Got the results of an MRI and MRA of my brain back yesterday. Whatever this is, it’s NOT either a cerebral aneurysm or a brain tumor. Very happy about that.
My symptoms haven’t abated—I’m having a rough time sitting up right now to type this—so we have more testing upcoming, some for serious stuff. But I’m truly grateful to have both of those monster diagnoses off my back.
And I appreciate every e-mail you’ve sent expressing support or letting me know of personal experiences with this same batch of symptoms. I haven’t had the strength to answer them all, but I have read every one.
Also got some copies of very cool pictures of the inside of my head, and when I get the office put together (I haven’t been up to unpacking, and Matt’s been doing everything on his own in between being with me), I’ll scan a couple and post them here. I got out of nursing BEFORE MRIs were common technology—if you haven’t seen what science can do with giant magnets and film, you’re in for a (mildly creepy) treat.
Speaking of science brings me to the following question. My father-in-law is an award-winning public-school science teacher who is angry and frustrated about how dumbed-down, poorly constructed mandatory curricula are crippling the way science teachers can teach in public schools and how these curricula are actually preventing kids from learning real, usable, fascinating science.
After trying to fix the system from the inside—and I’ve watched him fight this fight for years—he’s determined to find a way to teach good science on his own.
If you have a kid in any variety of school (public, private, or homeschool), would you please drop by his blog, read his first post, and give him your ideas on what good science teaching for your kid would include?
Here’s the post:
New Online Science Course
I really appreciate any comments you can offer him.
And I’ll keep you updated on my medical stuff as I progress through testing (or if I find ANYthing that will help these symptoms and get me back to work).
I know you aren’t religious Holly…but is it okay that I am praying for you? I hope that everything goes well for you and if there is something wrong the doctors find it so they can fix it.
My sister has been visiting the doctors as well. She has lumps in her neck and they think it might be cancer. And, instead of doing tests for that first they have waited to do those tests last. She has been in and out of the hospital for over two months now. And, because she is just a kid (only 17) I am terrified for her.
I’m praying for the best, for both of you.
I have another doctor’s appointment tomorrow. I’ll let you know how it goes.
You AMAZE me! How much you are going through and hard you still work, especially all you do for new writers. Thank you and good luck!
May you be well soon. I’m holding you in my thoughts and heart.
I’m sure plenty of folks here have sent you running to WebMD – it’s my mom’s favorite site! – but I just wanted to let you know that you have been in my thoughts every day and I am hoping for your speedy and full recovery. Please get some rest in the meantime!
HOLLY, HAVE YOU STOPPED TO THINK IT MIGHT BE MENIERE’S DISEASE? IT’S AN INNER EAR ILLNESS WITH NAUSEA, THE SPINS AND DIZZYNESS, RINGING IN THE EARS, HEAD ACHES ECT. I WOULD ASK YOUR DOCTOR TO LOOK INTO IT, IT CAN BE MISDIAGNOSED. I HAVE IT.
THEY SAY LIFE BEGINS AT 40 BUT, THEY FORGOT TO MENTION IT GOES DOWN HILL. AT 40 I WAS DIAGNOSED WITH A RARE MUSCLE DISEASE WITH ONLY 72 HOURS TO LIVE IF THEY DIDN’T FIND IT. IT’S CALLED DERMATOMYITIS POLYMYOSITIS. IT IS A AUTO IMMUNE PROBLEM AND HAS CAUSE MANY OTHER ILLNESSES, 30 IN A MILLION PEOPLE GET IT AND IT KEPT ME BEDRIDDEN FOR 6 MONTHS AND IN A WHEEL CHAIR FOR 4 MONTHS. IT’S IN REMISSION BUT, I GET FLARE UPS USUALLY CAUSED BY STRESS AND I HAVE A WHOLE LOT OF THAT. I ALSO HAVE A SON WITH A T.B.I. THAT HE ACQUIRED WHILE RIDING HIS TWO WHEEL BIKE WHEN HE WAS HIT BY A SPEEDING CAR. HE WAS 17 WHEN IT HAPPENED AND HE IS NOW IN A BODY OF A 36 YEAR OLD MAN WITH THE MENTALITY OF A 13 YEAR OLD. IT IS AS AUTO IMMUNE PROBLEM AND HAS CAUSE MANY OTHER ILLNESSES FOR ME, LIKE COLON CANCER WHICH THEY DETECTED VERY EARLY, SO I HAVE TO BE TESTED EVERY 2 YEARS. I CAUGHT THE NOR-WALK FLU WHICH LEFT ME WITH A VIRAL INFECTION, WHICH LEFT ME WITH MENIERE’S. NOW THROUGH ALL THIS I HAVE RUPTURED AND HERNIATED DISCS IN MY BACK WITH ALL KINDS OF LARGE SPURS GOING EVERY WHICH WAY AND PINCHING NERVES IN MY BACK. I CAN’T WALK WITHOUT A WALKER. I HAD A STROKE LAST MAY BECAUSE I HAVE HEREDITY HIGH CHOLESTEROL. I JUST TURNED 58.
I DON’T KNOW WHAT NORMAL HEALTHY IS AND IF IT WAS TO EVER HAPPEN, TO BE NORMAL THAT IS, I’D PROBABLY DROP DEAD OF SHOCK.
SO ASK ALL KINDS OF QUESTIONS AND GET SECOND OPINION IF YOU HAVE TO. BEING ILL IS LIFE ALTERING, SO PLEASE TAKE CARE OF YOURSELF.
I apologize for bringing this up again – but cerebral aneurysms or a brain tumor aside, did you rule out Chiari Malformation? Again everything you are stating you are feeling correlates to that particular medical issue. However, that being said, you can visibly see in photos of patients with Chiari Malformation that their cerebellum extends and presses down on their spinal chords.
I will send warm thoughts of healing your way.
You might want to look up Lyme disease. Your symptoms triggered my thoughts in that direction.
Have a wonderful holiday!
So sorry to hear about your medical issues. Wow. I haven’t read through all the replies but in case no one has mentioned this I will. If you drink ANY kind of diet drink: STOP! Many diet drinks contain the sweetener aspartame. Under the right conditions (if it gets to warm is one) aspartame converts to formaldehyde in the body. If you drink enough of it you can get formaldehyde poisoning… The symptoms can vary from person to person. You are in my prayers for a quick and robust recovery. T.
…You may have just cured my coffee habit. 8<
Don’t worry about it. Keep drinking your coffee:
Holly, I think about you every day. I have no medical insight to share, just all my good wishes. I would not where I am in my book without you, and I don’t just think about you every day — I thank you!
I am just now catching up on my own emails. My first thought was how exciting I find the idea of Rebel Tales, and I would definitely love to get on board with it in any way I can. Please keep me in mind for that when you can.
But that aside… Jeez woman! You are having a rough go of it health-wise. I can relate. Three years ago I had a blood clot in my pulmonary artery of unknown origin and the aftermath of it left me with pulmonary hypertension for which I now take very expensive drugs. And I still don’t feel normal. I’ve had to make adjustments too, and I could sooooooo relate to what you wrote. We have what we have in terms of circumstances and I was thinking of something to add to your “Safe/Perfect/Victim/Fear” mantra that I have found profoundly applicable in my own life. Maybe we should add “SICK might as well give up”.
I am sending requests to the Masters of the Universe to hold you gently in their regard and restore you to the state you desire to be in.
My sincerest best wishes and energies,
Wishing the best for your health and recovery. You are truly talented! Blessed be!
Thought one: Laughter’s not the best medicine, but it’s a darned good placebo.
Thought two: My jokes are sometimes funny.
Conclusion: Tell a joke and pray it’s helpful.
Sven:–Vhy did zhe monkey fall out of zhe tree?
Ole: –I don’t know.
Sven: Because it vas dead. Vhy did zhe second monkey fall out of zhe tree?
Ole: Was it dead too?
Sven: No, it vas yust tied to zhe first monkey. Vhy did zhe chicken fall out of zhe tree?
Ole: There’s a chicken in the tree?
Sven: Not anymore. It fell out. Zhe qvestion is, vhy?
Ole: Can I ask the audience?
Ole: Well I don’t know why a chicken would be in a tree. Why would one fall out of a tree it shouldn’t be in?
Sven: Vell, zhe monkies did.
Alternatively: Two guys walked into a bar. The third one ducked.
I laughed. Thank you. Those are both pretty good jokes.
Lots of prayers for all!
Just a quickie to let you know that all is with you. ~~big smile~~
Aaaand to let you know that you are the second person that I have ever had the privilege to say to them, ” You got moxie.” ~wink~. And you truly do.
The other was a 4-5 yr. old girl that was ruling the restaurant with her wit, intelligence and energy.
Hang in there girlie,
I’d much rather have moxie than anemia. 😀
Hope they figure it out soon. Best thoughts and wishes heading your way.
Hang in there, Holly. Hope you’re feeling better soon.
Through endless hours of navigating the net, I stumbled upon your website about six months ago… and it was like a revelation to me and a trigger to multiple (positive) reactions. I won’t tire you with explanations, but I am sure you take joy in knowing that the expression of the person you are really matters and can make a difference in people’s lives.
Your emails are among the first I open (see, I’m not sucking up to you; I still prefer my long-time friends…) and I always know I will find something in them that will make my day brighter and sometimes carry my thoughts into unexpected regions. The thing is that you have become some sort of friend to me, in the broader sense of the word, and I feel quite concerned about your recent health condition – whenever you post a little something, I rush over to find out your latest news.
I feel so sorry I can’t be more of a practical help, but I haven’t got the slightest clue about your symptoms. All I can do is perhaps make you smile a little – so…
…I wish all the love, all the inspiration, all the warm feelings that you have stirred in so many people become messengers of our desire for you to get well and back on your feet along with the whit, the determination and all those qualities that have made us grow so fond of you.
Thank you. I’m glad you read your friends’ emails first. Your priorities are in the right place.
And I’m also glad you enjoy mine. I really appreciate the good wishes.
Hey sweetie I hope you are feeling just a little bit better. I don’t know what normal is as far as feeling well. There is something always wrong with me health wise. I don’t want to scare you, only make you aware; have your specialists look beyond the normal health problems. Fifteen years ago I almost died due to the fact that I had a rare disease only 30 in a million people get and I had 72 hours to live if they didn’t it find it. It left me bedridden for 6 months and in a wheelchair for 4 months during rehab. It is in remission, but I still have flare up,especially if I’m stressed. It’s in the same family branch of arthritis, lupus, MS ect. So please ask all you can about the rare and often fatal diseases. MINE HIT MY MUSCLES SO I WAS LUCKY, BUT THE OTHER TYPE HITS THE ORGANS AND IS FATAL SO ASK, ASK, ASK,!
Holly, please get well. We all need you!
I hope and pray you’ll be completely well soon.
And I’m sure you soon will be.
Best wishes and much metta
Pain is inevitable;
Suffering is not.
Holly I’m sorry to hear about your medical problems. My thoughts and prayers are with you. Be well!
re: Good info site.
May I humbly ask if you have looked into A Chiari Malformation? My wife went through many of the same diagnoses and problems – for some reason her gen doc didn’t see the extended cerebellum (putting pressure on her spinal chord and literally shorting out her central nervous system at random intervals). She’s since had it take care of and is doing well now 1 year later.
Just thought I would ask.
Wow. I’m glad your wife is doing well. And I’m hoping this is something that the MRI/MRA would have caught. I have the pictures, I’ve looked at them, and they do extend all the way into the top part of the spinal cord.
When I see my primary doc next week, (for another evaluation and more bloodwork, yippee) I’ll ask about this, though. I have a list of things suggested by folks who’ve e-mailed me, and I’m going to run through it with him to make sure we don’t miss anything.
The problem with Chiari Malformation is that many radiologists and doctors, even neurologists, just view the abnormal position of the cerebellar tonsils as normal, or “within normal limits.”
To rule it out, or in, you pretty much have to see a Chiari specialist. They know what to look for and what other tests to run, like a CINE MRI that measures flow of CSF. But again, someone experienced in the condition would read it differently than someone not experienced in it.
I had an MRI that the report said “lower than normal cerebellar tonsils” but all the docs who saw it said it was normal. It was 8 years later, and countless more doctors, who looked at the MRI when a new neurologist I went to see took one look at my MRI and saw it right away. And let me know it was treatable. I had a list of undiagnosable seemingly unrelated symptoms for over 40 years, that were becoming un-manageable. I had the surgery less than a year after diagnosis. I have improved even more than my neurosurgeon hoped for.
Symptoms are not always the same, from person to person. Mine were migraines, other undiagnosable head pain, dizzy, trouble staying balanced when standign or walking. One doctor had gotten close when he said it was menieres-like but was not progressing like menieres. (It is one of many mis-diagnoses of Chiari.)
Since it started when I was a kid, I had unconscously developed a lot of coping mechanisms like walking close to a wall and running my hand along it, lightly touching things as I walked by, etc.
You can write to me off list to get info on this and docs close to you, or not close, who would be the ones to look at the MRI, in the least, to rule this in or out. hannatet at live dot com
You really need someone experienced in that condition to know if it IS or ISN’T.
Best wishes, I hope you get relief soon.
My other post to this apparently did not survive Moderating.
Chiari Malformation is not often correctly diagnosed by general doctors, radiologists or even some neurologists. It takes a Chiari Specialist to rule it in, or out. They know what to look for and they know to do additional tests, like a CINE MRI. But again, they also need to know what they are looking for, and not looking for.
I had an MRI that the radiologist report actually said my cerebellar tonsils were lower than normal. But any doctor who saw it said it was within normal limits, which it wasn’t. They just did not know the details of Chiari. 8 years later, and numerous doctors, I had gone to a new-for-me neurologist who knew what it was, and saw it right away looking at the MRI with the room lights, no fancy measuring to see if it was a problem.
Within a year I had consulted several Chiari specialist neurosurgeons, and had surgery. I am now hugely improved.
I had daily migraines, difficulty balancing, ear problems, dizzy, undiagnosable head and neck pain … to name a few. I suffered over 40 years before a correct diagnosis, and believe me, I had seen a LOT of doctors. Since I had trouble since childhood, I had developed coping mechanisms, like walking close to a wall so I could run my hand along it keeping my balance, not playing sports that a ball would come at me, napping, etc.
Chiari is often misdiagnosed as MS or meniere’s. Then when the condition does not respond to treatment, they find out it was not that.
Please, please, please, see a Chiari specialist to rule this out, for sure. As you know, just seeing a neurosurgeon is not a commitment to get surgery, it is a commitment to get the best possible, well informed information. You can write me off list, I can recommend several good doctors.
Ouch, double post, sorry. The first one did not post until after the second ont. Sorry.
I hope they find out what’s wrong with you soon and fix it. You’re in my prayers.
Get better, Holly. I’m glad you have so many people to help you out.
BTW, I’m going to be experiencing the MRI thing myself, for the first time in my life. My doctor has asked to have my head imaged, to rule out the more serious possible causes of these nasty headaches I’ve been getting. Probably, it’s stress. We’re also experimenting with lifestyle changes and a different hypertension medication. Modern medicine can be kewl.
Feel better, Holly! We all miss you.
Just another thought, mostly since 1) the symptoms vary, and the ones you’ve mentioned are on the list of potential ones, 2)it’s often misdiagnosed or takes a very long time to diagnose, 3) It’s generally diagnosed by ruling everything else out first and finding nothing, and 4) I speak from personal experience when I say it’s no fun to deal with, I’ll add intracranial hypertension to the list… the most hideous headaches I’ve ever experienced (mine were far worse then previous true migraines), almost constant dizzyness, general miserableness and exhaustion. http://www.ihrfoundation.org/
And (((hugs)))… just because.
The potential for these things to drag on is the worst part of them. With those big uglies out of the way, at least you can narrow it down to smaller issues that can be dealt with. We’re hoping and praying for you and you have our support and admiration for your courage and tenacity in the face of the odds.
Thanks for the good wishes. I’ll be glad to find out what’s going on. I feel like someone unplugged me–I have to make an effort to want to move, to want to sit up, to want to get out of bed. Even when I’ve been sick before, I’ve been lying in bed working or sitting on the couch working, because working was fun and exciting.
Right now, with the constant vertigo and the near-constant headaches, everything I love is more effort than I have energy for.
I’m tired of this.
Thinking of you Holly. Take it easy, then take it easier, and then have a rest. It’ll all get done in its own good time :0)
I’m glad about what it isn’t. Have they tested your blood? (Since this is the most obvious thing to test, I’m sure they did. I just thought I’d mention it because I was diagnosed with iron-deficiency and hypothyroidism recently and I felt just the way you described.)
I very much hope that you will get better soon.
GET BETTER!!! All your fans love you and know you are a soilder.
I know you’ll feel better soon.
Good luck, Holly. You’ll be in my thoughts and I hope you’ll figure out what’s wrong soon so you’ll be on your way to feeling better.
Hugs! I’m so glad it’s not the big two, but I hope they figure out what it is soon. There’s little that’s more frustrating than not knowing.
Best wishes to you!
My fingers are crossed for you and my thoughts go to you so often.
Will continue to hold you in my thoughts.
PS I assume you’ve been checked for menieire’s syndrome
I went to the science site and left a comment. Possible minor circulatory issue? My mother past away from an aneurysm of the main aorta that runs down your back. She was having migraines and aches it was never caught. You have to have an x-ray from your back not you front. Just an idea. I believe from years of smoking bad diet and a horrible car wreck may have weakened it. She could have been saved, but wasn’t.
I was dismayed to hear of your medical difficulties. I know how distressing symptoms can be when no diagnosis comes forth. I went through a period many years ago when my entire body shut down.
I was at work, felt my knees buckle, and down I went. I couldn’t respond when anyone talked to me. I could hear them, see them, feel their ministrations but couldn’t communicate, move, scream, anything. I remained that way for three days. All I could do was allow tears to flow. Weeks of intense medical diagnostics ensued upon my being released from the hospital.
Of course, this was before MRI’s or any of the other such testing techniques. In the end, no reason was found for the episode. It was decided that for some unknown reason, the connection between motor function and stimulus had short-circuited for a while. Then they told my folks that it was probably a psychological disorder and to take me to a shrink. Fortunately, my family felt that was bunk. I still have occasional bouts–though not as severe–involving one limb at a time that will suddenly–between eye-blinks–cease to be attached to my body. The upshot of all this is that nothing has ever be found. It’s a mystery.
You may find the same thing happening in your case, though with today’s medical technology you may fair better. I do hope they discover the true problem for you. Not knowing is far worse than dealing with the situation handed to you.
In the meantime, you will remain in my thoughts and prayers.
I agree with your father, btw. I used to teach and couldn’t take it anymore. Too much buracracy, too much wrangling and experimenting on teaching methods and less on really teaching the child. Dumbing down has been going on for over thirty years. And it’s niot just the sciences that are suffering. The language arts, music, artistic expression, all of it has been sliding in a rapid spiral into oblivion. Personally, if schools put as much enthusiasm and money into teaching as they do for sports, the disparity might not remain as formitable. I will drop by his site and see what’s happening there.
I’m sorry to be so long-winded today. I’ll go now. Take care and God bless.
Your story reminds me of this interview I listened to on my way to work. Only I can’t remember the name of the book or author. I don’t know if you ever saw the movie Awakenings but the author did research on the disease behind it… called: http://en.wikipedia.org/wiki/Encephalitis_lethargica
I can’t help but feel like it sounds so familiar to what the author was talking about…
i found it… Asleep: The Forgotten Epidemic that Remains One of Medicine’s Greatest Mysteries [Hardcover]
Molly Caldwell Crosby
Hi Holly, I am relieved for you, knowing what you DON’T have.
I know you are probably getting inundated with medical advice, but I wouldn’t feel right not passing on to you something that happened to my husband recently. He was dizzy to the point he could barely walk. I decided we needed to go directly to a specialist and I chose an eye/ear/nose/throat specialist. It seemed like a great starting point.
The doctor asked him some questions, checked his eyes and then performed the Eppeling maneouver.
It turns out, tiny crystals in his inner ear had floated free of their anchor points. My husband was suffering from positional vertigo- his head thought he was in one position, while his eyes were seeing it a different way. Half an hour later, we walked out of the doctor’s office with my husband swearing he felt as if a miracle had occured- and he’s an atheist! 🙂
I had to pass that on to you, just in case. It’s most likely nothing like what you are going through, yet I couldn’t live with myself if I didn’t share it with you and then find out later, it might be the problem 🙂
I hope all works out well for you. If anyone deserves good news and a good life it is you.
Thanks for the update. Yes, MRI’s are VERY interesting to see (I’ve seen some, as well as X-Rays and CAT scans. In fact, one series was done of my head, one time, and they couldn’t find anything. My WIFE could have told them that).
RE: Your father-in-law. Read, and (although I was never a biology major) commented on. I support his endeavor.
I was so sorry to hear of your medical problems. I have been involved in medical and personal problems of my own and haven’t been by here much. You and your family are now in my thoughts and prayers. You will be healthy again! You will be writing again! You will be helping all of us as you always do! I believe in the best for you.