Conflicted

I am very conflicted at the moment. I don't know whether or not to go ahead with the surgery. As I mentioned in my previous post, I have had many people (patients who have had the surgeries) tell me that it was definitely worth it. However, it's not that simple for me. I do not want to lose a significant amount of rotation in my neck and that part scares me because no one can tell me exactly how much I will lose. I have gone over the pros and cons of each decision (surgery or no surgery) 100 times and despite the fact that I could possibly be headache free, I can't get beyond the loss of ROM. (Below is my pros and cons list)

Surgery- Pros:
1. No more headaches and reduction/relief of other neurological symptoms
2. Prevent serious lifelong complications--injury to the brainstem and/or spinal cord from C1 and C2 instability damage
3. There really aren't any lifelong restrictions after surgery

Surgery- Cons:
1. Long recovery and hospital stay
2. Loss of ROM in my neck
3. Possibility that surgery doesn't relieve my symptoms
4. Risks involved with surgery

*Obviously some of the pros outweigh the cons

No Surgery- Pros:
1. No incision in the back of my head/neck
2. No rods in my neck
3. No loss of rotation
4. No long and painful recovery
5. Normal summer for the first time in 3 years

No Surgery- Cons:
1. Live with 10/10 headaches, neck pain, shoulder blade pain, dizziness, swallowing difficulties, and all of my other neuro symptoms
2. Lifelong complications (as mentioned above)

Surgery is scheduled. Now I just have to make a decision. I reached out to my two surgeons in Boston (although they are not cervical spine specialists or neurosurgeons). Their opinion matters to me and I have so much respect and trust in them. I didn't feel right not having talked to them about these surgeries. They both reached out to another specialist at Children's to see if they can help me understand the loss of ROM I will experience and my hip surgeon is looking for a video that shows the result of a C1 and C2 fusion. (That is why I continue to go to Children's...because that is above and beyond care that you don't find everywhere)

I have to make a decision relatively soon, but I don't have a lot of time to really think about it because of my classes. Maybe that's a good thing. Maybe the answer will just come to me. I usually just know. I have never second guessed a surgery. Hopefully the feelings of confidence and assurance will come back.

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Chiari and Cervical Instability

On Friday I saw my neurosurgeon (NS) for a follow-up consult after having a rotational CT scan, Spectra Cell analysis (blood work), and other testing.

We learned that instead of a 3mm herniation, which was indicated on my MRI report, I have a 5mm herniation. This means that I have Chiari 1 Malformation not Chiari 0. The CT scan also indicated that my C1 and C2 vertebrae in my neck are very unstable. There are risks that come with instability that high in the neck and therefore I am unfortunately stuck wearing a cervical collar. It is VERY fashionable (I hope you sense my sarcasm).

My symptoms are likely a result of both the herniation of the tonsils/Chiari and the cervical instability. The good news is it is something that can be "fixed." There is no cure, but there are effective treatment options that can help with my symptoms. The bad news is it means surgery. Yes, another surgery...and this time it's a bit more complicated. My NS wants to fuse my C1 and C2 vertebrae and perform a decompression surgery. The decompression involves removing a piece of my skull to allow more space/room for the brain. Obviously the fusion is meant to stabilize the cervical spine. There is another procedure that he wants to include but I am hoping that we can avoid that part of the surgery altogether. At this time I have surgery scheduled, but I am still deciding what to do. I have had many people tell me that the surgeries are definitely worth it and their symtpoms have been relieved. I honestly have not heard a bad story for these procedures which is definitely comforting.

I have some more questions that I want answered before I make my final decision.

At the moment I am taking 2 summer classes, Biology- Genetics and an online Math class. It is very difficult because it involves throwing a full semester into 6 weeks. I am only in my first week and I already have a ton of homework and readings. However, in order to graduate in 3 semesters I need to take 2 summer classes both this summer and next. It will feel so great to have these classes out of the way and it will lessen the course load in my remaining full semesters.

I will have 1-2 weeks in between the end of my summer classes and the surgery (if I decide to go ahead with it).

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EDS Awareness Month

I know I am a little late in posting this but May is Ehlers Danlos Syndrome awareness month. Instead of recreating the post from last year, I simply copied it into a new post with some minor adjustments and additions. 

Property of EDS Tags & Snags on Facebook

Help increase awareness and education on this virtually unknown disorder. Here is the link to the EDNF.org Awareness Month of Activities List. 

For those of you who are new to my blog or have never heard of Ehlers Danlos Syndrome here is a brief explanation:

EDS is a rare connective tissue disorder affecting about 1 in 20,000. EDS affects connective tissue, which are tissues that support the skin, bones, blood vessels, and other organs. There are 6 subtypes that vary in severity from mild to life threatening. An unusually large range of joint movement (hypermobility) occurs with most forms, particularly the hypermobility type. The loose joints are unstable and prone to dislocations, chronic pain, and early onset arthritis. People with vascular type EDS are at risk of serious complications. Serious complications include tearing (rupture) of major blood vessels and organs. These complications can be fatal. About 1 in 4 people with vascular type EDS develop a serious health problem by age 20, and more than 80 percent develop a life threatening complication by age 40. The median age of death is 48 years. 

There are a number of secondary conditions connected to EDS that can be very disabling as well- Some of the more common disorders are POTS, mitral valve prolapse, orthostatic hypotension, IBS, asthma, dysautonomia, and chiari malformation.

Here are 2 videos I made about EDS to help educate people and raise awareness. The first video is shorter and based more on medical information, while the 2nd video is a little bit longer and provides quotes from people living with EDS and how it affects their life. 

(The link to the mobile version of the above video can be found in the information section on YouTube, directly below the video)

(At this time there is no version of this video compatible for mobile devices including iPhones, iPads, and other cellular devices. I will work to resolve this in the near future but it is a lengthy process)

So You Think You Might Have EDS- very informative article about the symptoms and signs of EDS

*This article should not replace the advice of a medical professional. If you think you might have EDS please consider seeing a genetic specialist. 

How you can help:
1.  Post the following text (or your own version) to your facebook or twitter page:
"May is Ehlers Danlos Syndrome Awareness month. EDS is a rare connective tissue disorder marked by hypermobile and unstable joints, fragile blood vessels and organs, and even heart complications. There is no cure or specialized treatment. Most doctors don't know what EDS is. Help spread awareness and education. Post this if you have or know someone living with EDS. With awareness and research there can be a cure."

2. Download and/or post the following EDS posters to your facebook or twitter page. Ask your doctor, physical therapist and/or hospital if you can post them in their lobbies or waiting rooms. Check with other local businesses. Ask permission before posting. *If you are interested in larger poster size versions for distribution please contact EDS Network Cares (click here)

(Property of EDSNC)

(Property of EDSNC)

(Property of EDSNC)

(Property of EDSNC)

3. Fundraising! Donate to EDSNC (Ehlers Danlos Syndrome Network C.A.R.E.S). There are several research projects currently underway--any money donated to the cause is extremely helpful (click here for an EDSNC template for donations). If you are interested in purchasing awareness bracelets through EDSNC click here! Donations are also accepted through EDSNF (Ehlers Danlos Syndrome National Foundation)! 

4. Be creative! 

-Create an "Ask me about EDS" shirt or badge! 

-Hold a bake sale with the proceeds benefiting EDS research

-Contact local radio stations

...There are many different ways to spread awareness. 

**Not only do most people not know what EDS is, but most physicians have never heard of it either. Here is a .pdf file outlining EDS (Facts of EDS). These templates are great to help educate your doctors about EDS- provided by EDNF (.pdf files)

-Pain Management guide

-Ophthalmology

-Vascular EDS Guide

-EDS in Practice- Stages of Life

-Dentistry and EDS

-Guide for EDS in Children (for parents)

-Emergency booklet for Surgery (CD is no longer available)

EDS downloadable wallet card

EDS poster for coaches and trainers--(click here)

For pages I may have missed, here is a comprehensive page including other specialty areas and EDS documents--(click here)

*Many people who are beginning their journey with EDS don't know where to begin. When people ask me what to do first, I usually say they should see a genetic specialist to confirm their suspicions. If they have already been diagnosed, then the next step varies and depends on the individual case. There are many specialists involved in an EDS patient's case. These include genetic specialists, rheumatologists, surgeons, dentists, ophthalmologists, physical therapists, psychiatrists, pain management specialists, and many many more! Here is a Physician's Directory from EDNF.org and may be helpful if you don't know who to see. 

There are many great Facebook support groups available and can be found by simply searching Ehlers Danlos Syndrome on Facebook. If interested in purchasing EDS zebra ribbon car magnets for awareness, I believe more were recently ordered and can be purchased via this Facebook group--EDS Awareness Magnets!!

I also created a few EDS awareness shirts on Zazzle a few months ago-- 

Version 1: click here

Version 2: click here

Other EDS products can be found on cafepress.com and zazzle.com--simply search Ehlers Danlos Syndrome

Other useful websites can be found in the EDS tab/page at the top of my blog!

With awareness and research there can be a cure! Help make a difference!

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Florida

So it's been awhile. As always I don't have a lot to update on.

I finished the Spring semester. I still have no idea how I managed to start in January, 4 weeks post-op from reconstructive knee and ankle surgery, and finish 3 months later. I started on crutches, in a cast, and with a post-op knee brace, and ended on a cane and with a knee and ankle brace. I am very proud of this accomplishment and it feels great to know that I am now 2 semesters closer to graduation, which is expected to be in the Fall 2013. I am taking 2 classes this summer in order to stay on schedule.

Speaking of graduations, my mom and I just returned home from sunny Florida and Nicole's college graduation weekend. I had a fantastic time despite not being able to do everything (I could not walk on the beach). The trip itself was exhausting but totally worth it. I have not been able to truly enjoy a vacation in almost 3 years. That is definitely not the case anymore. Family (immediate and extended) and friends were all in Florida together to celebrate this milestone in her life. We stayed at the most perfect hotel that was on the beach and just about every window overlooked the water. We all went to dinner together and spent the days at the pool and beach (I did not go to the beach). At the graduation we were definitely the loudest group of people.

Nicole and I have been friends since the day she was born...I was born first :). My mom and her mom, Ellen, lived together in college and have been best friends since. Nicole and I grew up together. She is about as close as you can possibly get to being a sister, without actually being related. I am so proud of her and wish her nothing but happiness and success in the future. My mom and Ellen are a perfect example of how it doesn't have to end after college. Sure the partying, roommates, and classes may end (to some degree), but the friendships can always live on and continue to grow! I am fortunate that my mom and Ellen have remained best friends because had they not I would not have known Nicole and Michelle (her real sister).

Congratulations Nicole! I love you.

Now for health related information...

My hips have been killing me lately. Cam says it is because I walk by only using my hips, which is incorrect, and therefore it should get better when I walk correctly (we are working on this). Both knees still hurt. Going up stairs or standing up from a sitting position is still very painful for my left knee, which was operated on last year. My right knee, the newly reconstructed knee, still gets lightning bolt pains through the incision at random times. Quad strength is progressing and I am farther along in this recovery than last time, but the strength is no where near functional and I am still in a brace. My ankle still doesn't flex very much but Cam did clear me to start weaning from the brace. I still have to wear it when going out for longer periods of time or where there would be a lot of people, but I no longer have to wear it in the house. This should hopefully get some more natural flexion back.

Originally we had planned on having my right shoulder reconstructed this July, however, after talking to Cam we both agree that I really need to give my body a chance to recover. My right shoulder is definitely in very bad shape and I usually wake up with it dislocated, but this is just something that I need to hold off on right now. I will have it reconstructed at some point in the future (likely NEXT summer), it just will not be happening this year. My surgeon wants me to wear a shoulder brace/sleeve. Hopefully that provides a little more stability than I already have.

My headaches haven't changed at all. I go back to the specialist this week for a follow-up to review the testing I had done.

I start one of my classes on Monday. It is an online class so it will involve a lot of work, but it'll feel so nice when I am completely done for the summer at the end of June!

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