Tuesday, March 22, 2016

The Dean Center for Tickborne Illness at Spaulding Rehabilitation Hospital

This past week I had an amazing appointment with a world class Physiatrist at The Dean Center for Tick Borne Illness, a clinical study and research trial at Spaulding Rehabilitation, in Boston. After hearing about this place, both in newspaper write-ups and from a few patients and friends, I decided that I must go and see what this was all about. So here is an honest review of The Dean Center, and my experience there.

March is Brain Injury Awareness Month
Katy in the lobby of Spaulding Rehab before appointment

Spaulding Rehabilitation is truly world class, and ranked the #6 Rehabilitation Hospital by U.S. News and World Report. It is a Harvard Medical School Teaching Hospital, and is associated with Massachusetts General Hospital and Brigham and Women's Hospital. Spaulding has always been among the best rehab facilities for Traumatic Brain Injuries, Spinal Cord Injuries, Severe Burns, and more. Spaulding gained national attention in 2013, when their amazing team stepped into the front lines of the horrific Boston Marathon Bombing. They are still following and caring for the victims throughout their recovery.

In the summer of 2015, The Dean Center for Tick Borne Illness opened at the Spaulding Boston location. The Dean Center is focused on patient care and rehabilitation, recognizing that some LD patients have very serious and often debilitating symptoms that leave us in chronic pain, chronic fatigue, helpless and hopeless. They are looking past the politics often associated with Lyme and instead focusing on the patient, and how to help a LD patient regain their strength, coordination, endurance, and function, so that we may hopefully once again live a normal life.

Currently, The Dean Center has three Physiatrists trained to handle the complexities of a Lyme patient. There is also a wonderful case manager on staff, a clinical research coordinator, and a mental health clinician. The current wait is about 4 -6 months for an initial appointment. For anyone within a commuting area to Boston, they offer many things beneficial to a LD patient, including bi-weekly Stress-Relief Groups, and Patient Support Groups, guided by licensed therapists. You do not have to be a patient of The Dean Center to participate in these support groups! They are held on Tuesday evenings.

What to expect at The Dean Center:

Going into my appointment I had no idea what to expect, I'd never been evaluated by a Physiatrist. I knew my body wasn't in excellent functioning condition, and expected to hear that I needed to do some work.

I had planned ahead and coordinated with an amazing LD advocate, who attended my appointment with me as my "buddy". She took notes, and was my support system before, during and after the appointment. No one, no matter what kind of medical appointment, should ever go alone. It is imperative to have someone with you to help interpret information, and ask questions for you in case you forget. Thank God she was there with me for my appointment, she was my rock when I was given some news that I didn't want to hear.

I saw Dr. David Crandell. I knew some about him by my own research and word of mouth, but I must say, his bedside manner and empathy for my suffering was beyond what I expected. We talked about my current state of health, what my average day is like, what my diet is like, where I hurt, how I hurt, what makes me happy, makes me sad, what types of physical activity I am able to do, what I am unable to do, and what I want to do in the future.

I laid it all out for him. I've been extremely sick for a very long time, nearly 8 years. I hurt daily, physically and emotionally. I am not capable of the things I'd like to be capable of and I am not in the place I'd like to be life wise, all around. This disease has robbed me of being the mom and wife I want to be, having the career that I want, traveling, cooking, even walking my dogs. Telling him about my average day was when I really just lost it emotionally, because it truly is depressing to talk about. I deal with it day to day, but explaining it to someone else, and hearing myself say it outloud was really hard to stomach. I don't do much, because I can't. I try to write, do a little side work here and there, but 75% of the time I am unable to function at the level at which a 32 year old should. And this is not new for me, this has been going on for 8 years of my life. This is a painful pill to swallow, and until you've experienced it, you really can't understand how this impacts a life.

After we talked for about an hour, Dr. Crandell then did a physical examination of me. He examined my muscles, nerves, and spine. This process took about 20 minutes. It was very obvious that my body doesn't function as properly as it should. I've lost some serious muscle mass, that has put me into a downward spiral of sorts, because when you lose muscle mass in certain areas, it adds pressure in other places and you don't have the physical strength to hold yourself up. I also had some issues with neuropathy and a lack of blood flow to my extremities. Neurologically, I am also lacking. I have coordination issues that I didn't realize I had before, and I think I've been in a little bit of denial about this. It was all very sad for me to hear, so I cried. Both he and my advocate were very caring for me and helped lift my spirits. Later on in the day I had a complete breakdown and cried for a good 3 hours. I received a lot of information and was overwhelmed. Everytime I think I am making progress in this disease, I feel like I'm falling behind.

After my examination we discussed the issue of me being so far away from the clinic, and came up with a plan (utilizing the amazing case manager) for me to do outpatient treatments in Charlotte. He ordered PT, OT, Speech Therapy, Neuro-psych testing, Aquatic Therapy, and Mental Health Counseling. In addition to this I will be getting about 20 or so vials of blood drawn, and some scans. There are other great services The Dean Center offers, but to utilize them you must be in the Boston area, so I plan on being back there every 1-2 months.
Some of the other therapies include:
-Transcranial Brain Wave Therapy
-Neuro-rehab technologies
-Functional activity training
-Rehab Cognitive Function
-Special Equipment Evaluations

Spaulding currently DOES NOT treat the active Tick Borne Illnesses, they only offers services to aid in overcoming damage from the disease. So keep in mind if you choose to book an appointment here, this is just a piece to the puzzle. In my opinion it's a big piece, especially for anyone who is severely run down or bedridden from Lyme. We can treat with all kinds of methods, but until our bodies are at an optimal functioning level, we are trying to push water up hill. We need to attack this from all sides, the medicinal side (treating the infection), the physical side (healing the body) and the mental side (healing the mind).

This, my friends, is why the pilot program going on at Spaulding is HUGE (or as they say in Boston "Yuge"-haha). For the first time, we are seeing doctors who have never treated LD, looking at the damage done to a LD patient, and realizing that we are as sick as many other patients suffering from Traumatic Brain Injuries and Spinal Cord Injuries, and we need the same types of rehabilitation. For the first time, they are examining and studying our brains, and seeing that we have chronic brain inflammation and damage, just like other Traumatic Brain Injuries. This is groundbreaking research, and vital to the forward movement of treating and healing LD.

The Rehab Room at Spaulding, Overlooking Downtown Boston and the Charlestown River

The view from Spaulding lobby area

There is something to be said for a hospital group to take on the complexities that come with treating a LD patient. We are no breezy walk in the park. Many of us suffer tremendously from Neurological issues, mental health issues, major pain and debilitative issues, and so much more. We are not easy to treat, at all. But that is what is so interesting about this program, these doctors are experts in complexity and whole body pain management. They understand the connection between the brain, the Central Nervous System and the body. Having these physiatrists on our team, observing us, learning from us, is unprecedented.

This is GREAT for anyone in the Boston area, and I highly recommend it.

That being said, I think it's great for everyone with Lyme, but the travel and cost to do so is more complicated for those who are far away. I had to raise money to get there, and will likely need to continue to do so to continue my treatments there. But the genius in all of this, is that the case manager is helping me find doctors in my area who will treat me using the orders from Dr. Crandell. This is also a huge deal, because LD isn't recognized the way it should be, particularly in the south. So while I may have to navigate the system here and do a little teaching to get the doctors here on board, the end goal is to get these doctors to recognize the severity of this disease. To see, with fresh eyes, the debilitating damage that LD can do to the human body. To let them learn from me, by looking at my body, my lab results, my brain scans, and to see that Tick Borne Disease is so serious, and needs to be taken seriously. This is not a simple bacterial infection, it is complex. It is comprised of multiple pathogens that can vary from person to person, and there is no one-size-fits-all treatment for this disease. In order to heal and help people and alleviate their suffering WE MUST treat the LD patient individually, sorting out each pathogen, and each individual need.

Overall, I can't sing enough praise of Spaulding. I honestly had very mixed feelings going into this appointment, but left with a glimmer of hope that I haven't experienced in a really long time. I also have a better understanding of my overall health in general, and I know now where my body stands, and how hard I must fight to get it back to a functional level. I am at a critical point in my disease and my healing process, and I must attack this at all angles. With the help and guidance of Spaulding, I will be able to do this. It's not going to be easy, I'm going to hurt, but in the end I hope to have my body and my life back again- all while helping the advancement in the treatment of LD and LD patients.

Please remember, this isn't a cure-all facility. This is a program that is meant to work with your current Lyme Literate Medical Doctor, or Infectious Disease Specialist.

To contact Spaulding to make an appointment you can call: 617-952-6220

Much Love!
Hoping for a Cure!
XO Katy