Any students?

[Alix May]

I am in my final semester of my B.S. degree, and there are only eight weeks left, but I'm really struggling. I was diagnosed a few weeks into the semester, and really thought it wouldn't be a huge deal to get through it.

However, I seem to be one of the unlucky few with very bad balance issues and dizzy spells. While I've had *some* balance issues since the end of last semester, they didn't get really bad until the end of February (I had several falls). I'm having a lot of fatigue and the past couple of weeks I just fall asleep every afternoon. I don't think I've napped more than a few times a year in my adult life! Reading is often difficult. But so is motivation. There are times I could do the work and I just feel distracted or uninterested. Until this semester I had a 3.94 GPA, so this is really not like me.

I struggle with feeling like I am letting everyone down. I'm doing my best to attend classes where things are due so professors don't have to worry about making time for me to make up work (so far, so good). But getting around campus is really difficult.

Did anyone else have an AN discovered while they were in school? Did you try to explain things to your instructors?

I'm so stressed and I feel like a failure.

[SueLL]

I am not a student, but I am a professor.  I personally am always willing to work with students who explain their personal situations to me, whether they have to do with health, personal problems, family problems, etc.  (Even before my own AN saga.) Understanding instructors know that "Life Happens!"  It also helps that you have a strong academic record.  I would recommend talking to each instructor personally and explaining how you have been blindsided by both the symptoms and the diagnosis.  Some will be helpful; others may think you are looking for special treatment and may protest.  After you talk to them, you might be able to determine where to put your limited energy.  You might also consider requesting a few Incompletes.  You have a valid medical reason for doing so.  It can't hurt to approach them, and it may help alleviate some stress that you are feeling.  By the way, I find that stress makes my symptoms much worse!

On the emotional side, the AN diagnosis and symptoms are not easy to handle.  All of us on the forum have dealt with it differently, but it is definitely difficult at times.  Do not get down on yourself!

I have to run - Good Luck!

[Mimispree]

I bet you didn't know you would be taking an Advanced Placement Course on Life, during your final year.  Firstly, congratulations on your accomplishments.  It pains all of us to read your feeling like you've let people down:  You haven't done any such thing!  You should be especially proud of yourself.

I'm so sorry that your symptoms are bothering you at this crucial stage and the stress you are feeling is the pits!  It's hard to re-prioritize and ask for help, but it is completely understandable and no one should think less of you because of your serious health issue--ESPECIALLY YOU.

The hardest thing for me on this journey is to be gentle with myself and accept some new limitations and know that I will continue where I left off as soon as I get this dizziness and unbalance and another surgery behind me.  I wish life would happen on my timetable (because I put a lot of thought and sacrifice in to it, damn it!), but it doesn't always.

Take care of yourself and keep looking for solutions to cope through this because you will be on the other side of it.

I send you a big hug!

Michelle

[Alix May]

Michelle & Dr. SueLL, thank you so much for your kind responses! I didn't get the chance to come here yesterday until right before sleep, but I did fall asleep feeling well supported.

Michelle - it's so strange, I thought I had "gotten over" my perfectionism, but apparently I'm having a "flare!" I really relate to frustration at life not keeping up with my plans! I was so eager to get into the job market and start applying for graduate school. I have to remind myself often that we have, and can continue to, survive without my paycheck, and that things are only delayed and not destroyed. I'll keep trying to be kind to myself, but it's going to take some practice, I think. I'm really good at self-motivation, but also really good at punishing myself when I don't meet my own standards.

Dr. SueLL - thank you so much for the encouragement. I have a deep respect for professors and all they've accomplished and sacrificed to be where they are and do what they do. I really don't want to make their jobs any harder, and I'm always afraid of "oversharing." I will need to be near the offices for most of them tomorrow, so I'll see who I can catch during office hours.

[milhaus]

Alix:

I was diagnosed with a 3.8 cm AN during the summer before my final year of school at the University of Kansas. Before my diagnosis my symptoms wreaked complete havoc on my academic career. I was having trouble making it to classes, studying, and concentrating because I was having dizziness and vertigo attacks. I knew something was wrong and went to see doctors many times for over a year before I was finally diagnosed. I even went to the ER almost exactly one year before my diagnosis complaining of dizziness and they did a CAT scan and missed it!

Most of the doctors just thought it was all in my head and tried to prescribe antidepressants. This made it impossible to get any help with my academics because I had no real excuse. There was nothing "officially" wrong with me. So my grades really suffered but I persevered, eventually convincing myself I was just a basket case. I convinced myself that all my symptoms were just the result of anxiety.

Eventually I started to get nystagmus while sitting perfectly still. After that started doctors began taking me a bit more seriously and and MRI revealed my 3.8 cm tumor. I had it removed on July 31st in an 18 hour long surgery that kept me in the hospital for 10 days. Because the surgery was so long and my head was not properly supported I developed a pressure sore which caused a roughly 6 in by 2 in patch of my scalp to basically die and turn to scar tissue. The hair fell out and never came back.

I started school again just three weeks after my surgery. My wife had to drive me to and from all my classes and I just did the best I could. During this time I got facial paralysis that lasted about 2 months, and I lost the ability to taste with half of my tongue. I also lost the use of my left tear ducts and salivary glands all because my nervus intermedius was severed.

My follow up MRI that December revealed that 1.3 cm of my tumor was still remaining and so I had a second 8 hour surgery in March that kept me in the hospital for 5 days and kept me out of school for two weeks. All my professors and GTAs were very supportive and helpful and I ended up finishing that semester with a 3.6 GPA and graduating In May.

School was so much easier to manage and help was so much easier to obtain when I knew what the problem was. Before that it was a nightmare. Don't be afraid to tell people of your limitations. In my experience "brain tumor" is like a magic word that gets you a lot of sympathy and support. Don't abuse it, but certainly use it. Most professors want you to succeed, and in my experience if you reach out to them they will do everything they can to help.

If you are having vertigo I would suggest talking to your doctor about valium or another vestibular suppressant that would make it much easier to get around and least while you are pre-treatment. You are so close to the finish, I am sure you can do it.

You may always feel tired and lack motivation, but in my opinion it is okay to let yourself feel that way a little. With your GPA as high as it is already you can afford a few lower grades. Just stick with it for another 8 weeks. You don't have to be perfect you just have to finish.

It's not a sign of weakness to admit you are a victim. Allow yourself to be one, share your diagnosis with your professors, friends, and family, and take all the support you can get but never give up. I wouldn't have graduated if not for the support and understanding of all those people.

[Echo]

Hello Alix,

I'm so sorry that you have to deal with an AN at this point in your life.  There truly is no good time to have to deal with any serious health issue.  Life throws us these challenges and with inner strength and help from others we move on and things do get better again in most cases. 

While I am a lot older than you, I have had to deal with many of the same issues.  Balance and exhaustion were two of my big problems pre treatment, followed by some ocular motor issues along with the balance and exhaustion post treatment.  Like you I am not used to having to slow down.  Accepting that I just couldn't keep up with things the way I did before my diagnosis was extremely difficult.  Once I accepted the fact that I was going through a difficult process, through no choice of mine, I started to find positive ways to cope.  Joining this forum was the first thing that helped.  Next, I made sure to get plenty of rest and if that meant taking a 15 - 20 minute nap every day at noon, just so I could get through the rest of my day at work then that's what I did.  I found meditation recordings to listen to that were calming. I learned to pace myself. While none of these things made my symptoms go away, they did help me cope and get through my days easier than if I continued to push myself.  The days that I would push myself were the days I really paid for.  Definitely try to pace yourself and ask for the help you need to get through the next few weeks.  You are not a failure by doing this - you are being proactive and taking care of yourself!

There are many success stories here of people who have had surgery or radiation and returned to their productive and active lives. I can tell you that I'm one of them.  I'm doing 100% better now than I was a year ago.  I still have challenges at times, but compared to where I was pre diagnosis, life is good again.  I wish you the same good fortune and I am sure you will find your way through this difficult time.

Cathie.

[Alix May]

milhaus, congratulations on your impressive graduation! You went through an amazing ordeal, and I hope the people in your life lavished praise upon you.

I really appreciate your detailed response and encouragement to keep going! I don't think I can express how much. The only other AN student story I found was someone who withdrew, so I was beginning to feel it was impossible.

I looked at things yesterday to see where I stand. I think in four classes, it'll be fine - the professors range from being very empathetic to tolerating my absences, and are cool with me just keeping up with the work. One might be a C, but a C is passing, so that's fine.

Of the other two, I spoke to them yesterday. One doesn't really care and I got a "come to class or fail" sort of lecture. The other has their hands tied by bureaucracy - it's a practicum course, I need 20 hours of internship plus all the other class meetings/"field trips" to pull a C, and no one wants a intern mentally stuck on a roller coaster. There is no incomplete in that course, so if I fail, I just don't graduate.

So, it'll be a nervous April, for sure, but yesterday was the last day to withdraw, so my chips are all in.

I did get some valium, but I'm a commuter, so it doesn't work in all situations. I also picked up a forearm cane since I keep falling. Hopefully the two will help.

Thanks again for the response, and the courage to try.

[Alix May]

Cathie - it's really reassuring to know I'm not the only one with pre-treatment balance and exhaustion issues. It seems like what I'm going through is a rare type of of a really rare brain tumor, since my hearing is fine (ringing is annoying, but as long as the fullness + ringing isn't going at the same time, my hearing is normal), but I'm mostly plagued by how just flattened out I feel sometimes.

You're right, I am not good at slowing down these days! I never really noticed that until I had to. I will try to learn to pace myself and be more kind to myself.

Thank you, all. ❤ I don't really have family other than my husband and in-laws, and my friends all live far away, so this feels very comforting for me, to find support and understanding this way.

[SueLL]

It is amazing that some/most of your instructors were not more helpful!  What kind of human beings are they?

Luckily your high GPA can sustain some lower grades.  Please take care of yourself, though! 

We are all pulling for you to finish! 

[Alix May]

Thank you! You are all are incredibly encouraging. Five more weeks! I'll let you know how it goes.

It is amazing that some/most of your instructors were not more helpful!  What kind of human beings are they?

Luckily your high GPA can sustain some lower grades.  Please take care of yourself, though! 

We are all pulling for you to finish!

[sarah b]

H!i I'm new here and this forum is really helping me understand some of my post-surgical problems. I am a student and I was diagnosed with an AN when I was 19. I was a freshman in college and now I am in my junior year going on my senior year.  I had to take off a semester for my surgery. I had never had any surgery before but I personally had an awful experience in the hospital after my surgery. My surgery went great, there were no problems. I would recommend my surgeon to anyone who needed one in my area. Personally, I was extremely nauseous and I could not see straight. I don't think I ate for at least a day and when I finally did it was soup. I was in the hospital for 5 days and I only ate twice. I was just so nauseous from not being able to see straight. Even after I had gotten home I wasn't eating well. Anyway, I ended up going to physical therapy and then helped with my balance.  Every story is differentt. For me, I lost the hearing in my right ear and now deal with tinnitus which I never had as a symptom before surgery. It's really annoying during my classes to not be able to hear and on top of that have a continuous ringing in my ear as well. I also have some short term memory loss and it scares me sometimes. In class, it's a key aspect to have when listening to professors but I always forget ends of sentences and I'm afraid it's going to impact my further jobs.

[Alix May]

Hi, Sarah. Sorry for my delayed reply, the last two weeks of the semester have taken all of my energy.

I'm going to suggest going through the disability services office, if your school has one. It sounds like you could use a note taker to take notes for you. My experience with disability services was not so great, but most people I know have had better experiences at other schools. It really sounds like you need someone with better hearing and memory to take notes for you. Maybe this is something you can set up with your professors directly if you're not comfortable going the more legalistic route.  All but one of my professors have been great. I was told today by one of my professors that I need to talk to the troublesome one again, because apparently she has been talking badly about me to the department, which is really confusing all of them, because they think I'm great. So I'm stressed she's going to fail me and keep me from graduating. :/ We'll see how it goes when I talk with her tomorrow.

What sorts of jobs are you looking to do? I'm worried a bit, too. I struggled to find an internship that would take me with my fall risk, so I eventually stopped disclosing it.

[Leanne515]

Hello,

I know this is a bit late, sorry! I found out on Feb 16th of this year that I had an AN that was large & this needed to be operated on. I am a third year medical student, so I was on clinical rotations at that time. I really give you props because as soon as I found out, I took a medical leave of absence because I knew I wouldn't be able to focus the way I needed to, both for myself and for my patients. I was operated on on March 25th and I plan on returning to school in September.

I am almost positive that your professors will understand! It's not everyday one comes face to face with the reality we've had to come to terms with. My professors and the dean of my school were SO understanding, and even had me meet with the director of neurosurgery at my school. He is the one who referred me to Dr. Sisti, who operated on me. My school has been so helpful and continues to be! They regularly send emails and call to see how my recovery has been. Best of luck to you

[Alix May]

Thank you for the input, Leanne! I'm so glad your school is being supportive!!

For what it's worth, I did it! My grades were not so great (2 As, 3 B+, and a C), so my graduating GPA was 3.78. I just finished my last day of internship today (it won't count towards anything school/grade-wise, but I made a commitment to finish a certain amount of hours, so I did).

Thank you all so much for encouraging me to finish. It was really hard, but it feels so good to be done. And now I can apply to grad schools for 2016 while waiting for surgery and during recovery.

I don't know how many can view it, but this is me on grad day: https://www.facebook.com/photo.php?fbid=10153431928604873 tired, but so happy.

[SueLL]

Congratulations!!  Best of luck with the next steps - health and school-wise!