Alone and need reassurance that I'm doing the right thing

[HCSTARWIND]

Hello from a nervous ANer. I posted under physician find and had some helpful info given to me by the wonderful people on this discussion forum. Thank you. I have since made an appointment @ Johns Hopkins with a Neurotologist to f/u my increasing neurologic symptoms. My AN is very small as you can see below. Just had another MRI and Neurology stated that there was no change from the last one 8 mos ago. I have daily headaches that I have been managing in pain clinic. Some days are not so good. Recently had a trigeminal neuralgia attack that was NOT FUN! It was the most excruciating pain I have ever had. Taking medication for the neuralgia now. Feel dopey most of the time and no energy. I push myself on the treadmill just to feel better for a short time. Endorphin release helps. I also have cervical degenerative disease with a c6-7 fusion done 25 years ago. The arthritis arising from that area is haunting me now. The MRI shows a central protrusion of C5-6 centrally slightly compressing the spinal cord. I have tingling in my hands and lt. toes. ? MS symptoms from my DR. here. So I guess I am a mess. I asked JH if infact I should see a  neurologist instead of a neurotologist (ENT). They said I was seeing the right guy since I have this AN. My appointment is on Jan. 5th. Since my AN is so small I have a difficult time believing that it could be causing me so much trouble. I forgot about things for awhile and worked on getting healthy. I thought it might help me emotionally and physically but today I am so down. All apart of this process as I have read on this forum. I hope to get some more answers from JH. and this is not a waste of time. I may just have to resign to live like this . Can't work in the job I love. There I vented. I hope this makes sense. Helen

[MAlegant]

Hi Helen,
So sorry for what you're going though.  Even though it's small, it must be aggravating something (like the trigeminal nerve).  How about getting a second opinion?  From a different doctor (AN specialist) and hospital. 

Hang in there, you may just decide to stop watching and waiting.  I personally am so glad the little bugger is outta my head!

 I'm sending good thoughts your way.
Best,
Marci

[Mickey]

Hi Helen! I`m a wait and watcher also. My AN is a little bigger but my symptoms are very bearable. I`m hopiing you find out what`s causing your problem and get it treated to make you feel better. I`m sure every AN is unique and as slow moving as they are supposed to be give you time to plot your course. Of course no matter what size if the symptoms become not bearable I would suggest treating it is your best option to future relief.  Good Luck, prayers are with you! Fellow W+W,

[sgerrard]

Hi Helen,

If it turns out the symptoms are from your AN, I would not hesitate to get it treated. If it is going to be a pest, best to get it while it is small. Hopefully you will get some insight from your appointment in January, and hopefully it won't be too bad to wait that long.

Best wishes,

Steve

[HCSTARWIND]

Hello again- just took a nice long bubble bath and I feel better. Self care is so important . Thank you for your support. Steve awhile back PPearl posted a list of questions to ask the dr.'s . I can't find it for the life of me. If you have it could you pass it along? I do better if I write things down and am prepared. This is my third opinion on this tumor and neuro sequelae Steve. I plan to have more I'm sure. My face is already showing signs of weakness in my lower jaw and neck. Difficult to swallow at times. I just don't want to lose my facial nerve function. Hearing is about the same. About 60-70% but my face is numb and tingley on left side. Sometimes I wonder if it is all in my head  psychologically that is. Thanks again. Helen

[Tisha]

Helen,

I'm so sorry you are having so much pain.  It does seem you AN is causing you issues and it's a very good thing that you are getting it checked out.   As far as your back arthritis pain, did you read my post about acupuncture?  I highly suggest you give a try.  I'm very conservative and skeptical by nature and after over a year of all the traditional methods of pain relief, doesn't to try it.  I figured it couldn't hurt.  I did think about it for a long time though.  As far as I"m concerned, it's like a miracle drug, but without any chemcals in my body.  I can't remember the last time I took a celebrex or did my therapy exercises.  I'm up to only going every 2 months now.  Please consider it.  It does take going every week for around 4 weeks to start feeling relief..then you go every 2 weeks and if that works, every 3, etc.    Good luck and take care.

Tisha

[HCSTARWIND]

Hi Tisha

Yes I am doing acupuncture. In fact it is called Classical Five Element acupuncture. They look for the causative factor in all disease. Disease in the body is just that, DIS-EASE. I am actually traveling two hours away every other week to see a guy who has been doing this for some 16 years and came highly recommended. He is also an Herbalist. I have been taking pharmacutical herbs that do help me some. They say where there is blood flowing there is no pain. Well I do feel better after tx sometimes it takes a day or so before I notice. Sometimes I have more pain initially. I will do anything to feel better.

I hope you are doing ok. I see you suffer from neck issues as well. Heat, especially moist heat to the back of your head will help. Easy on the NSAIDS. They can come back to haunt you with vascular problems later. Not good for the liver or kidneys.

Well , I am hoping I can get some answers from J.H. I am planning to stay to see any other Dr. he recommends, ie , Neurologist. I just have this feeling that it is also an autoimmune disease such as MS. I have so many of the symptoms. I went through a metastatic workup 2 years ago to rule out cancer in my body from a possible unknown primary. All came back ok then but things are just progressive now.

Take care and thanks for all your support. Stay in touch. Helen

[Jim Scott]

Helen:

I'm so sorry to learn of your travails and can only hope and pray that things improve for you, soon.  I trust your consultation with the Neurotologist will prove useful and encouraging.

Here is a link to an old thread that contains a list of (possible) questions for the doctor:  http://anausa.org/forum/index.php?topic=53.0.  I hope it's what you were looking for. 

Please stay in touch with us.  Thanks. 

Jim





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[leapyrtwins]

Helen -

I just read in another post that Kim has scheduled surgery at Johns Hopkins.  Maybe her post will give a little insight into the docs she is seeing there.  Here it is http://anausa.org/forum/index.php?topic=8321.0

Hope this helps.

Remember we are all here for you 

Hang in there,

Jan

[JudyT]

I was in the watch and wait mode for 1 year.....my An small like yours....Mine started to encroach on the 5th too....I jumped in with reseach etc.....and pursued Ck (Stanford) 4 years ago....successful proceedure....dead tumor now....BUT left many issues.....my road of watch and wait (mostly denial) was not the best choice for me. If I had it to do again I would have gone for it as soon as I was diagnosed....I am deaf on the left side...experience trigeminal pain (on occasion) very painful spurts....facial numbness...eye/vision issues....extreme balance issues.....fatigue...insomnia...mood swings....fear/frustration/depression.....headches....cognitive thinking problems sinus pressure tinnitus/noise...etc. etc. My blessing is it's DEAD.....so Dr. Adler says. Coping is my dilema....I am 68...a widow....I was always socially active....now I find myself retreating to solitude as I don't want to embarrass myself with hearing/sound.....etc. It's not as grim a picture as this predicts though.....It could be worse. I have a very blessed life....financially sound in these troubled times....3 sons/wonderful spouses....5 delightful grandchildren...my JOY....incredible friends and enjoy painting...piano....creating topiaries....and many other things. This site and CK site are MOST helpful....supportive/informative/encouraging and sooooo much more. Everyone is different yet the same....don't feel alone....you aren't...we are here and we care.
Take heart....be a strong advocate for yourself.....we're alive....doing it "our way".....
Judy in California

[Keeping Up]

Hi Helen

Just sending hugs and well wishes. 

I think the potential for nerve pain (doesn't strike everyone) is one of my greater fears.  My mom suffers from chronic pain related to nerves (can't remember the real name) and it makes her life extremely difficult.  To think the AN could trigger such pain has me a bit scared - if not this year, maybe much further down the road (I am 37 years old, and blessedly, completely pain free - until I get anxious!)

Do your research.  I agree with one of the other posters - figure some of it out, get your consults and make your decisions known.

I do hope you find reassurances within this board - I find it quite amazing - many will have great advice to follow (I'm a newbie so can't offer much!).

Ann

[wendysig]

Helen,
I'm so sorry to read about all the problems you have been experiencing.  Unfortunately, an AN doesn't have to be very big to cause major problems, it's location plays a very big role in what it effects and obviously yours is in  a bad location.  In my opinion treating it sooner than later is probably best, but I am not a doctor, just a fellow ANer.  If I were you I would go for as many consultaitons as I felt I needed to be comfortable making my treatment choice and then just go for it.  I wish you luck and no more complications.

Best wishes,
Wendy