Now that you’ve been referred, here’s how you can prepare for your consultation with a specialist:

1.      Prepare a Folder or a binder with your medical records:

 I did this for my mother when I was her caretaker and it reduced her anxiety and stress as well as that of my own. I organized the binder with tabs labeled as: Provider Info, Patient History, Directions but you can organize per your preference.

Provider Info: I listed the physician’s name, number, location, and specialty. Be sure to include your primary care physician and/ or any referring physician.  I also listed social workers and clinical care coordinators who facilitated my mother's care and discharge. Home Health Aide agencies, medical supply companies, etc.

Patient History: I photocopied my mother’s insurance card and kept a copy in the binder as well as a copy of her driver’s license. I then included a Word Document with notes regarding her MD/ Hospital/ Homecare Visits as well as all documentation they provided.

Directions: To various sites we would visit.

Please use caution as sensitive information must be safeguarded. I kept the binder with me at all times unless my brother or other family member I trusted was assuming duties.

2.      Keep a list of current Medications:

Medication bottle themed ID card that  I picked up at during a recent visit to rehab. It's cute, compact, and perfect for anyone to keep with them. 

This includes those that are prescribed to you as well as anything herbal and over the counter. You can add this list to the binder as well as keep a fold out mini medication card in your purse or wallet. Ask your MD’s office for one, most will have one readily available for patients to fill out and use. You can include pictures of the pills prescribed to distinguish by appearance.

Here are some sample tables I made:

3.      Bring any CD’s or images with you.

In some cases, the physician to whom you are referred will have you complete certain diagnostic tests prior to your consultation. Depending on their access to the testing facility, you may have to bring a CD/copy of the test results with you. Sometimes you will be given a copy at the time of the visit, other times you will need to request a copy from the Medical Records Office. I had a neurosurgical consultation with an MD in New York and brought my MRI CD with me so that he could make his assessment. Don't rely on the referring physician to fax or mail them, it could delay your appointment. 

4.      Avoid “Google” and the act of self-diagnosing.

 Did I listen to that advice? No, of course not. But I wouldn’t be a true advocate or PA if I didn’t at least tell you not to. Yes, it is reasonable and expected to be curious, but don’t assume that you have everything you are reading about. Often, you can spend (waste) valuable time with the clinician discussing hypothetical situations instead of addressing key findings/ indicators, a list of differentials (possible diagnoses based on findings/ clinical presentation), and treatment options or future outlook. DO however, google specialists involved in the general area of the problem, if known. You MUST do your due diligence and be your own advocate or one for someone you love if you are a caretaker. Educate yourself on providers who are known for the “problem” you are seeking help for. There are organizations which can help guide you. I've listed a few for brain tumor patients and cancer patients on my Resources page.  

5.      Bring a tape recorder with you (especially for those with phones not equipped with one).

 Ideally, you can bring a friend or family member with you. Often, hearing words like “tumor, lesion, cancer, surgery, stroke, etc.” are enough to shock anyone, and not remembering key details of the visit is frustrating and frightening. Sometimes with my own patients, I would find they wouldn't tell me if they didn't understand something out of fear of embarrassing themselves or appearing unintelligent. I had a background in medical sciences so I was able to be a crutch for my mother but even I found some jargon to be beyond my comprehension at that time and would do additional reading to learn. Then, I was fortunate in that two of my dear and close friends went with me to my consultations separately and they were both in the medical field, but not everyone has that luxury. Ask the physician if they wouldn’t mind you recording the conversation and review the file aftewards.

6.      Asking Questions

My first time writing (left hand), 2 months after surgery. Part of preparation for my first follow-up visit with Dr. Diluna.

 A clinician should be understanding and compassionate to what you are feeling and having to deal with. Don’t feel nervous to ask a question, it is your RIGHT. Ask what their experience is with your particular situation.  Ask if anyone else in the practice also performs/ treats these conditions. (You should google them too)  

The American Brain Tumor Association (#theABTA) shared an amazing list of questions to keep with you for your appointment and I would strongly encourage you to look at them or share them with someone you know visiting with a specialist.

http://www.abta.org/resources/care-and-treatment-section-resources/questions-for-health-care.pdf

7.      If you’re specialist recommends surgery:

Regardless of the type of surgery and reason, basic questions applicable to all are what is the “usual” amount of time for duration of surgery? What imaging or testing will I need prior to surgery? What is the expected recovery time immediately post-op and when are patients discharged home typically?  How often will I require follow-up care or visits with you?

For those with a tumor: You will likely be given information regarding location, size, quality or appearance on imaging, etc. Additional questions to consider include: What is the rate of recurrence? What are contributing factors which increase the likelihood of recurrence (genetics, previous recurrence, exposure, etc.)? Will I need chemotherapy or radiation (even if prophylactically)?

8.      Don’t be afraid to ask for a referral if you would like a second opinion.

You should never be uncomfortable or hesitant to seek a second, third (etc.) opinion, unless you are comfortable with the first, and only you can judge that. As a patient, when my surgeon suggested I consult with a surgeon in NYC, I felt comfortable with him and appreciated his willingness to recommend someone. And yes, I did seek another opinion from the neurosurgeon he recommended. How many should you have? Too many sources can be overwhelming and counterproductive. Only you can gauge how much is enough, but use caution. Spend your time and energy wisely. For me I needed it for my ongoing recovery after surgery.

9.      Update your provider visit information in the binder after your consultation.

Jot down key points from your appointment. It makes a great reference and no second guessing, ‘wait, did she say this was the next step?’, ‘what did he want me to do?’ It can be overwhelming, and for me it was. But, you figure out shortcuts, a rhythm, and slowly you feel like this (organization) is one thing right now you can control.

10.      Lastly, keep a positive and proactive outlook and try to have a sense of humor despite the craziness.

As insane as this may seem, even when you are dealing with the worst, laughing can be therapeutic. It may not happen at first. It certainly didn’t for me but by my third appointment I was past the disbelief, emotional stage and in tune with my personality, I got to the acceptance and proactive stage. At one particular visit, I remember sharing with my MD and a mutual friend, also a physician that I read some patients develop serious personality disorders even becoming promiscuous after neurosurgery. Having lived a fairly conservative life, I stated I thought promiscuity would be preferable over death or neurocognitive decline.  Luckily, since my surgery I’ve not suffered from death, neurocognitive decline, or the development of a loose character. 

Brain Tumor Awareness Month- May 2015

May 31st marked the last day of Brain Tumor Awareness Month (‪#‎BTAM‬) & I am so grateful to have ended the month on a positive note. I was fortunate to be able to attend the Connecticut Brain Tumor Alliance (‪#‎CTBTA‬) annual Laughter on the Brain event in Hartford. A night filled with inspirational people, music by Broca's Area, and hilarious comedians. Laughs did not end there, I celebrated my nieces' 13th birthday and it was good times and silly jokes then too.

I think most would agree that laughter is the best therapy.

7 Things Most Patients Don't Want to Hear When They're Recovering from Surgery

1.      You look Great (when we don’t):

This can be perceived as pity, especially if we’re alert and oriented enough to detect it. It’s not that we don’t appreciate the fact that you’re trying to be kind. It’s just normally, we would put more effort into our appearance than just waking up and sitting around in a hospital gown covered with mouthwash from the swish and swallow the nurse had us do earlier. I don’t remember feeling self-conscious until the day I was being transferred from the hospital to rehab. As I was being lifted into the ambulance, I remember catching a glimpse of myself in the mirror by the exit doors and I was mortified. I looked like the young girl from the original Exorcist movie and that’s an understatement. The gentleman who was getting me into the ambulance saw the color go out of my face and said “awe, honey. It’s not that bad. You look fine.” I would have honestly preferred cousin It from the Adams Family over the girl from Exorcist, only because It’s hair was smooth as if it was just treated with a keratin blow out. Just saying, priorities.

2.      No, You don’t look Different to Me

This was in response to my growing concern that my face along with the rest of me was starting to blow up from the high dose steroids, commonly known as “Moon Facies”. Obviously, when it’s happening, which is over a long period of time, the patient doesn’t notice right away so I didn’t expect my family and friends to either. But eventually, when I did start to notice, I was frustrated when people would say I don’t notice anything different, you look fine or you look the same. I tried to explain to a friend visiting me in rehab and the only way I could describe it is that my face looked like it ate my previous face. When everyone kept telling me I look like my normal self, it made me feel HORRIBLE. I kept thinking, OMG, is this what I look like all the time? Luckily, one of my closest friends, kept it real and was the first one who basically said, “No girl, you have moon facies.” I was all golden after that. 

3. You Should Really Try to Do More so Your Progress is not Stagnant.

  All of a sudden, everyone becomes an expert after YOU have surgery. This statement in particular was one of the most frustrating. I’m a pretty positive person but losing function on my dominant side and spending all day trying to compensate with its counterpart was emotionally, mentally, and physically frustrating. Then add the unsolicited advice or commentary that I am not pushing myself to my potential was not only diminishing my efforts and the improvement I was making but also my spirit and self-esteem. I literally would stay up late after everyone left and try to move my right side or stare at my hand, leg, and foot and think please move, if only a little. And that was devastating to an already bruised psyche, until it finally happened.

4.      So are you ever going to be normal again?

  I was asked this ALL the time, just yesterday in fact by someone close to me. This to me is as bad as asking, “when do the doctors think this will be fixed?” As a clinician, I can assure you, just like all five fingers on your hand are different from one another, so are patients and therefore, recovery is extremely unpredictable. When I was first told in the hospital that I was paralyzed, my surgeon honestly believed and convinced me as well that the swelling would diminish and I would awaken one day and be back to baseline. So naturally, I woke up EVERY single day for three weeks and the first thing I would check is if I could move my right side. And every day, I would be crushed to find out I couldn’t. I kept thinking if not today, then maybe tomorrow and it was a vicious cycle. One day, I decided that I would no longer think that it would be a miracle overnight and the sooner I realize this will be a process for a “while”, the better I’ll be. It was only until that moment, that I felt a tremendous burden was lifted off my shoulders and now I still take it “one day at a time”. 

5.      You should be grateful, just look at so and so. 

 This was definitely from a positive place as well but not always well received. Even though I tried to remain optimistic and keep moving forward, there were and are days where I will wake up and I’m in a funk. I feel like the donkey from Winnie the Pooh, Eyeore, “woe is me”. This can happen to anyone on a good day so certainly after surgery it would not be uncommon. And especially earlier on, the last thing I wanted to hear was about someone else’s hardship. Sometimes, it would add on and make me feel worse and worry about them too.

6.      Maybe you’ll meet someone in rehab. 

To put it in context, I was in the stroke unit and I was a 3 person assist for transfers, bathing, and how do I say this delicately, using the “powder” room. Even in this condition, there were people who unfortunately were worse off than I was. Indeed, a love connection was neither expected, pursued, nor had. That storyline is cute in Lifetime movies only, thank you, or rare real life stories in something like Glamour magazine articles.  Maybe it’s just my luck or unrealistic expectations that one day I’ll meet a younger version of Liam Neeson. Hey, stranger things have happened, but I digress.

7.  You should enjoy your time off from working and look at this like a vacation. 

Truthfully, I probably was naive enough to say that to someone before too. But let me tell you about my vacation. Once a week I would be startled awake at 3am not because a tropical breeze blew open the windows to my luxury suite, but because the tourniquet was keeping a choke hold on my arm so that the tech could draw labs (blood). And then, I would stay wide awake until 6am when I would have to use the “powder” room like clockwork. Because I couldn’t just get up and go, I’d have to page the nurse’s station and wait for 3 people to come all while struggling to control my bladder, the urge was more intense after surgery for some reason. They, the nurses, would then help lift me up, put me in the wheelchair and transport me to the “powder” room and in the end, I’d have to page them again so they could lift me up and put me on the wheelchair to bring me out. After this morning ritual, I’d have a day of PT, OT, and speech therapy where I would have to learn how to solve basic math problems of addition and subtraction, test if I could remember words like colors, objects, and pets. But, mostly I would spend a great deal of the time struggling emotionally with why I was having so much difficulty completing these easy tasks. So no, that is not a vacation. Don’t get me wrong, the resources and assistance I had were a blessing and I mean no disrespect for I am very grateful, but let me be clear, it was not a vacation and I certainly wouldn't have bought a timeshare if it were. 

All of these commonly used statements came from a good place but hopefully I was able to illustrate in this article, the effects it had on me as I was recovering from a traumatic event in my life. If anything, my hope is that perhaps someone else recovering from something in their life may not have to deal with these emotions too.

In hindsight, there was beauty in Recovery

Last June, my father called me from work one day while I was in rehab and sensing my spirits were low sent my brother Faraz to cheer me up in a way that only he can. My brother, despite my protests of feeling embarrassed regarding my appearance, took my picture and told me, a year from now when you're no longer on steroids or in a wheelchair, you'll look back and be proud of getting through this. Well, it's been a year, so I've decided to share the pics in case anyone else is dealing with something too.

Facing Adversity with Grace & Dignity

One of my favorite quotes is by Dr. Martin Luther King Jr.

"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."

I have learned this from my life experiences and I try to teach my students that we must always try to face adversity with grace and dignity, even if at times we fail. I recently watched a TED Talks video (huge fan of these) that I believe captures this beautifully. If you can spare 3 minutes, I encourage you to watch this simple but powerful message of seeing the positive in difficulty and challenge. I think anyone can relate to this. Please share as 
well

.‪#‎BTAM‬ ‪#‎theABTA‬ ‪#‎NBTS‬

Read more at http://www.brainyquote.com/…/quotes/m/martinluth109228.html… 

Driving After Disability IS Possible!

Driving after disability IS possible! It's taken me a year to finally sit behind the wheel for the first time for my driving eval and I passed! If you or someone you know is dealing with this then please visit the link below on ways to get started.

http://www.therightsideofperfect.com/resources-1/

‪#‎BTAM‬

                              Yes, I can and I did.  

                              Yes, I can and I did. 

 

                                          Watch out! Here I come...

                                          Watch out! Here I come...

10 Things I learned after having Brain Tumor Surgery, as a Clinician & as a Patient

10. Surprisingly, it’s the relatively “small stuff” that you remember as making you the MOST MISERABLE.

Although I’ve had neurosurgery, spent hours cumulatively lying in an MRI machine, developed paralysis of my dominant side, and have been involved in extensive rehab therapy, I surprisingly did not and do not find these to be the worst things about my experience. In fact, I wasn’t aware of anything  during surgery obviously thanks to amazing drugs coupled with an equally amazing anesthesiologist and this feeling of being in a dream like state lasted a few weeks after as well. As for MRIs, they can become tolerable by simply asking for a mirror to be placed inside to give the illusion of extra space. Trust me this helps a lot. 

Interestingly, the things which I found to make me the most  miserable are also the least invasive and obvious in comparison to other more harrowing events. First, having a suppository. Now keep in mind, I was completely paralyzed on my right side. Inducing a bowel movement in someone who can’t move is inhumane. Next, straight catheterization. This was by far one of the most uncomfortable and excruciating things my foggy brain retained in memory as a fresh post-operative patient. At one point, I begged the nurse to demand the fellow to order me a foley since a UTI was the LAST worry on my jetlagged mind. Equally as horrible are glucose finger sticks to test for blood sugar levels. My fingers went numb on my left side to match my already numb right hand. Luckily this was discontinued when the steroids were. 

Lastly, my next offender is the Lovenox injection (blood thinner). These were the bane of my rehab existence. They are given once daily, under the skin (subcutaneously), usually where one has the most fat accumulated. In my instance, it could have been anywhere, but we opted for the belly. The injection site BURNs for up to five minutes after administering and it was so bad that the only way I could entertain myself was to play “Happy” by Pharrell and laugh because I felt anything but. 

The best part about all of this is that all of the items I have mentioned are those which I have ordered for my own patients as a clinician. To experience them myself, gave me a whole new appreciation of what my surgical patients endured. Karma, enough said.

9. You forget many of the people you have met in the hospital.

Although unfortunate, you might forget names and faces of people who helped you in your time of greatest need. Luckily, I know I thanked them. Actually, I even offered them my food and drinks. I was so high on meds, I probably would have offered my kidney if asked but luckily I wasn't. My family and friends tell me I was the nicest patient they have ever met. Thank God since as a clinician I would often joke with colleagues that I never wanted to be that crazy combative or verbally abusive patient one would sometimes encounter. It can happen to anyone so if it was you no shame, we (clinicians) don't hold grudges.  I digress, but I have always have been one of those people who goes out of her way to introduce myself and become acquainted with others who I encounter, in whatever capacity. I’m a little embarrassed, and yes I realize given the circumstances it happens, but I don’t remember the names of some people who cared for me post-operatively and earlier on in rehab, regardless of how amazing.

8.  Laughter truly is the best therapy.

Image obtained via Pixbay (no attribution required).

Image obtained via Pixbay (no attribution required).

I have taken a variety of medications since my surgery at various points postoperatively, but nothing can make you feel as good as a big dose of laughter. Multiple doses to be exact, and no you can never overdose. I think it was in rehab when I first laughed and I just remember letting go completely. It felt like a fresh breeze. I loved to laugh with my nurses, PCAs, techs, and therapists. I had this routine where when I was being returned to my room from therapy, being that my room was the closest to the nurses station, I would burst out in a Salt ‘n Peppa verse. “Salt n Pepa’s here, and we’re in effect”. The nurse on duty that day would respond, “Want you to push it back”.  With everyone then chiming in the chorus, “ooh baby baby, ooh baby baby’. Laughter literally was one of the most important things that influenced my recovery as humor is a big part of who I am. It helped me take care of my mother when she was diagnosed with leukemia, my patients when I worked clinically, and it helps me today as I have dealt with and currently face the uncertainty of anything surrounding my brain tumor experience.

7. Follow-up MRI’s and doctor visits can be a scary thing.

May 13th 2015 will be my one year anniversary and as of yet my MRI has been negative. The first year after surgery the monitoring is every three months and now I can progress to every six months. Although the results have been negative, I still get just a little worried every time I go in to see Dr. Diluna. Just that brief moment as he walks into the exam room door I think, “what if there is a recurrence”? Then all of the possibilities run through your mind and you think, I just never want to have surgery again and I think anyone that has undergone this can agree. I am grateful that there are measures today which can be taken to eradicate patients of disease; however, once is ideal, and even that really is too much.

6. Even after major life altering events, eventually you find yourself worrying about the same things you worried about before.

Initially after my surgery, I was on a high, and no I am not referring to the feeling of euphoria induced by narcotics. I am referring to the feeling of extreme gratitude for being alive and in my instance for being neurocognitively intact. Prior to surgery, I told Dr. Diluna, all I want is to wake up the same person. So after surgery, I was ecstatic that despite the fact I couldn’t walk or move my arm or leg, I could still tell jokes, no matter how corny. And if you’re wondering why I didn’t sit in my room at rehab everyday crying all the time, it’s because I’m a glass half full kind of woman and this has served me well. But even with all the gratitude, after the initial first month of being in rehab, I found myself worrying about the same things I worried about before surgery.

My student loans  (I owe what most people pay for a mortgage), cell phone charges, car payment, car insurance, the list goes on. Luckily, I had savings, not tons but enough for a few months. It’s scary since I knew it couldn’t last me forever and not being employed at the time I worried about that too. My advice, get as much of your life figured out as you can before being diagnosed with a brain tumor and good luck with that. 

Vanity was another thing I never thought would seem important anymore, but as Maury Povich would say, “the lie detector test revealed, that too was a lie”. After losing most of my hair from the stress of surgery and steroids, I saved and bought hair extensions once employed. Necessity? No, but feeling good about yourself affects your ability to perform optimally both socially and professionally.

 
 

5. Food and everything that once had flavor, no longer tastes that way after surgery, at least for a while.

Image obtained via Pixbay (no attribution required).

Image obtained via Pixbay (no attribution required).

I knew that patients could develop "metal mouth" or an altered sense of taste as a result of medications as it happened to my patients and my own mother as well from chemotherapy, but I was not expecting this oddly enough, for myself. I was completely blindsided when I drank my favorite poison, Diet Coke, and I almost wanted to vomit. I just remember it tasting awful and thinking my brother got me a dirty cup or some crazy flavor like root beer. The interesting part is the only food that tasted good was the food at the cafeteria and takeout Chinese. This lasted even when I was discharged home for about two months. A total of about four months after my surgery my taste started normalizing. Until then I would have cravings but once the food arrived or was prepared I couldn’t stomach the thought of eating it.  

4. Pain medicine can result in very serious nightmares.

Image obtained via Pixbay (no attribution required).

Image obtained via Pixbay (no attribution required).

Even as I type this, I can’t help but imagine a commercial voice quickly reading this as side effect in one of those pharmaceutical ads. At first I had some intense nightmares while I was in rehab due to the narcotics and steroids and eventually, I opted on just taking Tylenol, which also helped eliminate the need for any evil suppositories. Often, I would wake up from dreaming that a dark shadow was running around in my room or my craziest dream that I was sleeping in my bed in a conference room while my former colleagues were having a meeting. That for some reason was the most disturbing as I kept thinking I’m not dressed or prepared! I had to sleep with the door open for the remainder of my time in rehab so I could hear the nurses station when I awoke at night. The nightmares stopped as I was weaned off the medications.

3. Even clinicians are non-compliant patients.

Image obtained via Pixbay (no attribution required).

Image obtained via Pixbay (no attribution required).

To this day, almost a year later, I still struggle with compliance. When I see my neurosurgeon, primary care physician, or rehab internist  I am always embarrassed to admit that I’m not always the most compliant with medications for spasticity. I actually had the audacity to ask my neurosurgeon to change my dose to once a day since TID (three times a day) was too difficult in between teaching classes. To which he smirked and gave me a mental, ‘are you freaking kidding me’ head nod. For those of you reading this that work in healthcare, a lot you know exactly what I’m talking about. Luckily not everyone, just think Dr. Oz and picture him having green tea and doing yoga. For me, I guess I can blame my mother who as an immigrant raising us in the 80’s would prophylactically give my two brothers and me children’s Robitussin even if only one of us was sick. Since she was gone all day for work, we’d each get all three doses for the day in the morning. My mom mentioned this ingenious trick she figured out to our pediatrician who kindly informed her this was not prophylaxis but dangerous and yes, she promptly stopped. Needless to say, I probably developed a bad once a day habit very young.

2. You should never doubt your patients.

As a clinician I sometimes I failed to see potential in complicated peri-operative patients . It was miracles that made you stop and take a moment to appreciate a greater intervention, beyond medicine, which saved patients. I've seen patients who came in practically lifeless but would walk out a few months later, a little bruised of course, but alive and grateful. Still, it wasn't until I became a patient and met others who were admitted to the stroke unit with me that I realized you just never know how much patients can amaze you. How much they can push themselves to reclaim some of the glory of a healthier, previous life.

1.       You should never doubt yourself.

Photo by View Stock/View Stock / Getty Images

Before my surgery, I saw a job posting for an academic positon and I thought I’ll be home a few days after surgery, I’ll apply when I have recovered afterwards. I had no idea I would develop paralysis and go to rehab. Even in rehab, much to the dismay of my physicians and nurses, I wrote my cover letter, granted it took me a lot longer than normal, and I submitted it.  I was called the next day to schedule an interview but given my physical condition and at that point neurocognitive fogginess, I was not able to interview until 5 months later and was hired. It could have been very different for me had I not applied.  I was told gently but repeatedly by my medical team and some family and friends to take it easy this year, apply for diasbility and just focus on recovering but I'm glad that at a point in my life where I was my weakest both physically and neurocognitively, I took this chance despite the great risk of being rejected. Now, when I speak about my experience with my students who are aspiring clinicians at the University of Bridgeport Physician Assistant Program, I make sure to tell them to never doubt their patients. I tell them, you will be surprised how far someone is willing to go to have something they think about night and day. I read the job description literally every day and it motivated me to work harder in rehab and continue to practice walking until I could walk into my interview. I saw my physiatrist after I was hired and she was in tears and stated she used to feel bad for me when I was inpatient because I was so passionate about teaching at UB and she didn’t think I would be physically able to.

Ultimately from my experience, I have learned my greatest and most difficult lesson to never doubt myself as I will have many opportunities to appreciate how far I can go to accomplish what others and sometimes even I myself have considered once impossible.