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MVD Surgery Looming


#1

Hi,

My name is Andy and I am 47yrs old, I was diagnosed with GPN after a very long and hard time in and out of hospital since Xmas Eve last year. Given wrong diagnosis etc and wrong meds for anything and everything they thought it might be. Had to end up going private to get things moving, meantime my wife actually found out about GPN and told the private docs who agreed, I was seen and diagnosed. Put on Oxcarbazepine and this helps but has horrendous side effects. I am scheduled to have my lovely Brain surgery on 24th sept and terrified!! :-( but have no option. When i was at my worst before the meds I am on now, I lost almost 3 stone in weight because I couldn't eat, talk swallow properly, it has been a living nightmare for me and my family.

Just looking for anyone who has suffered the same and any advice would be greatly appreciated?

Cheers


#2

I am so sorry to hear about your troubles. My story is very similar to yours. My illness started out as a cold in February of 2012. It took most of that year to obtain an accurate diagnosis. And then I wound up having MVD surgery in December of that year (the day after Xmas). I definitely felt the same anxiety you are feeling now. Brain surgery is a big deal! But as long as you have a good doctor who you trust, I am sure you will be fine. You do need to keep in mind that there is a chance that the surgery won’t work. Or you could be like me - my surgery went great - I woke up without pain and could swallow for the first time in almost a year. Now, about a month ago, I had another cold and my symptoms have flared up again. It started as just short bursts of pain, but now I am about as bad as before - pain all the time and I can’t swallow. So I am looking at another MVD surgery. Not super excited about it, but it definitely beats the pain. Anyway, take care and good luck. I hope your surgery is a huge success! Try to relax. I am sure everything will be fine. You’ll just have a cool new scar to brag about (and a bit of a headache for a while) :slight_smile:


#3

Hi Andy, sounds like you've being having a rough time of it. Its good you've at least got a diagnosis now. Hope the surgery goes well for you. There are a number of videos and discussion and blogs from folk who have had the surgery on this site. If you have a look on the blogg tab, Laura posted on her experience with MVD surgery, you may find them helpful. I'm sure community members will provide some tips for you. All the best, Smiley.


#4

I had MVDcompression surgery in May of this year. I was terrified. Had an amazing surgeon atToronto Western Hospital. The relief thati now have isalmostvoverwheoming . After three years of so much pain , trips to ER and too many medications that didnt work I have NO PAIN.i wish you good luck with the operation.


#5

Thanks you so much for your kind wishes. I am praying mine is a success story like yours!! How were you after your surgery? how long did it take you to get back on your feet?


#6

I was two days n ICU(I think your term is high dependency)and then home the next day . There was some numbness for about 4 weekd on the operated side. A slight headache - no medication. I am retired so didn’t have to return to work but am told that about three weeks would be the case. Of course that’s without any complications . To be able to clean my teeth and talk without intense pain was so wonderful . I agreed to have my case included n a study the hospital is taking part n. They are looking at genetic links .


#7

Hello hopefull.I`m having on November MVD of glossopharyngeal nerve . Who was your neurosurgeon . Please if you read this message if you could tell me the name of that doctor. My e-mail is ■■■■■■■■■■■■■■■■■.



hopeful said:

I had MVDcompression surgery in May of this year. I was terrified. Had an amazing surgeon atToronto Western Hospital. The relief thati now have isalmostvoverwheoming . After three years of so much pain , trips to ER and too many medications that didnt work I have NO PAIN.i wish you good luck with the operation.

#8

Good morning Andy,

My name is Sandy. I can so relate to what you've experienced! After, trips to the emergency, multiple office visits to my primary Dr., referrals to my ENT, Endocrinologist, months of physical therapy, various medications(Oxcarbazepine, Lyrica) MRI, MRA, Ultra sound, blood work and seeing a neurologist, nobody knew what was wrong! My son and husband could NOT stand to see me live with such excruciating pain so decided to research my symptoms online. It was through their efforts that they found out about GPN and MVD. My son continued to research and found Dr. Mark McLaughlin of Princeton Brain & Spine Care. My son contacted the office immediately! They called back right away said the Dr. could help. I obtained all of my medical records, CD'S, films, etc. and started the insurance authorization! Within a few weeks my husband and I were on our way from Florida (our home) to New Jersey have a consult with Dr. McLaughlin. We arrived in NJ on August 19th, met with Dr. McLaughlin, that day he sent me for blood work. He wondered why my neurologist never ordered a Brain MRI with and without contrast? He said it was imperative that I have one and his office arranged for it to be done asap! I felt that finally I was in the care of a Dr. that could help me!! He is such a humble man, he thanked us for seeking him out and making the trip to be seen by him. After review of the tests I had undergone, Dr. McLaughlin confirmed that I did have GPN and was confident that performing MVD surgery was in my best interest. Surgery was scheduled for Aug. 28th 7am...I was terrified, yet willing to proceed because of the terrible pain I'd been in! I am so fortunate to say that the surgery was successful !!! Don't get me wrong, I am still experiencing discomfort and pain in my ear, base of my tongue and throat, but it's NOT nearly as bad as it was prior to the surgery. I'm told that recovery period varies per case but that it could take from 4 to 8 weeks. We're back Florida now. Recovery is a day by day process. I was having migraine headaches and trouble swallowing thin liquids, i.e.. water, coffee, tea, the first week after surgery, thankfully only lasted one week! I can swallow, but it is still somewhat painful. I am experiencing some hearing issues, sounds muffled, like when on an airplane when you need to "pop" your ears. Still having some ear pain as well, not bad though, believe me everything is MUCH more tolerable! I have been off of the Oxcarbazepine and Lyrica since the MVD surgery, thank goodness...did NOT like side effects while on them! If you have anymore questions or concerns, please let me know so I can help, Sandy

#9

Hi Sandy,

Thank you so much for taking the time to reply.

I can't believe how much your story is similar to mine. After months of feeling like I had just been left without anyone believing me, losing almost 3 stone in weight, due to not being able to swallow food/water and having no idea what was wrong, my wife was doing hours and hours of research into people who had been having similar symptoms etc and she actually came up with the Diagnosis of GPN, we knew straight away that this was what it was and couldn't believe that any of the Doctors/Consultants couldn't diagnose it. My wife emailed the details to the Private Consultant that we were seeing and he said..yes, it is extremely rare, but a very high possibility. Anyway we got the diagnosis within a couple of days, and long story short I am now scheduled for MVD on 24th of this month. I have been on Oxcarbazepine for good bit now and hate it just like you, the side effects are awful. I am obviously terrified of the surgery too but have no option, I want my life back. This is an extremely rare disease in the UK and the Neuro Surgeon told us there have only been about 3 or 4 cases of GPN. The surgeon we are seeing is apparently an amazing surgeon, but he has never done MVD on this nerve before only on 5th Cranial nerve for Trigmenial. There are no websites in the UK for Support, so I have joiuned this one to try and gain some help and advice, just wish I had done this sooner.


#10

I wish you the best of luck with your surgery. I get concerned though when I hear the surgeon is not experienced in MVD.


#11

Do you know exactly what he plans on doing? Do you have the ear pain too, which is geniculate neuralgia?


#12

Hi Andy,

How do you like your neurosurgeon? Did you get a good feeling from him/her? It's imperative that you felt heard and confident in their ability. I'm hoping all goes well with your surgery scheduled for the 24th this month.

I'm so happy to have received this website as well!


#13

Hi,

I am having my pre op on Thursday this week, but I am worrying abut not being able to have the surgery now as planned, because I now have a Urine Infection and I don't know if they will allow me to have it :-( I have only met the surgeon once in person and only chatted on the phone, he seems like he knows what he is talking about, its just the fact that he hasn't carried out MVD on this Nerve, but then again not many have in the UK :-(


#14

Hi Andy,

Sorry to hear that. Your wife probably already searched, but isn't there anyone that you can travel to that has done surgery on the 9th cranial nerve? I can not stress to you enough how imperative it is that you have a neurosurgeon that's familiar with MVD and Glossopharyngeal Neuralgia.


#15

Hi Sandy,
It’s been such a long time since we have been on here, my wife checks in regulary though, I wondered since it has been so long, how things are with you?
Unfortunaltey the MVD hasn’t worked for me, I had all the side effects you had after your surgery, i.e the swallowing problems etc.
I did try to reduce the meds for a bit and it seemed not too bad, but gradaully things started to get worse again for me and never been off the Oxcarbazepine, recently I had to increase it back to the same doze I was on before the MVD (1850mg) as I had a terrible flare up and was absolutley terrified of the pain again, I also have side effects now that appear to be Vagal Nerve, I have had blackouts, fallen down the stairs, broken my shoulder, I have also had seizure type symtoms where I have fall to the floor and go cold and clammy, almost go unconcious and then cannot remember what has happened. I have undergone test for Vagal Syncope and they came back stating that the Vagal nerve may also be compromised by the blood vessel now, which during MVD Surgery the Neurosurgeon stated that it was so badly adheared to the Glossopharyngeal Nerve, so much so that it was totally squashed and they had to try and peel it off as best they could, hence why it may not have worked so well for me, not too sure.
Anyway hope you are doing well and have totally recovered !!
I still have not noticed if anyone from the UK has been on this site, if there is anyone then please give me a shout and I will get back in touch!!

All the best to everyone

Andy


#16

Oh Andy I am so very sorry to hear about all of the issues you’ve been having even after the MVD surgery! I haven’t been in contact with anyone at all so I don’t know if others are having issues after surgery. I suppose I was extremely fortunate to have had such successful surgery to correct my Glossopharyngeal Neuralgia ! I pray you continue to stay strong until a solution is available. Medicine is making strides every day so do not lose hope. Please keep me updated. Take care.

Sandy