Hello all, newly diagnosed

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Hello all, newly diagnosed

Postby Metalmommy » Wed Sep 05, 2012 1:20 pm

Never been good with this introduction stuff, but here it goes. I am 27 from CT and the mother of a 21 month old. In May my fiance and I were rear ended at a stop light. When we got hit I was bending down to get my phone out of my purse (I have really awesome timing like that). At the end of May they did an MRI and found a 2mm syrinx from T1-T5 and bulging discs from T6-T9 my cervical MRI was clear and they have not yet done a lumbar one. I do not know how high they went up on my cervical MRI but so far I do not have a Chari malformation. The MRI had said my syrinx was stable, but in the past few weeks (days even) I have had an increase in symptoms. I have chronic pain that radiates up my spine, into my shoulders and ribs, and down my left arm. At first I had some hand numbness and some arm numbness and pain. Currently my left upper arm hurts chronically. The past two days I have developed pins and needles going up my spine, out into my ribs, down my left arm and as weird as it sounds the heels of my feet. My hands are stiff feeling all the time as well. I am waiting on a neurosurgeon visit and pain management. I have no relief from that stabbing pain in my back, standing or sitting hurts sometimes laying down helps. I work full time, and it's been hard physically and mentally (I work with the chronically mentally ill). I had no symptoms before this car accident, and I am guessing this is trauma induced. What scares me is the progression of symptoms I have had. I know that this progresses differently in everyone, but from what I read it should be slow and it doesn't seem to be with me. Maybe I am over reacting, I don't know but I am extremely depressed. The thought of having to have MRI's done every 6 months, of being in this much pain for the rest of my life if I'm lucky and it doesn't get worse is overwhelming. I have dealt with chronic pain for 6 years due to a knee injury pretty well, never had to go on pain meds for it once in a while I go to PT to help it, but that coupled with this crippling back pain is killing me. I don't know what to do except to sit here and wait on these doctors to take their sweet time to get back to me. I feel pretty alone, a lot of people don't understand. My fiance is supportive which is helpful but I feel pretty alone. I don't think I would be freaking out this bad if I wasn't having all these new symptoms so quick, and it seems like no one listens (doctors). My orthopedic told me to take tylenol, no I did not hit him but it was hard to suppress that urge. Anyway that's most of my journey with SM thus far. I will say it hasn't been pleasant, but I am guessing this is going to be the case for the rest of it as well. Good to know there is support out there though, because no one even knows what this is when I tell them. So hello everyone, and thanks for reading my ramblings.
Metalmommy
 
Posts: 14
Joined: Wed Sep 05, 2012 1:02 pm

Re: Hello all, newly diagnosed

Postby gunflint » Wed Sep 05, 2012 4:37 pm

Metalmommy,
First of all welcome to our little club that no one wants to be in. There is a lot of great people with great advise here so you came to the right place. I just have a couple of quick suggestions as I'm short on time today. First and foremost find a neurosurgeon that is experienced in CM/SM. You will find out soon enough that you will know more about syringomyelia than most medical professionals. Unless your PCP and NS are experienced you will be in for a rough ride. Also, download the patients handbook. There is a lot of useful info there. As you read and study about CM/SM your fear and depression will subside. Anyway there's great people here that have seen it all and really want to help. Hang in there.
gunflint
 
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Location: Duluth Mn

Re: Hello all, newly diagnosed

Postby alpowers01 » Wed Sep 05, 2012 6:30 pm

The widely disseminated nature of your neurological issues is not at all uncommon in cases of CM/SM, including those involving your feet. It's crucial that you find a neurosurgeon who is well-acquainted with CM/SM. I cannot emphasize this too much. All too often, procedures are carried out unnecessarily or incompetently and many of these result in subsequent repair surgeries. One neurosurgeon described a posterior cervical decompression/duraplasty to me as "bread and butter surgery." This is not what you want to hear. This is serious business. And, your frustration over the Tylenol recommendation is most understandable! Defintely, download the Patient's Handbook and educate yourself. This is crucial to your ability to advocate for your very real needs.

Best wishes. My thoughts are with you.
alpowers01
 
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Joined: Mon Aug 13, 2012 1:51 pm

Re: Hello all, newly diagnosed

Postby Metalmommy » Wed Sep 05, 2012 9:56 pm

Thanks guys, I will download it. I met a girl tonight who has a chari malformation, she went to the neurosurgeon that is in the same group as the one I am going to. I was referred to her neurosurgeon first but he does not deal with car accidents. She had successful decompression surgery and syrinx drainage so that made me feel a little better. I feel crazy lately, all these weird sensations and pain and I can't even describe it accurately. It has thrown a huge monkey wrench into my life, and at a really bad time. Being the pessimist I am I am feeling all these secondary losses before I know they are even gone. I wonder if I can ave another child, if I am going to be on pain meds for the rest of my life, am I ever going to feel halfway normal again? The progression is scary for me, I feel it means eminent surgery and my track record with surgeries is not good. I don't know, everything just seems bleak.
Metalmommy
 
Posts: 14
Joined: Wed Sep 05, 2012 1:02 pm

Re: Hello all, newly diagnosed

Postby Andrea » Thu Sep 06, 2012 6:34 am

Welcome! I was diagnosed around a similar time (25) as you with the same aged kid as well. I won't lie but it was an extremely challenging time for us as I had the decompression surgery soon after diagnosis (have both cm/sm). Definitely get into someone as soon as you can. I've had to be my biggest advocate and really be a pita but it's my life that's being messed with so I feel it's important. I'm typing this one handed trying to put my second boy back to sleep (he's 14 months so a 4 1/2 year age gap b/t the two kids ) so pregnancy/delivery after diagnosis is possible. Of course we are all different. Wishing you well and sending good thoughts your way.
Andrea
 
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Joined: Mon Feb 27, 2012 10:40 am

Re: Hello all, newly diagnosed

Postby alpowers01 » Thu Sep 06, 2012 1:49 pm

For what it's worth... At age 15, I used to develop severe occipital headaches whenever I laughed. This symptom disappeared during my 20's. At 35, a myelogram and exploratory surgery showed a C3-T4 syrinx. At 50, an MRI showed my hindbrain herniation (CM1). Symptoms have evolved substantially over time... but I'm now 73 and still fully mobile. Yes, there is discomfort and I'm balance-challenged, shall we say. But, given that I was told I'd be a quadriplegic by the age of 50, I've done well. Surgery is likely on my agenda, but I sure can't complain. I'm telling you all this to provide encouragement and hope. Listen to your body, find a good neurosurgeon, and proceed conservatively. Best wishes. - Al
alpowers01
 
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Re: Hello all, newly diagnosed

Postby Metalmommy » Thu Sep 06, 2012 3:39 pm

Thanks everyone. I'm happy I found this site, because it really does seem like there are very few people with this. I am glad for the encouragement, and really hope the progression slows. I feel confident in my neurosurgeon, the girl I met recommended his group. Also good to know another child isn't out of the realm of possibility. I am just struggling to come to terms with this, I have mental health issues to begin with and this isn't easy to deal with.
Metalmommy
 
Posts: 14
Joined: Wed Sep 05, 2012 1:02 pm


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