ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: robinb on January 23, 2013, 02:30:07 pm
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I thought I would start a new post to document my experience in appreciation for those that had done theirs previously. All were immensely helpful in my decision making process as far as treatment and doctor selection.
So, arrived in Pittsburgh last night. Staying at Hilton Garden Inn (formerly Wyndham) within walking distance to UPMC. However, its 9 degrees, so not planning on walking anywhere! Plus hospital has valet parking.
Appointment this morning w/Dr. Lunsford and GK team; everyone we came in contact with could not have been nicer and put me more at ease. First met w/Dr. Lunsford's senior "fellow" to review history. Then Dr. Lunsford. I reiterated that I requested the GK Perfexion (they also have 4C) and they said while other machine fine for my size tumor, no problem w/my request. Reviewed procedure with me and I reminded them how nervous I am about head frame and after talking with them, I am totally at ease. Then met nursing staff to again review history and tomorrow's procedure. All I can say is I am 100% pleased w/decision to come here. Then sent two buildings over (via skybridge) for bloodwork and same experience w/lab people.
I did mention to Dr. Lunsford that both he and UPMC are no longer in list of physicians and medical centers on ANA web site (I asked why on this forum but no responses). He indicated that at this point he does not have the need to solicit endorsements.
When I first started research, Dr. Lunsford and UPMC were along w/Dr. Konziolka before he left in Sept. 2012 for NYU. However, its well known that Dr. Lunsford brought the first Gamma Knife to this country.
So done for the day. Will relax and have a nice dinner with my husband.
Will post again after procedure tomorrow.
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Hello robin! first if all, good luck tomorrow!! I had GK atUPMC in Jan 2009. I worked with Dr kondziolka and had a very positive experience there. rest assured about the head frame, they will give you some medicine tomorrow that makes you very relaxed, and you won't even know they are putting the head piece on. it doesn't hurt either I left that day with some bandages on my forehead and that's all! I slept a lot the next day but other than that I felt good. it was easy as pie and I'd go through it again if I had too. the nurse staff at the GK department are all wonderful they make you very comfortable and are super nice!
I just know you are in great hands with your team! you will be in my thoughts and prayers tomorrow!!
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Dear Robin,
You are probably in treatment this afternoon, good luck on being a postie toastie (after your treatment)! I found that UPMC was a fine facility when I interviewed with Dr. Kondzuilka and enjoyed the consideration that Dr. Konzuilka gave me. Quite frankly, I would have had it done there except for the fact that Dr. Sisti did the initial surgery on me and had I chosen Dr. Konzuilka done my GK, Sisti would not have seen me again. Good luck with Dr.Lundsford you should have an excellent outcome.
The Gamma Knife surgery in fact is not surgery at all. It is just a relatively painless one shot procedure that takes about 40 minutes to do from start of the GK machine to the minute the machine shuts off, of course it takes about 3 hours for them to attach the heavy titanium steel head frame.
It takes without complications about 3 weeks for the pin holes to heal.
I want you to know that I skipped a day at work after I had the procedure done and even attended a party for a long time departing employee the day I returned to work. The very worst thing that occurred on the day of was the funny way I looked, I looked like a WWI veteran home from the war on the ride home from the hospital. As you know, I was quite prayerful and meditative as I went in in fact because I had turned my meditation CD on I went through the first 20 minutes without realizing that the machine had been turned on! It was soundless! All the while I had been thinking that it was going to be noisy!
An easy breezy experience, and an awful lot of worry out of the way. May your experience be the same! Post often and keep up the attitude! Let me be the first to welcome you to the post treatment side, welcome and Happy Trails to you.
Keep us posted!
Mike
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Well I am officially a postie toastie now!
Back at hotel after a long morning.
checked into hospital at 5:45am, taken back for prep at 6:15. My nurse, Debbie, is wonderful. Given a "happy pill" and IV placed.
Shortly thereafter happy juice in the IV line and then Dr. Lunsford and team came in to attach head frame.
Like everyone told me, no big deal; had a moment of discomfort on one site so a little more local took care of that.
The off to MRI, half asleep so again no big deal.
Back to room to watch tv and wait for GK programming to be done. Then when ready, some more happy juice so I could almost sleep thru the GK. Had the Perfexion unit, so vey comfie, played my choice of music.
Then when done, back to room and head frame removed; again, no big deal. Have a headache, soreness at pin sites, one worse than others and is oozing a little. Headache improving as I write this.
Just ate some lunch and feeling better.
We have to leave for airport tomorrow at 5am for 7am flight back to SoCal.
Thanks to everyone for the good wishes and positive thoughts!!!!
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Robin,
So glad to hear that everything went smoothly. I knew you would do great. If you have any questions about anything later, let me know.
Cindy
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Sounds like a very very positive experience. Yay for the good guys! And for happy juice.
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Thanks all for the support.
Yay for the Happy Juice is right.
Well happy juice and local anesthesia all worn off now. I can report no headache, just some soreness areound the pin sites and one of them still bleeding a little.
Since we have to leave htel at 5am to catch 7am flight, not going to take off bandaids till we get home. My husband braved the cold to go find me a wide headband for me so I can put over them!
I had planned tomorrow off and back to work on Monday. However, I have the luxury of working from home when I am not traveling and have no travel scheduled till end of February as of right now.
No change to hearing and still have mild tinnitus. Nothing unexpected.
Thanks everyone for the encouragement.
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Arrived back home today.
Feel great, just tired.
Removed bandaids on forehead, the pin sites just look like a scab was peeled off. No big deal. Pin sites still sore and when I washed my hair, I realized my scalp is still a little numb.
Nothing more to do now, hopefully, till my 6 month MRI in July!
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Well, an uneventful end to day three as a postie toastie.
I forgot to mention I also was given another round of steroids due to my fluctuation in hearing and positive response to previous rounds. I started yesterday morning and have had zero tinnitus and I could swear my hearing has improved. I downloaded one of those hearing test apps, will try it tomorrow. Anyone think these are a reliable indicator?
Soreness subsiding around pin sites and almost all scalp numbness gone.
One day at a time, will be marking them till my six month checkup.
I respect and admire those that have gone through surgery and its complications. I know I made the right decision for me in ruling out surgery and encourage anyone on the fence to reach out and I will share all the research I had done prior to choosing GK. Ultimately, I think the various radiation options are good, I chose GK due to its simplicity, time involved, historical data and experience of doctors. The head frame was the biggest issue I had to overcome, and as a wimp in dealing with pain, I can say it was painless! It was on amd off in less than 5 minutes before and after. Longest time was spent waiting for docs to program GK unit for my tumor after the MRI.
Back to work tomorrow and to the gym on Tuesday!
Thanks again to all that shared their experiences with me and gave encouragemtn and support.
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Dear Robin,
Thanks for posting your experiences, it is your way of "paying it forward" and it is helpful believe me! As you wait for your 1st MRI check up, please post often!
It is helpful to those newbies who have not made a decision yet whether to opt for surgery or to do as you have done with the less invasive Gamma Knife.
You go girl! Woo hoo!
Congratulations!
Mike
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Hi Mike-
Thanks for the support!!
I read all your posts and your most recent on why you chose surgery. You have been through a lot.
My first inclination due to small size of my tumor was to "watch and wait" Every doc I consulted with asked me the question "What are you watching and waiting for?". So watch and wait lasted all of two weeks.
I will continue to post periodically, even if there is nothing to report as, often, no news is good news!
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Dear Robin,
If it were not for all of you here, I most assuredly would have gone mad ( in 2012), all of you have given me the opportunity through expressing myself to realize that while I was lucky (my parents picked the hospital and the Doctor), I am no hero.
I am just a man who unfortunately was born with a congenital condition (which was discovered in 1970) through treatment as time went on predisposed me much later in life to an AN (or so Dr. Sisti says).
Being able to blog about it and help others has been therapeutic for me as well and makes me feel as though I'm doing something useful. Thank you for providing your insight through your experiences as well.
Mike
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This journal you have posted has been a great insight for me. I started out the surgery route but really seriously looking into gamma knife with dr. Kondziolka. Any feedback on his work? Please advise.
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I am so glad to help someone else going down this path.
I sent my MRI to Dr. Kondziolka and he was my first choice based upon my research. Spoke with several former patients and had lengthy email exchange with him and personal conversations. He spent about 20 years at UPMC with Dr. Lunsford and was the public face of their GK program and co director. The only reason I didnt go to him was the hassle of NY/NJ facility due to the GK at NYU destroyed by hurricane. Then I found out he was set up for any insurance yet and would have to be out of network, which just didnt work for me. Once I made my decision on treatment before Xmas, I wanted to get it scheduled and his office said they wouldnt have insurance set up for another 4-8 weeks.
So I went to Dr. Lunsford at UPMC, no regrets here.
Dr. K is doing GK in NJ and I do know that the GK equipment at Hackensack is the latest upgraded Perfexion model. UPMC is a few years old and is awaiting the upgrade. No real big deal, except the treatment could take 10-20 minutes longer from what I was told.
When I told Dr. K I was going to UPMC he was very supportive.
If you want to talk, send me a PM with your contact info and I'd be happy to call/email you directly.
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Hi Robin,
Thanks for sharing your personal GK journal. I have scheduled GK for myself this April after my AN showed growth from 1.4 cm to 1.8 cm on my annual MRI last October. I am pretty hopeful that this is the right decision for me and my family (wife and 2 teenagers), but it helps to hear that your experience has been positive.
Please keep us updated, as you are able.
Thanks again,
Petrone
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Hi Petrone-
I will update periodically, although so far nothing to report except came down w/a cold.
I finshed up steroid round yesterday, will see if anything changes.
Feel great, hearing the same as before, fluctuates and always best in the morning. If I press the pin sites, they are still a little sore.
No other symtoms!!!
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sounds great.
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Dtorres,
I had GK with Dr. Kondziolka in 2009 at UMPC. I had such a positive experience with him and his team there. He is a wonderful doctor, even though he was no longer treating me I was sad to see him go, and im happy hes still treating AN patients in NY or NJ for the time being.
I have also heard wonderful things about Dr. Lunsford at UPMC. Get a few consults if you feel comfortable with that, and pick the doctor that makes you feel the most comfortable.
For me, Dr. K. worked closely with my previous boyfriend's brother who is the trainer for the Pittsburg Penguins, therefore we "knew" him at the time and he was able to get me scheduled for GK 2 days after my initial consult. We were also so very close to Pittsburgh, that it was a no brainer for me.
My results were not typical, as I did have regrowth, and eventually had to have my tumor removed in 2011. But this is a low chance, and no one should be discouraged from my experience. I would have GK again if I was in the situation I was in back in 2009, with no questions asked. My tumor was 2.2 at that time, and then later grew to 2.5 before having it removed after GK.
I went back to UPMC with Dr. Paul Gardner to have the surgery, and although I am deaf on that side, and have some daily discomfort around the mesh area, Im happy with my decision and my life has moved forward in such a positive way. :)
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I have scheduled GK for myself this April after my AN showed growth from 1.4 cm to 1.8 cm on my annual MRI last October. I am pretty hopeful that this is the right decision for me and my family (wife and 2 teenagers), but it helps to hear that your experience has been positive.
Hi Petrone.
I see this is your first post here so welcome to the club. This is a great place to learn and get moral support.
I, too, opted for GK when my AN grew 20% in 6 months and had my GK on 1/22/13. My hearing on that side was already gone for a while so GK was a viable alternative to surgery.
GK is an outpatient procedure so you are in and out in a day. You can read my thread about my experience:
http://www.anausa.org/smf/index.php?topic=18287.0
GK has a very high success rate. Here's an article:
http://emedicine.medscape.com/article/857604-overview
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Hi Robin, glad to hear your recovery continues to go well! I have two questions, if you don't mind. 1) Was steroid treatment "a given" as standard post-GK protocol? and 2) any noticeable side effects from the steroids?
To Arizonajack, thanks for the warm welcome and encouragement! After reading and learning from this site for a couple of years, I thought it was time to formally join the group now that I have GK scheduled in April. Thanks also for the link to your personal GK experience, and for the link to the very informative article on radio-surgery. My favorite part of the article was reading about the 94-97% success rates with GK! I hope to be in that group too someday with you and Robin!
Be well,
Petrone
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Hi Petrone-
I finished the steroids last Friday. Since then, I have had some mild tinnitus on and off. Its a high frequency ringing that most of the time I just dont notice.
I dont think steroids after GK are standard. They were presribed in my case because I have had positive reactions with prior rounds. There have been about 4-5 rounds prior to GK of a high dose tapering off. Almost every time, I had some hearing improvement. I did not begin having noticable tinnitus until after the holidays.
At any rate, what the professionals refer to as "servicable hearing" preservation is not what I would consider highly usable. Can I comfortably put a phone to my right ear and hear a conversation; can I put an earphone into that ear and hear the lyrics of a song; most of the time the answer is no. But most of the time, the hearing loss is not something I notice. Sometimes after steroid use, it does improve a great deal. However, steroids cannot be prescribed on an ongoing basis due to potential side effects. However, I will continue to get them probably a couple of times a year if I can until there is no improvement while taking them.
My goal in choosing GK was a minimally invasive procedure that would stop the tumor from growing and preserve as much hearing as possible that I had l left, with little down time and side effects. For me, the six and one year MRI's will be the test.
Hope this answers your questions.
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If I press the pin sites, they are still a little sore.
Can't help yourself, right?
Neither could I.
I'm still poking at them, even two weeks later.
But almost can't feel them anymore.
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ok, very funny!
I stopped poking at them as they are not sore anymore!
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Guys,
The novelty wears off after a while. The tactile memory of having such a heavy implement screwed into your skull lasts and lasts however. Even as it fades from sight!
Mike
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A little over two weeks post GK; all is great; have not had any tinnitus for two days!!!
I will check in periodcially to post contunied good outcome, more frequently if anything else to report.
Thanks everyone!
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Four weeks since GK; occasional tinnitus (high pitch ringing). Most of the time I dont even notice it.
Other than that, back to normal....
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Dear Robin,
Please please continue to keep us posted! Following your posts keeps my spirits lifted!
Thanks!
Mike
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I'm ready to schedule my gamma knife procedure in June. Nervous but relieved that I made a decision.
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Congrats on the hardest part; making the decsion!
Once I made mine, I couldnt wait to get it done. Youre a few months out; likely you will second guess yourself, but dont make yourself nuts over it. I did up until the day I met the docs, thats why I had it done so quickly after I decided. Would have been even sooner if the holidays werent looming and I had to wait for insurance to get worked out before I would finalize travel. Even with doing that, the claims are a mess, so will have to spend hours sorting through that nonsense now.
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Thank you for your information Robin. It is very helpful in making a decision. I has a small stroke on January 6,2013. When doing an MRI to confirm the stroke diagnosis they discovered my AN. My local neurologist scared me when he finally saw me on February 12th. He said I needed to have surgery. He said there was no reason to wait. I said there was a reason. I am a teacher and financially I needed to wait until the summer. He very quickly said no! He got an appointment for me at the University of Washington 3 days later.
At UW I was greatly relieved to hear I could wait until the summer with no problem.
My AN has a cyst. Dr. Rockhill who would do the gamma-knife procedure said the cyst is not a problem but that some doctors will tell you that radiation is not advised when there is a cyst. Sure enough in my next appointment with Dr. Duckert, the ENT surgeon I was told that gamma-knife was not always successful. Dr. Duckert believes I should have surgery. He told me with kind but right now I can't remember the name let alone be able to type it.
Does anyone have experience with gamma-knife when your AN has a cyst?
Humor helps me get through a lot in life. In this case I can't believe my problem (AN) has a problem (cyst)!
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Hi Liz-
I have not seen anything on AN's with a cyst, so cant comment. I see you started another thread, so maybe you will get responses.
The good thing is that you can wait; that gives you time to do more research. I am not sure about experience of docs at UW, but encourage you to send your MRI to Dr. Chang at Stanford, and the docs at UPMC and NYU I mentioned. They will review it at no cost to you. This is important as it seems you have only consulted w/surgeons; they do surgery, so in my experience, that's what they will advocate for.
When I was doing my research, I spoke w/someone on the WTT list who highly recommended docs at Swedish, which may be close to you. I posted info below, but I did not check them out.
Here's contact info for Swedish if you want to check them out as well. They offer both Gamma and CyberKnife.
Swedish NeuroScience Specialists
James Tower
550 17th Ave. Suite 500
Seattle, WA 98122
Tel: 206-320-2800
Fax: 206-320-2827
www.swedish.org
You may also want to Google Sandra Vermeulen, Swedish. She is the one who did my treatment. A truly amazing woman.
Good luck and feel free to PM me anytime.
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I agree with Robin, making the decision is the hardest part. I had GK twelve months ago, It took going to several doctors and learning everything I could so that I could make an informed decision.
I did not have any problems with the whole Gamma Knife Surgery. I will be going Tuesday to have my one year post GK MRI. I know that the tumor must have swelled due to the radiation as I am having left sided facial weakness and tinnitus which I didn't have before GK. It is no big deal however. To this day, I have not regretted my decision to have GK vs surgery.
Good luck and keep us posted.
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Good luck Bonnie w/your MRI tomorrow. Did you have one at 6 mos?
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I think that it's a blessing to have a support group online.
It has helped me a lot just knowing that there are people who have the same condition and they are doing great.
I can't read all the posts, but belonging to these groups has been a learning experience.
Thanks to all for being here for the ones who need your opinion, or just a cyber hug.
Elizabeth
Dear Robin,
If it were not for all of you here, I most assuredly would have gone mad ( in 2012), all of you have given me the opportunity through expressing myself to realize that while I was lucky (my parents picked the hospital and the Doctor), I am no hero.
I am just a man who unfortunately was born with a congenital condition (which was discovered in 1970) through treatment as time went on predisposed me much later in life to an AN (or so Dr. Sisti says).
Being able to blog about it and help others has been therapeutic for me as well and makes me feel as though I'm doing something useful. Thank you for providing your insight through your experiences as well.
Mike
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Thanks Robin. I did have an MRI at 6 months post GK that showed some swelling. However, at that time I had no symptoms. I did have the one year post GK yesterday and am awaiting the results.
I will keep you posted. I hope all is well with you
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Well today marks the two month anniversary since my GK.
I still have tinnitus, a slight annoyance at times. Hearing on the AN side might classify as serviceable but its of no real use to me. I just started another dose of prednisone to see if will help improve the hearing as it did before. On day 3, but its not doing anything of note.
All in all, I have no issues to deal with. My life is back to the way it was; I work out 4-5 times per week and travel at least twice a month by air for work.
My thanks to all that helped me navigate the treatment options and my continued support is there for anyone who has questions.
Life is good!
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Bonnie:
Did you develop facial weakness a year after GK?
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Hi all-
Got pretty freaked out yesterday as I had a very brief episode of facial twinging/spasms. It felt like all the muscles on my AN side were contracting and distorting my face and I couldn't control it. I was actually trying to pull the corner of my mouth back to where it felt like it should be. By the time I got to a mirror everything was back to normal. After looking at posts, seems like this is not abnormal.
In the last week, I have also had increased dizziness; mostly when I am stressed or increased heart rate when working out.
From what I can read here, nothing abnormal right? Will probably call Dr. Lunsford tomorrow anyway, but any feedback appreciated.
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Had it happen again this morning while brushing teeth; this time I could see it. Looks just like I described. Mouth pulling up, eye socket shrinking. Lasted 30 secs, felt a lot longer.
Called Dr. Lunsfords office; he is away. His associate prescribed Methylprednisolone. which I also took right after the GK.
After reading through other posts, I see its called hemifacial spasms. Hopefully will pass soon and not become more frequent. I have a very busy travel schedule over the next month; lots of flights and driving.
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and this is 6 months after? Keep us posted.
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Hi dtorres-
Not sure who your question was directed to. I am 2.5 months post GK.
This morning I had a very mild and brief spasm, only one since starting on the Methylprednisolone. Again while I was brushing my teeth.
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Hi Robin,
Here's hoping that these are only temporary glitches along the way to a full recovery. Getting rest, a healthy diet, and your regular exercise routine can only help. Please keep us posted.
My GK is scheduled in less than 2 weeks already on April 17. I also travel quite a lot for work, but I was able to clear my travel schedule through most of the next few months.
All the best,
Petrone
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Hi Petrone-
Thanks for the words of encouragement. I scaled back my travel for 1st month after, thought that would be more than enough time. These spasms just take me by surprise, fortunately they are brief and hopefully will be gone soon.
I will think good thoughts for you on the 17th; the actual procedure is a breeze; check in after you're done.
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Haven't had any more spasms! :)
I did call Dr. Lunsford last week; he called me back within two hours, so happy to see good follow up.
Anyway, he wasn't concerned and predicted would not be ongoing. We discussed the fact that I had Bells Palsy almost 20 years ago, which is the 7th cranial nerve...he wasn't making a correlation but said other nerves can be mildly irritated from the GK. He said he would not recommend any other meds. Anyway, hopefully gone for good.
Within 6 days of my 3 month anniversary post GK!!!
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Robin,
I did get the results of my one year post GK MRI. It showed some shrinkage in the center of the tumor but not the edges. It is so strange because when I had my 6 mos. post GK MRI it showed swelling and I was asymptomatic at that time. Six months later I am having left sided facial weakness, intermittent tinnitus, left eye twitching and pain in the left ear that sometimes radiates to the left lower jaw. I don't understand why I didn't have these symptoms when the tumor was swelling at the 6 mos. point in time. All of these symptoms I can live with. Things could be much worse.
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Bonnie,
Just read your post. At four months I began having pain in the left side of my face and ear. It ran from the top of my head to my jaw. I went to my ENT who said I had TMJ. I do not believe I have TMJ. After calling my doctors, they had me come in for an MRI. The MRI showed treatment effect (swelling). The tumor was pressing on a nerve. They gave me steriods which did take the pain away. I now at 6 months have twitching in my left eye and occasionally a little quick pain in my jaw. However, I feel back to normal. My tumor showed darkening in the center, which my doctors feel was a good sign the tumor is dieing. I do go back in June for another MRI. I too feel things could be much worse.
Cindy
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Cindy,
Your story is just about identical to mine. It was good to see that someone else was experiencing the same symptoms. I am so glad to see the your tumor is starting to die. Keep me posted on how you are doing. I will be seeing my ENT next week. I will let you know what he has to say.
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Bonnie,
Yes, please keep me updated.
Cindy
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My 3 month GK anniversary passed yesterday; halfway to my first post GK MRI...
I am still getting facial spasms a couple of times a week; only happens when I brush my teeth. Not sure what to make of this; I just pause and wait 20-30 seconds for it to pass.
All in all, I can live w/this so long as it doesn't happen when I am with people; I managed to get a picture of my face during a spasm the other day (no i will not post it). Someone else called it her Picasso face; perfect description!
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The spasms continue; almost daily. When I was flying home had a second one during a moment of stress during my layover in /chicago. I called and emailed Dr. Lunsford (response time within an hour!). He was traveling so I only spoke at length with Lana, his PA, but he emailed that he wanted me to try low dose Valium. Started Friday evening, had spasm yesterday while brushing teeth and two more milder ones during the day while in the sun. Another strong one this morning while brushing teeth. Does not seem to be improving at all. Will try to reach him this week before we leave on vacation Thursday (4 more flights to/from; then week after we return another 4 flight s for business travel).
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so sorry this is happening-keep us posted
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Thanks.
A second one today while in sun-
whats odd is that I haven't had one while brushing teeth at night; just in the morning...
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Latest update:
Yesterday, I sent Dr. Lunsford and his PA, Lana, the history of all my activity, flights, dental work since the GK.
Dr. Lunsford said I need to slow down and it should improve.
Had appt to work out last night, all day no spasms, then had two really strong ones yesterday while working out with my trainer during uphill walk and again when heart rate was recovering. She actually timed it, which I had not done before and from start to complete finish lasted about 1m/15 sec. We finished workout at very low level. I cancelled for tonight as going to try to heed Dr.s advise.
Had a long talk today w/Lana as Dr. L is at a conference. She said I really need to give myself time, try to slow down my pace and they believe it will pass. Also, that I had not given Valium long enough time, I could increase dose by 2 more mg per day (which I did since working from home today, was really loopy).
After our Mexico vacation and next business trip week of 5/13 I will hold off on travel for as long as I can. She also recommended herbal tea with mint or thyme, which I will try.
No spasms today.
Will post another update after we return on the 9th.
For everyone reading this that's thinking of having CK or GK, I have no regrets, this is just a bump in the road.
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It does sound like to do a lot of activity but then again we are all trying to be our normal selfs. Since diagnosed, everyone has noticed a big change in me. I'm not as social because I can't hear or follow conversations and I 'm fatigued all the time. My procedure is scheduled for june 25th and I know I won't be able to bounce back to my old self for quite some time but man I hope I get there.
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Hi Robin,
I hope your PA is right and these spasms subside soon. Her advice to slow down a bit can't hurt either. You've been through a lot - give your body some time to get back to your normal pace and lifestyle. We can all benefit from moderate exercise, a healthy diet, getting enough rest, etc. Ever try yoga? Having an AN led me to yoga about a year ago and it's been a real game-changer for me in many, many ways.
Be well,
Petrone
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Back from a wonderful vacation in Puerto Vallarta. Despite spending most of the time lounging, the spasms continued; still while brushing teeth and the while turning over on a chaise from back to front....hear whooshing sound in head at those moments. Avergae was two per day. So I stopped taking the Valium. Spoke w/doc while en route home and they want me to now try Neurontin. Will start that tomorrow. Its a 28 day regimen.
However, my travel grind is in full swing next week; two cities, five or six flights; my itinerary is changing as I write this. I am hoping after that I can slow things down for at least a month.
Petrone- I did have a wonderful massage while on vacation; spasms slowed to once per day just while brushing teeth for the last 3 days. I haven't done yoga in over 20 years (it was too slow for my Type A personality!)
Will update after a week or two as to response to new med. Be well everyone!
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Here's the latest update on my spasms;
I have been on Neurontin for 10 days (generic Gabapentin). the dosage increases every two days or so. The spasms have decreased in frequency and intensity. I have gone 1-2 days with no spasms even last week when I traveled to 2 major cities over 5 days and took 5 flights.
In logging the spasms, they occur when I brush teeth (relaxed facial muscles and/or switch to electric toothbrush and they rarely happen. Also continue to occur when I have been lying/sitting and suddenly go prone on stomach w/head up to read or work.
Had none yesterday and today, so I decided to work out. After cardio when heart rate peaked and was during recovery I had a strong spasm.
So theres a pattern here 99% of the time. The Gabapentin has definitely hepled and I was feeling good about it till the spasm this evening.
Scheduling another call w/Dr. Lunsford's office.
Other than that, I feel really great. I still have occasional dizziness during workout and the tinnitus comes and goes. Most of the time I can tune it out.
Will post again if anything to report.
I remain available to speak to anyone; just send me a PM.
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Life is good and so is radiation!!!!!
Singing in the rain. It's dead, it's dead. Radiation done 5/2012
Had MRI today - no new growth - tumor black not taking up contrast - no MRI for a year (2014) unless some problem arises - but Dr. doesn't think I will have any new issues. Still some swelling but that should go away before/by next MRI.
grammy slim
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Grammy Slim-
That is so awesome; congrats on the great news!
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Grammy Slim,
Awesome news!!! So happy for you. Hoping for continued recovery for you!
Best,
Petrone
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Here's my latest update on Neurontin and the spasms;
I am almost three weeks into the 28 day regimen (not sure what happens then, I think I start to reduce the dosage, but have to check in weekly w/Doc). The spasms definitely less frequent and not as strong; sometimes have twitches of mouth and/or eye for a period after, generally not noticeable only that I can feel them.
In the last week, I have had a total of 4 spasms.
The med has reduced my energy level and I think its caused me to gain a few pounds. No other side effects.
Doc has said my tumor close the facial nerves but they still believe this is a temporary thing. Cant believe I am 4 mos post GK.
Be well everyone!
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One more thing; I have posted about how wonderful docs and nurses were at UPMC.
Well it doesn't stop there. Their billing department is equally as good. I have one person to work with who is handling all of my claims and sending things back through insurance. Other than paying my initial consult copay I have paid 0!! They have all my bills on hold until insurance has totally been exhausted.
So on the back end, great customer service.
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Had my weekly call /Dr. Lunsford's PA to review my spasms over last week. They are pleased w/decline and lesser intensity. After I finish my increased dosage next week, then the plan is for me to begin a 3 week declining dose regimen. They want me to send my spasm log before I do so.
I have ramped up my exercising w/resistance training, core and balance workouts, no cardio yet as the increased heart rate seemed to bring on spasms.
I haven't had any air travel since May 17th, wont have any more for at least another month,
Hopefully they will continue to diminish and be gone after I am done w/this med. Side effect has been fatigue and inability to shed any pounds.
TGIF!
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I hope to be as good as you. GK June 25th
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Hi Dtorres-
I will be thinking good thoughts for you on the 25th! I hope you are better than me w/no side effects at all!
Spasms decreased; only 1 in the last week, so med definitely helping.
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Hi everyone-
Hers my update-
After my last post I had two spasms on June 6th, both while brushing teeth.
Then I went till June 14th, when I had two more, but 8 days, so pleased with that. My first flight since May 17h was in between the two.
Flew home on the 17th and had to turn around for two flights the next day.
Had one spasm this morning in shower.
I am not sure if the flights were the trigger, the fact that I am putting on eye makeup and washing it off or a combination of the two are the reason. Also, tapering off the Gabapentin. I still have weekly reviews with Dr. Lunsford's PA, Lana. Fly home tomorrow night.
Other than this, I feel great and really these are still minor annoyances. I cant believe I am almost 6 mos post GK and will need to schedule my first follow up MRI at the end of July.
Dtorres- will be thinking of you on the 25th, let us know how you are.
I saw another thread of costs of GK, will post there soon as I am close to final on all my insurance payouts.
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Hi all-
I thought I would give you a "prequel" of how/when diagnosed/symptoms etc. as I have had inquires on this aspect and how I reached my decision. This is more for the newbies.
I travel often by air for both personal and business. In July of 2012, after several flights, I realized my right ear felt like it was clogged up and I could not clear it. I also could not hear well. Like most healthy people, I ignored it and chalked it up to too much air travel.
In August, after a few more flights, realized symptoms still there so went to my internist and was promptly misdiagnosed with a sinus infection and sent home with antibiotics and to call if not cleared up in 3-4 days. It wasn't and I did and then was referred to an ENT doc. Had a hearing test and was at 40% or so. He prescribed Prednisone, said I should consider an MRI. Well, the med worked and a week later hearing back to 90%, so I didn't go for MRI. Fast forward to much more travel, and its now late October and same symptoms, Go back to ENT, hearing low, more prednisone, no improvement. So I go for the MRI in early Nov. More air travel and I go back to ENT the week before Thanksgiving and get AN diagnosis. Long story short, my ENT very familiar w/AN, knows 3 best options are surgery/CK/GK. He arms me w/basic info and tells me I need to do my research and call him with questions.
I discover this great organization and many helpful people and spent about 1-2 weeks talking to folks bu I pretty much had made decision of CK or GK over that first weekend.
Next phase was where and what doc.
So here we are.
I don't post often, but am always available to anyone that wants to PM me!
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Hello everyone:
GK done today at 5:30 AM by Dr. Kondziolka at South Nassau Hospital. He practices from NYU but Hurricane Sandy did some damage to their equipment. Staff was professional and comforting. I walked in very nervous about everything. My daughter, mom and dad were there with me but I had to get them out the room when prepping me for the headframe, etc because i was nervous and i couldn't put a brave face on anymore so I ask them to leave for now. While in MRI was totallly out of it. Going into the GK procedure I felt awake and had bad short dreams that felt so real. I dreamt all of teeth fell out and woke up upset but realized I did have my teeth. so bizarre. Dr. Kondziolka was absolutely the right choice for me. He credentials speak for himself and his confidence made me feel so much better about my GK choice. Right now I just have a headache, and small bandages in the pin point area but feeling good. I took a month off from work but may not need it but I will access as I go since i do have the sick time available to me. I will keep posting my days before my next MRI in six months. Thank you all for information and advice that help shaped my decision.
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Hi DT,
Congrats on making it through GK! Glad to hear that you were treated by a skilled and capable team. Now that you have braved it through an eventful day, give yourself time to rest physically, as well as emotionally. Wishing you a peaceful and speedy recovery!
All the best, Petrone
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DT-
I was thinking of you yesterday; so glad you are on the other side and had a good experience w/Dr. K. Hopefully, you will continue to do great and have no side effects down the road as the majority of people experience none.
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I know you are relieved to have GK over. I had GK on October 12, 2012. Just went back last week for MRI and tumor is stable. Doctors feel it is dying. It is not taking the contrast like it did before GK. I wish you all the best.
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Hi Cindy-
Glad to hear of your good news on your 6 mo MRI. I cant believe my 6 mo anniversary is fast approaching at the end of July.
My challenges with facial spasms took a turn for the worse last week. Doc thinks its a combo of my increased travel (8 flights between June 17 and June 28) plus tapering off Neurontin. They increased dosage slightly and asked that I continue with weekly updates. Getting frustrated w/all of this, I must admit. Trying to slow things down again, pull back on air travel and working out. Had no spasms yesterday or today so far....
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its now ten days and I'm feeling better and better. still some soreness. tired mostly. ringing is still in the ear but i'm used to it. I know its early and symptons come to surface 3 months from now...but I'm feeling good so far.
diana
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Hi Diana-
Glad you are doing well. Hopefully, no side effects down the road for you!
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My spasms have subsided!
After last round of travel, was up to twice a day. When I got home on 6/28 had a spasm bending down and another while biting into a nectarine. Had my weekly update with Dr. Lunsfords office and they increased the Gabapentin back up to 200 mg per day. The next day, had one brushing teeth in the morning, another when going to lie face down on chaise from standing position; the usual triggers.
I am happy to say I haven't had one since! Eight days, spasm free. Went to July 4th fireworks out on a boat and we were close. Had no problems.
My six month anniversary is less than 3 weeks away, time to make the follow up MRI appointment.
Will post after that, or if anything else significant to report.
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Robin ~
I'm delighted to learn that you've been able to secure relief from the spasms that have plagued you. Good luck with the upcoming MRI. :)
Jim
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Thanks Jim, but I spoke too soon;
I really hesitated making a positive post as always feel like I will jinx my luck. Well it did.
As I am sitting at my computer working, I had one. The only thing out of the norm is I was drinking a Sambazon product with the ingredients listed as follows:
FILTERED WATER, ORGANIC ACEROLA JUICE*, ORGANIC LEMON JUICE, ORGANIC CANE SUGAR, ORGANIC CAYENNE PEPPER
I have heard of avoiding grapefruit juice while on Neurontin. Can anyone find a link for this. Be interesting what doc's office says when I send them my update.
My face is still tingly as I write this.
Bummed....
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Robin ~
Bingo! on the grapefruit being a no-no with Neurontin: http://www.livestrong.com/article/51072-foods-avoid-taking-neurontin/ (http://www.livestrong.com/article/51072-foods-avoid-taking-neurontin/)
Jim
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Yes, and I am thinking the nutritional properties of grapefruit juice are similar to acerola juice.
So basically I brought this on myself...which I think is better than a random spasm attack.
Thanks.
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Well, I made my appointment for 6 month MRI for August 7th....
Doc also wants a follow up audio test and bloodwork done a week or two prior.
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Just wanted to let everyone know that so far no effects except for chronic fatigue and some pressure on my head. I plan to go back to work next week and get back to my normal routine.
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Diana-
So glad to hear you are doing well.
Spasms dropped to just two in last eight days. Still on 200mg per day of Neurontin. I have some minor dental work I have been putting off and have it scheduled for Monday.
Stay well!
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Well, I made my appointment for 6 month MRI for August 7th....
Doc also wants a follow up audio test and bloodwork done a week or two prior.
Looks like we are neck and neck.
I had my pre-MRI blood taken yesterday and I have to call in next Tues to set up the MRI appointment. Could end up having mine about the same time as you have yours. We'll compare results afterwards.
I had my annual audio followup in April and my good ear was as good as it was the year before. AN ear still dead, of course.
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Hey Jack,
Yes we are, we will have to compare notes. Wishing good news for both of us.
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Robin and AJ,
Just curious...why the blood work? Obviously, if it's unrelated to your AN there is no need to comment further, but you both make it sound like it's a routine part of post-GK evaluation. That's not something that has ever been part of my AN treatment/evaluation.
Thanks,
Petrone
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Some doctors require blood work before an MRI to make sure that the dye won't cause any problems.
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I was told the blood work is for the MRI portion to check creatine levels and make sure they're okay before the dye injection.
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I was told the blood work is for the MRI portion to check creatine levels and make sure they're okay before the dye injection.
It's to make sure the kidneys are able to process and eliminate the contrast.
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Prior answers correct.
However, when I had my first MRI w/contrast to diagnose the AN, no blood work was ordered by my ENT.
Dr. Lunsford ordered blood work prior to GK, (which also involved MRI)the day before.
For the 6 mos follow up MRI, the blood work was ordered to be done 1 - 4 weeks prior to MRI.
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Interesting to hear about the bloodwork pre MRI. I've had 3 MRI's and never had blood work done. My Gamma is booked for Sept. 11 and my MRI for August 28th (CT scan will be done day of treatment). The only thing they raised the flag on related to the metal plates I have in my wrists. Apparently the MRI required pre Gamma treatment will be stronger than the ones I've been having to track the AN growth so they needed to know the exact size of my metal plates. If they were to big I'd have to have the regular MRI. Fortunately I'm getting in under the limit by a few millimeters so I get to have the stronger MRI. Wonder if they use more die or a stronger dose? This will be worth a phone call to find out! I was told this MRI would be louder than the others - gee that's something to look forward to!
Cathie.
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I just had the blood work done pre-Gamma also. Never had bloodwork before having an MRI. GK is 7/25! :o
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There can be a big difference in MRI equipment from one facility to another.
When I tore my ACL two years ago, I had my first MRI. Room was freezing and the noise was unbearable. Then I had an MRI on my other knee and went to a different place. Their machine made knocking noises instead of clanging. What a difference!
At UPMC, for my pre GK MRI, they also had the quiet machine.
When I had to have my first brain MRI my ENT recommended a facility that has "Open Sided MRI" machines. Again, what a difference since your head has to go in the thing. In this you're lying under it and can see out the sides. Just knocking, not clanging and not claustrophobic. Nice music. Gave me juice and freshly baked cookies when it was over. Some docs may say Open Sided MRI has lower resolution, but this radiologist diagnosed my AN and had report to my ENT within minutes. This was the MRI I used to send to places for opinions as I did my research. No doctor had a problem with its quality.
My point here is to let everyone know of options in choosing a place for your MRI. There can be big differences that can make the experience less claustrophobic and stressful.
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Well, I made my appointment for 6 month MRI for August 7th....
I just made mine for August 1st.
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Hi;
"No doctor had a problem with its quality." Do you mean just UPMC Drs? There has been controversy in some spheres with open MRI vs. closed with open not having the 'Tesla power' necessary to well visualize AN. I believe at least 1.5 T is necessary.
There can be a big difference in MRI equipment from one facility to another.
When I tore my ACL two years ago, I had my first MRI. Room was freezing and the noise was unbearable. Then I had an MRI on my other knee and went to a different place. Their machine made knocking noises instead of clanging. What a difference!
At UPMC, for my pre GK MRI, they also had the quiet machine.
When I had to have my first brain MRI my ENT recommended a facility that has "Open Sided MRI" machines. Again, what a difference since your head has to go in the thing. In this you're lying under it and can see out the sides. Just knocking, not clanging and not claustrophobic. Nice music. Gave me juice and freshly baked cookies when it was over. Some docs may say Open Sided MRI has lower resolution, but this radiologist diagnosed my AN and had report to my ENT within minutes. This was the MRI I used to send to places for opinions as I did my research. No doctor had a problem with its quality.
My point here is to let everyone know of options in choosing a place for your MRI. There can be big differences that can make the experience less claustrophobic and stressful.
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Hi;
I thought they could power back the larger machines?
Many are performing MRI with cochlear implants in place. They always used to surgically remove the implant and reinstall it.
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Hi;
I think originally, this was a Hopkin's complaint?
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In addition to Dr. Lunsford at UPMC, copies of this MRI were given to Dr. Friedman at House, Dr. Chang at Stanford and Dr. Kondziolka at NYU. When I go back to Open Sided MRI on 8/7 I will ask about the terms you mentioned, I am not familiar w/this.
"No doctor had a problem with its quality." Do you mean just UPMC Drs? There has been controversy in some spheres with open MRI vs. closed with open not having the 'Tesla power' necessary to well visualize AN. I believe at least 1.5 T is necessary.
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Hi;
The issue was controversial several years ago as I recall an NF-2 pt. tried on open MRI, but moved to closed MRI as Drs. were not satisfied with the images. That was at Hopkins. I believe the machine at the time had 1.0 T.
Maybe the machines were changed to produce greater magnetism? I'm unsure if distance to the magnetic field was a factor.
Seems there also exist scanners where one stands up in?
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I have heard of the stand up ones; did not run across facility that had them.
At any rate, even if my open sided MRI was 1.0 or less, I have a small AN, it detected it.
The radiologist's written report was very detailed. The CD I sent to all 4 docs was prominently marked with the name of the facility; "OPEN SIDED MRI of Laguna Hills".
So here we are.
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I forgot to add that the Radiologist's report clearly said:
"The study was performed using a Hitachi Airis Open MRI unit." There much more detail written on the findings.
When I go back for my 6 mo follow up I am going to ask which model and some more questions. However, I am satisfied that the machine and radiologist provided accurate details. It may be similar to GK in that there are many centers but what's more important is the experience of the doctor.
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Hi;
I wonder if the expectation for MRI isn't higher for NF-2 ANs as the nerves are positioned differently in the tumor capsule? I've had a local MRI rejected by Mayo Clinic.
The other two instances I've heard of, both included NF-2 pts. who were post FSR.
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Well today I went for my blood work and audio test.
My last audio was in early December; hearing was at 40% then. I know it went down from that time till GK in late December. It has continued to decline, as evidenced in audiogram today. But to me it wasn't usable in December, so worse really makes no big difference to me. I can tell it continues to fluctuate and my ENT offered another round of Prednisone since it has responded well before to this regimen. Before I start it, will check in w/Dr. Lunsford for his opinion.
Six mo MRI to follow on Aug. 7th.
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Update on steroid; Dr. Lunsford said If ENT thinks it would help with my hearing, then there is no harm to take it from a neurological perspective.
So starting it today, will report back. I have only had 4 spasms since June 30, so looking better!
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Had MRI this morning; have disk, wont have report for a couple of days.
I wont even try to read it; wont have radiologist report till Friday. Not my expertise and don't want to speculate. Seeing my ENT for follow up audio tomorrow, so will see if he can; otherwise will wait to hear back from Dr. Lunsford next week.
Finished steroid round, hearing improved ever so slightly; not materially, so it is what it is. May try another round as I don't have any side effects from it.
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Hi All-
Here's my 6 mo post GK/MRI update:
My facial spasms down to 1-2 per week with the same triggers; brushing my teeth or turning over or suddenly lying face down from standing up. Still on 100mg of Gabapentin 2x per day. Doc says to continue.
Went back to ENT for another audiogram after the steroid round and hearing improved a great deal; still not good enough for word recognition. Both ENT and Dr. Lunsford say ok to very occasional repeat of this but its not a long term solution.
Tinnitus mostly off, not noticeable enough when on.
When I got the radiologist report from the MRI I was very alarmed as it indicated 6mm of growth; in his words"there is now a significant extracanicular component to the porus acusticus contacting the pons measuring 10x9 mm and transverse 20.7mm. On prior exam this measurement was 13mm". Note that MRI when I had GK had it at 6mmx8mmx14mm.
Needless to say, freaking out and sent to Dr. Lunsford. I called his PA as I was scheduled to go to review when he returned on August 19th. Lana said he may be in the office on the 16th and she's try get him to review then. Well he did, here's what he had to say:
I am not certainly opposed to using a trial briefly of corticosteroids if you note fluctuation in hearing, but in general, it is not a good long-term solution. As you know, it is our hope that hearing can be stabilized. In addition, we hope to stabilize further tumor growth. Approximately 4-5% of patients will have some measureable temporary volume enlargement of the tumor in response to the maximal time of radiosurgical treatment. This will stabilize at this level or shrink more over the course of an additional period of observation. There is a long-term 98% chance of tumor-growth control.
I would get a new scan done again in one year. Overall, we are quite comfortable with the current appearance. There is no evidence of any reaction or edema.
He also said to continue with the low dose Gabapentin.
Needless to say, not warm and fuzzy like his PA, but that's not his style. I still have questions, so going to have a call with him this week and will report back any details.
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Hi All-
Here's my 6 mo post GK/MRI update:
.....
When I got the radiologist report from the MRI I was very alarmed as it indicated 6mm of growth; in his words"there is now a significant extracanicular component to the porus acusticus contacting the pons measuring 10x9 mm and transverse 20.7mm. On prior exam this measurement was 13mm". Note that MRI when I had GK had it at 6mmx8mmx14mm.
Needless to say, freaking out and sent to Dr. Lunsford. I called his PA as I was scheduled to go to review when he returned on August 19th. Lana said he may be in the office on the 16th and she's try get him to review then. Well he did, here's what he had to say:
I am not certainly opposed to using a trial briefly of corticosteroids if you note fluctuation in hearing, but in general, it is not a good long-term solution. As you know, it is our hope that hearing can be stabilized. In addition, we hope to stabilize further tumor growth. Approximately 4-5% of patients will have some measureable temporary volume enlargement of the tumor in response to the maximal time of radiosurgical treatment. This will stabilize at this level or shrink more over the course of an additional period of observation. There is a long-term 98% chance of tumor-growth control.
I would get a new scan done again in one year. Overall, we are quite comfortable with the current appearance. There is no evidence of any reaction or edema.
He also said to continue with the low dose Gabapentin.
Needless to say, not warm and fuzzy like his PA, but that's not his style. I still have questions, so going to have a call with him this week and will report back any details.
Well, if Dr. Lunsford found no cause for alarm I'd try not to yourself. Research does seem to indicate some do swell more after treatment. Dr. Warnick at the Mayfield Clinic (the guy I'm going with) said this can be a good sign. Your doctor using the term "quite comfortable with the current appearance" seems like a positive imo.
Good luck and God Bless.
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Hello;
I believe some Drs. will give the diameter of the AN in one report, then tumor volume in another report. Tumor volume will be a much larger number. This has confused some pts. and group members from another group I was on.
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Hi;
Dr. wrote: "I am not certainly opposed to using a trial briefly of corticosteroids if you note fluctuation in hearing, but in general, it is not a good long-term solution."
Absolutely correct. Steroids are hard on internal organs and many Drs. Rx them but once a year. It's treating the symptom and not the cause.
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Well after more emails and lengthy discussion w/Lana, the PA and her back and forth w/Dr. Lunsford (who I never actually did get to speak with), I am comfortable with his review. I did ask why not concerned since radiologist indicated "significant growth". She said the change is in the volume, was reviewed by the entire GK team at UPMC and all concurred change in volume at 6 mos is not a concern.
We discussed my spasms (none since 6/11, longest record so far) and I am to continue on 100mg of Gabapentin 2x daily until I am spasm free for a month.
Another steroid taper OK if I notice ongoing fullness in head and ear. No more than a few times a year.
The other recommendation is to have a local neurologist to do a neurological review with my history of spasms, and especially since I had Bells Palsy some 15-20 years ago. Will do that in next few months.
So MRI in a year. I am OK w/this.
Life back to normal, working out 3-4 times per week, travel greatly reduced for next few months.
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Meant to say no spasms since 8/11, not 6/11 (I wish).
Anyway, that nearly 3 weeks so hopefully will have a month of no spasms and will try to stop the med.
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Good news to report-
I have been spasm free for one month!
Although travel greatly reduced, I am back to working out; Cardio and weight training 3-4 times per week and no dizziness. Balance is as good as it ever was.
Tinnitus nearly non existent and when it is hardly noticeable.
Still have the occasional fleeting pain in bony area behind AN ear. I asked Dr. Lunsford about this and continuing w/Gabapentin. Will post his response.
I remain available to speak or email with anyone that wants more details about my experience. Just PM me.
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Wonderful news Robin! Keep us up to date.
Cathie.
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I had a call back from Lana, Dr. Lunsford's PA today.
They reviewed my scans again and don't see anything specific that would cause the passing pains I mentioned. She did say it's likely the trigeminal nerve is irritated from the GK. Like the spasms, they believe it will pass.
I was advised to stay on the low dose of Neurontin for another 60 days and check back in at that time if still free of spasms, sooner if they resume.
They still recommend I see a local neurologist for a baseline evaluation. Once I find one, I will do so.
So unless anything specific to report, I will not be posting further.
Thanks to all for the encouragement and support.
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Well, after six weeks of no spasms, I had a slight one yesterday.
What I mean by slight is that my eye was not all the way closed and muscles not as tight as full spasms. Also, did not go down into the neck muscles. Had a little tingling and eye twitching after.
All in all, not what I would call a big deal.
Had a physical with my PCP this week. He was amazed at how good my eye hand coordination and balance were.
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I saw a local neurologist today for an eval. All good; no issues related to adjacent nerves related to AN.
He did make a comment when he saw my MRI disks were from an open sided facility. However, once he saw the scans he said they gave the data needed and found no issue with them.
For those that need good news, I can say that having an AN is not a life changing episode for me. Other than hearing, occasional tinnitus my life is the same as before. I wish my knees were in better shape!
I missed no days from work due to the AN and GK (other than for day of procedure and travel to Pittsburgh). I work 50+ hrs a week with extensive travel. I work out 3-4 times per week. There is no new normal, same as it was!
I wish everyone good health!
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I am happy to report that I have had another month of no spasms or any other symptoms.
Will be contacting doc to see if I should discontinue the Gabapentin.
Have also been doing some air travel, although not as heavy as the spring.
Here's to continued good outcomes for all! :) :) :)
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That's wonderful news Robin. I hope that's the end of the spasms!!
Cathie.
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Robin,
So happy for you. Hope everything continues to go well.
Cindy
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Latest update from Dr. Lunsford's office:
Reduce the Gabapentin to 100mg 1x daily. However, if air travel picks up or cardio workouts more frequent, and/or increased/new stresses, take another 100mg in the evening.
I just got offered and accepted an incredible new job, so that will increases stress, but I won't have to be on a plane a dozen times a month. So maybe they will cancel each other out. However, travel will be more local, which means spending time on LA freeways.
Just life...I can deal w/that.
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Hi Robin,
Congrats on the new job and on feeling good! Career stress feels so much better than AN stress.
Adam
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Thanks Adam; I hope you are feeling well.
Started reduced dose of Gabapentin 100mg 1x daily.
Had an eyebrow wax and facial yesterday with no tingling or twitching, let alone a spasm, so that's good!!
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I cant remember if I ever posted this anywhere.
I had Bells Palsy almost 20 years ago. I had no records and could not remember if it was left or right side. All I remembered was which emergency room I went to and that the doc I saw prescribed Prednisone. I had no further tests as it began to subside in a week and was gone in less than a month. The emergency docs recommended a CT, but I don't think I ever did it. I did see the neurologist for follow up and additional Prednisone.
When the AN journey started, all of the docs guessed it was the right side, same as my AN.
I contacted the hospital system to try and find the records and they just arrived this week.
Lo and behold, the Bell's Palsy was on the left side, although I did report numbness and tingling on the right according to the records. But perhaps that's because my left side was paralyzed from the Bells'.
I was trying to find some correlation, but there is none that I can see.
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Good news; another month has gone by with NO SPASMS, not even a twitch!!
Travel has been minimal but I have two flights tomorrow so will take an extra dose of gabapentin tonight. New job going well.
The only thing new, noticeable is that I am getting headaches several times a week, pronounced on the AN side. Tylenol provides immediate relief but I emailed UPMC for advice. Also asked them if I should get another MRI before next July.
Still fluctuating tinnitus, bad hearing on AN side, nothing new.
Will post again if anything to report.
Be well everyone.
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Excellent news Robin regarding the spasms! Hope you continue to do well. With any luck the headaches will disappear as well.
Cathie.
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Congrats on being spasm free, Robin! Keep grindin'.
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Thanks Adam and Cathie for the support; hope you are both well.
I heard back from Lana in Dr. L.'s office today. They said no immediate concern over the headaches but if they persist will authorize MRI around my 1 year GK anniversary. (probably more for my own piece of mind) Also I can start trying to reduce gabapentin to every other day and to gauge my reaction and stress/travel levels and adjust accordingly.
Happy Holidays!
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With Thanksgiving approaching I just realized I rec'd my diagnosis one year ago and was spending this weekend (albeit the holiday was earlier in 2012) frantically researching treatment options.
I was trolling this forum like most do before having the courage to register and make my first post.
My news of AN was given to me on 11/16/2012, the Friday before Thanksgiving.
I was able to send off my MRI's to various places the day before Thanksgiving so they would have them the Monday after. By then I had almost 100% ruled out surgery and was able to enjoy time with my family.
By Christmas, I had my appointment ready to go to UPMC.
So here we are, the weekend before Thanksgiving again, one year later.
I wish everyone a happy holiday season. Take time away from your AN and enjoy the holidays with family and friends!
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I too, had gamma knife with Dr. Lunsford. I am nothing but 100% satisfied with the whole experience. I had a small round of slight vertigo for a couple days, about three weeks after the procedure, but since then I feel great. I have a small amount of numbness/sensation on the AN side of my face, but nothing I can't live with. My AN was 2.8cm and very cystic.
Great news for you! Good luck moving forward.
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Time for an update of more good news;
No more spasms!!
I was a little nervous as over the last 5 days I had six flights; so added stress of that plus missing connections and delays. I did feel a little tingly and tightness in my face a few times, but that was the extent of it. Prior to trip I increased the dosage of the gabapentin to 100 mg 2x daily. Will go back to 100 mg 1 x every other day.
Happy Holidays and best to all for 2014.
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Hi Robin,
So very glad to read your travel is behind you and that you are seemingly spasm free!! That is fantastic--and hopeful--news!! Your updates are welcomed and appreciated.
Hope you are great, great, great.
P.
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Congrats on being spasm-free, Robin! It sounds like you've turned the corner and you're post-GK lifestyle is awesome!
Are you having your one-year MRI in January?
Adam
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Great to learn of your successful outcome Robin. Very best wishes to you too for a joyous Christmas and continued success in the New Year.
Derek
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Thanks all!
I am not sure when I will have next MRI; doc said a year from the 6 mos, which would be 18 mos from GK. When I was having all the spasms and the amount of swelling shown on the last one, I was thinking in Feb, so 1 year after GK. Doc will support that if I want to do so.
Being I feel really good, I may wait. Hearing and tinnitus fluctuate, but the AN side hearing is bad, difficult or rare word recognition.
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Hi Robin,
Congrats, on your continued recovery and positive outlook! You've set a great example on this forum of someone who has weathered the adversity of post-GK side effects with courage and aplomb. I found strength from your shared experiences and I hope others who have or will opt for GK will read your journal to help find the courage within to get through these and other post-GK side effects.
Thank you!
Petrone
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Hey Petrone-
haven't heard from you in a while; hope all is well with you.
P-
a little more travel; flying to Vegas tomorrow and mtg up w/family for Xmas; hopefully my luck will continue and I will return w/more $$ then I arrive with! Should be interesting to see if the noise or obnoxious people in the casino bothers me; if it does I can turn a deaf ear (hahaha; a little AN humor).
Going to up the dose of the gabapentin again starting right now...
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Yesterday was my one year anniversary from becoming a postie toastie and having GK.
I knew it was coming, but I was so busy I completely forgot about it! I think that's really good.
Not one spasm since Sept. 15th and the previous one was Aug 15th; so 1 spasm in over 5 months. No headaches, no twitching,no numbness. I now consider this whole thing behind me.
I had a follow up call w/Dr. Lunsford's office. They suggested I completely stop the Gabapentin,, which I had except before a flight. I had two trips last week and only took one. To my surprise they also would not order an MRI. They said since everything normal for me and only improvement I should wait till August, one year since my last MRI. He says the contrast/dye/whatever its called is too harmful to kidneys long term.
So I am OK w/this.
Life is back to normal pre AN and pre GK for me. (My hearing was getting worse prior to diagnosis, so this is my old normal)
For all of you newbies deciding on treatment, PM me any time, I will respond quickly.
Be well everyone.
-Robin
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Due to a broken crown I have had lots of dental work last few weeks; Novocaine, xray, lots of drilling. Of course on upper AN side.
Fortunately, no spasms or other ill effects. I took the Gabapentin night before and morning of. Other than that, off the med entirely now for a month!
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Robin: HURRAY! Besides the need to go through all that gruesome dental work, I'm glad the spasms seem to be behind you. Here's hoping!!! P.
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Hi Robin,
Not fun having all that dental work done and what luck that it would be on your AN side.
Glad to hear that it didn't trigger any facial spasms and they seem to finally be gone.
Keeping my fingers crossed they don't return!
Cathie
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Hi Robin,
I have an AN & I'm on the fence about whether to have surgery or radiation. And I don't even know what kind of radiation.
I was just told 6 days ago that I need to do something but at this time I'm exploring. You said you did a lot of research & I would so greatly appreciate knowing what you found out. Anything you can tell me would be helpful.
Thanks,
Joanne
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Hi Joanne-
Please send me a PM or call/email me directly any time. As I said, making the decision will be the hardest part!
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Hi all-
I have nothing new to report; that's a very good thing!
Life is normal, although I may decide to try a hearing aid at some point after reading other posts.
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Hello Robin.
I read your story before I had my Gamma Knife and I want to thank you. Your story made me less anxious. Thanks.
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Hi Dan-
Glad you found it helpful.
Hope you're doing well.
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I havent posted in a while, but nothing to report. All is good. No news is good news!
Going on a European river cruise in September, will schedule next MRI after we return.
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Back from a great vacation; wonderful time, no issues with anything over the long flights. Yesterday was 1 year since I had a spasm. Going to schedule next MRI for some time in October and will report back once Dr. Lunsford has reviewed.
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I had my MRI last week; radiologist report said no change in size, didnt mention the magic "necrosis" word. Said tumor appears to be stable.
Sent the report and disc to Dr. Lunsford, will see what his review says.
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Woohoo! Congrats on the good news! For whatever its worth, none of my MRI reports have ever mentioned "necrosis" or any related synonym. Its always just a blunt string of technical phrasing meant for other providers. Dr. Lunsford has also never used the phrase "necrosis" with me, but instead uses more conservative language like "no evidence of growth" or "seeing changes in appearance". The only reason I know my tumor is looking "blacker" is by seeing the MRI images themselves first hand. Lunsford always keeps it pretty dry and even keel as you might expect.
Adam
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My MRI reports don't mention necrosis either. Just describes the "enhancing extra-axial mass" and gives the dimensions.
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My reports from the radiologist are always a little different from the surgeons. I think the radiologist know the surgeon is going to look anyway so they don't put much into it. Just my opinion. Here's a summary on 4 years between the radiologist and UPMC. The same but, different.
Initial MRI. Radiologist: 1 1/2 page report with size and other things.
UPMC: Same as radiologist.
1 year post GK. Radiologist: 1 page report, same size and stable.
UPMC: Slightly smaller with darkening in center, brain stem looks good.
2 year post GK. Radiologist: 3/4 page report, same size and stable.
UPMC: Definite shrinkage and brain stem looks very good.
3 year post GK. Radiologist: 1/2 page report, same size and stable.
UPMC: 2mm smaller , coming off brain stem.
4 year post GK Radiologist: 1/4 page report, same size and stable.
UPMC: Continued shrinkage , 3mm smaller continues to come off brain stem.
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Interesting, thanks for posting. This is only my 2nd post GK MRI. My last radiologist report had me worried but then it turned out UPMC was satisfied w/it and not concerned. Will post again when I hear back.
I guess only us AN'ers use the word "necrosis".
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I haven't read through all your posts to know if you look at your own disk or not. I always look at mine and measure and do all that stuff. They usually show darkening in the center at first then that kind of goes away. After time they seem to get whispier, if that's a word. I also measure and can tell it's smaller so hearing that from the surgeon also, is always good. My point to all this is: just don't get too rapt up in all the tech stuff. If everything is fine they will tell you that. Relax and don't stress over size and "necrosis". LOL. I have a hunch you'll be just fine. B.
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So here's the response from Dr. Lunsford:
While I think that tumor imaging follow up shows minimal tumor volume increase, which we see in about 4-5% of patients, there is no evidence of continued activity or growth. There may be delayed shrinkage over time. Unless there are any new clinical symptoms, we could probably get a new MRI scan in a approximately two years, or sooner, if you feel like there are any new concerns.
At this point I consider my case closed as I had already moved on prior to this based on how I feel. So unless things take a turn for the worse, I am done w/the discussion board for the next two years. I am grateful to everyone that helped me on the way.
I will always respond to PM's and to those that contact me through the WTT list.
-Robin
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Good stuff. See you in two years when we're all driving flying cars.
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Hi Robin,
great news. Your latest MRI report is about the same as mine. GOOD NEWS!!! My doctor has me getting another MRI in 12 months so, in March, I am positive it will continue to be great news.
Bonnie
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Thank you for posting this thread. It has been very informative for those of us considering radiation.
As you know, it can be a difficult decision process choosing between radiation or microsurgery. Each has their own set of "pros and cons."
Glad to see everything is going so well. We're looking forward to hear about your 2-year successful update!
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Thanks for the journal and thanks for putting the link to it in your signature. Very helpful!
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Well I have been off the forum for a little over two years, although I continue to connect w/people that contact me through private messages or the WTT list. Yes no news is good news. Life is great, working usual 60+ hours a week, however we now take a 2-3 week vacation. Last three cruises and just booked another for 2017.
I had my 2 year MRI yesterday and sent the disk off to Dr. Lunsford. Will report back when I hear from him. Still have constant tinnitus and no usable hearing on the AN side. Used to it now.
Still carrying around excess weight, started new regimen with a personal trainer/coach and dropped 7 lbs so far.
When I hear from Dr. L I will report back. Best to all for a wonderful 2017!
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Cruise on my fellow UPMC AN alum. :) :)
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Thanks for the update, Robin. Please let us all know what Dr. Lusford reports back. I know it will be good news!
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I did get the radiologist report; says tumor unchanged. Will see what Dr. L. says.
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Email from Lana today saying "Dr. L evaluated my images....everything looks good, you will get his official letter soon."
Those of you that had treatment with Dr. Lunsford know that his letters dont say much more, other than when to get my next MRI. If I hear anything different, will update.
So good news, but I'm still wishing I heard there were signs of necrosis! I just realized over 4 years since my diagnosis and almost 4 years since GK.
Cathyroe- hope your spasms easing up; call or email me any time. Same for anyone else that reaches out through this forum or the WTT list; I will always respond asap.
Be well everyone!
-Robin
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Good news Robin!
My spasms have gotten much worse in the past week. Like 10 a day! I started the gabapentin, so we shall see. The weird thing is, I was only having like 2 or 3 a day until I started the gabapentin, and now they seem to be just all day long. If I eat, drink, exercise, talk.... wham! Spasm!
How long did it take for your drugs to kick in when you took it?
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Good news Robin!
My spasms have gotten much worse in the past week. Like 10 a day! I started the gabapentin, so we shall see. The weird thing is, I was only having like 2 or 3 a day until I started the gabapentin, and now they seem to be just all day long. If I eat, drink, exercise, talk.... wham! Spasm!
How long did it take for your drugs to kick in when you took it?
Cathy-
I kept a detailed journal of the spasms, I had a weekly review with Lana during this prioed until they finally stopped in Agu/Sept. They definitely started to get weaker and less frequent as I ramped up the Gabapentin. What day and how many mg are you up to?
I will PM my journal to you; TMI for this thread.
-Robin
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Thanks Robin,
I wish Lana had asked me to check in with her at all! She didn't offer me weekly telephone meetings, or any further communication. Maybe I'll just email it to her anyway.
Thanks so much for letting me see your journal. At least I will have something to compare to.
I started the gabapentin 6 days ago and am now up to 100. Mg. 3 times daily.
I am trying to make an appointment with a neurologist. So far, the soonest I can see one locally is 3 months from now!
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I started the gabapentin 6 days ago and am now up to 100. Mg. 3 times daily.
Hi Cathy-
It seems like your dosage hasn't ramped up yet; I increased gradually to 400 mg 3x daily by day 17; started at 100mg 2x then 3x, etc. So maybe you haven't given it enough time. Push Lana for weekly consults via email or phone.
I did see a neurologist during this period, they found nothing.
Hang in there and reach out any time for support.
-Robin
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I am just a few days shy of my 4 year anniversary post GK and received the following from Dr. Lunsford after reviewing my MRI.
Thank you for your recent communication and the opportunity to see follow up imaging studies. You underwent gamma knife radiosurgery 4 years ago. We are pleased that the tumor is stable if not slightly smaller, with no evidence of recurrent growth. We are very pleased with the current appearance, and would like you to get a new scan done anywhere from 2 - 4 years, if all symptoms remain stable.
So happy with this outcome, and I have lost 12 lbs!
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Wow! Fantastic!
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Hi Cathyroe-
Thank you and I hope your spasms have subsided; haven't heard from you in a while;
For me life is normal and am leading a more healthy and fit lifestyle overall and as a result have now lost 38 lbs; 32 to go to hit goal!
Be well!
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Hi Robin,
Delighted to read that you are doing so well. Thanks for posting the update. Always nice to see how others are doing that had GK in and around the same time I did. I'll have my 4 year GK anniversary this Sept. and I'm also doing great.
Congrats on the weight loss!!!
Cathie
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My 5 year diagnosis/treatment anniversary came and went with no fanfare. That's a good thing!
I'm amazed at how many times this thread has been viewed!
Life is better than good, I have lost almost 80 lbs!
Be well everyone!
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That's fantastic news!! Congratulations and continue to be well.
Stella
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Thanks Stella-
For all the newbies, life can get better as you go through this experience. I wrote an article in the current ANA newsletter, Notes, about how my new normal is better than before. Down almost 84 lbs and in the best fitness shape I have ever been in my entire life (and I am 63!)
I remain on the volunteer list, please dm or reach out through the contact info provided through ANA.
-Robin
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Wow I haven't been here in a while but this thread has been viewed 8,000 more times since the last time I posted an update!
I continue to be very well; reached my ultimate goal weight of 125 lbs; I lost a total of 91 lbs and I still strength train and/or do cardio 6 days a week.
Life is good!
-Robin
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Today is my 6 year ANniversary for my GK treatment. WOW!
I continue to be amazed at how many times this thread has been viewed.
Just checking in with the AN community to celebrate this milestone. I continue to be well, and my Mantra is I Am Healthy and Fit; 64 is the new 24!
I have lost over 90 lbs in the last two years and my fitness level is beyond anything I ever did when I was 24. I work full time, travel 2-4 times a month, strength and cardio train almost every day.
I asked my personal trainer some time ago if my AN had any impact on how we trained and how he made nutrition recommendations for me and he said (konversionfit.com):
“I can’t say anything has impacted any of your journey with me. I think the recommendations that are given can be used for everyone:
1. Exercise to the best of your ability
2. Eat mostly whole foods
3. Focus on energy, mood, sleep, digestion
4. Get better over time (stronger, more athletic, more aesthetic)
5. Stay in your own lane (don’t compare)
6. Anyone with any dysfunction, disability, regardless of gender, age, etc. can get better”
I shared this day with the ANA milestones, so you can see what I looked like undergoing my GK procedure and today. That's why my new normal is so much better!
Wishing everyone good health!
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All good Robin, inspirational, thanks for the updates!
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What an inspirational post Robin --- Thanks for sharing!!
It's so inspiring to hear of your improved fitness and amazing 90lb weight loss (over 40kgs in my language).
I am keeping a note of your excellent 6 point summary..esp no.6 :)
continued great health and fitness...
Stella
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Thanks Freelander and Stella; glad you found it helpful; hope you're doing as well!!
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Well, 6.5 years post GK, 7 years since symptoms began.
Had MRI a few weeks ago and report from Dr. Lunsford said:
"Dear Robin:
Thanks for the opportunity to see your follow up imaging studies. It has been almost 7 years since you had gamma knife for acoustic neuroma. I very much enjoyed your note and the Acoustic Neuroma Voyages article you wrote last year. The tumor, of course, has gotten smaller since the time of gamma knife, and there is no evidence of new activity. Delayed activation or growth of this tumor would be highly unexpected. We hope that you continue to do well. I think we have a hearing test with a 40% speech score last reported in 2017 and we would still like to keep a long-term look at this time even though we know this is not useful hearing.
When you get a new MRI scan maybe in 4 years, perhaps should get a new hearing test to see where things stand at that point.
"
I keep this thread going because I want people to see great outcomes are possible! Still in the best health and fitness shape of my life. Strength and/or cardio train 6 days a week, working FT, travel for business and pleasure 40% of the time! My mantra is 65 is the new 25!
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Robin thanks so much for posting this update. So encouraging to hear about good outcomes. Even more impressive is your dedication to fitness. You have inspired me to re- commit to my own weight loss and fitness goals despite being over 65.
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Thanks for the kind words notaclone13!
You have inspired me to re- commit to my own weight loss and fitness goals despite being over 65.
If I could give one piece of advice on your weight loss and fitness goals....don't think despite being over 65! I truly believe age is not a factor in a lifestyle change based on my experience. Its the will and commitment to do it! So I say YOU CAN DO IT!
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Happy ANniversary to me; its been 7 years since my GK treatment. Im healthier, fitter and stronger than ever. I'm amazed at how many times this thread has been viewed. Feel free to DM or contact me through the ANA as I am a Peer Network Volunteer.
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Congratulations Robinb. All your post provide great encouragement. Thanks for sharing your journey with us. Y
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I am having GK in 2 weeks and have been reading as much as I can about others experiences. Its been terrific to read about your journey Robinb, it’s given me hope that things can work out well ;)
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Hi Smags1975
So happy to hear you found it useful; thats why I keep it alive! I want people to know life goes on, gets even better despite the AN and any short term complications and permanent issues such as SSD and tinnitus. Wishing you all the best for just a great outcome. Feel free to reach out direct any time!
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Happy ANniversary to me! Just passed the 8 year mark since my Gamma Knife!
Just got 1st dose of Covid vaccine too.
Life is good!
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Happy ANniversary to me! Just passed the 8 year mark since my Gamma Knife!
Just got 1st dose of Covid vaccine too.
Life is good!
Great for you! Wishing you all the best. Did you get the second dose of the vaccine and did you have any side effects? Did you have any issues with the face?
Which vaccine did you get?
Thank you!
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Happy ANniversary to me! Just passed the 8 year mark since my Gamma Knife!
Just got 1st dose of Covid vaccine too.
Life is good!
Great for you! Wishing you all the best. Did you get the second dose of the vaccine and did you have any side effects? Did you have any issues with the face?
Which vaccine did you get?
Thank you!
Thank you!
Yes had the 2nd dose, and no side effects at all, arm a little sore the next day, nothing else. I had the Pfizer vaccine.
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Wow, another milestone come and gone; my 9 year treatment anniversary was in January. All is well!
I am a Peer mentor, so you can reach me for support through there or a DM here.
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Congratulations, robinb, on your 9-year treatment anniversary!
That should encourage all of us!
And thank you for your offer of support to the AN community.
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Congratulations, robinb, on your 9-year treatment anniversary!
That should encourage all of us!
And thank you for your offer of support to the AN community.
Thank you!
How do you like the CROS; did a consult for one, but decided not worth it to me.
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Hi robinb!
My bad ear is my left ear. And prior to getting my CROS hearing system, whenever I pulled up to a drive-through restaurant, I could not understand what they were saying. I couldn't tell if they were saying, "You can order whenever you are ready," or if they were saying, "hold on for a moment." My good ear was inside the car, and it couldn't hear well enough. I would place my order as soon as I drove up and hope that they didn't ask me any questions like "do you want fries with that?" If they did say something, I couldn't understand if they were asking if I wanted sauce with my order or if they were telling me what the total amount was. So, ordering from a fast-food drive-through was miserable!
The first thing I did after getting my CROS system was to go to Taco Bell and make an order from the drive-through. I could understand everything perfectly! I almost cried!
But what made me decide to purchase the system was a problem I had at work by not hearing correctly. I serve as a hospital chaplain. And one time I was visiting a patient (with my good ear towards the patient). I asked her husband what his name was because I wanted to pray for him as well. I thought he said, "Danny" when he actually said, "Randy." So, in my prayer, I prayed for Danny. After my prayer, the husband was irate that I prayed for Danny. I soon discovered that Danny was the name of the patient's ex-husband. Oops! I decided right then that I needed to purchase the CROS system, even though it was very expensive. But if I did not buy it, I might not be able to continue in my job.
So, that's a long answer for your simple question! Yes, I love mine! But my wallet still hurts!
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Happy ANniversary to me!
Today I passed my 10 year anniversary for my Gamma Knife treatment at UPMC.
As I've posted before, minor side effects in my 1st 6 months, but smooth sailing since. Life with SSD and tinnitus not that big a deal. Although I did try out the CROS hearing aid last month. It didn't do much for me, found it more annoying than helpful. I just couldn't justify the cost. However, if having it would help me at Cross Fit like being unafraid to do box jumps again or wall walks, I would have bought it!
Be well everyone!
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Yay! Congrats on year 10! That is great news! It's especially encouraging for those who are considering Gamma Knife.
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Hello robinb, Congrats on your recent MRI report. I am also a UPMC alum having my GK in 2010. I was on these forums way way back but I remember your name from then. I just had my 12 year MRI and got to wondering if the ANA forum was still going and lo and behold here it is. My last MRI was 5 years ago. It was about half the original size at the 8 year mark and this recent one shows it being the same. Really can’t beat that UPMC team. Good to see some long term veterans still keeping it alive on the forum.
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Hi Rupert!
I remember you from 10 years ago. Glad to see you're still around and doing well, I hope.
I keep this thread going to keep showing people life goes on and can even be better. SSD and tinnitus no big deal for me. In the best health and fitness shape of my life.
Be well!