Thank you all for all of your knowledge and "going first".
I am 99% sure that I will have my MVD on June 18, 2013. I think that I have done my due diligence, selected a great NS, and read a ton from people like you. However, I have a lingering question about a potential side effect of the surgery- Hearing Loss. My NS says that it is the "least rare of the rare" side effects and hearing loss does not mean going deaf in that ear. Rather, he explains it as loss on a continuum, which could include things like being tone deaf. As I am not a musical type, I am ok with that relative to the pain. But I would love to hear from anyone who has had hearing loss and what that is like for them.
I have hearing loss, though is it not from an MVD. It feels odd at first but there are options if it happens. I am deaf in my left ear and wear a hearing aid. There is also a cochlear implant, though that is quite a bit more expensive. Both work well. And if you don't do anything about it, if you do get it, you get used it. I don't remember what its like to hear but the main thing is to make sure that you are on the side of people where your good ear is and try not to blast your remaining nerves/hearing with music and make it worse. Being hearing impaired> Pain from Trigeminal Neuralgia.
I’ve been on here and to local support group meetings for two years…met 1 elderly woman who had one ear deaf from mvd…and read here of about 5-10 who lost some hearing…out of thousands…I will never forget dr. Casey whispering in my ear first thing I woke up! Best sound I ever heard. …though manyyy of us do have muffled hearing for weeks after.
Following my MVD, I had some hearing loss on my MVD side and greater loss along with tinnitis on my non MVD side. Neither lasted long and my hearing is now as it was pre MVD.
Throughout my MVD my hearing was monitored by and audiologist.Although both he and my neurosurgeon were sure my hearing was not compromised, I too had a feeling of fullness , and diminished hearing in my right ( MVD) side that lasted two months. Everything has since cleared up and is back to normal.
Hearing loss from mvd is a fairly rare risk, it is a risk however.
In all my research prior to my mvd I came across one person who had reduced hearing as a result of his mvd.
Most will have the ear fullness effect which goes away after some time.
I had it, it started on day 3 post op and lasted 3 weeks approximately. To be honest it was very annoying. I could barely hear out of that ear. It feels like you’ve been swimming and your ear is full of water and can’t get it out. It does resolve though.
My hearing has been fine since, I am 7 weeks post op.
Thank you all with helping me wrap my head around that one. It sounds like you are all doing well. One last question if you are all still following.... I am pretty intellectually confident with my decision, and emotionally pretty on board as well. But, should I be expecting a freak out moment before the surgery? I know everyone is different, but I feel like I should be more scared. thanks all
Well - you should have seen my postings every day in October of 2011 - I was soooo freaked out -Seeking so much reassurance
Mostly because general anesthesia makes me the most nervous.....
Some people are in so much pain they want to run into the Operating Room and don't think twice....some are cool as cucumbers - If you trust your surgeon - and surgeon does a fair amount of MVDs -- worries should be smaller. I'm a worry wort - so that was my perspective - But it all worked out!
My top surgeon said that MVD - on a scale from 1-10, as far as dangerous, life-ruining, difficult, complicated.... is a ONE!
A ten would be more of spidery vein-like tumors, blood clots, bleeds of the brain....real rough stuff.
My surgeon said the same about the difficulty of an MVD. He said it is one of the easiest surgeries he performs. Of course that is easy for HIM to say, we are the ones having the surgery. But it is good to hear.
Hi Kassie, I am already 75% deaf in both ears and my NS did warn me that deafness is one of the risks of MVD, however he did advise that he would be particularly careful with me to ensure no further loss was made and I am pleased to say that I have not had any subsequent loss of experienced any hearing difficulties post MVD.
My advice to you would be to mention your concerns regarding this to your NS because I really do believe that it comes down to the skill of the surgeon.
I have also posted a number of discussions on my MVD experience which you may find interesting.
A footnote for an otherwise excellent discussion, if I may.
When a surgeon tells you that on a scale of one to ten, MVD is a one in the spectrum of work he does, I can make two readings. (a) he does a lot of really hair-raising surgeries, or (b) he seems a bit casual about the risks and side effects for MVD in some patients.
MVD is not trivial, though it is widely done and for other issues than facial pain. Prudent attention to side effects is certainly called for. Outright permanent hearing loss is as others have noted, quite rare. Less rare and worth being aware of are Central Nervous System fluid leaks, and procedure failure due to excessive manipulation and tugging on the nerve during the procedure. Some few patients also experience loss of tearing reflex -- again, not many.
So advice from an 18-year veteran of patient support networks: ask your surgeon for his or her record of surgical outcomes both in terms of pain relief, and in terms of major negative outcomes: anesthesia dolorosa, loss of tearing reflex, CNS fluid leaks, Meningitis. A good surgeon will do yearly follow-up surveys with every patient they have treated. If they aren't doing such surveys, you'll want to know why not.
I am wondering if you are still scheduled for the 18th?
I also had hearing loss, but it was only fluid in my ear, not CSF leak.
Apparently now they put a probe in your ear (same side as surgery) and they check you hearing throughout the surgery. I was told by my neurosurgeon that at times the hearing will fade, so he will stop the surgery and wait for the hearing to come back, and its all part of the surgery and normal. Once the hearing is fine again, then he will continue the operation.They generally have a neuro-scientist who monitors all these functions the entire time and this surgery has really come a long way from years ago in regards to some of the high tech "toys" the doctors use.
I had an allergic reaction to the soap they use to remove the wax that holds the probe, and I was stone cold deaf for a week on the same side, it was really annoying, but one round of Prednisone and some nasal spray and it was gone. The doctor said that was rare to happen, but I am allergic to most every pharmaceutical you can find.
Thanks for the information. yes, I am still scheduled for the 18th. In talking to folks here about the hearing loss issue, I feel relieved and more confident.
However, after reading Reds comments, I am wondering if I neglected to ask all the right questions of my NS. I did a ton of research on him, and I guess made a lot of assumptions that he was good, if not great at what he does. TN is his one of his specialties, he has done more than 1000, he trained with Dr. Jannetta, he comes recommended by TNA and my PCP. My personal impression of him is that I trust him. He answered all of my questions (that I knew to ask). What did strike me, however, is that I wont see him again until surgery. It makes sense I guess (intellectually) that another appointment is not needed (as I am confident in that I want to have this done as opposed to another procedure). But, perhaps emotionally it feels strange to relinquish this control to another human I really don't know. Maybe I just need a shrink. I did ask my NS if we at least get to have dinner before he rattles around in my cranium? I enjoy humor as a coping mechanism. He said "no" with a quick hint of a smile. Anyway, thank you for your help and any thoughts on the "freaking out stage" or anything else for that matter is greatly appreciated.
I know how you feel --- I watched videos of Dr. Casey (Who trained under Janetta)
Then I emailed him for a local referral
Then I found there was nobody here to do it worth any TN experience
Then I flew to see him the day before my MVD -- from Missouri to Michigan
Had a nice lunch in Canada in the interim --- LOL
He had a sense of humor and that was great - but not one of his top 3 qualifiers for me for MVD !
You can ask if anybody here has used him -- and ask for positive answers only I think --- you can get private messages of those who did not like that NS for some reason....
I had a MVD and lost both the hearing and vestibular system on that side. While it was an adjustment the MVD did stop the pain, so I thought it was worth it. That said, I am having pain on the other side now and surgery is out of the question for me.
My surgeon was Dr.Jeff Brown in NY, I never saw him after the initial consult as well. I saw him the morning of surgery in pre-op and he had just returned from a vacation overseas that weekend...My first question was "did he have jet lag" lol....He also trained with Janetta and I found a lot of comfort in that,
I would make a list of questions you did not think of, I kept a running list on my iphone and a notebook, and then about 2 weeks before surgery I called and spoke to the office staff who answered all my questions, there really wasnt anything that he needed to answer, I just wanted some clairification.
Thank you for the thoughts....And, I am too comforted that my NS worked with Janetta. I actually have that list ready to go but was going to wait until surgery, but maybe a call ahead of time to the office will help with some of the anxiety. I like your use of humor with your NS. :)
crashgirl said:
My surgeon was Dr.Jeff Brown in NY, I never saw him after the initial consult as well. I saw him the morning of surgery in pre-op and he had just returned from a vacation overseas that weekend...My first question was "did he have jet lag" lol....He also trained with Janetta and I found a lot of comfort in that,
I would make a list of questions you did not think of, I kept a running list on my iphone and a notebook, and then about 2 weeks before surgery I called and spoke to the office staff who answered all my questions, there really wasnt anything that he needed to answer, I just wanted some clairification.
I have always had a sense of humor, and some people just dont get me, but at times during all this, if I didnt have a laugh or two, i wouldnt be here.
It helps
Wendy Kassie said:
Thank you for the thoughts....And, I am too comforted that my NS worked with Janetta. I actually have that list ready to go but was going to wait until surgery, but maybe a call ahead of time to the office will help with some of the anxiety. I like your use of humor with your NS. :)
crashgirl said:
My surgeon was Dr.Jeff Brown in NY, I never saw him after the initial consult as well. I saw him the morning of surgery in pre-op and he had just returned from a vacation overseas that weekend...My first question was "did he have jet lag" lol....He also trained with Janetta and I found a lot of comfort in that,
I would make a list of questions you did not think of, I kept a running list on my iphone and a notebook, and then about 2 weeks before surgery I called and spoke to the office staff who answered all my questions, there really wasnt anything that he needed to answer, I just wanted some clairification.
i had my mvd a week ago i am exhausted abit light headed slow in speech and thought and feel like my ear is under water. I have been told that the ear is water and it will go away. It would be so hard to live like this permenantly, but I would gladly do it than live with the hellish pain