face pain and symptoms

[Mom2boys]

Do any of you ever experience face pain in the way of pins and needles, eye pain or sinus pain on one side of your face? I have face pain on my right side. I also have tooth pain every once in awhile hence my first Dx of Trigeminal Neuroapathy. Now Dr Leosure and Dr Truelove at the UofW believe ACM may indeed be the cause of my pain due to other symptoms I have and that meds used to regulate TN have been unsucessful. Both Neuros did not believe I had TN from the beginning (I was referred to them by a Neuro with TN as an origional Dx) but as you know Neruo condtions are very difficult to Dx and moreso to treat.

I also get severe pain in on the top of my head as well as in my neck. Some days the pain radiates down to my shoulder or high breast muscle or the muscle just below my collar bone and into my shoulder and ends in my hand where it is hard to hold a pencil or hair brush. I can not carry a handbag or touch my shoulder. It hurts soooo badly. Advil and Tylenol does not touch the pain. When I have episodes like this I am extremely dizzy and almost feel confused. It could be from eating Advil like Tic Tacs ;)

I thought I would see if any of you experience similar symptoms. I notice a huge change when the weather changes.

I go in for an MRI to measure the fluid around my brain tomorrow night. I then see Dr Ellenbogen at the UofW on July 30th.


Thanks for your support,
L.
Seattle, Wa

[Nanna B]

Hi Mom of 2 boys,
I am sorry you are not feeling well. I can only speak to a few of the things you are experiencing.

I have had numbness on the right side of the face, just under my eye. It felt like I had dental work and the novacaine was wearing off. So I am pretty sure it was a nerve thing.

Weird, sometimes it feels like my sinuses are moving. I think it is just extra fluid built up in the noggin.

I do have an occasional eye pain. Never anything alarming, though.

I have had the pleasure of having spasms on my tongue, throat, and under my jaw.

I don't carry a purse anymore, way too heavy and too painful. I have a wallet on a string, pretty sad really.

My arm pain was determined to be carpal and cubital tunnel syndrome. I have had some relief from wrist wraps.

Head, neck pain, and dizzies are just normal parts of my being. I do feel different when the weather changes.

The hardest part of accepting this dx is losing my mental capacity-function. Remembering, thinking, spelling, reading and talking are challenging at times.

I hope I did not sound too negative. But I just want you to know what you are experiencing, you are not alone. I hope you get good results from your tests. Sounds like your drs. know which tests to do. That is good!

I have ACM, TCS, and EDS. Surgery for the tethered cord is Tues. July 24.

Take care,
Nan

[Mom2boys]

Hi Nan,

Interresting??? "The hardest part of accepting this dx is losing my mental capacity-function. Remembering, thinking, spelling, reading and talking are challenging at times."- Is it difficult b/c of the meds you need to take or a symptom of ACM? My memory is not what it used to be and I get far more confused. I thought it was due to taking Anticunvultants for my TN Dx but I have been off Trileptal for almost a month and I still feel the same. I thought dizziness was due to my meds as well but I am still needing to plant my feet at times for I feel Im swerving when I walk. Or I will be sitting and it feels like someone is pushing my head down or the world spins around me. Oh and the blurred vision... OMGoodness!!!! :eek: I am an Electrical Engineering manager so the last thing I need to feel is "sharp as a marble" LOL!

I have the novicaine feeling as well, like Ive been to the dentist.

I believe that technology will catch up, I just cant panic. I feel like I have been chasing a lucid neuro Dx for five years now and over time I have found a calm amongst the confusion. I just hope I continue to have really good days along with the really painful ones. So far so good!

How long have you had ACM? Im sorry I do not know what the additonal abbreviations stand for.

Thanks for your reply,
L.

[Nanna B]

Hi L,
I am not on any meds other than ibuprofen, advil, etc. I was taking nutrional supplements, but have now stopped. So I wish I could blame my confusion on all that. But I guess it is just me.

I recently went to the Chiari Institute and they told me they are now doing a study on mental function with the patients with Chiari. I find that facinating.

I am glad, though, that you were able to get the correct dx. Now you can get the help you need.

For me, I was just recently dx as of March '07. That is when I had my MRI. Two doctors thought I either had a brain tumor or MS. Finally, the one was smart enough to order the MRI. I feel very fortunate because I got my dx very quickly. I had just started seeing the doctor for symptoms in Oct '06.

Then in June we went to the Chiari Institute. The doctors there are very thorough. I found out that I have retroflex odontiod, Ehlers-Danlos Syndrome(EDS-is a connective tissue disease)and Occult Tethered Cord Syndrome (TCS), and cubital and carpal tunnel syndrome.

Well, I am hoping all our days are pain free!
Take Care,
Nan

If you go on the Chiari Institute website, they have videos you can watch. They are very informative!

[maridane]

and I find that on the days that I really am not feeling well, talking to anyone is just exhausting. It wears me out to the point that I just don't want to speak to anyone. My husband will ask me if everything is ok on days like this. I just tell him I am hurting and we leave it at that.
Marilyn

[Jess]

Your symptoms are almost identicle to mine before I had surgery. The surgery has helped me so much with regard to symptom alleviation. Good luck.