Right Cranial facial pain syndrome, Right middle ear adenoma

[Spikey]

Hi

Im from the Uk and 26 years old. About 4 years ago i started suffering from a blocked sensation in my right ear and i could hear my own pulse in my ear. I went to the GP to have what i thought my ear sringed but she said it was an infection. I went back and forth to the GP for about 12 months and because the inflamation and infection didnt respond to any anti biotics she refered me to the Local Hospital.

I attended the ENT department at the hospital and was also treated for congestion and an ear infection. The symptoms persisted and after 6 months they decided to try and put a gromit in as they said it could be fluid in my middle ear. I had surgery to put in a gromit and the consultant split the ear drum to put the gromit in place but hit blood at the other side of the ear drum and chose not to put a gromit in as it may continue to just bleed. 3 months later things were still bad so they tried again to put in a gromit but the same thing happend so they decided that they needed to do an operation called exploration of the right mastoid. his operation was performed and the consultant came across a mass of what was thought to be granulation tissue. My facial nerve was situated in the mass so to not damage the nerve they removed the bulk of the mass as close to the nerve as possible without damaging it. A biopsy was sent away and the results returned stating it was a benign tumour. It biopsy was sent to another Hospital for a second opinion and the results said it was a malignant tumour so I was then referred to another hospital where it could be managed.

The consultant explain to me that the tumour I had was known as an adenoma tumour and to the human eye under a microscope the cell structure of a benign one was the same as a malignant one so the only way to find out was to monitor its behaviour with MRI scans. I had scans every six month and up to the end of last year the tumour had be stagnant so the consultants are presuming it is benign as it isnt behaving like a malignancy.

In febrary I went for the results of my scans and I received bad news, my tumour was growing. Because my facial nerve is incased within the tumour there is a 90% chance I will have a right sided paralysis of my face if the tumour was removed. If laser therapy was used to srink the tumour the laser would almost definately damage the nerve a paralyse my face. At the moment the consultant dont know what to do because ideally they dont want to remove or damage the nerve so for the next six months they are perpared to leave it but i have got to be aware that as the tumour grows my pain will increase.

I suffer from servere migranes constantly. I get pins and needles constantly in the right side of my face and head which as times radiates to the left. It it thought that I have nerve Damage causing a lot of main and discomfort. I have muscle damage in my jaw as a result of the surgery which causes a lot of pain when chewing items and talking. I can feel every facial expression and as the day goes on the pains get worse. I can control some of the facial movements and if I am able to control them it reduces the pain but involutary movement radiate bad pains in my face. The only thing that ever happens to my pain is that it gets worse and when its bad all I can do is sleep to try and ease it.

I have a number of anelgesics to help with the pain. I take Tramadol 200mg twice daily slow release. I have gabapentin 700mg three times a day. i take amytrptaline 50mg at night. I also have paracetamol and dihydrocodine as and when required to try and help with the pain, but nothing seems to help much.

My consultant said in all the time he has worked in this field of work (30 years) he has never seen or known of this condition and that is why they dont know what to do surgically to save the facial nerve. The chances of the facial nerve being saved It is looking very slim.

Currently I am training to be a nurse, which as you can imagine is very difficult at times as I really am in a lot of pain and discomfort but I refse to let it defeat me so I keep plodding along.

I was wondering if anyone else has ever heard of this condition or any similar condition so I could chat to them about it, let me know.

Happy Chatting

Spikey

[JAVISI]

Spikey,
What an awful thing to happen to you. I am a Registered Nurse but am unable to practice due to my brain disorder. I am proud of you that you have such determination:D . Nursing is such a wonderful career, you reap more benifits andenjoyment from your job. Sometimes it can be a selfless job but I always felt good knowing that I was helping others and making a difference in this world. I hope that you get to enjoy the experiences as a Nurse as I did!:)

About the Nerve pain, can you take the gabapentin more often or can they increase the dosage? The only other medication that I know of that help Nerve pain is Tegretol. Medicine is rapidly changing, I hope that they can find the answer on how to remove this without causing damage!;)

Keep pushing forward!
Dreaming BIG AND REACHJING FOR THE STARS, JAVISI

[Spikey]

Hi Javisi,

Thanks for your reply. The Maxiofacial consultant is wanting to increase the dosage of gabapentin and introducing another drug for nerve pain (one like carmezapine, but with less side effects as i reacted with a rash from head to toe with carmezapine). She is also hoping to try some botox on my muscular jaw pain but she wants me to see another neurologist who specialises in head pain but has experiences with facial pain also,so its a waiting game at the moment. Waiting for the appointments. Because I need joint consultations all the time and they only normally do one a month I often have long waits inbetween.

Keeping Positive !!!!!

Spikey :)

[joy]

hi spikey

i know of nothing that will help you but having had 5th nerve pain i can sypathize with you. it is an awful pain that is undescribable. mine was treated with carmezapine back in the early 2000's. i am happy to say that i have not had an episode in years. i don't know if it is because of the regular pain med that i am on or what. yours being from a different reason, a tumor, takes me out of the position to advise you. mine too was after what appeared to be a bad infection that lingered. i also remember having bad earaches as a child and as a young adult and upward, always felt like i had fullness in my ear, always uncomfortable. i hope to read better news from you soon.

[Spikey]

Hi Joy.:)

Thanks for replying to me. I have tried Carmezapine but unfortunatly I reacted to it and came out in a rash from head to toe. My Maxiofacial consultant is wanting to add a simular drug but with not as many side effects.

She is also wanting to try some botox in the muscles of my jaw as she beleives my pain is agrevated by clenching my jaw together. I do this in my sleep and cannot seem to stop it she has tried splints and gum shields but it has not helped.

I have an appointment in a couple of days to see her and a new neurologist so hopefully something positive will come of this appointment.

I am really pleased that your pain has been controlled. I am also greatful thaat you have told me as it makes me feelmore positive that something can be done.

Hope your pain stays under control.

Happy Chatting

Spikey

[joy]

I'd love to hear what the neurologist has to say and what they do.

I recently started having some pain (even on pain meds for other problems, but not generic tegretol) and was starting to really worry. ! I visited a regular doc as I knew I had a sinus infection finally. But it still did not relieve my pain over tooth. Finally I noticed my new crown that I'd had to have put back in 2 times already was loose. That was a relief. Dentist just replaced it with a bigger scre. No pain meds or anything though. Whew I was glad to leave that office!

I now am having some minor sensations on other side. But I too am clenching my teeth at times I think. If it does turn out to be something else, it will be a NEW problem as I did not have trigeminal neuralgia on that side before. Still sweating that out.

Hope things get better for you soon.

[Spikey]

Hi Joy,

Have you tried having gum shields in at night when your asleep? It is said that most people clench their teeth at night the most and the gum shields (there are 2 types a hard one and a soft one). They are moulded to the shape of your teeth for a perfect snug fit and you wear them at night to protect your teeth as clenching and griding can damage your teeth. Also in many people wearing them actually stops them from clenching and grinding.

I have both, they dont stop or prevent me from clenching or grinding but they do stop me from damaging my teeth. You can get them from the dentist. Might be worth a try.

Hope you sort your problems soon, I will let you know what the neurologist says.

Happy Chatting

Spikey *fantasia

[joy]

Just went back to doctor today. I thought I had a kidney infection but instead it might be a bladder infection. And since my teeth on the other side are now sensitive or touchy, my eyes are weepy in the morning and a few more things going on, I asked if it was possible my infection in sinusis was gone. The doctor in today said that the antibiotic that I was treated with wasn't the best choice and gave me another one to try. I take it 3 times a day also instead of 2 like the other. Also told me if I was not better after all this to come back.

Now I just happen to have some neat trays the dentists made for me to wear at night along with teeth brightner stuff. So that would be perfect. My own teeth are so dinged looking next to the crown they made me so I can just pop them in all filled with the whitner. I hope to have something to smile about very soon. Thanks for that tip. t makes a lot of sense. My grinding when I chew is pretty hard on my teeth as I don't have jaw teeth. The teeth that I have left really get a workout just eating. Grinding them at night just makes it all the more worse.

[Spikey]

Hi Joy,

Sorry to hear you have a bladder infection, I had one the other month and they are not nice. Hope the anti biotics work for you and you start to feel better soon.

I see the new neurologist tomorrow so I will keep you posted as to what is said. I was supposed to start a pain management programme on the 10th August but I found out today that I had been booked in on the wrong type of programme. I have now got to wait for the next programme to come round before I can start my programme, it makes me laugh, but really at time you feel like crying. I will let you know if I have any progress with that aswell.

Happy Chatting

Spikey *fantasia

[joy]

Its awful you have to wait so long! Hope you manage allright until then. I'll be hoping for a cancellation or something so you can get in early. Take care.

[Spikey]

Hi Joy,

I have been to the hospital today and seen a new neurologist. He has told me today that in order for him to help me the first thing that I have got to do is to come off all of my pain relief (opeates). I am really quite frightened about doing this because my pain is going to increase horrendiously. I am aloud to take paracetamol only.

He said the reason is so that he can refer me to a proffessor of migraines. When I see the professor I will have no medication in me and he will be able to try other pain relief spacifically for migrane pain.

The upsetting thing about it is that they dont know when I will be able to see this professor and im the mean time all I can take is paracetamol, Im scared.

Happy Chatting

Natalie *fantasia

[joy]

Hi Natalie. Wow, I don't blame you for being scared! But I can see where they would want to try and see how your headaches react to certain medicines. That might give them more of an ideal what is causing them, I guess. I am not familiar with paracetamol so I don't know the strength of it.

It would certainly be nice to be off opiates especially if they find something that stops the headaches. I went through a spell of awful headaches years ago and I certainly did not like them. Imitrex helped mine enough that I was able to manage well enough. I certainly don't want them back though.

Please keep me updated on how you are doing. I hope all goes well with you. I especially hope you do not have a long wait to see the doctor.

[Spikey]

Hi Joy,

Paracetamol is the most common over the counter pain killer mainly for head aches in England. It is used by most people and mainly used for headaches. It is very good if used for a fever as it is very effective for bring your temperature down.

It comes in 500mg tablets and it is recommened that you take two tablets at a time. It is very very mild and in the past it has done nothing for me unfortuately.

Happy Chatting

Natalie *fantasia

[Mom2boys]

Hi Joy.:)

I have tried Carmezapine but unfortunatly I reacted to it and came out in a rash from head to toe."
Spikey

Hi Spikey,
Im so sorry to hear of you Dx and present situation. Your tumor must have been on the Trigeminal Nerve. I have Trigeminal Neuropathy and BOY ITS NOT FUN!!!! :mad: My pain is on the right side as well. I had the same reaction to Carmezapine/Tegretol but LOOOOVE Trileptal (Comparatively Speaking ;) ). Far less side effects. Pain killers do not do anything for my TN flare ups. I can eat 'em like Tic Tacs (American mints...LOL!) and nothing. I only would be spaced out even more and nauseous from the meds.

I wish you a short path to finding a method to control your pain. Many of us have been doing the delicate balance for years. I am working mother with two small sons and a wonderful husband. Who has time for pain right? One thing I try to remember when my pain days are at there worst is "One day technology will catch up" believe that!

Gentle Hugs,


L.
Seattle, Washington USA

[Spikey]

Mom2Boys

Thanks for your reply, 90% of the time I am very hopeful and yes I often think that something will be my cure in the future.

My consultants are at present trying to think of some other pain meds to use to try and put my pain at ease. They have metioned useing another alternative to carmezapine but I cannot remember what it is called.

At present I am waiting to see a professor of migraines in the hope he can come up with something.

I will let you know what happens.

Happy Chatting

Natalie *fantasia

[joy]

I can remember My mother-in-law having a nerve clipped somewhere around her jaw and wish I could remember why now. Unfortunately it was back in early 80's and I can't remember much of anything these days :p . I do remember that they had told us there could be negative side effects and there wasn't. Whew that was a relief. Have your doctors ever mentioned anything like this to either of you? I still remember the pain vividely and the aprehension before I'd take a bite of food or drink. Even now I still have plenty of antsy nerves when I go to dentist just thinking about what IF when I am in the chair. Whether it's just getting a cleaning and for sure if dentist is drilling! I know I'd not be still if that pain hit! Sorry I know this must be causing unplesant thoughts just thinking about it. I'm still hoping that the both of yours will stop like mine has. I will be on some type of pain med for the rest of my life anyway (providing I can find a doctor to prescribe it, they keep moving) since I have peripheral neuropathy and osteoarthritis in whole body. The big plus is there are less side effects in my present medicine and I don't have to take that as often and it works better. But that also means my whole body is shot. But no BIG PAIN in a very sensitive area. I remember the pain in jaw and side of head down my throat along with a full blown case of my meniere's disease. I was so dizzy and nauseous and unable to take care of myself for days that time. But when I survived it, I knew that likely I'd never be that sick again. And I thank God I haven't. Not both at the same time anyway. My children were old enough to take care of themselves. I can't imagine having small children and having to try and manage everything! I have to point out my present medicine was never suggested for 5th nerve pain and I don't think it would be suggested now IF I did not have all the other things wrong with me to boot. And I've never been out of pain enough for those ailiments to stop it to see IF my jaw pain would return as well. So I don't really know if it's gone or just being kept under control by the medicine for my other symptome. Wow, sorry I am so chatty and confusing. But I'll take these silly problems over that horrid pain anyday.

I also had a stretch where I had headaches. Not really the kind that I HAD to go to bed but bad enough that it did keep me occupied IF I had to drive. After about the second minor fender bender or baking into ditch I finally said to my doctor (who had not done anything but say I don't know why you are having headaches) I don't know the reason either, just give me something to make them better! Mine were either migraine or cluster headaches. Imitrex did help some. I'm happy to say they are not so much a problem any more either. Maybe that soon it will improve for you as well. I think I remember something about rebound headaches. Have you heard anything like that? I thought that might be another reason your doctor wanted you off medicines.

Anyway sorry for rambling and I hope things get much better for the both of you.

[Spikey]

Thanks Joyfor your Kind words.

I find it interesting to hear about other peoples complaints as although it does help you it makes me feels as though im not on my own.

At the moment my meds have all been stopped and I am waiting to see a professor of migraines. My pain is really bad and all I can do is wait.

I will let you know of any progress.

Happy Chatting

Natalie *fantasia

[joy]

Natalie I can't imagine how you are holding up. I hope you are able to eat some and to get some sleep. I'm hoping now that the doctor knows you are off the medicine and will hurry up and schedule the surgery. Be sure and let us know about it if you have time before going in hospital.

I hope surgery is successful and you end up saying, why did I wait so long? I'm hoping too read it was successful surgery and you have no more pain.

[Norma]

Hello Spikey
I am sorta new to the board...I mostly read. I was wondering if it would be alright for you to try a herbal remedy maybe like Chamomile tea? Ask your neurologist if this would be condidered a drug and if it would be okay before you use it. I know it does have a very calming effect.
If you get the okay use it at home when you do not have to go out anywhere so you will know how it will affect you.

I have a daughter with Downs Syndrome and Schizphronia , wears hearing aids in both ears (or rather she DID). She is having some of the same symptoms that you describe.
She has seen an Otolyrngologist, he put tubes in her right ear, but she is still having problems. Will not wear her hearing Aids. Very Very painful headaches.
Her neurologist put her on Lyrica. It is helping some but does not completely prevent them from happening.

If there is a teaching hospital close to where you are. Since your Doctors have to consult with one another and it takes so long ...thought it might be easier. Udsually there are ALL KINDS of Doctors at these University Yeaching Hospitals.
Hope you can get spome relief soon.
Norma