Brainpower

Headache headache go away and don't come back another day!

Headaches have pretty much consumed my life over the last 2 weeks. I first began noticing my headaches in August but it was nothing more than an annoying dull pain that would go away with some Tylenol. I didn't think much of it. Unfortunately those headaches were the beginning of a headache that would not go away. A headache that landed me in the ER (about a week and a half ago) and a headache that has led to 2 MRI scans in the last week (the 2nd MRI is forthcoming).

Both Dr. Shiple and my primary are concerned about Chiari Malformation. Chiari (key-AR-ee) Malformation is a disorder in which brain tissue protrudes (herniates) into your spinal canal. When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid (CSF) that protects your brain and spinal cord. This pressure can cause neurological symptoms, which is unfortunately the case with me (although a diagnosis of Chiari has not been made).

In the first MRI we learned that I have a hypoplastic (underdeveloped) artery in the A1 segment of my brain. I am still not sure how significant this is, and if it is related to my headaches or not. It is a "birth defect" so I don't believe the artery is the cause of my headaches. However, I can't rule that out just yet. I was borderline for a herniation with Chiari in the supine (lying down) MRI and was told that it should have been upright. I am scheduled to have an upright MRI to see if the herniation is more pronounced next week (but I am hoping to switch that to tomorrow...fingers crossed).

I have an appointment with a neurologist who has a specialty in Chiari at the Children's Hospital of Boston in 3 weeks. I will bring both of my scans and hopefully we will leave with some answers as to why I am experiencing these headaches and neurological symptoms.

My symptoms:
-Headache- pain in the back of my head, feels like a balloon is expanding in my brain and is going to push my eyes out
-Neck pain
-Dizziness- especially noticeable when changing positions from lying down to sitting or standing up
-Tingling/numbness- feeling on the left side of my head that comes occasionally and travels down the back of my ear (short lived); also have numbness or weakness in my legs and arms
-Ringing in my ears and the pressure feeling of needing to pop them (similar to the feeling on an airplane)
-Focus/concentration problems
-Sensitivity to light- light makes my headache worse; I wear sunglasses all day
-Eye pain/soreness
*and more


*I also read that difficult swallowing is associated with Chiari, something I have been struggling with since my PAO surgery in March.


*These headaches are very similar to my epidural headaches I experienced last year as a complication from the epidural in my first PAO surgery.

Might I add, the Bruins are definitely not helping with my headaches! Maybe I'd be "cured" if they actually started playing like Stanley Cup Champions! Come on BRUINS you're killin' me!

Other updates-
My right shoulder still hurts but thankfully it doesn't just hang by my side when it is out of the sling. My right knee and ankle have been really bothering me lately and my kneecap almost popped out when I was walking to get my knee brace--go figure! I am so ready to have them fixed. I need to put my legs behind me so I can focus on walking and getting stronger (without interruptions).

I have increased from 1800mg of Neurontin to 2400mg! I have not noticed a difference just yet in the CRPS pain, but hopefully within the next week it will start to improve. I don't know that I can tolerate anything above 2400mg a day.

My back and neck pain have been horrible lately and I cannot make it through the day without a thermacare heat wrap. It's painful to breathe sometimes because of my back. There really is nothing I can do, except wait for my legs to be reconstructed so we can work on gait training and walking!

I need the fall semester to be over! I am exhausted and in too much pain to focus...please end now!

Oh, and apparently it's supposed to snow on Saturday! Hello mother nature....it's still October, chill!

Read More

My EDS Video

I have edited my EDS video! Here is the new version...

I created this video as an awareness and educational tool for Ehlers Danlos Syndrome! Please feel free to share it with others.

It can also be found on the left hand side of my blog under Useful Links (titled: EDS Video)

Read More

Stronger

I came across this song and thought I'd share! It's uplifting and has helped me stay grounded over the last couple of days!

Read More

Leaf Your Troubles Behind

It's Fall...the colors are changing and the leaves are falling...

This past week should have been easier considering my professors have been canceling classes left and right, but it wasn't. I am in so much pain, my CRPS nerve pain is coming back in my left leg, I have headaches everyday (seeing my PCP next week), and my left knee has been making it even more challenging to learn how to walk. Oh, and the Bruins need to wake up soon and win some games because they haven't been helping with my overall mood lately.

My SI joint in my back has been out of place for nearly 2 months now but with the tears in my hip Cam hasn't been able to reduce it. We tried today but it was too painful and now I am paying for it. This is throwing off my alignment, making it difficult to walk over the baby cones at PT/walk in general, making it painful to sit, sleep, and basically function. I haven't been cleared by my hip surgeon to see my chiropractor but soon I may just give in and go anyway! I can't make it through the day without a thermacare wrap and biofreeze.

Unfortunately my right shoulder has not improved. I still have horrible spasms and shooting pains down my arm. It does stay in place if I take the sling off--meaning it does't just hang by my side--but if I try to pick something up or open something with my right arm, it's useless. I still have the "dead arm" feeling for the most part--although it's not a constant feeling (thank God). I don't feel like it's sitting in place correctly because almost every time I switch positions with whatever I am doing, (sitting, lying down, "walking") I have to adjust it. Annoying.

I need to talk to Dr. Shiple about whether or not I should increase my Neurontin for CRPS. The hypersensitivity is back and getting worse. I am not too concerned yet as I usually respond to an increase in dosage, but I need to make adjustments before it gets out of control again.

I will be seeing my PCP next week to discuss the headaches that I have had everyday for the past 3.5ish weeks. I have no ideas as to what the cause is at this point.

My left knee has been horrible lately. I don't know if it's the change in weather or increase in amount of walking and weight-bearing (or both), but it's angry with me---and well, I am angry with it. We aren't on agreeing terms and I am pretty sure the knee has the upper hand in this battle. I wasn't able to complete all my exercises at PT and I am getting very frustrated with my inability to consistently make forward progress.

I have been overly emotional lately and this is likely due to the fact that I have been following USA Gymnastics at World's. Words cannot even begin to describe how much I miss gymnastics and what I would give to be able to compete and train again. I wish more than anything that I didn't have to live in this body. It's hard to look back on my gymnastics career without being upset by my current physical state. How do you go from six-pack abs and crazy muscles to joint dislocations? But of course this emotional breakdown leads back to my motto, "You can't always decide what happens to you, but you can decide how you react." Just gotta keep chuggin' along!

My theme song!

We have finally made progress with scheduling my December surgeries. I have an appointment with the disabilities director at my school on Wednesday to discuss finals week and the spring semester!

On a much happier note, I am ecstatic to say that my favorite gymnast, Jordyn Wieber, won the All-Around title at the World Championships in Tokyo! She is now officially the BEST gymnast in the world (not that there was any doubt that she was the best before the competition). Also to add to that amazing news, the USA Women's Gymnastics Team WON the Team competition as well. The women are 2/2 in the gold medal count at Worlds! Congratulations ladies, you definitely deserve it! Watch out London 2012 here we (USA) come!

We are just starting the poetry segment of my English class so I thought I'd share one of my favorite poems by Dr. Seuss,

Troubles

I have heard there are troubles of more than one kind

Some come from ahead, some come from behind

But I've bought a big bat

I'm all ready you see

Now my troubles are going to have troubles with me!

-Dr. Seuss

Oh...and Fall is my favorite season so I have changed my design to reflect the Fall season...(I couldn't find a Boston Bruins template)

Read More

Dead End

Hockey season has officially started and although the Bruins lost their first game, the ceremony of raising the banner was very exciting and emotional! I am hoping to go to a game at The Garden this fall/winter.

Still no word on surgery dates. I am getting very frustrated that we have made no progress in scheduling. I need to tell my professors NOW if I will need to take any finals early. Hopefully we have the dates soon.

Tuesday was my appointment with Dr. Shiple for the dextrose epidural. The hope was that it would act as a local anesthetic and numb my leg/hip and alleviate some pain. I was really hoping that it would work because I wanted to try PRP to hopefully repair the tears in my hip. Unfortunately the dextrose epidural did absolutely nothing. It was a painful experience that I will never try again. It left me with horrible back pain (on top the back pain I already experience and live with everyday). Because it did not numb my leg, I will not be going ahead with PRP. Without a local anesthetic PRP would be extremely painful. We all agreed that that was our last option. There is no plan B for the tears in my hip. We have hit a dead end. I will continue to work with Cam to work on learning how to walk and retraining the proper muscles to fire in the correct order. We are also working on muscle strength to help stabilize my pelvis. Ultimately, my stability training will not be complete until my ankle and knee are reconstructed as they play an important part in mobility. Although I am upset that the dextrose epidural did not work, and I have no other options, I have learned not to expect anything. If you don't expect anything you won't be as disappointed when the results don't end in your favor.

My shoulder is still popping out and causing problems. It took about 5 days until I noticed improvements with my "dead arm" feeling, however it is not gone. Certain movements cause the sensation to return and I still have limited use of the arm. I experience sharp muscle spasm pains in my neck, scapula and down my arm. My elbow is now significantly more hypermobile than it was before. Cam said this is normal with shoulder dislocations and laxity. Dr. Shiple mentioned that I may have an entrapped nerve. The only fix would be surgery-the ONE surgery I will NEVER have. Nerve release procedures pose more risk of nerve damage and complications. It is possible that when I have my shoulder reconstructed next summer, the stable position of the joint will result in the nerve entrapment correcting itself. I have no time to worry about this right now. My surgeon told me that for the time being I should use my pillow sling (4-6 weeks). However, seeing as I am a full-time student with a cane/crutch and heavy backpack, I cannot use a pillow-sling while at school. Instead, I wear a standard sling and wear the pillow-sling everywhere else. So I compromised.

My hip pain is not improving. I still experience sharp groin pains with every step and through flexion of the hip. Cam is working with me to use the leg correctly when walking although it is difficult. I am missing two key components to walking--my knee and ankle! Unfortunately there is not much I can do for my hips, so I will try to focus on my breathing exercises (aimed at redirecting control to my core), walking with Cam, and the proper mobility of the leg with walking.

I had an ultrasound on Wednesday for my kidney. Thankfully everything is normal. The second round of antibiotics worked after about 2 days. I still have some residual back pain in the general area of the kidneys but I am attributing that to the fact that my spine is out of alignment.

I have not reported on my CRPS symptoms in awhile. I am still taking 1800mg a day of Neurontin. I have been experiencing some lightning bolt pains in my leg lately but they happen randomly. I have not noticed any discoloration in my leg but my knee is becoming more hypersensitive to touch again. If the hypersensitivity increases I will talk to Dr. Shiple about whether or not I need to increase my Neurontin. CRPS tends to have a mind of it's own and seeing as I have only noticed these symptoms for the last week, there is no need to worry just yet. Fingers crossed it goes back into hiding.

Read More