AN Growth 6 Months Post Gamma Knife

[Kat From Indiana]

   I was diagnosed with R side AN March 2014.    9mm x 5mm.  I opted for GK.  Drove to Pittsburg and had the procedure June 13.  Last Wednesday I had my 6 month MRI.  My doctor in Pittsburg (Dr. Lunsford) has not seen the MRI yet, but today I went to see a local ENT about a possible BAHA.  My hearing in the AN ear has deteriorated rapidly in the last 3 months.  I showed him my MRI and he said the AN is now 1.6cm x 1cm.  He was very concerned with the rapid growth and told me that GK had not been good to me.  He said he wants to "get in there and make sure the GK has not converted the AN to cancer". I asked him if the increase in size might be due to swelling rather than to new growth.  He said no.  He wants me to see a neurosurgeon and have the AN removed.  His nurse mentioned to me that both doctors were available for surgery December 26. I don't like feeling pressured into surgery like this.  I am mailing my MRi disc to Dr. Lunsford tomorrow and hoping that he will tell me something different.  Please share some of your post GK stories with me?  Did you also have swelling post GK?  What was the outcome of that?  Thanks to those of you who respond.  I very much appreciate you.
 

[CHD63]

Hi Kat .....

I did not have gamma knife so I cannot share my experiences with that.  However, please, please do not feel pressured into surgery until you have Dr. Lunsford's opinion ..... and maybe even send your MRIs (both before and after GK) to a highly experienced acoustic neuroma surgeons for additional opinions.  Surgery after GK could be more problematic and you want the best surgeons possible within your means to do that.

Remember, this is your body and you are the one making the decision on what to do and where to do after gathering good information.

Many thoughts and prayers.

Clarice

[PaulW]

1. Many tumours undergo transient swelling and 6 months is when many tumours reach their peak..
The amount of swelling you have is at the high end. I have read studies that have showed that some tumours have swelled by 250% by volume and eventually shrunk.
2.  Over 99% of small tumours like yours need no further treatment in the first 5 years.
3.   The chances of this becoming malignant at this early stage are close to zero. I have not read anything to support this ever happenning at 6 months.... At 3 years, 5 years, 10 years yes but not 6 months. Malignancy is also far less likely to occur in smaller tumours due to smaller amounts of radiation and tissue used.
A recent study has estimated the risk at 1:10000 at 20 years for non NF2 AN's many of those were very low grade. And we're treated successfully with more radiation or surgery.
4.  Don't let your doctor scare you... Dr Lunsford is extremely experienced. I believe they have treated around 2000 AN's. Many a tumour has been removed unnecessarily due to swelling.
Definitely get Dr Lunsford opinion and don't assume anything until you hear from him.
The odds are with you that this is successful.

[Echo]

Hi Kat,

From all the reading and learning I have done on this forum in the past 2 years Dr. Lunsford and UPMC receive top ratings! Patients travel from out of State and from Canada for his care. You need to have Dr. Lunsford give you his feedback on your MRI before you make any decision.  I completely agree with Paul and Clarice.  They have given you excellent advice.  I also question the urgency of your other Dr. in trying to push you into surgery so quickly?? 

As Paul has mentioned, swelling can occur and it can vary in its intensity.  I don't know where your AN is located but bear in mind what my neurosurgeon told me.  He said swelling can come and go over a 24 month period.  Because the majority of my AN is located within the CPA it is quite likely that it can swell much more than someone whose AN is located within the IAC.  The IAC just doesn't allow the AN to spread out as quickly as it can within the CPA.  (This also explains why my AN grew from 1.8 to 2.4cm in less than a year - it had room to grow.)  So if your AN is primarily in or near the CPA this could also help explain the increase in size and you should be able to tell by looking at your MRI where your AN actually is.

I can also tell you that Paul's reference to "transient swelling reaching it's peak around 6 months", pretty much sums up my experience.  From 6 to 9 months post GK I had great difficulty with balance, tinnitus, wonky head days, exhaustion and ocular motor issues.  As I went past the 12 month marker things improved dramatically and I started realizing just how good I was feeling again.

Think positive, and let us know what Dr. Lunsford has to say.

All the best.
Cathie.

[ewhitese]

Hi Kat,

I am a UPMC GK alumni, 16 months post op. my tumor is about the same size as yours.  My tumor swelled at between 4 months and 6 months not as much as yours, I think it was 5mm x 8mm and swelled to 7mm x 10mm.  I have it written down somewhere but couldn't find it quickly so it is close anyway.   I was miserable with balance, head aches, tinnitus, hearing loss etc.  I had to learn to deal with all the mess and began working on vestibular rehab. got a hearing aide, but the good news is at 13 months out I began to notice things calming down.  I am now back to doing things I thought were over.  I am even anticipating a return to the ski slopes this winter.  I needed to work through the swelling and now the necrosis is beginning, I go for my next 6 month MRI at UPMC in Feb. and expect to see tumor shrinkage.  I chose to do my follow up MRI's at UPMC so I would get immediate feed back and not the run around from one provider to the other.  Saving the gas money seemed to be a mute point when it came to complicating the process by one facility competing with the next.   

You have had your surgery at the right place, it would be a mistake to side step the care you are receiving at UPMC.  Make your concerns known to Dr. Lundsford and his expert staff before you allow anyone to talk you into something that would interfere with that.  The staff at UPMC have your best interest at the center of their care plan.  If you need to have a change to your plan they will certainly direct you to some of the best AN surgeons in the country.  I am always skeptical of those who use high pressure tactics no matter if it is selling a car or scaring me into an irreversible commitment especially financial or healthcare.

The scariest after effect I experienced was vertigo, my last attack was at the beginning of July.  I have not experienced anything since.  It took me a month to get my balance back and now at 16 months I still have severe tinnitus and hearing loss, but I consider them an inconvenience more than a problem.  I have noticed (not tested yet) that I am hearing things I couldn't just a month ago in the AN ear.  Not enough to say it has come back but it is making me feel I am improving.  I have regained my confidence and most of my energy level I just have to get moving and restart an exercise plan to regain the strength I left on the sofa this past year.

My ENT at UPMC is Dr. Hirsch he lead my Gamma Knife team and is in charge of my post op care.  He calls me the poster child for GK because my tumor is behaving as it is expected to.  So I don't profess to hold the golden scepter of knowledge and as I said everyone reacts differently.  I am personally convinced that UPMC has been my best decision in this whole process.

As tumors go ours is small, I understand that size is only one factor, location also has an impact on the symptoms we experience.  Which nerve is effected and where on the nerve is the tumor attached.  No two people are going to experience the same symptoms.  But what I do know is that the swelling you have experienced is note worthy and I would personally want to here what Dr. Lundsford had to say before making any more decisions.  I have posted numerous times over several categories on this forum, and in response to others posts.  I don't know if you can use the search tool to see my posts but I have documented my recovery process in a round about way over the past 16 months it may give you some insight to the things I went through emotionally as well as physically, to get to the place I am at today.

I am one of those patience that will probably begin to fall away from this site because I am moving on to re-enter my life. I will keep contact as best I can but honestly I am starting to get so busy I don't have much time to sit and stare at the computer screen.  That is such a wonderful thing to say, to busy.  I didn't think it possible just 5 months ago.  You are in a faze of your treatment that is extremely uncomfortable, physically debilitating and emotionally confusing,  you are experiencing things that just seem to pop up and hit you.  Take comfort in knowing that there is a recovery at the end of this process.  When will that be?  Hard to say, soon maybe not, but it will come.  Try to focus on dealing with things you can effect and compensate for the ones you can't.  Eventually they won't feel so devastating.

First step, get a response from Dr. Lundsford before reacting in crisis mode.  The people I trust the most are the guys who deal with AN as their specialty.  Easier said than done believe me I know.  I hope you get positive advice and good news, those of us who precede you are praying with you and look forward to hearing from you again.  We are walking this path with you.

Ed

[jsanders1379]

I agree...my tumor swelled more than 50% (one dimension) @ 4mo. post GK...don't rush into anything

[Kat From Indiana]

I am weary & frustrated.  My father, were he still alive, would tell me to snap out of it and to never give up. But this is hard.
I sent my December 2014 (6 month post GK) to Dr. L., along with a letter telling him what the local ENT/BAHA guy had told me (that the AN had doubled in size from my MRI taken the day of my GK).  Dr. L. replied with a letter telling me that the actual tumor volume of 298 cubic millimeters had remained the same. (This is the first time that I have seen the measurments of an AN measured by volume)  Dr. L. stated "there is no evidence of tumor growth". I was very happy to read that. 
Then I received a written diagnosis from the local hospital where I had the December 2014 MRI done.  This would be a 3rd opinion diagnosis and not related to the ENT/BAHA doctor (who said that  my tumor had doubled in size).  The final review of the latest MRI by the hospital radiologist stated that the tumor is "increasing in size compared with the 1.2 cm on the previous study" (previous study=June 2014 MRI taken the day of GK). The radiologist wrote that the tumor is now measuring 1.5 cm with increased protrusion  into the cerebellopontine...  In addition to this, the report indicated a new finding of a "5 mm meningioma projecting to the left at the most anterior frontal falx."  Dr. L. never mentioned the new meningioma in his letter. 
So I have 3 different opinions of the same MRI (with comparison of previous MRI) and I am really discouraged.  Actually, I have 4 different reviews.
1. Diagnosed 3/29/14 Right Side AN 8mm x 3mm x 4mm (per hospital radiologist who reviewed the 1st MRI)
2. My UPMC Doctor diagnosed the AN on 12/06/14 at 298 cubic millimeters. (this is the first actual number he has given)
3. ENT/BAHA Doctor diagnosed the AN on 12/6/14 at 1.6 cm x 1 cm. and the 6/13/14 MRI at 9mm x 5mm. 
4. Hospital Radiologist diagnosed the AN on 12/6/14 at .9 x 1.5 x .7 cm and the 6/13/14 at .7 x 1.2 x .6 cm

I accept that the numbers may be slightly different, but at this point they don't even mean anything to me.  I feel stupid and adrift.  One doc says "no change". Another doc says "tumor had doubled". A third source says 'some growth with protrusion now outside of the ear canal'.  Add to that a new finding of a .5 x .4 cm meningioma noted only by the hospital radiologist.  I will not go back to see the ENT/BAHA doctor, but I am reminded that he was insistent that I go see another neuro-surgeon.  Another ENT (the one that I have been seeing locally since GK)  wants me to go (again) to see a neurotologist "just in case". 

Sorry if I appear to be rambling.  I have been frozen for over a month and just now felt strong enough to start to put my thoughts, concerns, feelings together.  Maybe I'll come back later and read this and wonder what I had been drinking, but I assure you it is Monday morning and all I have had is coffee.  Oh and I have self medicated with a sugary toaster strudel. I don't like to question doctors and I really do trust my UPMC doctor.  So I am going to take his advice and do nothing.  I will wait 1 year and have another MRI.  This time I will go to Pittsburgh to have it done. I think the finding of the new meningioma is what concerns me the most.  I really wish that Dr. L. in Pittsburgh would have mentioned that in his letter.  I should call him.  But I just don't have the energy.

[kmr1969]

Kat,

I think you should call Dr. L and ask him about it.  I know you say you don't have the energy for it, but I bet it is sapping a lot of energy from you being worried about this.

I didn't do GK, but I drove from Baltimore to Pittsburgh to see Dr. L based upon his reputation at UPMC.

He seemed like a no nonsense kind of guy to me and someone who would give you a straight answer.

I can understand your frustration with 3 varying readings of your MRI.

That is really kind of crazy.

If I were you, I couldn't wait a year without expressing your concern to Dr. L. about they alleged new issue.

I truly hope you get good news.

Ken

[rupert]

If you look at your MRI scan and try to measure it you will soon find out that it all depends on where you take the measurements. You come up with all different sizes depending where you take off from. Looks like the case here.  Experienced AN doctors know what they're looking at, and would need to see a pattern of growth over a period of time and scans. Usually years, before it would be considered growing.  Did Dr. L.  give you a time frame for your next MRI?   I know this statement may be a little blunt but, there is a big difference between a local ENT, radiologist and a world recognized AN specialist.  I don't think it would hurt to follow up your concerns again with Dr. L. if it would ease your mind.

[ANGuy]

If you look at your MRI scan and try to measure it you will soon find out that it all depends on where you take the measurements. You come up with all different sizes depending where you take off from. Looks like the case here.  Experienced AN doctors know what they're looking at, and would need to see a pattern of growth over a period of time and scans. Usually years, before it would be considered growing.  Did Dr. L.  give you a time frame for your next MRI?   I know this statement may be a little blunt but, there is a big difference between a local ENT, radiologist and a world recognized AN specialist.  I don't think it would hurt to follow up your concerns again with Dr. L. if it would ease your mind.

This post is full of good info.  Measurements are indeed open to interpretation.  And, several MRI's are typically needed over a period of years so that the latest can be compared to the earliest to see if there are any changes.  And then the part about going with the opinion of the more experienced specialist, and following up further with him to satisfy your concerns is key.

[ewhitese]

Hi kat,

I can identify with your feelings of frustration and anxiety.  You are still new to your symptoms and they are fresh in your mind.  I can scarcely remember what full hearing was like but fresh in the process I can remember a time when listening to the radio was a constant reminder of the hearing I lost.   I don't notice it much now.  I can enjoy music again when early on I thought I wouldn't listen to the radio again.

Your fatigue, listless feeling could be a response to the surgery, we have had brain surgery, maybe we walked in and walked out the same day but it is brain surgery.  Your brain needs time to deal with that.  I don't know how much of that feeling is from the AN itself or the surgery.  I didn't start getting my feet back under me until 11 months, still working my way back, I am talking about exercise good intentions am getting started at least.  They say it takes 21 days to get in shape and only 3 days to go out of shape.

I am pretty sure that UPMC will do an MRI every 6 months for the first two years, I may be wrong about that but I would assume you will be back for another check on your 6 month anniversary.  My local ENT found my AN but was clear he was not qualified to deal with it and suggested I go to UPMC.  I trust him for all my sinus care but stick with UPMC for everything AN.  He did suggest I have my MRI done locally and read in Pittsburgh, I chose to go to Pittsburgh so all my testing would done on the same machine to guarantee consistency.  My local hospital has a machine that is fairly old and I wasn't sure it would produce the quality picture the newer machine in Pittsburgh could.  I am curious as to what Dr L's. opinion would be of the diagnosed meningioma.  In any case the growth that is being debated is very small and the time span of 6 more months is not going to be to long to wait.  Although at the time it seems an eternity.

Go ahead and give yourself time to be worn out, its ok.  Don't be to hard on yourself for feeling the way you do.  Your reactions are normal and we have all been there.  I apologize if I sound like I am making lite of your situation I am not.  I do understand where you are because I was there also just a year ago.  Seems like a long time looking into the unknown but from the other side looking back it feels like yesterday.  Keep your head up, look for the things you can control today and tomorrow will take care of itself.  Let yourself rest it will help.  If you have concerns make them known, the answers you find will make things less stressful.  You are in my prayers hope your experience gets easier.

Ed

[SueLL]

Kat - I hope that you are doing better in the time since your last post.  I have read all your prior posts, as I opted for GK with Dr L right after you in July 2014.  I also just learned of a slight increase in size at the 6 month point, and my hearing has diminished from 92% in my AN ear to the 20-30% range - not what any of us hope for!

I hope that you have contacted someone at UPMC.  Having traveled from Colorado for GK, I know what it is like to be without an AN specialist to consult.  I think my primary physician was surprised at the growth and even afraid to tell me, but I had been prepared for growth based upon postings on this forum.  She called UPMC for clarification.  For piece of mind, call UPMC and ask them about the discrepancy in assessment of the results.

[cathyroe]

Hi Kat and SueLL,
I had my GK with Dr. L right after you, July 28, 2014. My 6 month MRI is this Tuesday. I'm gearing up for the news, the anticipation is difficult. If it does show increase, I'm glad I read all these comments. Kat, the swelling is very common as I understand. So we have to hang in there if we get that disappointing news. Dr. L is the best in the land! I remember him telling me that when I get my 6 month MRI to just send it directly to him and not give the results to anyone else because most local docs will just scare you with false information.
My thoughts and prayers are with you, and with all of us. Thanks to everyone that posts progress and healing and hope!
Cathy

[mcrue]

Kat from Indiana,

Any updates?