Let Me Introduce Myself

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Let Me Introduce Myself

Postby Miss Priss » Sat Mar 26, 2011 8:19 am

Hello, I'm Miss Priss. I live in North Carolina. I'm 58 years old, married, and have three grown children and our youngest, age 17 graduating high school this year. I have a degree in mechanical engineering and have worked for several public utilities in power production.

I was diagnosed with CM last Tuesday, and I'm in the middle of researching, reading, and being thankful for finally getting a concrete explaination of what's caused these symptoms since my early 30's. I ran across this board last night and joined this morning. I'm looking to meet people that have the same condition for advice and support.

When I was in my early 30's I had what they eventually diagnosed as menengitis. Horrible headache, high fever, vomiting. A few weeks after that, the headaches began.

I went to the first neurologist for the first battery of tests. They found nothing and I was put on an antidepressant for fibromialgia. I took it for a couple of months, but had no improvement in the headaches, so I stopped taking it. I continued having these headaches for years, with no relief.

Ten years later at age 44, I got another case of spinal menengitis. Went to about ten doctors over a year and my symptoms were still a mystery to everyone.

Four years ago, in addition to the headaches, I started having pain down my left arm, and in my ribs. This was the worst pain I'd ever had in my life. It felt like a toothache, but it was over 25% of my body. Pain meds didn't touch it.

The ortho doctor ordered an MRI and found three stenosis (on L3, L4, and L5). Since then I've been riding the cortisone injection, hydrocodone merry go round. Along with a good dose of feeling like a hypocondriac and drug addict.

A few weeks ago, after my ortho doctor's nurse giving me a hard time over refilling my pain meds, on a whim, I called and booked an appointment with a neurosurgeon. I took my four year old MRI, from the Ortho with me.

I was diagnosed in ten minutes with Chiari Malformation (7cm) ! I also learned that it isn't normal for your head to hurt every time you cough, sneeze, or lift something. It isn't normal to be walking across the room and suddenly fall. It isn't normal to be dizzy and nauseus all the time.

I'm waiting now for an MRI to be scheduled next week, then a follow up appointment with the neurosurgeon on April 20th.

This is my story, it's nice to meet everyone and I'm looking forward to getting to know you.
Miss Priss
 
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Joined: Sat Mar 26, 2011 7:23 am

Re: Let Me Introduce Myself

Postby razzle » Sat Mar 26, 2011 9:53 am

hello and sorry you are here under these circumstances . The number one thing is to get a NS that is a expert in Chiari . And Dr . Rosner is the man in your state . TRy to have your PC try to get into to see him. R

Rosner Michael J Dr

Ste 4, 80 Doctors Drive
Hendersonville, NC 28792-7289
(828) 684-1076
You might run across some websites where his license has been suspended but he has it now and is a excellant dr as many on here will say.
you can also type his name in the search box up top of this page and many posts will come up.
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Let Me Introduce Myself

Postby tennesseewalker » Sat Mar 26, 2011 1:45 pm

Welcome Miss Priss. I have a story similar to yours, only I had the advantage of my twin sister's diagnosis (which was also like yours). I was referred to a local NS by my PCP, and he did a wonderful job on me. At that time, he was fresh out of residency, but I now see he is on the chiari specialist list. If your NS diagnosed your CM at a glance, he knows his stuff. Good luck.

Mary
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
tennesseewalker
 
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Re: Let Me Introduce Myself

Postby Miss Priss » Sat Mar 26, 2011 5:17 pm

Thanks for the doctor's referral. I'm watching and listening carefully to this NS that's only thirty miles from where I live.

I was pretty impressed with him. He started by asking me about my headaches, which wasn't even why I was in his office. He wanted to know about the swelling on the back of my neck that happened whenever I got a spell with the bad headaches. Then he wanted details about the two cases of spinal mengitis that I had. Then he said, "Wait a minute, I want to get another look at your MRI".

He returned a few minutes later an invited me to go into his office and look at what he saw on the MRI. Sure enough, tonsils 7cm into the spinal column.

He said the first thing we need to do is get a new, full MRI of everything. So I'm waiting to get that scheduled for sometime next week, or the week after.

I have another appointment with him on April 24th.
Miss Priss
 
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Re: Let Me Introduce Myself

Postby Kate456 » Sat Mar 26, 2011 9:44 pm

Welcome Miss Priss,

It sounds like you have been through a lot but thank goodness you at least know what has been causing so many of your symptoms. I am in NC also and had surgery last fall. What part of the state are you in?

Kate
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Re: Let Me Introduce Myself

Postby Libby » Sat Mar 26, 2011 10:57 pm

Hi, I'm new to this website too. I am a 57 year old mother, my 30-year-old daughter was just diagnosed with CM 2 weeks ago; before that, she was "bipolar," "ADHD," addicted to pain killers, and has been suffering from many of the classic symptoms for years. We are awaiting her first meet with an NS in Lubbock in 3 weeks, and we are mentally trying to prepare for surgery. (she is 6-7 mm herniated). She has an 8-month-old son who also lives with us. My husband and I are struggling to be understanding of her struggles, and yet absorb all the possible implications and outcomes of this surgery. Frankly we are all terrified. Have lots of peoplewho love us who are praying and I'm so grateful for that. Is there anybody out there who can suggest ways that my husband and I can help our daughter without overwhelming her?
Libby
 
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Re: Let Me Introduce Myself

Postby Miss Priss » Sun Mar 27, 2011 7:35 am

Kate, I'm on the coast.

Libby, I've had symptoms since my early thirties. Thank God I've had a supportive family around me and it's only been the doctors that made me feel like a hypocondriac or drug addict. This is misdiagnosed almost every time it seems.
Miss Priss
 
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Re: Let Me Introduce Myself

Postby Miss Priss » Sun Mar 27, 2011 7:39 am

tennesseewalker, my family on both sides is from Chattanooga.
Miss Priss
 
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Re: Let Me Introduce Myself

Postby Kate456 » Sun Mar 27, 2011 8:49 am

Miss Priss,

Check your private messages. I sent you some more info!
Kate456
 
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Re: Let Me Introduce Myself

Postby Amy Joe » Mon Mar 28, 2011 5:47 am

Miss Priss, Welcome...sorry to hear of your years of struggling. I pray you get answers and help from your NS!

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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Re: Let Me Introduce Myself

Postby Miss Priss » Mon Mar 28, 2011 7:18 am

Libby, my advice is to just keep her life stress free and make her know that you will be there for her no matter what.

I know you're terrified. Anyone would be.
Miss Priss
 
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Re: Let Me Introduce Myself

Postby newknees » Mon Mar 28, 2011 4:37 pm

Hi all,
I am new to this site. I am a 45 your old wife and mother of 3. Have led a very active life, hiking, biking weight lifting, running etc.
I have had chronic back, leg and knee pain for the past 8 years. Had a partial knee replacement 1 year ago, that was not successful. My surgeon would like to remove the partial and perform a total knee replacement. I have had two unsuccessful decompression back surgeries in the lumbar region. I have constant pain in my head, neck, and shoulder blades. The pain travels down my arm. Constant sharp pains, tingling and numbness in my hand. I am unsteady on my feet and fall often.
I recently had a cervical MRI. The MRI showed minor disc protrusions and degeneration. As a side bar it was noted that a syrinx was present in the t2- t5-6 region. Thinking this may be the answer to the unexplained pain I have had for so long. My ortho says I need to have it monitored for many years and not to worry. He doesn't seem to think I need to see a specialist. I have done my research and have made an appt. with a neurologist. Not sure where to turn to next. I live in So. Cal. Does anyone know of any specialists So Cal?
newknees
 
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Re: Let Me Introduce Myself

Postby Kate456 » Mon Mar 28, 2011 8:26 pm

Hi new knees,

You might want to copy and paste your post as a new separate topic with a heading that is connected to your question so more people will read it. I am east coast but Roz and others will be able to help you out. You are right to see a specialist who deals with syringomyelia. Good luck!
Kate456
 
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