What next?

Picking up where I left off...

The NP called me back. Unlike past times I've met with her, she seemed rushed and distant. Maybe because she wasn't getting paid for this encounter as she would with an appointment in the clinic. Maybe because she wanted to get out of work on time and get home for dinner. Either way, I felt she didn't give me all of the answers/attention I needed to ease my mind.

Q:Where and size?
A:C6-C7 2.5 cm syrinx, and syrinxes mildly throughout my thoracic spine
Q:Activity Limits?
A:Straining, heavy lifting, shoveling heavy loads, the Valsalva maneuver, etc.
Q:Symptoms I should be watching for or that I should come in for?
A:Balance disturbances, weakness, loss of sensation, bowel/bladder issues, swallowing trouble, and change in type or frequency of symptoms.
Q:Frequency of MRIs and Dr. visits?
A:Follow-up Dr. visits every 6 months, with annual MRIs to check for expansion
Q:Impact on pregnancy?
A:I would need to consult a neurosurgeon prior to getting pregnant. Pregnancy and delivery can be a huge strain on the spinal cord. Surgery may not be necessary but they would be able to best recommend a course of action.
Q:Any doubt it could be something else?
A:Other various neuropathies are possible but unlikely at this time. If things progress the next step would be to do a EMG.

She also made note that my syrinxes are not caused by the Chiari malformation as many cases are. Mine may have been caused as a result of trauma from my car accident years ago, or could be idiopathic.

That is all I got from her.

My mind is still racing. She told me not to worry and not to look stuff up online. But how can I not? She was fairly quick and vague with her responses. So here is what I've found that concerns me:

- Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing or straining. (http://www.ninds.nih.gov/disorders/syringomyelia/syringomyelia.htm)
Really? Coughing? Each time I have coughed since I read this the first thing that goes through my mind is: Are my syrinxes expanding???

-Recurrence of syringomyelia after surgery may make additional operations necessary; these may not be completely successful over the long term. (http://www.ninds.nih.gov/disorders/syringomyelia/syringomyelia.htm)

Awesome....

-Pregnancy and vaginal delivery can be a relative contraindication for patients with syringomyelia. Pregnant patients may require special care because pushing and straining during vaginal delivery can potentially enlarge a syrinx. Although a C-section may be recommended, patients should have a full discussion with their obstetrician. (http://www.spineuniverse.com/conditions/what-syringomyelia)

Pregnancy a contradiction.... vaginal delivery a contradiction.... recommended C-section.... (not mentioned here but other areas: avoiding epidurals....) There goes the majority of everything I ever wanted in life. 4 to 5 kids will not be likely under an anesthesia-aided c-section, it is barely recommended to have more than 3 c-sections and a large part of that is how one's body heals. What about working with a midwife? Can I still have the water births I've wanted? Will the water relieve spinal strain, maybe with the help of pain medication to avoid the CSF increases associated with labor pains? I guess first of all... can I even safely carry a baby to term without risk of destroying my spinal cord?

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-About 20% of all patients died at an average age of 47 years. (http://www.arachnoiditis.info/website_captures/syringomyelia_copyfromweb.htm)

WHAT?! I have a 1 in 5 chance of dying before the age of 50??? Are you freaking serious?! I need to find out more on this...

-Shunting of syrinx cavities, when performed alone, historically has been complicated by a high rate (up to 50%) of shunt failure or blockage and recurrent cyst expansion. (http://emedicine.medscape.com/article/322348-treatment)

Another lame treatment.

-Avoid activities that may make symptoms worse
If you've been diagnosed with syringomyelia, avoid any activity that involves lifting, straining, or putting excessive force on your spine. These activities include, among others: Playing high-impact sports, such as football and rugby, Riding roller coasters, Skydiving, Straining during a bowel movement, Excessive coughing (talk to your doctor about treatment if coughing persists), Lifting anything that weighs more than 15 pounds (http://www.mayoclinic.com/health/syringomyelia/DS01127/DSECTION=lifestyle-and-home-remedies)

High impact....does that include running? On some websites it does. No more rollercoasters?! Again with the coughing... And not lifting anything more than 15lbs!!!!!! How is that possible? My purse practically weighs 15lbs... okay, well maybe not that much. But still. How can I lift weights to maintain my physical fitness when things get worse?

I don't like any of this. Not at all. Please... if you are reading this and know something helpful or can help clarify things for me - I would more than appreciate answers and advice.