ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: petgroomer on March 12, 2010, 06:34:23 am
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Hi all...
My condition has gone from bad to worse over the last 3 days. I am asking what you all have used for pain management.
The pain in my head and neck has gone from VERY painful to.. just PAIN. Feels like a terrible bout of strep throat with every swallow, every turn of my neck, every clearing of my throat, and there is constant throbbing on the one side from my jaw to my ear.
I am not sure how things have gone so quickly from bad to unbelievably worse. But I need help. Knowing I am in a rural area up in Canada that has NO IDEA even what a schwannoma is,, I'm in for a treat when I go to emergency to try and get a med to relieve this.
Should I be looking at anti inflammatorys? Should I be looking at pain medications?
Which ones should I be asking them about....
I am on my way now,,, takes 50 mins to drive to the hospital... if you can message this back, i'll keep my black berry open and read ANY help or advice...
My symptoms are,
-can't quite get my throat cleared,
-constant and severe neck and ear throbbing on the one side,
-if I swallow there is terrible pain from my throat up through my jaw and to my ear on the one side.
-a nagging sort cough that won't go away.
Please, let this be a cold or actually be strep thorat, but a year ago i was in emerg with the same things and they didnt find anything then. i didnt know i had a tumour than.
Thanks in advance xo
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OMG!
I am so sorry this is happening to you. I will send prayers your way this AM. I hope this is the onset of a bad cold. Good Luck. Please let us know what you learn at the hospital.
Sue in Michigan
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What you need will depend on what they find - I'm so glad you're heading to get help, such as it may be. I'll think of you this morning, and will pray that the doctors can give you some sort of definitive answer. Let us know how it goes.
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Rhonda .....
Wish I could wave a magic wand and make your pain go away ..... bummer! You are on the right track to get to a doctor and have it checked out. Until you can rule out strep or a viral cause, you won't know what is the best avenue to take.
I did not have severe pain ever like you are describing. Shortly after I was diagnosed, but before surgery, I developed pain in my ear. I was terrified they would have to postpone the surgery. My ENT prescribed cortisone drops for my ear and it cleared it up ..... whatever it was (nothing was visible on exam).
If this is beyond Tylenol control (and if it is not strep or a virus), you need to check with the physician most recently in charge of your schwannoma. An ear infection is always a possibility, as well. With pain this severe, you need to get to the cause, not just manage the pain ..... but you already know that.
Best thoughts and prayers.
Clarice
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Rhonda,
have you tried ibuprofen? I have found that taking 400 mgs of ibuprofen helps enormously whenever I have discomfort - it is an antiinflammatory too. Even a minor cold/sore throat can cause severe symptoms, because it results in additional swelling/irritation. I have found that I am much more sensitive to head colds, sinuses and allergies and I am pretty sure it is because of the additional irritation, on top of the AN. Also my tonsils on the AN side seem to be more sensitive. Fortunately these kinds of symptoms subside when I get better.
If your symptoms do not subside, of course you have to discount the possibility of extra growth too that might be causing these problems. Steroids can help too in case of swelling related symptoms. You are in good hands now with Dr. Sinclair, so I think you should contact him and ask his opinion.
I hope you will feel better soon.
Marianna
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That almost sounds like it might be trimengeal pain. Look into it! If you can convince someone what you think you might have then you have a better shot at being treated. Have you had a recent MRI? I would request one if not.
Good luck with getting better, hopefully its all just a cold.
Liz
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I would try any kind of anti-inflammatory, especially a prescription steroid. It sounds like the bugger is flaring up. For the pain itself, it may take something pretty strong to knock it down, especially if it is the trigeminal nerve. Like in the controlled substance category.
Surely hope you can get something to bring it down a notch or two.
Steve
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More than likely you are already at the hospital, but I would have said the same as Donnalynn, steroid??? Sounds like lots of swelling. The issue would be what might be causing it though, SO VERY GLAD to read you were going to ER. Sure they will check blood, etc. for infection and possibly CT or something.
So you are W & W status? (sorry I will check out one of the posts in your signature)
Best wishes and hope you got some answers and relief!
Denise
Rhonda, I am now modifying this after reading much of your posts. I have to say how much it must really stink how excited you were just 3 days ago to FINALLY find someone a bit closer, and now while waiting a month for more tests, etc. this had to come on. I am so sorry it has been such a LONG and crazy journey for you!!
I have to say I honestly know nothing about Canada and how things are available, etc. up there, but this forum has for sure been interesting in regards to some of that.
You mention geographical tongue and of course that was a bit odd for me. BOTH my boys had that when they were toddlers (no known reasons). They are now 11 1/2 and other 10 in a couple weeks. They haven't had that in years. Just weird how our bodies are.
Will be thinking of you & prayer all day!
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Oh Rhonda
I'm sorry to hear this. And I know how the wait is in the ER in Ontario...4-5hrs?? My last wait time was 7 hrs...ouch..
lPlease keep us informed.
jo
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I am so at my wits end!!! Sat there and had a doctor tell me that my tumour is in no way responsible for the pain I am experiencing. He also told me to drink a sip of water. Upon doing so, he said that my swallowing is doing fine so what's my problem? He also did not beleive that I had a tumour and called upon the records from Toronto Princess Maragaret and once he read them, he asked why they cannot operate. I told him it is too big. He asked why then am I seeking another doctor. I told him that he can do C.K. and that is what would help my situation. He said that there will be complications with that and cannot understand why I would think about doing that.
He asked why in the world am I there at the hospital. I told him I cannot go an entire weekend in such pain. He said he was NOT going to subscribe narcotics for pain, NOR any antiinflammatorys. Rather, go home and suck it up.
He actually treated me as if I was a drug seeker looking for my next fix. When in fact, I had not had any trylonols prescribed to me since 2005. So whatever!
I am so angry and disheartened and frusterated. My boyfriend actually called the hospital to complain about the treatment they gave me. They are going to do follow up on that. In the mean time, I have double dosed my clonazepam for anxiety and double dosed aleve naproxene for inflammation. On my way to bed obviously. Pretty bad that one has to over drug themselves to gain relief from an otherwise miserable painful existance.
I am only hoping this is all temporary. 10-4 good buddy xo
Oh , did i mention the ceasar drink to wash it all down? I admeit it, all's I can think about is over drugging and drinking to kill the pain. Never thought I would ever turn to this. I am not looking for sympathy,, I am only looking for others who have been so closed into a corner, that this has been your only hope too.
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did you try calling Dr. Sinclair in Ottawa? Surely he can help???? He also could send a script to your drugstore??
Hope you feel better upoin waking.
JO
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Rhonda ~
Considering your situation, I'm not sure when you'll be up to reading this but your horrible experience at the hospital was not only downright inhumane but should be illegal. That arrogant doctor is an incompetent idiot and could be the poster boy for physician insensitivity. One look at your medical records should show him that you're not 'a druggie looking for a fix' but that would require some intelligence on his part, which the man obviously does not have. Although I'm very skeptical about 'socialized medicine' I'm not at all sure your country's health care system is the culprit here. More likely just a bored, incompetent doctor with a very cynical attitude, too lazy to perform due diligence. We have those too (in the U.S.) and I fear they will tend to increase should our health care system end up being essentially government-run, but that's another subject for another thread.
I can only hope that your headache has subsided by the time you get around to reading this and that you'll never have such an experience with a doctor, again.
Jim
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Rhonda .....
All I can say is WOW, what made that doctor go into medicine as his chosen career??? You know that we know you are not a drug seeker. JO had a good suggestion to call Dr. Sinclair in Ottawa ..... you have nothing to lose.
I hope and pray that you will soon have relief, through treatment of some kind, albeit it radiation, surgery, or medication. This has gone on long enough!!
Many thoughts and prayers.
Clarice
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Hi Petgroomer! I`m so sorry to hear of all the problems your facing. There has to be some doctor who will take a better stance on helping you. Keep doing the best you can and hopefully you will hit the right combonation which will help you. Many prayers for you along the way, Mickey
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Hey all,
Up from my nap. I had a chance to re-read all the posts and my own posts.
I did infact call Dr. Sinclairs office yesterday and talked to his secretary who told me to try an emergency near my home (thier office is closed today and all of next week) and the emergency can rule out strep and ear infection. Then the emergency will probrably prescribe something that will alleviate the pain and reduce swelling.
Well.. they did rule out the infections, but then he looked at me and insinuated I was there for drugs alone with no symptoms. I cannot actually show him pain. He didn't believe me about the tumour and called Princess Margaret to get my records then came in and said, that my tumour on my 10th nerve is in NO WAY causing the pressure and pain that I am saying I am having. He just thinks it's in my head OR that I am seeking prescriptions.
Thank you all for your support. Without you all, I would feel very alone and actually a little insane.
I just want to be back to that fun, not a care in the world girl I used to be, even with a tumour I was still ok with everything..... but with this new found pain and pressure, I'm afraid of who and what I am becoming. ???
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wow petgroomer, Im sorry to hear of your uncomfortable pain and the ignorant doctors that treated you (or didnt treat you). I use to think I was born in the wrong country when it came to tumours but I'm not so sure now....anyway I don't know if this is any help seen as I live downunder but I take a mixture of paracetamol ( headache pills - tylenol I think over there) and codeine for my pain and it seems to work a treat and helps me sleep. I'm not sure if it is readily available by prescription or OTC there.
I hope you feel better soon
Jacqui
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Or take a trip to Toronto General or the Western. At least they have treated these tumours and could be of some help. It might be worth the 2 - 3 hour drive. Both have emergency services.
Virtual hugs and strength to deal with these seemingly incompetent, and obviously oblivious folks.
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WHAT??? That is outrageous to me. How could a doctor behave that way? I'm upset for you. Obviously he isn't an expert in these types of tumors, so how does he know what kind of pain it might cause?
I'm so sorry you were treated that way. I hope you feel better soon.
Lyn
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Lyn
I think because these are rare tumors, the docs mostly go by text book theories...My neurosurgeon told me that acoustic neuromas do NOT affect memory...I beg to differ...I am known for having or should I say use to have a great memory, but now there are holes in it...I believe that doctors need to listen to patients at times in order to learn something...I had to explain to my ENT about cyberknife as he never heard of it...well now he did his reseach and is thrilled with it...
JO
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Hey guys... another day... :)
I think stress brings on more pain. I am definately feeling better today. I was stressed about a certain issue this week and I really feel this brought about the extra swelling and pain. I have the regular pressure but not the excruciating pain and fullness I was feeling.
I am SO THANKFUL to all of you for all your help. There is no doubt that the doctor was an idiot! There is no doubt that more education has to be made in the clinical field. There is no doubt that I need to learn anti-stress techniques and that these will trigger exactly what I went through. I learned that first hand.
I almost feel back to normal. Just taking it easy on my voice,, not over using it. Still taking some 5 yr old naproxene for inflammation. Still taking alchohol to wash it all down.. :)
But it is amazing how my thinking suddenly changed from being a fun loving girl to one who didn't care what was up and who didn't care who I was becoming.
Thank you for supporting me... xoxoxoxo
Just today, my boyfriend stood infront of me and told me we are in this together... that means so much to me too. I know I am not out of the woods,, but I have a smile on my face :) :)
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Yeah, Rhonda! So glad you are feeling better today. Now that you know some of your trigger points, hopefully you will be better able to control the episodes. ..... and thank goodness you have a supportive boyfriend. Not sure how those without supportive significant others face these trials.
Be careful about washing down painkillers with alcohol, though ..... :-[
Best thoughts and continuing prayers.
Clarice
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Rhonda,
Do you not have a CD of your MRI to carry around with you? I have all the CD's of my MRI's and when ever I travel I bring them with me. Even if I am going down the QEW to visit family in Toronto the CD's are in my purse. I am suggesting this because it would have saved the battle you had with the ER doctor.
Unfortunately there are a lot of very rude doctors out there. I was referred to a brain surgeon who is brilliant, but on the 2nd visit he got me confused with another patient because his Internet was down. Yeah, that's the guy I want operating on my brain. My luck I'd wake up from surgery like Jack Nicholson did in One Flow Over the Cuckoo Nest. ;)
Happy to hear you are feeling better. I can also relate to the stress issue!!!
Anne Marie
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Hey Anne-Marie
Took some pics of my MRI on my black berry to the doc at the hospital.. he STILL did not believe it was me... duhhhhh... he literally thought I was a drug seeker...
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Hi Rhonda,
I'm glad to hear you are feeling a little better, anyway. It occurs to me that you might talk to Dr. Sinclair, and see if you can get a prescription set up in advance, just it case it happens again. This is sometimes done for radiation patients, for instance, so that if they have sudden severe swelling, they can get steroids quickly. After the fiasco at the ER you went through, Dr. Sinclair might agree to something like that.
Hope it stays in line for a while.
Steve
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Thanks Steve,, GREAT IDEA!!!
He's away all next week (at least his secretary said she is away all next week) not sure if that means him too.
I will call asap Monday. It is amazing how much better I feel today, than I did for the past week. It is crazy where my thoughts took me during that time.
Well, you all brought me through it... and once again, I want to say,, you're all life savers! Only you guys understand what each one of us goes through, the pain associated with it and the despair of not having a cure. I know I'd never be able to do it alone.
xoxoxo Biggest Hugs Ever!
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Wow, sorry I haven't been back on in 2 days since you were still at ER, but I would have to say "DITTO" to most of what others wrote. I have to say my jaw dropped and tears came to my eyes in a sorrow for what you had to deal with. I have had many of my own health issues over years and been through some crap, but that just sounded terrible!! I have also learned to be my #1 advocate and never be afraid to call a doctors call line on a weekend, holiday, anything!
You mention a 5 yr. old dose of Naproxene. Isn't that sold over the counter there? It has been here as a generic OR just Aleve at 220mg taken 1 every 8-12 hours BUT, have been told if needed take 2...........for temporary time only & recommended to try 1, then an hour or so later if it isn't kicking in. It is like many meds that used to be by prescription only, but now have came out in lower dose over the counter. Have to say too you mentioned some anxiety med called Clonazepam. Not familiar with it, but if it is for anxiety, so glad you had that & sure that is one of the biggest things that has helped you get through it. Although, you mentioned the alcohol part with it and as Donnalynn said, not good idea due to it dehydrating. Plus, alcohol is never recommended when taking any kinds of medinces. (just a thought, and my own opinion)
I also have tears in my eyes reading your comments on your boyfriend. Give him an extra big hug from a fellow forum member and tell him THANKS for being there.
I am still wishing you the BEST and hope all goes MUCH, MUCH better with your upcoming visits!
Denise