ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: ALICAM on November 20, 2009, 06:06:29 pm
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As I'm completely new to this site I hope you all don't mind if I ask if my glomus jugulare counts as AN ? I live in Northern Ireland and because of the rarity of my tumor, I have had no one to talk to about it. It sounds pretty much like most of you guys. 2 years ago I thought I had trapped wax in my right ear and of course I was wrong. There was no one in this country who could operate so I travelled to England and met a wonderful Professor in Otolaryngology. My tumor had broken into the ear and brain and was attached to the carotid artery. Surgery was the only option and now I am totally deaf in the r ear ( inner parts removed to get to tumor), I have r sided facial paralysis and cannot swallow well. My voice box was damaged ( apparently because of the facial nerve being moved) so I speak in a whisper and I still get mega depressed.....it's the vanity thing. I don't mind the scarring, just the inability to smile properly at people. I'm due my 2nd year mri review to check on the bit of tumor left on the carotid artery etc ...... just have felt so alone because I have no one to talk to who I can compare and talk honestly with. I don't want to butt in if I'm in the wrong place but it all sounds so familiar and oddly homely and accepting here. I've read stacks of posts and can totally identify with people here. It would just be sooooo good to learn more and talk !!!
Sorry if this is too long,
Ali
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Ali
You are in the RIGHT place ;D I'm happy that you found us here.....I only wish you had found us sooner! It is really hard to go thru something as tough as you have and not to have anyone to talk with about it that really understands. I know that is why I keep comming back and I hope you continue to as well. I hope your 2nd year MRI comes back with no new tumor growth-it is so stresssful to have those periodic scans isn't it? Please visit often!
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Ali,
I had never heard of a "glomus jugulare " tumor before.. Heck, I had never heard of an acoustic neuroma before I had one either, so that's not surprising. I did some googling and based on what I found, I think you'd fit in just fine with this group. No, it's not an AN, but the "symptoms" before diagnosis are pretty similar and post-operative "complications" (or at least the possibility of said things) are very similar (hearing loss, swallowing issues, facial weakness/paralysis, etc..).
Please, jump right in and become involved. Ask your questions, answer some.. Get...well... connected with other people who have many of the same struggles that you have. You're more than welcomed here. This isn't an AN-only club.. We have people with mengiomas, ANs, and other types of -omas in our midsts.. So, let's add glomas jugular to the mix.
You said this type of tumor is rare, but I'm curious how rare it is.. The quick and dirty research I've done suggest that it's the "most common tumor of the middle ear" (not to say that it's not rare by comparison to other things)..
So, tell us more about you, your tumor, etc.. You mentioned facial paralysis, but is it temporary weakness?
Welcome to our little place in the world.. You're very welcomed among us.
Regards,
Brian
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Hi Ali~
Just like Pooter said "WELCOME!" to our happy, little group that no one wants to be in, but is an incredible group of people! Feel free to ask anything, vent or just chill here!
K ;D
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Ali .....
So glad you found us! You certainly fit right in with our very wide-ranging group of people. You will find this a very kind, supportive group who are here to listen, as well as to share. ..... so a big WELCOME!!
Feel free to vent or ask questions and by all means let us know how you are doing.
Clarice
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Welcome, Ali!
I'm so sorry you have felt so alone through your medical struggles. I think you will find that this is a supportive group filled with people who are willing to talk or just listen. It sounds like you have been through a tough time with your glomus jugulare. I will go Google it to find out more, but until then, please accept my welcome to the group. We are happy to have you hear, even though it was not through the best of circumstances.
Lyn
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Thank you all for welcoming me.
My tumor was described in rarity figures that 1 person in every 1.3 million gets it per year and I guess as there aren't that many people in our country it didn't call for a specialist working full time on it. From my limited knowledge ( more from forgetfulness than anything ) it was a highly vascular tumor and I had to have an embolisation done first to restrict the flow of blood to the tumor.The main surgery was done over 14 hours using a skull base surgeon and a neuro surgeon. I knew that to get to the tumor they would have to remove every middle and inner part of the ear. The opening started above the ear and was a question mark shape round the ear and down to the voice box. They got all of the tumor that had broken through to the brain and they took some lovely fat from my stomach to fill that hole. Unfortunately the facial nerve had to be transposed( if thats the correct word) or pulled back across my face to get at the other bits of tumor. They shaved as much off the carotid artery as they could without risking the artery. So two weeks in intensive care and I was begging to leave, well actually I asked after 2 days if I could go home....They didn't really see the funny side of that ! So because of the paralysis ( grade v if I'm right) I had to have one of those horrible N G tubes stay in for about a month.The loss of hearing was more of a balance problem than anything. Very strange though that you can get tinnitus in an ear where theres nothing left but apparently its the brain that causes the tinnitus and i,m hearing it in my head.....freaky- right? The worst is the facial paralysis, it very slowly improved a little but now it's about as good as its going to get. So hard to live with that, people think i slur my speech cos the mouth doesnt move and its like they think I'm retarded or drunk. Due to travel to Manchester in Jan to get my check up so fingers toes crossed. I'm glad I got to talk aloud about my tumor, most people just want you to move on and forget but I'm still not ready for that.Thank you all again so much for welcoming me and hopefully I can give something back in return too. It's just so good to meet others who understand, take care, Ali
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Hi Ali,
Welcome to the Whatever-You-Have Forum. :)
You will find great support here for a variety of facial nerve issues, from eye drops to depression and everything in between. Don't give up on having some facial recovery, we have reports of improvements 3 years out and beyond.
It is also a good place to simply connect with people who understand what you are going through. We are happy to have you join us.
Steve
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Ali .....
Thank you for the additional information on your very rare tumor ..... we are all learning new things here. You have a wonderful attitude considering everything you have endured in the past two years. By all means stick around with us and share, vent, ask, whatever!
Just curious, did you have your surgery in Manchester, England with the professor/surgeon you mentioned? I am from the US but my daughter lived in Manchester, England for a year and a half when her husband's company needed him there. We went over to visit them 7 years ago and had a marvelous experience. Alas, we did not make it to Ireland on that trip but you live in a beautiful country.
Prayers continue for additional facial function recovery.
Clarice
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Hello Ali ~
I'm a bit late to this thread but I wanted to add my welcome and assurance that you are certainly not in the wrong place, as the previous welcoming posts made clear. I'm sorry to learn about your tribulations stemming from the surgery to remove the glomus jugular tumor. I did a little research on this tumor and while it isn't an acoustic neuroma, it does present the patient with many of the same issues, as your posts have explained. The thoughts and prayers of many will be with you, Ali, and of course you're welcome to post in these forums whenever you wish.
Jim
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I'm glad I got to talk aloud about my tumor, most people just want you to move on and forget but I'm still not ready for that.
Ali,
You have been thru a tremdous ordeal and please talk about it here as much as you need to. I'm pretty sure my family and friends feel that same way about me but part of working thru what we have been thru invloves talking about it so talk here whenever you need to :)
Erin
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Thanks again guys, it's so comfortable here !
Clarice, yes it was Manchester, England where my surgery was done and where I will be going in January for my MRI scan check up. My head and neck surgeon Prof Richard Ramsden is just the loveliest trustworthy man. He actually was a pioneer of the cochlear implant and teaches other surgeons all over the world on the removal of glomus jugulare tumors. He has devoted his life to helping others.
I hope someday you make it to Ireland !!
Ali
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Hi Ali,
A late welcome. You have been through sooo much. I hope you continue the forum. You meet lots of nice folks and make friends. It's a small world...
I too suffer from facial paralysis, deafness, tinnitus and am actively pursuing options to get my face moving again! The traditional chinese acupuncture is my newest thing. I am 3.5 years post op and had a nerve transplant almost 2 years ago, (the 7/12 nerve transposition, where they take part of the hypoglossal (tongue) nerve and connect to the face nerve. ) It is slow going, and acupuncture is bringing more muscle tone to my flaccid face, and a little more movement.
Was your face nerve cut during the original surgery?
Nice meeting you :)
Maureen
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Hi Maureen,
Our fall out sounds very similar. Apparently my facial nerve was 'transposed', if that's the right term. It was explained to me that to get to the tumor the surgeon needed to pull the nerve to one side and would have been like that for roughly 10-12 hours....so I guess its like it goes into shock ( my words, not the docs).It wasn't cut although that was a risk during the surgery. I have never heard of the 7/12 procedure before, although in January when I am due my 2 year mri check up we are to discuss further options, if any. My surgeon, who is a lovely, fantastic man made me promise that I wouldn't even consider any facial procedures until 2 years were up.
I have heard of a procedure being carried out (new to England, where I have to travel to for my check ups) where the facial tendons?? are stretched right across the face to the other side to kind of run the movement via the good side to get the other side moving but it sounds lengthy, painful and perhaps only for very severe paralysis. Apparently I should be grateful for what animation has returned already and yes I am but I am also desperate to have a full and normal smile ! I sometimes ask myself 'what would I prefer...the ability to swallow normally, talk normally or have a smile?' I pick the smile ! Vain and probably not the right answer but its what I think makes me more me. I dream of waking up, looking in the mirror and seeing my big toothy grin.....give me that anyday rather than a million pounds !!
I know I keep saying this but it is amazing to find this site as I have no one to talk to here with the same problems. Thank you so much for taking time to write to me,
regards, Ali
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Hi Ali-
I wanted to add a belated welcome from New Jersey. Sounds like you have been through the ringer! And, much of what you descirbe runs parallel to acoustic neuroma, so you are in the right place. It sounds like your facial nerve was severely traumatized - they don't like be touched, let alone stretched! I am curious if you have looked in to facial retraining exercises? The people who do this are NeuroMuscular Facial Retrainers (NMFR for short) and it is a very specialized field, so not always easy to find someone who does it. I have been doing exercises since January of this year (had surgery April of 2008 and came out with close to 6 on the HB scale). I do have some synkinesis now, so am working on that and will look into botox to relax some of the tight muscles that are causing the synkinesis.
I know what you mean about feeling self conscious. I spent months feeling so vulnerable whenever I went out. I've gotten enough facial movement back that I don't really think about it now. However, when I am tired, my face gets droopier and I do slur my words, especially the P's and B's. I also stagger around a bit when I am tired (balance) which all lends itself to looking like I've had too much to drink! I try to make jokes about it - makes me more comfortable and makes others around me more comfortable too.
My doctors says that they expects to see the most facial improvement in 2 years, but I've seen people on this board who get improvement well beyond that, so don't give up hope! Just curious, does your eye produce tears?
Debbi
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Hi Debbi
Thanks for the welcome ! We do have many things in common, including the stumbling. With my full ear parts removed on the right I'm very prone to balance problems, especially when I'm tired (same with face too) so that with the speech problems, no wonder people think we are drunk.
I had a lot of facial exercises to do after my surgery and through out patients for about six months but doesn't sound quite so specialised as you mention. I was given a little hand held electro nerve stimulator for quite a few months but there is a debate about whether it actually does anything much, but better something than nothing. I think my problem is because of the rarity of my tumor there isn't much evidence or information about 'what to do next'. It really is difficult finding any helpful information. Thats why this site has been a Godsend to me....finally I can ask questions.
As for my eye, well after surgery it didn't close but gradually that got a lot better. I had to use the synthetic tears for a few months but I was lucky where the eye is concerned. Some mornings or in the middle of the night I wake up with very dry eye and it's painful but a few drops of eye gel sorts that out.
Thanks for the chat, Ali
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Hi Ali,
Sorry I'm so late welcoming you to our group. It sounds like you've been through a really rough time that was made even tougher by not having anyone to talk to. This group of wonderful people was an enormous help to me and as you can see, we all pretty much feel the same way. We are here to help however we can. I consider myself very lucky but also have almost no inner ear have to agree that balance issues can frustrating sometimes. Just when I though the worst was over, I went to the movies the other night (the lobby was packed and probably had at least 100 milling about) just watching them made me feel completely off balance. It also made me realize that I have avoided crowds for the last few months and have lost some of what I'd regained. My doc always said that doing anything that makes you dizzy will improve your sense of balance. Guess it's time to start walking in crowds again. I also had a problem for about a month after surgery with not being able to open my eye all the way. Happily for me, that problem resolved too. So even though you didn't have an AN, as you can see some of us have had the same problems. Feel free to stop by anytime -- we are here to help and support each other and you are most definitely welcome.
Best wishes,
Wendy
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Ah, the crowded rooms... I can totally relate to that! Nothing whacks me faster than a mob of milling people. Add the noise level, and you have the perfect storm for bad balance!
Debbi
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Hi, Ali...I offer my "welcome" to the many who have already responded to you. I, too, am a "newbie"...but the friends on this site have been overwhelmingly supportive and helpful to me through rough places. So many of our "family" here have been through so much in their own journey, and yet as a 'network', they want to support others going through the same thing. I find myself just "checking in" from time to time to (selfishly) read, and get my own "fix" of encouragement, and understanding. Today, I want to encourage YOU...and tell you that we are all here for you...This site has brought much reassurance to my own life...and I know it will do the same for you! God bless you!
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I am also desperate to have a full and normal smile ! I sometimes ask myself 'what would I prefer...the ability to swallow normally, talk normally or have a smile?' I pick the smile !
I understand about wanting the smile. :-\ It was what defined me. I'm hoping for a closed lip even smile and an open lip smile would be good too!
I'm wondering if you were referring to the tendon transfer surgery, also known as the T3 procedure. That is more for people with total facial paralysis. A couple of people have had that.
I'm hoping for some sort of face lift, maybe a muscle "transposition" into the cheek area. There is a temporalis muscle transposition I remember reading about. SO much out there , just a matter of how to access the care.
For me, it all depends on the US military health care system. I'm being seen by a civilian hospital for my nerve transposition, and they haven't given me their final:
Yes, it did work, don't do anything else, or
NO it did not work, let's tweek it or have your military hospital tweek it.
Takes a long time and lots of patience but it WILL happen. I haven't given up hope. Meanwhile the acupuncture is helping.....
You don't give up hope either! As long as there's hope, life continues its path.......
Maureen
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Hi Maureen,
Wow ! You guys know sooo much more than me. I have gone searching on net for procedures but realise now that I was looking in the wrong place. I really do wish I had found this site two years ago. It is such a load of my mind, not having to constantly moan to my husband or keep things to myself. I'm going to google the procedures you have mentioned. It must be very difficult in the US with the health insurance side of things. Although our National Health Service is not all great. Waiting lists are extremely long and if I hadn't have been covered through my husbands private work health insurance then I would probably still be on a waiting list and who knows if I'd even have got the right type of specialist. When I see my surgeon in Jan I am definitely going to mention these procedures and see what if anything is available. Although I'm not sure if the medical insurance would cover anything that they deem to be 'cosmetic' rather than corrective. Need to try though. Acupuncture is something I hadn't thought of either....so many things to consider now.
Don't be giving up hope though, it seems there is lots of it around here to pass on !
Take care, Ali
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Hi Ali~
I had the T3 in March 2008 and it was considered "functional" cosmetic surgery by insurance & Johns Hopkins. I don't exactly how the paralysis affects you (ex. speech, eating, drinking) but those are all daily skills needed to "function" in life...
Just wanted to throw that in while I'm thinking about it!
K. ;D