Looking for answers

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Looking for answers

Postby Lia » Thu Jun 28, 2007 10:21 pm

Hi everyone. I am new here. Hope i am posting in the right page. I am soooo happy to have found this forum. I am at witts end with my new diganosis. Yeap, or at least this is what my recent MRI says. Feels like a death sentence or wheelchair future. :( hope you can help me. have been in pain for serveral yeas and just liike eveyone else here i have been given the run around. Different meds for pain etc same story. They even treated me for TMJ and did a Biop. for Temporal Arterialitis (of course, it was neg) have been to orthro, Rematologist, and so on. After saying no to me for MRI. I kept insisting because my pain just gets worst. Was sent to neurologist and had soem test done all for carpal tunn. neg. so he sent me for mri. Mri says there is cerebellar tonsillar about 6mm (is this big?) with MC1 < Difuse syringohydromyelia suspected throughtout cs and upper thoracic extending to t4 . moderate diffuse c spondylosis. diffuse disc space narrowing posterior central dis protrusion at c2-3 c3 and 4 no cc stenosis. c5-6 morderate right sided neural foraminal narrowing secondary to asymmertic right sided unconvertebral joint. hypertrophic degeneratve changes. That was the impression of my Mri. To me this is a death senence cause do not understand any of it. He gave me the results, and read them to me. and said you need to see a neurosugeon. My office will call you and give you and appointment with one. I tried to ask questions and he just brushed me off. now i understand why. Plus i have waited 2 wks .and no one has called me. So i ma beginning to think he forgot about me dah. (slapping my own face) I got and the net and found this group, I can understand on thing and that is that i am in for a long journey of pain. But i hope that with your help i can make it through. I am 55 and feel like 90+ I thought that most of this was do to aging. First and most important i want to thank everyone here for being so supportive. Second if someone kindly help me find a nuerosurgon i can talk to. Don't know if there are any near me that work with this kind of disease. I live in Florida, close to Daytona. I am willing to travel if need be, I am afraid this thing in my spine is going to bust with all the pain i am having. I am taking pain med that my PD gave me. but he does not know anyone who can help me so he told me to look in im insurance book. But there are only nuerologist in my book. Please someone expalin to me what is happening cause and amd about to go crazy. than you all
Lia
 
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welcome Lia

Postby razzle51 » Fri Jun 29, 2007 4:42 am

Hello , there is a Chiari expert in your State Dr. Barth Green : Here is a list of experts from the ASAP website.

http://asap.org/organization/advisory-board.html

also:
Full-screenNeurosurgeon
Dr. Eric Trumble
Orlando, Fl
(407) 236-0006
Fax (407) 236-0007
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby cash71 » Fri Jun 29, 2007 11:09 am

Hi Lia,

Welcome to the board! I'm so glad that you found your way here. this is an excellent place for education and support. We all need to lean on each other b/c as you have said it is a long journey.

The biggest piece of advice I could give you is to get to an expert in the care of sm/cm. I have heard lots of great things about Dr. Green so I would put my energies into getting there. Find out how you go about getting an appointment with him. I would not waste my time going to see a ns in your local area. This is such an under recognized and poorly understood disorder that even many ns do not know much about it and you will not get proper treatment until you get to an expert.

As far as whether 6mm is big. It isn't really about size. Some people have small herniations with tonnes of symptoms and some have very large herniations with little to no symptoms. Another thing you can do for yourself is to get educated so that you can advocate for yourself when you run into on of these docs that don't know what they are talking about.

The ASAP homepage has lots of great info on it and so does www.thechiariinstitute.com click on the videos link and watch the ones that pertain to you.

Most of us have had to modify the things that we do to reduce pain and you may have to as well. sometimes it helps to keep a journal to figure out things that cause the worst flare ups in symptoms. Of course you can't change everything but sometimes you can modify things that hurt the most. If you go to www.wacma.com and click on onsite info you will find a symptom alleviation list that gives some good general tips on what to advoid.

Hope some of this is helpful. I welcome you again and hope to see you around for a long time to come.

Caroline :D
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby Lia » Thu Jul 12, 2007 9:46 pm

Than you for your response. Sorry it is so late. I ws having computer problems than I could not sign on. Finally i am on again. Iti s late tonite but i will post and join everyone tomorrow. again i am sorry for being so late in saying thank you nd how grateful i am to have found this place. Good night all have a pain free night.
Lia
Lia
 
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Postby petsmom » Sun Jul 15, 2007 4:49 pm

Lia,

First, could you please use a short paragraph format in the future so easier to read and digest. Thanks

Second, this is not necessarily a doom and gloom diagnosis!!! Take a deep breath and try to chill a bit. Getting stressed can make it seem worse or actually cause more pain. Is it natural to get scaird as heck when taking all this info in??? Yep!! Overwhelming stuff.

Not going to kill you. May not cripple you. Unwind and slowly take in the info. Keep some sort of journal to help you and doctors. Yes, there are flair ups of symptoms and yes, feels like spine is exploding or something like that. It can be scairy!! We all been there/done that.

Even the experts do not jump to do surgery on us. It is not a quick band aid fixer upper for us. They would look for progressive nerve damage from the spine and crippling issues. Mine is T5-T9 and holding. I live with it. Try to ignore it best I can. Surgery not a option for me even if needed.
I would much rather slowly cripple up then rush things with surgery by some doc wanting to make a buck.

I am under care of a neurologist. MRIs done and reviewed. Symptoms documented. I take one day at a time, find ways to keep occupied and leave the rest to the Lord. Dwelling over what ifs and the future is wasted effort. It will not help matters and actually can tense us up and cause more pain.

So stick around and learn all you can. Remember it affects all of us differently. There are many common symptoms most of us experience and once you are aware of what is "normal" then things are less scairy. You will know when to take it in stride and what actually means you need to call 911 or your doctor. Big difference.

I went thru the "nightmare" phase after seeing "syringomyelia" on my MRI and winding up here at ASAP. Read too much and got scaird. Then I had to make myself chill a bit. It does help to read that others also experienced a particular "weird" sensation, not just you. How they handled it, how normal it is, and does it mean things are getting worse???

For those of us of Faith, we just pray a lot harder. If not of Faith then we will pray for you. Lots of support here!!

Welcome aBoard,

Dawn, relax and hug a puppie
I am not my disorder. It does not define me as a Person.
DDD, SM thoracic
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Postby Lia » Sun Jul 15, 2007 9:17 pm

Thank you again petsmom. These answers have brought much relief to my mind.

I am looking into going to N.Y., It is funny how life is. I lived in long Island 15 years and travled on the LIE., everyday, and never once did i see the TCI building. I told my dh about it and he said "oh ya, that is the place were they crack your head open and experiment. I told him that unless he comes up with A NS degree and able to treat me himself, I will go were i thought was best for me.

I was so stressed out on friday night I think took my blood pressure pill twice and i took a xanax and 1/2 of flexril, all within a 2 hr. span. i went to sleep and about 3 a.m went to the bathroom. On my way out I felt my body limp and fell down. My dh said did you fall, and I answered yes..
when he tried to help me up i had no strength.

Finally he got me up and help me to the bed. He was gonna call the ambulance cause it might have been a mini sroke. I told him no cause I was feeling better and that i would be ok. I drank some water and went back to sleep. Has this happened to anyone? (I think my blood pressure went to low)

The next day my dh said to me not to forget to call TCI and see what arrangements can be made. Scared him as much as it did me. Since I got my dx seems like all the symptoms that were hidden are coming out.

Yes, I do have a lot of faith but that too can be put through a test. Keep me in your prayers as i will all of you. I have found a home away from the negative people around me. Thanks for listening.

thank you Gracie Rose for your pm

Hugs Lia
Lia
 
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Postby Starfire » Tue Jul 17, 2007 8:27 am

Lia,

It is wonderful to have others that understand. I too am going through the
same process as you. I was diagnois just recently. It isn't a easy process.
But just reading what others are and have experinced helps.

We all are making this journey together.
Starfire
 

dr Green

Postby razzle51 » Tue Jul 17, 2007 9:49 am

Did you ever look into Dr. Green from Florida

Barth Green, MD.
http://neurosurgery.med.miami.edu/x66.xml?id=34983
Professor and Chairman
Department of Neurosurgery
University of Miami
Miami, Florida
The Miami Project to Cure Paralysis
http://www.miamiproject.miami.edu

since yu live in Florida
Last edited by razzle51 on Tue Jul 17, 2007 12:32 pm, edited 1 time in total.
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby the 4ks » Tue Jul 17, 2007 11:47 am

TCI is the place to go. They are wonderful there and they will answer alot of your questions.
I would call them as soon as you can.
Good Luck to you.
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Postby Lia » Tue Jul 17, 2007 4:18 pm

I asked for an appointment at TCI through the computer. Is there someone there who answers those e-mails? Maybe i should have called instead. :?:

Yes, Razzle, I did look up Dr. Green and still undecided what to do but had to start somewhere.. Has anyone on the boards used Dr. Green?

Guess i can do either one, Miami is 5hr. from me. But distance is not an issue now my DH is willing to go anywere. I just don't see too many people using DR. Green.

If i go to N.Y. i will to fly, and at the same time visit my family. N.Y is my hometown. I am a bit scared to go there after 911 and everything else that goes on, but as alway N>Y is Beautiful.

The only problem i have with N.Y is if they have to operate. (which i am hoping not) My children want to be arould me. Anyway, I know i have to see someone and soon so i am waiting to see when TCI, will scheduled me for.

Since i was dx, I have been getting mega panic attack, feel like crying all day and deal with pain at the same time. I pray to God every morning to help us get through the day, and every evening to help us get through the night. Since I fell this past week-end, i am afraid to fall again.
I have faith all are praying are breaking through the heavens ito Gods ears.
thanks all for listening hugs Lia
Lia
 
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Joined: Thu Jun 28, 2007 9:45 pm
Location: Florida

Postby the 4ks » Wed Jul 18, 2007 7:33 am

Your lucky to have family in NY, that will give you some place to stay. And hopefully give you support.
Plus you can see the Drs at TCI and see your family.
Its a win win situation.
Good Luck
the 4ks
 
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