New to ASAP

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New to ASAP

Postby eebogan » Tue Oct 16, 2012 12:55 pm

Hello everyone,

I am 20 years old and when I was 17 I started having headaches. To set a good picture of what kind of person I used to be in high school I was a field commander in the marching band, played flute in concert band, played varsity volleyball, volunteered to be wrestling statistician for the high school team, on track team, was the head of the make up department in drama, also played a part in the musicals and plays in the drama department, played off-season volleyball, was able to attend Buckeye Girls State which is a huge honor here in the state of Ohio, and on top of it all, I had a 4.0 GPA. Until my last semester of my senior year, my symptoms became to hard to manage and my senior year I stopped everything. I isolated myself and broke up with my boyfriend of two years. The doctors blamed the headaches and neck pain on depression and my other disorders. I was also diagnosed with schizo-affective disorder, bipolar type II, and also and anxiety disorder. I had a CT scan that fall before graduation and they didn't find anything wrong with my brain. For two years, I thought I was making the pain up. But things kept getting worse, numbness, clumsiness, problems with sight, and hearing, even some fluctuations in body temperature. I was always hot and active, and suddenly, in a matter of two months, I lost 30 pounds and I was always cold. Literally my body temperature always stayed around 96 degrees. Finally, in spring 2011, I begged to have more testing and with and MRI of my cervical spine, they found a syrinx at c6-c7. They sent me to a neurologist where she gave me muscle relaxers and said it was depression making me tense. I went to physical therapy for three months. I went to another neurologist. Same thing. They said my syrinx was nothing and I was just depressed. In summer of 2011, I became overwhelmed and tried to kill myself. I was hospitalized for overdose. I just didn't know what to do anymore. Surprisingly, the only thing that kept me alive that summer was going to the Paul McCartney concert. Anyway, a few months ago, May 2012, I have a new neurologist who ordered another MRI of my cervical which showed my last syrinx resolved and a new one formed at c1-c2 level. Once again, my neurologist said it was just a finding and said not to be worried. I asked why I couldn't be diagnosed with syringomyelia and he said that the syrinx was just a finding. So he introduced botox injections. I stupidly agreed. I think he did the injections wrong because I had severe bruising. I begged my family doctor for another referral, finally to Cleveland Clinic. He didn't give me a diagnosis but ordered a lumbar puncture and MRV. The MRV came back normal but I am still waiting to get the lumbar puncture. I just feel like my doctors think I am making this all up. Finally yestday, October 15, 2012, my family doctor said I do have syringomyelia and she isn't sure why my neurologist aren't handling it. They won't address my syrinx. My first two neurologist didn't even know what a syrinx was and had to look it up!

If anyone is reading, I am going to attach a link to my blog, it is the only way I can explain my pain.
I only have 5 followers and no one understands in my life.
Because of this, it has created so much tension in my family and my relationship.
And when I go to talk to therapists, I always get rejected because of one of my problems, they say they don't feel comfortable talking to me and they think someone else can help.
I'm tired of being of having chronic pain and being alone and not knowing how to cope.

Please, I just want to know I am not alone and I am not that crazy.
Idiopathic Syringomyelia. Fibromyalgia.
"Life is what happens when you are busy making other plans." ~John Lennon
Feel Free to follow my blog:
Posts: 10
Joined: Tue Oct 16, 2012 12:27 pm
Location: Dayton, Ohio

Re: New to ASAP

Postby pmaxwell » Tue Oct 16, 2012 1:25 pm

I know a doctor at the Cleveland Clinic who is knowledgeable about syringomyelia. Edward Benzel. is a neurosurgeon. I think the neurologist who usually works with him is Richard Lederman. You have a lot of symptoms that are usually associated with pressure on the brain stem. Did they rule out Chiari in past MRI? They need to find what is causing the syrinxes to form. Just treating the syrinx is not going to help I don't think. They should check for bony abnormalities in the cervical area. Check for ICP (increased cranial pressure).

with the proper treatment things can turn around drastically for you so keep looking for answers.

best wishes,
Together We Can...
Posts: 153
Joined: Mon Jan 31, 2011 2:20 pm

Re: New to ASAP

Postby eebogan » Tue Oct 16, 2012 8:20 pm

They looked for CM in my original MRI but they haven't talked about anything else. Thank you so much! I am going to look into it! It's such a relief meeting everyone here.
Idiopathic Syringomyelia. Fibromyalgia.
"Life is what happens when you are busy making other plans." ~John Lennon
Feel Free to follow my blog:
Posts: 10
Joined: Tue Oct 16, 2012 12:27 pm
Location: Dayton, Ohio

Re: New to ASAP

Postby gunflint » Wed Oct 17, 2012 7:42 am

The first and most important rule when diagnosed with Syringomyelia is to find a NS that has experience with SM. I would advise you to look into pmaxwell's suggestion for a NS and run don't walk to them.
Posts: 266
Joined: Tue Jun 14, 2011 8:10 am
Location: Duluth Mn

Re: New to ASAP

Postby smann » Wed Oct 17, 2012 2:21 pm

Hi. I hope you're doing ok today. Don't lose hope. You will find a neurologist who understands and is knowledgeable about your problems. You may have to kiss a few frogs before you find the right one, but you will find the right one. I'm not convinced that you don't also have chiari. I would have that looked at again when you find the right neurologist. Be sure that you find one that has LOTS of experience with cm & sm. With these problems, you have to really fight for yourself. Most people & some dr.'s are unable to ever understand what you're going through. Unless you have been in this kind of pain and suffering, you can't comprehend it. Be sure to take all of your scans & mri's with you to the dr. Go asap to the dr. that gunflint recommended. You are not crazy and you're not by yourself.
[img][/img] Susan
Posts: 20
Joined: Thu Oct 11, 2012 1:17 pm

Re: New to ASAP

Postby drummergrl » Tue Oct 23, 2012 5:10 pm

Don't give up! It will get better- it might have its ups and downs, but there will be days when this is more manageable!

I saw Dr. Violette Recinos at the Cleveland Clinic a while back and really trusted her. She was able to determine that my syrinx is stable and not the cause of some other symptoms I've been having. She primarily works with younger patients, like you and I are, and her bedside manner is AMAZING. I've had doctors and nurses try to brush me off, too, so I know how that stings. But Dr. Recinos is incredibly realistic, patient, and knowledgable. I hope you have a good experience with whoever you see.

I don't have much to add- your symptoms vary from mine, and I have Chiari and am decompressed- but I just wanted to say hi. I was diagnosed at 16, and am now just a bit older than you, so I get it. I promise I do! It's hard enough just trying to be a teenager/young adult and then get this thrown at us, along with mean and judgmental physicians. BUT, like I said before, it gets better. I have my moments where I just want to throw something at the doctors, and other times I know things will work out.

Hang in there!
CM, SM, Scoliosis
Posts: 160
Joined: Thu May 17, 2007 4:01 pm

Re: New to ASAP

Postby chrisb » Mon Oct 29, 2012 8:16 pm

Dont give up alot of us deal with pain on a daily basis. And unless someone has dealt with the kinds of pain we deal with they just dont understand. You will never lead a "normal" life, but who is really normal? and WHAT is normal? no one can answer those questions. But do NOT give up. We here at ASAP DO understand what you are going threw. This site has helped me when I felt alone. I do have family support, when so many here do not, in that I am lucky. If you need to chat we are here for you. We are all in this together.
39yr old Army wife with 4 kids.
SM from c4-c5 thoughout entire spinalcord. Compressed C5 and L1. hydromyelia, Osteoporosis.
Posts: 50
Joined: Sat Jun 05, 2010 12:01 am

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