Why Being Sick with Syringomyelia Sucks

I have caught some sort of sinus thing this weekend and I have become a little nervous about the affects it might have on my syringomyelia. The research and doctors have continued to point toward the affect excessive coughing might have on my syrinx (cyst). My cyst is already pretty long but it has not grown substantially according to my most recent MRI. I pray that this weekend’s illness will not cause any increase in my symptoms. I’ve really been trying to hold my cough in so that I don’t increase the size of my syrinx.

So far the headaches have increased a bit but I believe maybe that is because of the sinus pressure. I haven’t had much numbness lately and my twitching has been a little less prominent. I am grateful for those things!

I wanted to show you what would occur if I were to have the surgery with a shunt placement. I have been searching for this for some time now and I have not been able to get a better image than this, but I’ll keep looking so that you can see what might happen to me in the future. This one is representative of what it would look like if my syrinx would grow a bit longer. Since my syrinx ends at the T5 it has a little bit to go before I can be a good candidate for this surgery. Unfortunately, if it grows, it means that I will be likely to suffer from more symptoms and damage in my nerves and spinal cord.

http://www.thebarrow.org/stellent/groups/public/@xinternet_con_bni/documents/webcontent/st031042.jpg  

I hope this helped to give you an idea of some of my fears from this past week and my fears for the future.

Out Comes the Sun!

I received a phone call the day after my MRI from my doctor at 9:35am. I was terrified when I saw the doctor’s phone number appear on my cell’s caller id. I immediately left my meeting and took the call bracing myself for the terrible news that surely awaited me. When the doctor spoke he asked me if anyone had called me about my MRI yet. I immediately thought, “When did they have time? I had my MRI yesterday after normal business hours…” but I just said no. At that point I was absolutely trembling and then he said that my syrinx (cyst) has not grown and appeared unchanged according to the radiologist. WHEW!

The only thing that was left to ask was, why in the world are my symptoms increasing if nothing has changed? I have a doctor’s appointment soon and I will discuss the possibilities with him. The good thing is that I completely trust my doctor with anything he decides we should do to try to minimize my symptoms. He’s really great and I couldn’t ask for a better pain specialist. I will see my neurosurgeon in a few months for follow-up, but since there is no change in my syrinx I am likely only going to have to discuss my increase in symptoms.

Today has been a rough day for my back. I’m currently laying down in my bed typing this flat on my back trying to minimize the pain in my shoulder blade area. It can be quite excruciating at times and I am just glad that this doesn’t happen every day. Tonight it is affecting my ability to sleep. It’s nearly 10pm and I have tried for a while to fall asleep. My bedtime normally is between 8:30 and 9pm because I have to be up so early for work, lately my bedtime has gotten later due to the pain. Keep up the prayers and positive thoughts regarding my disorder. Some days I can completely tell that the prayers pay off, others I feel like my back my be broken but no matter what, I always look forward to the sunshine of life during the days where pain is minimal. Here’s to the sunshine!

My Second MRI

I had my MRI today. This is my second one since being diagnosed in March. I went to the same radiological center so that the same radiologist can read my MRI and give me the most accurate results.

When I went into the office I ended up being in the same dressing room and almost had the same locker to put my clothes in…number five which has now become my most unlucky number. Anyhow, I ended up having my MRI on my cervical, thoracic and lumbar sections. I thought I would be there for three hours like I was last time; however, I was pleasantly surprised when the tech told me that I would not need to have a contrast MRI this time. I was so pleased! That cut out an entire hour of MRI time!

Despite the pleasantries of not having an additional hour of MRI time, I did have some displeasure, too. I did have to lay flat on my back with the stabilizer on my neck and head for an entire hour without a break. I was in agony by the time the test was over! I did have several instances where I twitched and I was afraid I was going to have to sit there for hours to redo imaging, but I only had to redo one of the series. I was glad it only took an hour because I was on the verge of screaming in pain by the end.  After all that, I don’t know what the results are but I will keep you posted as soon as I find out!

My symptoms for the day are quite a bit milder than yesterday. I do have the always present headache, weakness, twitching , foot cramps, back and neck pain and fatigue in my muscles. I am feeling quite weak and dizzy right now and I’m not sure if it is the lack of sleep, the pain from the MRI or the overwhelming fear that my syrinx (cyst) has grown. I will be alright either way, but I am just fearful that surgery is coming and I am not ready to take that step, yet. I’m praying for a miracle that the Syringomyelia is gone in this report…but all signs are pointing to a growth in my syrinx. 

Every Possible Symptom - Yep, I Got 'Em!

I had a pretty terrible few weeks, I have to say. I hate to admit that because I’m trying to be so positive and strong through this entire process but these past few weeks have been a battle for me. Last week I was traveling for work and I was in a lot of pain and had most of my Syringomyelia symptoms. I ended up coming home early on Thursday due to my symptoms.

I began feeling “funny” which is the only way I can describe it to anyone. I felt very strange like every one of my nerve endings were highly sensitive but not painful, just sensitive. Have you ever had restless leg symptoms? That is basically like what my entire body felt like, except “light.” If any of you know me personally I am a six foot woman with a not so tiny build; light is not what I would describe me as being. Nevertheless, I felt strange so I drove home. While speaking to my family and friends at my mom’s business I had an episode of syncope. I’m still not sure what happened but I was quite weak. I am able to predict when these happen within about 5 minutes but once I start feeling “light” or sometimes “heavy” I will sit down and prepare myself. I’m quite lucky I can predict them! I ended up going home because I felt I needed to sleep but I called my doctor once I arrived. He was worried because I never, and I do mean never, call him because I am THAT hard headed. He made me go to the emergency room. There I had a series of tests (bloodwork, EKG, etc.). They didn’t find anything wrong with me but I will be having an MRI done tomorrow to ensure that the syrinx (cyst) has not grown. Yep, I finally caved.

The one thing I found when I went to the ER is that not every doctor is even aware of what syringomyelia is exactly. I had previously begun making business cards to hand to people who were interested in learning about my disorder. I felt like I could just hand them a card with my diagnosis, symptoms and my blog address for more information. Unfortunately I had not finished this card prior to the ER visit. I did, however, complete it once I got back home and was feeling better. I now have them with me in my purse so people who are interested can learn more about my disorder. I’ve shared it below. The logo and the card (except the border) were created and designed by me. 

(Front)

(Back)

I had every single symptom I've EVER had with syringomyelia in the last few weeks including: weakness, neck & back pain, numbness in the arms, hands and feet, twitches (entire body), headaches, migraines, syncope, foot cramps, and many other little idiosyncrasies. 

Thanks for all the prayers for those of you who were aware of my terrible weeks! I pray tomorrow will be a better day and I can share a positive story!

Coping with a Chronic Illness

I’ve been having some difficulty this week. My back has been really battling me and I have been twitching more. I have been working diligently to figure out what I can do to eliminate this pain, but it’s hard sometimes. I have been trying so hard to be positive about everything but it is quite difficult sometimes. I’m sure those of you who have been diagnosed with a chronic illness have a difficult time coping, too. I found some tips for coping and I have listed them below.

“Here are some other suggestions for coping with chronic illness:

• Stay connected. Establish and maintain quality relationships with friends and family. Many health organizations also sponsor support groups composed of other people experiencing similar challenges. These groups will not only aid your own well-being, but also provide rewarding opportunities to help others.
• Take care of yourself. Don't allow worries about your illness to get in the way of eating property, getting rest and exercise, and having fun.
• Maintain a daily routine of work, errands, household chores, and hobbies as much as possible. This will provide you with a feeling of stability amid the chaos and uncertainty of your illness.

The American Psychological Association Practice Directorate gratefully acknowledges the assistance of Rosalind Dorlen, PsyD, ABPP, and the Council on Psychological Health of the New Jersey Psychological Health Association in developing this fact sheet.”

The above was found at http://www.apa.org/helpcenter/chronic.aspx.

I am going to keep my chin up, my head held high and live with the knowledge that I will someday understand the reason for this disorder.

“Keep your face to the sunshine and you cannot see a shadow.” -Hellen Keller

Never Say Never (No it's not about Justin Beiber)

Well it has been an interesting few weeks. I apologize for my lack of blogging; however, I had a good string of days and I wanted to utilize them to the fullest. I couldn’t believe that I had more than one good day in a row, considering I had just written how that never happens. I guess that stands to reason, never say never.

Last week I had an incredible week. Everything seemed to be going strong and healthy for me. I did continue to twitch but it is not something that will bother me as much as the pain. Two days ago the pain came back and it was a little frustrating. Once I started having good days, I expected them. It was a blow to my senses when I woke up with my back pain again. I have been able to avoid taking my pain medications for several weeks. I am trying to learn to deal with the pain naturally at this point. I am laying flat more often, resting more and actually asking for help! Those of you who know me realize that is a HUGE feat for me because I am so independent. My mother came over yesterday to help me with my daughter’s hair. As you know it’s difficult for me to wash and style my own hair, but my daughter has this super curly hair that is difficult to comb. When I wash and style her hair, it takes me hours because her hair tangles so quickly and easily. God bless my mother for her patience and strength through this endeavor. She has been my rock and I love her so much.

At this time my symptoms are as follows: headache is still persistent but the migraines have subsided for the time being (knock on wood), I have mid-back pain (by the shoulder blades) that resonates up to my neck and down my spine, I have twitches that happen quite frequently (although they are becoming less “visible”), and I am run down and tired. I do celebrate the victories of not having migraines…that is incredible! I am still able to function as a normal person and I don’t let this get me down. I can work, interact with people, and have a “normal” life at this point. I am trying to live my life to the fullest and show people that even though I am afflicted with a rare neurological disorder, I can still be me.

Take the Good With the Bad

I have had my fair share of ups and downs in the last several days. I have also found a direct correlation to the pain and I wish it was a great one. Basically what I have found is that if I have a good day, it is always followed by at least one really bad one. I found this out this weekend by having a really good day on Sunday. Monday and Tuesday were really terrible for me physically. I had severe back pain on both days and then I had a migraine on Tuesday.

I wish I was able to just have more than one good day in a row, or really have a good day followed by a moderate day. It’s scary to think that every time I have a good day, a bad one will follow. I’ve become fearful of the good days and that’s not at all what I wanted to have in my life. I could dwell on the negative that this brings or I could look at the fact that I really must take advantage of the good days by doing the things that I won’t be able to do on the bad days.

It’s hard not to be positive when the negative is staring me in the face, so I thought I’d share a bit about what is staring me in the face daily besides my green eyes. There are a ton of things that I am no longer allowed to do and things I shouldn’t do. Below is a very small list of them and I thought that it would be an interesting thing for you all to see.

Avoid activities that may make symptoms worse If you've been diagnosed with syringomyelia, avoid any activity that involves heavy lifting, straining or putting excessive force on your spine. Examples of activities to avoid include:

·         Playing high-impact sports, such as football and Rugby

·         Riding roller coasters

·         Sky diving

·         Straining during a bowel movement

·         Excessive coughing (talk to your doctor about treatment if coughing persists)

I found the above and a lot more information at http://www.bing.com/health/article/mayo-126787/Syringomyelia?q=syringomyelia.

Although you will not find me on a roller coaster or jumping out of a plane, you will find me spending every day grateful to have the opportunity to live my life. It may be a life that is not quite as eventful as it would have been had I not been diagnosed with Syringomyelia, but it will be full none-the-less.