MVD surgery 8 days ago

Hi Jonathan.  Sorry to but into your conversation with Leon, but felt that I had to reply to what you've written.  I was wondering where you had your surgery done and whether all the risks were properly explained to you before surgery?  I have also had MVD and was given chapter and verse of all the risks by my surgeon in Bristol.  It was also explained that it was major surgery and definitely not something to decide upon lightly.  I am really sorry about the loss of your hearing; it must be really annoying and very hard to get used to. It's interesting that you would prefer to have the spasms because very few people on these forums have said that.  Most say that, if they had to sacrifice something, then they would prefer to lose hearing in one ear rather than stick with the spasms.  But, I haven't lost hearing and so can't speak from personal experience.  I think the thing I would like to stress to others is that MVD is not a simple procedure; it's a very skilled procedure carried out close to sensory nerves and also near to the brain stem.  Having said that, the success rate seems to be very good and hearing loss seems to be becoming less common than it once was.  I am so sorry that you are struggling with your outcome and hope that things will get easier as time goes on.  Very best wishes to you, Roseann 

Roseann,

Thank you for your kind words and insight as well. I am just still quite frustrated as you can likely see by my original comments. The surgeon who performed my procedure is and was quite skilled and proficient with this procedure, however I was not made aware of all of the possible outcomes. The procedure was described in great detail by the neurosurgeon and I had already done quite a bit of research but failed to see a significant number of patients have any issues with hearing S/P procedure. That being said I was convinced that in my current shape and medical background there was little if any worry of possible surgical outcomes that involved permanent loss of hearing. Anyway hindsight is 20/20 and I am spasm free but at the cost of being deaf in my left ear forever now. I am an audiophile and this was a huge loss not to mention the constant battle with lack of balance since this procedure, again leading back to the inner ear.  I had the procedure performed here in the US in the state where I currently live.

I do remember having the spasms for over 2.5 years and they were of course progressively worsening with each day's passing. I do wish I would have given Botox treatment a try initially as it could have given me a few more years hearing from both ears anyway. 

Hello Jonathan:

I empathise with your frustration and disappointment regarding your hearing loss post MVD.  

I had a 2nd MVD surgery for HFS just last week and was very nervous about hearing loss as since  the late 1990s I lost my hearing (senorineural loss) in my L ear with 0% speech discrimination. Subsequently I developed hearing loss in my R ear.  I tried hearing aids but at the time, the early 2000s, I didn't find them helpful. Following my 1st surgery 2013  by an ENT surgeon who did a transmastoid decompression, I developed further hearing loss and subsequently was fitted with a BICROS hearing syatem which has helped me.  I have a transmitter in my L ear and the sound is transmitted to a hearing aid in my R ear.  It's by no means perfect- Hearing aids are just that-  i.e., an aid.  If you have normal hearing in your better ear, a CROS system may be appropriate. All this to say, and maybe you have already tried/investigated hearing aids, that I have found the BICROS sytem helpful.

You describe yourself as an audiophile- I  especially enjoy classical music and the hearing aid system wirelessly transmits sound directy to the hearing aid- ditto for watching TV/DVD etc. Being able to enjoy music, audio books etc. has made a huge difference to the quality of my life.

With regards to the 2nd MVD by a neurosurgeon and decompression at the root entry zone, I gave the potential further loss of hearing in my R ear serious consideration.  However, with the potential of possible relief of the relentless, incessant jackhammering noise in my R ear  and to be spasm free trumped and I elected for a 2nd MVD surgery.  I am relieved to report that I have not experienced further hearing defecit. 

Hi Leah. I also suffered from TN from the age of 27 and had the MVD procedure in 2013 at the RVI newcastle and it was a success. I'm now pain free.

The surgery side effects were partial hearing loss for 3 days, zero appetite, mild spasm on my face which gradually disappeared.

All the best and I hope it's a success story too.

Good luck with your MVD Leah.  You certainly deserve a break from the awful pain that TN can bring.  Hope you will have a very good and experienced MVD surgeon and that you will be as lucky as Essyk10 who writes below.  I had MVD for HFS in Bristol 2 years ago and had a good experience with no complications and a happy outcome too.  All the very best to you.

Hi essyk10

Could you please give me more information about your surgery at the RVI in Newcastle?  I was given the choice of surgery at either The Walton Centre in Liverpool or the RVI.  When I went for a consultation at The Walton Centre, I found the surgeon very off-putting and decided not to go ahead.  He was very skilled in this type of surgery and I partly regret it now.  Newcastle is also easier for me to get to than Liverpool.

Kind regards

Sylvia xx

 

Hello Sylvia. I know it's a very big decision to make especially because of the risks that they tell you after you've had the procedure but I would highly reccomend Newcastle.

The surgeon Mr. Jenkins was a man of few words ( I suppose they're all like that ). I had my surgery on Friday in 2013 February and I stayed in the hospital for 5 days.

Immediately after surgery I woke up with a crazy headache a was given morphine which helped.

I stayed on the ward ( even though they had mentioned that I might go to ITU/HDU or not) after surgery.

I had no appetite and I lost a stone and I still had the pain but not as severe which gradually disappeared after a few weeks.

I later came off the carbamazepine after a few weeks too.

I am now pain free and I thank God for that.

I wish you all the best and feel free to ask any questions.

Thanks for that essyk10, you have given me a lot to think about.  By the way, what was the aftercare like?  Were the nursing staff kind or did you feel like a nuisance?  It's all important isn't it?  Do you live in the north east?  I live in Cumbria.

Nursing care was great. I was a little bit weak so I had to use a comode. I shared a bay with 3 other ladies who had had brain surgery for different reasons and we had a canny laugh.

The RVI is very modern and new. I live in the north too. Southshields.

Hi Sylvia,Ive just had the Op in Walton Centre, prior to the Op I initialy saw the Profs Registrar who did his best to change my mind and increase med or change med he put fear of god up me (I,m 63 and last op was was tonsils when I was 6) If my wife wasnt with me I woulnt have had op, however prof came in and said I was perfect for Op, although when in Hospital I found him very blunt but no crap. Aftercare was great would thoughly recommend Wallton all staff were spot on and very supportive and comforting inckuding toast at 1am and tea through the nite when required. Now pain has to stay away!!!!good luckChris

Hi Chris

Thanks for the message.  My experience was similar to yours.  Unfortunately, the "talk" did put me off, but I knew the aftercare from the nursing staff would be very good - how could it not be with all those smashing scousers looking after you?  Of course, I know the nursing in other hospitals is just as great (I don't want to ruffle anyone's feathers here).  I do live a long way from both the Walton and the RVI (Newcastle - geordies are also great) and the travelling would be a trial.  I can imagine getting cold feet on the journey there are turning round and coming straight back again!  Did you have much pain post op?  The person who had the MVD in Newcastle said he/she woke with a monster headache and had to be given morphine.  I thought they would have dosed you up on pain killers before you came round as a routine measure. It's these little things that matter to me.

Thanks again Chris for going to the trouble of getting in touch with me.

HiI was dosed up but once the pain became bearable stoped morphine in post op, needed 2 doses of oramorphe in the next 24 hrs other than that was up 7 hrs after op going to toilet unaided, just had stitches out that hurt but district nurse said they had used wool and blanket stitched!!! Still get pain but not massive and its still very tender as no dressing on now but for all fear so pleased i bit the bullet also been told TN on left side as well but that doesnt give me any jip if it did think i would ask for op straight away (Also had heart attack a few years ago which added to my fear)

Thank you Chris.  So glad to hear you are well on the road to recovery.  It's heartening to know you would do it again if the TN gets any worse.  Enjoy your spasm free new life.