What can I expect

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What can I expect

Postby Ande138 » Thu Jun 21, 2007 6:31 pm

I was in a car accident last August. My back was hurting so I went to the Doctor. He told me " you are 30 years old you get over it come back and see me in a month". So I went to a cayropractor and let him crack my back for 4 months until my MRI showed a syrnix. I have been to a Neurologist and he sent me for some more x-rays another MRI and some test that I could not take because I would not pay the doc $1000.00 before he did it. Besides the limping the pain and not sleeping what else can I expect? I have to find a new line of work. I am a carpenter. So I think thats pushing it. How do you explain to other people how it feels? I have already had a relationship ruined because I am always tired. I'm kinda scared to even try again. Is it time for me to just pack up and go do everything I have always wanted to do? Or will it get better? I am new to all of this and the Doctors all want to spend my money to fix me. From what I have read I don't know what to think. Any advise or suggestions would be great.
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Postby jjames » Thu Jun 21, 2007 8:00 pm

Ande -
It is hard for anyone to tell you exactly what to expect, as each of us have different symptoms and different experiences. Some have a syrinx due to an accident (like yourself) and other of us have syrinxes due to a congenitial disorder, ACM. Every body react differently to the syrinx. Some have a very small syrinx and have many, many symptoms. Others have a very large syrinx and hardly any symptoms. I know does not help, but just know that there are lots of people out there going through what you are going through, and are here to listen, support you, and answer questions to the best of our abilities. My first advice would be to post your location and try to find a trustworthy doctor; one who you are comfortable with and who really listens to you. Then, do as much research as you can, and ask as many questions as you can. There is no such thing as a stupid question. Many of us feel like we are in this alone, but you have found an amazing support group here. Keep your head up, and don't let go of the hope. :)
~Everything is always ok in the end. If it's not, then it isn't the end.~

1998 Decompression; 2007 PFR @ TCI
Syrinx C1-T10
Mild Scoliosis
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Postby Ande138 » Thu Jun 21, 2007 8:36 pm

Thank you very much. I am in Virginia Beach, Virginia. I would like to know of any Doctors close. I can't stand the feeling I get its like they think Iam insane or lying.
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Postby razzle51 » Fri Jun 22, 2007 4:57 am

Dr. Stuart Stark
The Neurology & Headache Treatment Center
Alexandria, VA 22304
Tel: 703.212.0700
Fax: 703.212.0705
Jackson B. Salvant,Jr .M.D.
1651 N. Parham Rd.
Richmond, VA. 23229 (804)288-8204
Dr. Harold Young MCV Hospitals
Richmond, VA. 23261 (804)828-9165

Dr. John Harbison
Division of Neuro-opthamology
Medical College of Virginia
Richmond Eye and Ear

Dr. Joe Ordonez
Neurosurgical Associates
400 Gresham Drive, Suite 200
Norfolk, VA 23507

Hope this helps
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 Ande138 » Fri Jun 22, 2007 7:07 am

Yes Thank You Razzle51
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Postby razzle51 » Fri Jun 22, 2007 7:14 am

These are Drs recommended on other SM/CM sites by patients .
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 specialmomx2 » Fri Jun 22, 2007 8:01 am

Hi Ande,

Welcome to the club no-one wants to join.

You need to find yourself an expert in Syringomyelia. You also need to educate yourself as much as possible on your conditions(s) and finding this board is a great start on that path.

The general consensus on SM it to try and find the cause. If they can find whatever is disrupting the flow of spinal fluid, and remove that cause, the hope is that the syrinx wil self-resolve.

For some of us (myself included) they cannot find a cause, and we are stuck trying to help ourselves any way we can. Many of us have had sucess with some supplements and dietary changes.

Also, there can be other stuff going on. Many of us are deficient in vitamin B12, so loading up on that, or even getting B12 shots can help. Your regular doctor can check your blood serum B12 levels.

I had more, but it's gone. I guess it's just as well. I shouldn't overwhelm you when you just arrived!

"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

check out my blog: www.onesickmother.com
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Postby Ande138 » Fri Jun 22, 2007 9:06 am

Thanks for the advice Paula. I have to take things as they come. I am trying to find a job that has insurance. I'm killing myself trying to work and pay for all doc visits and tests. At this rate I will die from exaustion first. My insurance leaves a lot to be desired. I think you get a better deal if you just give the doc your Library Card. Thanks for all the info from everyone. I am proud to be a part of your club.
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Postby kiminfla » Fri Jun 22, 2007 9:14 am

Ande, Just wanted to add my welcome. I hope one of those doctors Roz recommended will be able and willing to help you. We're here for you. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby Kraftwerkgrl » Fri Jun 22, 2007 10:58 am

I am very used to fighting with insurance (am just getting out of an HMO and i could pull teeth easier than getting them to understand why i needed to see someone in a larger city let alone another state). The cost to see someone who really understands this issue is a lot higher than most of us can afford i think (i know i cant). in some ways its a full time job just to figure out what is going on. and its easy to freak out about how can i take off time from work and go here and do this and pay for it. I know that sometimes you can apply for aid threw local and state funded programs. there once again is a fair amount of leg work to get anywhere with that. and it always seems like i make just over the amount that they will help (why cant they facter in bills?).

it is hard to say what will happen. there will be good days and there will be bad days. some days you might feel strong and positive other days its going to rain no matter what anyone says. but everyone on the board is really helpful and nice. And sometimes its just so fantastic to chat with people who know how you feel.

you arent alone. and welcome :o)


Postby Ande138 » Fri Jun 22, 2007 5:25 pm

Thanks so much for all of the help and words of encoragement. It really helps knowing that I'm not alone or crazy. Thanks to everyone.
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