Just a Headache...

Soooo, my latest round of medical tests did not exactly go as planned. What was scheduled to be a lumbar puncture last Monday, turned into 2 punctures ( a total of 10 war wounds!) and a visit back to the ER on Wednesday for the absolute worst headache EVER. I really appreciated how everyone kept saying "Well, since you are just here for a headache..." They were totally clueless.

The good news was no signs of cancer or MS from the spinal fluid that was collected and tested. Now we wait for my rheumatology appointment next week and hope we get answers and a treatment plan then.

Staycation Complete with a Fanny Pack

I've been a bad blogger this month...but an awesome Mom! This is my month off from work for the summer, so I have been dedicating all of my time to Elise and creating memories. 

We lost a few days at the beginning of the month when my neurologist ordered a prolonged EEG that I had to wear for 3 days at home. We are still trying to get to the bottom of my headaches and smoke smell, and have unfortunately discovered what appears to be some auto immune issues in all of our testing. The good news is that the EEG revealed no evidence of seizures....well, that is the second set of good news, the first is that I don't have electrodes glued to my head anymore and I'm not toting around a fanny pack of wires!

And now for a confession, the fanny pack lasted less than a day...it was so annoying that I ended up carrying the monitor around in my bra...sorry to the technician who had to take back my bra sweat covered monitor.

The Smoke Smell? Yep, It's Still There...

When last we talked about my crazy health issues, I was frustrated with my neurologist, taking EVIL Topamax, and still experiencing almost daily headaches and smoke smells.

Fast forward 2 1/2 months and my appointment with a neurologist that specializes in headaches finally arrived. There are only 2 of these neurologists serving our area so the wait was crazy long! She is awesome! She spent over an hour with us listening to everything that has been happening and asking all sorts of questions to help get to the cause of the smell and headaches.

I'm stepping off on the Topamax and starting a different daily medication called Inderal. She completed some lab work and has ordered an extended EEG, an MRI to specifically check the veins and blood flow in the brain, a sleep study, and a visit to an opthamologist. And oh yeah, she said to stop googling symptoms...she clearly has me figured out. So no real concrete answers yet, but definitely taking steps in the right direction. We shall see.....

I Still Smell Smoke, I Can't Feel My Feet, And Soda Has No Fizz...

So, to catch us up to where we left off...3 years ago I started smelling smoke, I finally found a Dr. who dug a little deeper to find answers and a tumor, and then went on a roller coaster ride to remove the tumor, only to  conclude that while it needed to come out, it had nothing to do with the smoke smell.

Two weeks before Christmas, I went to see a neurologist, whose best guess was that some type of headache could be causing the smell. She scheduled an EEG to rule out seizures, and prescribed Topamax (an anti-seizure/migraine medication) daily to see if that helped any. The EEG showed some slowing on the left side of my brain, but they can't pinpoint what might be causing that, no evidence of seizures though.

I started the Topamax, gradually working up to the full dosage as she prescribed and I have never felt worse. This medication is EVIL! I can't sleep, my hair is falling out, my hands and feet tingle like they are asleep about 50% of the time, and soda tastes flat. I had a follow up visit with her on Friday and left more frustrated than I was when I went in. She must be getting huge kickbacks to prescribe Topamax because she pretty much told me that it wasn't causing the majority of my side effects, that it was coincidental, just like the increase in smoke incidents and headaches since starting the drug were coincidental, too.

Fortunately, I saw my ENT right after her and he is still the most awesome Dr. I've ever had. He's not satisfied with her answers and looked up side effects right there in his office to confirm that I am on track and the medication is indeed responsible. I think that even though we knew it was a long shot, he was hoping that when he removed the tumor, the smoke smell and headaches would go away. It really is his mission to see me well. He is researching my condition (phantosmia) and looking for answers.

So that is where we are today. I'll keep you updated.

Where I've Been...

So, this little blog of mine has been neglected, but I had good reason.

I had surgery to remove the tumor on my sinuses on October 23rd. We had been cautioned that a CSF (Cerebrospinal fluid) leak was a strong possibility because of the location of the tumor, so my Dr. was pleasantly surprised when there was none.....until I had the most excruciating headache 4 days later and a small trickle of fluid from my nose. The next day's follow-up visit (where they vacuumed packing out of my nose  - I do not recommend having that done!) turned into scheduling surgery for the next day, just 1 week removed from the first surgery, to insert a lumbar drain and repair the leak.

They were unable to get the lumbar drain in place, which would have allowed them to inject a dye that would have pinpointed the leak, so they patched as best as they could and a 2nd surgery and 1 night in the hospital later, they sent me home. I think that I was there a total of 4 hours when fluid started pouring out of my nose. We scrambled to get someone to take care of Elise and make sure that she still got to go trick or treating, packed a bag, and headed back to the hospital.
 

So I spent Halloween evening having an X-ray guided lumbar drain inserted. I remained in the hospital for the next 6 days, where every hour on the hour they would drain 10cc of spinal fluid in an effort to help the leak repair itself. They eventually injected dye through the drain to see if anything would leak out, turned off the drain, and after a week that included 4 IV's (they kept blowing!) and a million cherry ices, pronounced me fit to go home.
 

That was 2 weeks ago today. The first week home was rough with some wicked headaches, the worst of my life. I'm still healing and won't go for an official follow-up visit until next week, but each day the headaches are less, so I think full recovery is on the horizon.
 

It has been a rollercoaster, but we absolutely love my Dr., who has gone above and beyond for us. And we have been so blessed with friends and family who stepped in and made sure that Elise was cared for and that life was as normal as possible for her. The Rev might have a career in nursing and was a great caregiver through the whole ordeal. Slowly but surely, things are getting back to normal.
 

I'm happy to be on the mend and back to blogging! I've missed you!
 

Is It All In My Head? Yes....and No

So, to catch you up to speed...on and off for the last 3 years, I have smelled smoke, but it's not really there. I've had more sinus infections than you can count and now 2 ear infections in less than 3 months. Finally a Dr. listened to me and decided this is not normal and maybe there is something real going on, it's not just all in my head.

I mentioned to you last Wednesday that she had me scheduled for a CT scan to see what we could find. They called me Thursday with the results and sure enough, I have a tumor on my sinuses. They believe based on the shape that it is benign, but we will go tomorrow to an ENT to discuss options and next steps.

My first thought was relief that they found something and I am not crazy - there have been many times in the last few years that the smell has really made me feel like I was going nuts. Of course, my second thought, was "Happy 10th Anniversary, you have a tumor!" (Also, is it possible to say tumor in a non-Arnold Schwarzenegger accent?)

My head has hurt constantly for the last 3 weeks and the pressure in my ears is insane, so I am really looking for relief and healing. We are going to some of the best doctors available and I feel confident that they will come up with the right plan for me, but if you are inclined to pray, we would certainly appreciate it. I'll keep you updated.

Smoking or Non-Smoking Section?

That is the Rev's daily question for the last week, ever since I developed the most bizarre medical thing I have ever heard of. For the past 11 days, I have been smelling cigarette smoke where there is none. I'm not just talking about a whiff here, I mean a strong, constant smoke smell, like you would smell if someone were holding a lit cigarette under your nose, 24/7. My eyes water like I am stuck in a smoke filled room and my throat is all scratchy.

Of course, Dr. Rev googled it and said get to the Dr. since the causes can range from a sinus infection to Alzheimer's to schizophrenia (he was leaning toward the latter and I am starting to feel a little crazy, at this point!). Nice. The Dr. did give me an antibiotic, just in case I had any sort of sinus infection, with instructions to come back if the smell persisted after I finished the meds. Unfortunately, the meds are finished and the smell is there, still as strong as ever. I know a Z pack keeps working for 5 days after you finish taking it, so I am holding out hope that maybe by then, the smell will have gone away.

The condition as far as I can tell from everything that I have read is called phantosmia, or olfactory hallucinations. Basically, some type of brain injury, even one that you may be unaware of, like a stroke or seizure, tricks the brain into thinking that it smells something that is not there. Some people are able to use nasal sprays to trick their system, while others have to have their sniffer snipped, basically unable to smell anything!

Anybody out there ever heard of this or know anybody who has dealt with it?