Dr. Jason Sheehan - University of Virginia - Gamma Knife

[Echo]

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

[mcrue]

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.

[Blw]

That guy was pretty cool. The nurse practioner was also very good. Very professional operation.

[mcrue]

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

[Blw]

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.

[mcrue]

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.

[Blw]

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.

[mcrue]

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

[mcrue]

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.

[mcrue]

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.

[Blw]

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.

[mcrue]

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!
 

[Blw]

I should probably be getting the call to make to MRI appointment.

[mcrue]

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.
 

[Janey]

Hoping for a very good report!