Monday, June 29, 2009

Update - It's Been Quite A While!!

I have experienced several progressions since my last post. The pain continues to worsen, I began having severe spasms in my thighs and spine, the tremors always worsen, the headaches are daily now but only on the right (lower back) side of my head that have caused previous on-going neck pain to increase w/spasms.

My husband and I had a discussion with the physiatrist to try to see if there were any new treatment options available to me. We discussed syrinx stenting (rather than shunting) and several surgical treatment options for pain.

Two pain treatment options were ruled out immediately due to the potential to cause trauma to other areas of the nervous system. Stenting isn't a preferable, or logical, option for me, as far as I'm concerned, and the doctor wasn't too keen on it either but since it is now an available treatment option he was willing to discuss it with the neurosurgeon. The doctor then suggested we try an intrathecal pain pump. After a thorough explanation (we thought), Mickey and I agreed that this might be the better path to take. It would potentially decrease the amount of oral medications I take. My list has changed a lot due to increasing, on-going debilitating pain and neurological deterioration.

Mickey and I waited patiently to hear from either doctor over the span of a month. However, by the time my June appointment arrived, we hadn't heard from either one. While I understand that these brain and spine surgeons are extremely busy, I thought it was quite rude of the neurosurgeon to not respond at all to the physiatrist. So, the physiatrist will correspond with the neurosurgeon again. If he still doesn't respond, we will need to see another surgeon because this is the next step in my treatment and could provide an opportunity to increase my quality of life.

I'm tired of the continuous oral medication increases. I was one to wait as long as I could before taking pain medication. I would suffer until I just couldn't take the pain any longer. Of course, I hoped the pain would go away and sometimes it did so I didn't need to take anything. Now, I have no choice because the pain is always there, even with the pain medication.

My neurologist ordered new images of my thoracic spine, the imaging center did an MRI of the brain and full spine. They only reported on the thoracic spine though. There were changes with the length of the syrinx and I now have two new hemangiomas/tumors at T9 and T11. The tumors are what cause the spasming pain in my spine, ARGH!!!!!!!

I continue to see the orthosurgeon every 6 months (after the first 1 1/2 years). Basically, these doctors monitor my progress and make any recommendations, or changes, in my treatment plan that would be necessary.

I often awake in the morning with a swollen right eye that drains clear fluid until the swelling goes down. The orthosurgeon suggested I see an ophthalmologist first thing in morning. He told Mickey not to wake me until it is time to go to the appointment so the doc gets a chance to see exactly what's happening. I am within a block or two of all my doctors which makes it very convenient on appointment days. I'm still searching for one that is covered under our insurance plan.

I have never hated anything, or anyone, in my life, until now. I HATE the effects of syringomyelia with a passion. It will be 3 years, on August 28th, since my nervous system went haywire. My body has gone through so much trauma and neurological abuse that it's really unimaginable. By the Grace of GOD, I'm hanging in there and able to force myself to participate in some family activities and functions. I always enjoy myself!!! Then there are times when I feel like I can do something, probably because it seems so natural. However, it often turns out to be a desire but not a reality. The chronic high-level pain, with a number of neurological symptoms, prevents me from doing a lot (just about everything) and more often than not, the bed is a constant companion.

It is extremely difficult to live this way and I often find myself thinking of what I can do to end the constant agony. Most people with SM are told they look normal. Once you realize there's no choice but to carry on, you do what it takes. You're not dying but you often wish you were because of overwhelming pain and neurological deficits. There's nothing broken, however, your nervous system wreaks the worst internal havoc on your body. It's hard to explain all the strange/bizarre/most times painful, sensations that the body experiences throughout each day. It's pure emotional and physical torture, knowing that you have no choice but to deal with the pain and other symptoms. By the Grace of GOD, I awake each morning (smiling through teary eyes, despite the highest level pain), deal with whatever symptoms arise all day long, enjoy time with my family when I can, then go to sleep knowing I have to do it all again the next day. There's no way out of this heart/gut wrenching nightmare.

Until next time, everyone struggling or suffering in anyway, I wish you the best in your life. I pray we are all able to manage each and every day.

I hope everyone has had an enjoyable day!! Summertime/Funtime!!!!!



Thank you for that brought tears to my eyes.I find myself very depressed..I think to myself this how it's going to for the rest of my life? Seriously? I think my God, please keep me strong, b/c I have those days where I am so weak and I am in pain and I just don't feel like getting up. I look foward to night time, b/c I know that I'll go to bed and I don't feel the pain when sleeping so it's like, I can't wait until night. Morning comes and I try and tell myself this may be a good day, hope for less pain, look at my son and just keep going, and the pain starts. But you gotta keep going...I do wonder sometimes just like you mentioned, just because maybe I am not in a wheelchair or people/some relatives can't physically see what's going on or see my Syringomyelia or pain...I really think sometimes that it makes them less aware or less understanding....But I feel your pain and others in our are not alone... But thank you again for your Blog...Hang in there!!!!

Anonymous said...

Sending lots of love and hugs.

Elena said...

I can't even pronounce the name. I was diagnosed yesterday but I have been suffering from back, neck and left arm pain for 5 weeks now that has been progressively getting worse. I don't see how you do this. If it is something that comes and goes like every few months i think I can handle that but is this what everyday is going to be like for the rest of my life? I can't sleep at night, can't ever get comfortable. Are there special ways to lay so it doesn't hurt. I constantly wake up stiff and in so much pain. Also are there special exercises or stretches I should be doing everyday? I am scared I will do something that will make it worse not that I can imagine it getting worse. I don't want to do anything that will cause this to progress faster than it already is. So when it says avoid running, jumping, roller coasters, coughing, staining is this forever or just right now?