Final size was 1.1 cm, so it was on the small size. I had an appointment with my ENT today, MD/PhD, so he was quite knowledgeable. The shape of it has an extension growing towards the cochlea, so that is not great. Don't know how much radiation the cochlea got, but so far so good. Re image in 6 months.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on September 29, 2016, 08:25:46 am
Sounds like good news BLW. Swelling and necrosis in the first 6 months.

As you know, they say the first 2 years are the roughest.

Dr. Sheehan said he made special precautions to try to minimize the radiation to my cochlea. I assume he does this with his AN patients.

It would be interesting to read what Dr. Sheehan has to say after he reviews your MRI.

Anyhow, I would be thrilled with the results, especially the central area of darkening. This means they hit the mark!

My side effects are also minimal, and transient. For the most part, the tinnitus I had pre-Gamma Knife still persist. I also have minimal dull headache and fatigue. My eye nerve spasms have subsided and are virtually gone. Short-term memory loss is still evident. The major hit for me was a hearing loss from 100% to 10% in a matter of weeks after GK. I don't have much hope it will ever return.

1. Severe tinnitus (same as pre-GK)
2. 90% hearing loss (90% decline post-GK, zero word recognition)
3. Significant fatigue / low energy.
4. Significant short term memory loss
5. Nerve spasms in back of eye balls (transient).
6. Constant dull headache
7. Minor balance issues while showering when closing my eyes.
 


Keep in mind, I'm 42, 6"3 tall, and 380 pounds. My side effects may be the result of my morbid obesity.

I'm feeling pretty well after just 7 months post-Gamma Knife, and I'm glad I traveled to Virginia and chose Gamma Knife. I have my second follow-up MRI on October 13th.

I hope to continue reading your good news BLW.

All the best.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on September 29, 2016, 05:08:52 pm
Thanks. My neurotologist runs his own clinic and is an MD/PhD. He works with my neurosurgen consultant, frequent teaming up for surgery, down here who trained with Sheehan, so they are all good doctors. That my would my first suggestion to anyone, decide who the best doctors are, and use them. My MRI image was striking in that the dark area was easy to see without it even getting pointed out. My symptoms are also starting to quiet down. The research and knowing what to expect is an asset.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Citiview on September 29, 2016, 05:28:37 pm
Blw
Congrats on your necrosis. I credit you and a few others for making me more openminded to radiation. I have no idea what I will ever do if needed, but I appreciate the discussions about the topic. I would hate to think that I would be so closed minded as to never consider it as an option for a small tumor.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on September 29, 2016, 08:54:12 pm
Yeah, full disclosure, I'm biased against surgery and had radiation. Having said that, I would be even more inclined than ever to avoid surgery having read of so many complications here. At the end of the day, I think the deciding factor is to never have to treat it again. When I started out, that was my main concern about radiation--easy outpatient, little side effects, and the cancer risk is really extremely low, but the failure rate is 5-15%. But there seem to be so many posts about doctors leaving some tumor behind, which to me, takes the recurrence rate as an advantage off the table because surgery can fail to stabilize the tumor as well because they may not get it all. For me, I had facial nerve involvement so surgery wasn't much of an option, and major surgery scares the crap out of me anyway. Besides that, most of the outcomes are pretty similar, success rates, etc.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Cheryl R on October 01, 2016, 06:54:52 pm
One reads of the outcomes people have on here because they are the ones who stay on here looking for others with the same outcomes.     Most of the ones who do well do not stay on and are back to the regular lives.     I have come across many ANers over 15 yrs now and the ones I have met in person have done well.      I am a 3 tumor patient due to having found to be NF2 over time.      Every person varies here due to the tumor location, size, what damage it has done to nerves and what compensation the brain and body has already compensated for.     Also the surgeon or neurotologist with much much experience.           This does not mean there are many who do not end up with SSD or some balance issues only under certain conditions.           The facial issues do not happen as often people think and are often temporary.                I have been thru all of this and hate to see how some think there are terrible outcomes with all who have AN surgery.          It really does vary with each case.                          Cheryl R
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on October 01, 2016, 08:00:49 pm
I have come across many ANers over 15 yrs now and the ones I have met in person have done well. 
   

In 15 years, every single AN patient you've met has "done well?"
There were none with facial paralysis?
There were none suffering from the many sub-categories listed on this forum?


I have been thru all of this and hate to see how some think there are terrible outcomes with all who have AN surgery. 

I think one would be hard pressed to find any forum member who ever claimed "all who have AN surgery have terrible outcomes." 

I've never read or seen that anywhere on the forum.

I think BLW was merely saying why place yourself at risk if you don't have to; however, i will let him speak for himself.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on October 01, 2016, 08:04:14 pm
Yeah, full disclosure, I'm biased against surgery and had radiation. Having said that, I would be even more inclined than ever to avoid surgery having read of so many complications here. At the end of the day, I think the deciding factor is to never have to treat it again. When I started out, that was my main concern about radiation--easy outpatient, little side effects, and the cancer risk is really extremely low, but the failure rate is 5-15%. But there seem to be so many posts about doctors leaving some tumor behind, which to me, takes the recurrence rate as an advantage off the table because surgery can fail to stabilize the tumor as well because they may not get it all. For me, I had facial nerve involvement so surgery wasn't much of an option, and major surgery scares the crap out of me anyway. Besides that, most of the outcomes are pretty similar, success rates, etc.

Blw,

Eloquently said.

My thoughts exactly.

You think people would be happy we got to treat our AN's with radiation and avoid brain surgery.

Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on October 01, 2016, 08:40:19 pm
Although I recognize as another poster noted that there are many variables that effect choice, most of my reading of the literature were reviews of case studies with hundreds of patients. Interestingly, the outcomes, defined as tumor control, for surgery or radiation were very very similar. That makes radiation an easy choice to me because it is so much less invasive. The one mitigating factor is failure. If radiation fails, surgery is more complicated, though you may be able to re-radiate, and a good surgeon can still perform successful surgery. In contrast, if surgery fails, you still have the radiation card to play. However, since both have success rates around 90%, there just seemed to me to be so much more that could go wrong with surgery, and outpatient treatment vs 5 days in the hospital with a couple in the ICU was a no brainer. I actually think that in 10-20 years surgery won't be done due to more advances in radiation.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Cheryl R on October 01, 2016, 08:53:57 pm
I should have also said met in person as have met several over the years who also have been to the Univ of Iowa as  I have and talked outside of this forum  in person.   I also have been to 5 of the AN symposiums which are no longer being held around the country.      I have come across people on here who have permanent severe issues.         The symposium did have people who did not appear to have severe issues but yes may have more than appeared.       I was thinking of the quote on here that of Blw stated of having read so many complications on here.              I wanted to get across that not all surgeries do end up with severe complications.        I myself have had a facial neuroma with the nerve severed and a nerve graft done at the same time so have been thru facial paralysis with much improvement.     Most facial issues are temporary unless the nerve was severed or badly damaged by the tumor.                  I have read on here and on the AN facebook pages  of those who do seem to feel any surgery gives bad outcomes.      No I do not remember names.               The surgery or radiation or wait and watch is a personal choice.        What ones personality is like plays a part in what treatment they may choose.              Ahead of treatment is a very scary time as one does not know always which is the best choice.          I have come across in person some ANers with some facial issues long term which are more felt by them than seen by others.           Yes I have come across a couple people in person with severe facial issues and both had their surgeries many years ago.    20 plus yrs.               There was a married couple who were on the ANA board who both had facial issues.  I think this was in 2003.                            Anyway I wanted to get across that not all surgeries are going to have severe permanent issues.                   Cheryl R               
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on October 02, 2016, 12:44:24 am
I think the vast majority are successful, otherwise they wouldn't be performed. But I think the number of complications just because it is major surgery is something like 1-2%. And if you add the neuroma specific complications, it is a little higher. Still very safe. However, complications from radiation are much smaller. Still, the risk is low for both procedures and my choice was based on not wanting to have surgery and the increased risk for facial nerve problems, which would have happened in my specific case. Just couldn't risk it.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Cheryl R on October 02, 2016, 02:40:50 am
I have sounded more and more like a ditzy female on how I have not written well exactly what I was trying to get across.       It also came to me that what one views as complications with AN surgery is another persons possible outcomes.     So I can say the people I have come across in person did not have complications but yes some have had some of the possible outcomes but were doing well in life.                       Cheryl R
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on October 02, 2016, 03:24:38 am
I think BLW and I were merely saying why place yourself at risk for those "possible outcomes" if you don't have to; however, i will let him speak for himself.

All the best.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: alabamajane on October 02, 2016, 07:00:48 am
Cheryl, I have to agree with you that any AN patient has to make their treatment choice based on their own "gut" feelings which no one else can determine for them. Sometimes this is the most difficult part of diagnosis for the patient as we are accustomed to doctors "telling " us what treatment we need for other symptoms.

I don't think, in my opinion, it is incumbent on us to tell others what the "likely, statistic" results of one treatment over another is going to be,  or what "studies show,,,,," there is always a bias in this type of response as some have said. They are biased one way or another.   The pretreatment patient should keep that bias in mind when deciding. No one can predict how any treatment or w& w will turn out. Especially us as we are NOT doctors and most have no medical training ( except you are a retired nurse!)

As you said,  there are MANY who have had successful surgeries and many who have stayed on a& w for years and many with radiation.  Period. We should keep our responses to our experiences with our ANs as that IS what we know. That is what this forum used to be about. Supporting others both new and post treatment with positive, personal experiences. There are many more out there than "horror" stories. They just don't stay on the forum.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on October 03, 2016, 10:07:11 am
Although I recognize as another poster noted that there are many variables that effect choice, most of my reading of the literature were reviews of case studies with hundreds of patients. Interestingly, the outcomes, defined as tumor control, for surgery or radiation were very very similar. That makes radiation an easy choice to me because it is so much less invasive. The one mitigating factor is failure. If radiation fails, surgery is more complicated, though you may be able to re-radiate, and a good surgeon can still perform successful surgery. In contrast, if surgery fails, you still have the radiation card to play. However, since both have success rates around 90%, there just seemed to me to be so much more that could go wrong with surgery, and outpatient treatment vs 5 days in the hospital with a couple in the ICU was a no brainer. I actually think that in 10-20 years surgery won't be done due to more advances in radiation.

I have to agree with you BLW. I think it's a crime in some instances to perform major brain surgery on AN's , especially on those that are less than 1cm. The future appears very promising on the radiation front.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on October 03, 2016, 10:13:06 am


I don't think, in my opinion, it is incumbent on us to tell others what the "likely, statistic" results of one treatment over another is going to be,  or what "studies show,,,,," there is always a bias in this type of response as some have said.

This doesn't mean you throw out the baby with the bath water. Obviously the cornerstone of medical science is based on statistics. While no one has a crystal ball, doctors are there to guide you along the decision-making process based on statistics.



We should keep our responses to our experiences with our ANs as that IS what we know. 

Statistics are available to the public on PubMed and are universal. It's not about personal experience. For example, a cancer doctor doesn't have to have cancer in order to know how to treat a cancer patient. Statistic DO matter. That's why when they have clinical trials they always insist on unbiased control groups. If statistics were worthless then we'd have anarchy.

That is what this forum used to be about. Supporting others both new and post treatment with positive, personal experiences. There are many more out there than "horror" stories. They just don't stay on the forum.

I have to respectfully disagree, and I don't even know why this is being discussed on the Gamma Knife thread.

The forum should never be about "sugar-coating". Support does NOT mean sugarcoating!

 I personally hate it when people tell me "everything is going to be alright" when that person has no clue if that will be the case. The best support is backed up with truth and statistics. We've just witnessed in an earlier post that one person's horror story is another persons outcome as "doing well."

Just like BLW and I (in full disclosure) are clearly biased towards radiation, similarly Cheryl and Alabama are biased/passionate in regards to surgery. This is human nature and persist  throughout the forum largely based on which treatment the poster has undergone. It's almost comical.

My point is, you're not going to find many (certainly a lot less!) AN patients who had radiation frequenting the numerous sub categories on this forum for:  facial paralysis, headaches, eye problems, swallowing, taste issues, balance,  cognitive problems, etc. No one has died from radiation.

In my view, it's best to avoid these complications if possible. It's simple common sense. This is the main reason doctors put so many of their patients on Watch & Wait.

Does this make me unsupportive? Negative? Just the opposite.

Just because I don't sugarcoat or hold a "pollyanna" view towards everything AN or microsurgery doesn't make me any less supportive. Everyone is free, encouraged,  and welcome to share their views on the forum.

I've said many times we all hold passionate views, and at the end of the day we're all on the same team.


Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on October 03, 2016, 10:42:44 am
The good news is I just went to another eye doctor this morning for a second opinion, and the Opthamologist concluded that I don't have blepharospasms. He said I never had blepharospasms from the beginning, and that the first eye doctor misdiagnosed me.

My eye nerve "trembling" issue was likely transient due in large part to post-GK swelling which hopefully has now subsided.

I'm looking forward to my second post-GK follow-up MRI on October 13.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: alabamajane on October 03, 2016, 12:57:48 pm
Good news for you mcrue,, glad you have the correct diagnosis now. Sure hope you will continue to improve from your post GK  ( radiation) complication ,,

You may want to start a sub category under radiation for " swelling of tumor " complications. I'm sure it would be helpful to others considering radiation.

Have a great day!
Jane
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on October 03, 2016, 03:04:29 pm
Hugs.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on October 03, 2016, 05:46:22 pm
The good news is I just went to another eye doctor this morning for a second opinion, and the Opthamologist concluded that I don't have blepharospasms. He said I never had blepharospasms from the beginning, and that the first eye doctor misdiagnosed me.

My eye nerve "trembling" issue was likely transient due in large part to post-GK swelling which hopefully has now subsided.

I'm looking forward to my second post-GK follow-up MRI on October 13.

Yeah, I kind get the feeling that swelling is part of the post radiation path and it has very real symptoms and consequences if you are dealing witha large tumor.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on October 18, 2016, 10:03:51 am
Good news!

Dr. Sheehan's nurse called me this morning (less than 24-hours after receiving my MRI package)  to let me know the good news that my tumor is "going the way of the Dinosaur."

My AN is back to pre-treatment size, and the center of the tumor continues to change color.

Everything is going as planned, and I couldn't be much happier. Very reassuring news!

My next (third) follow-up MRI is scheduled around tax day, April 14, 2017.

I'm very glad I made the trip to Charlottesville, Virginia to see Dr. Sheehan.  It's also a very beautiful area to visit.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Blw on October 19, 2016, 02:10:59 pm
Good news!

Dr. Sheehan's nurse called me this morning (less than 24-hours after receiving my MRI package)  to let me know the good news that my tumor is "going the way of the Dinosaur."

My AN is back to pre-treatment size, and the center of the tumor continues to change color.

Everything is going as planned, and I couldn't be much happier. Very reassuring news!

My next (third) follow-up MRI is scheduled around tax day, April 14, 2017.

I'm very glad I made the trip to Charlottesville, Virginia to see Dr. Sheehan.  It's also a very beautiful area to visit.

Great news. Just got back from Maryland and the leaves are about at peak. Awesome scenery.
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: Janey on October 19, 2016, 10:06:16 pm
Congrats on the good report!
Title: Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
Post by: mcrue on October 20, 2016, 12:37:57 am
Thank you Janey and Blw.

Yes, I think Charlottesville would be beautiful place to visit in the Fall season with all the color changes. It is very picturesque.