Incidental Finding

I love those words! I took my films (both MRIs and the CTA) to a new neurosurgeon in Libertyville. He was a day late in calling back, but wonderful when he did! He said that it's likely that what was found on the scans is an enlarged blood vessel. Since it's tiny, I have no symptoms to associate with it, and it hasn't changed, he feels it's an incidental finding and I shouldn't worry about it.

I asked directly about getting pregnant, and he said I should forget anything was ever found. I feel like a huge weight has been lifted off my shoulders now. I never imagined being told this. What a rocky ride the past 8 months have been. Hopefully all will continue to be fine and I won't have to see any of these doctors again!

Finally heard back

So I finally heard back from Dr Chandler's office. It took multiple emails and calling yesterday and today. I spoke with a nurse who confirmed that I am "stable." She said that another in 6-9 months is recommended. I told her that we were planning to have another child. She then informed me that I would need an MRI before delivery to ensure that I am able to delivery vaginally.

This is a little nerve-wrecking. My first delivery was without complications and I only pushed 3 times. I have no interest in having a C-section, although I know that there's always a risk with every pregnancy of needing one. My husband's reaction was to wonder if we really want to have another child. I've always envisioned having 2 children. This is a very difficult reality to be facing right now. We had planned to try during my next cycle, which would mean soon, like 10 days. I have many different emotions running though my head right now. I've always wanted 2 children. From my research, there is no increased risk of hemhorrage during pregnancy. So it's just the delivery part that they worry about. I kind of think that my risk would be minimal since the delivery went so fast.

This may take a couple days to soak in...

confused

I saw Dr Hain today, for basically my last appointment. I haven't been dizzy lately, except that one time in CA. Since I was exhausted and stressed, that gets the blame. Dr Hain noted that my nystagmus seems to have spontaneously disappeared. I may stop taking some of the supplements as I finish bottles to see if the dizziness comes back.

I took my new MRI with to drop off at Dr Chandler's office. I showed it to Dr Hain and now he has me a little worried. The MRI report contradicts the CTA. The MRI states that the spot noticed has iron in it and is an AVM. The old CTA states that it is a meningioma that is calcified. According to Dr Hain, a meningioma does not have iron associated with it. I dropped the CD off on our way home. It contains the old and new MRIs and the old CTA. I emailed Dr Chandler and asked him to contact me when he gets a chance to review everything. Hopefully that will happen soon.

On top of everything, I'm 2 days late. Hopefully it's just the stress of the CA trip that screwed my body up. Otherwise, I had an MRI while just barely pregnant. Time will tell I guess.

No Change

I picked up the CD to send to Dr Chandler today. I couldn't get an appointment with him in the near future, so I'm just mailing the scan. He should have already received the report. I got copies of the reports as well, and it said no change appears. So that's very good news. They put the old MRI and CTA with the new MRI all on one CD. So he should have a good picture of what we're dealing with. Hopefully his findings will be the same.

While in CA visiting my sister, I had a very bad dizzy spell. For the first time, it felt like the room was spinning. No idea why it happened or why it went away. But it was worse than what I've experienced so far. My only thought is that I was exhausted due to travelling. I see Dr Hain this Thursday, so we will discuss this then. I don't think there's a whole lot to do at this point though, since I'm not experiencing anything with any sort of regularity any more.

good days

So those bad days I wrote about, only 3 of them. I've been feeling fine lately. I even have had the energy to start exercising again - ran 2x and lifted 2x this week already, will run again tomorrow. So who knows why this is all happening, but at least it seems to be over. Although I'm sure I'm jinxing myself by writing about it.

They save everything happens for a reason - I gave my doctor's name to 2 people that I talked to only because I was dizzy. So maybe that's the reason. Although God's sense of humor would not be very funny to me if his idea of a good time is making me dizzy for 5+ months so that I could get 2 other people help. Part of me wonder though if we'll find out that the brain tumor is an issue when I get the follow up MRI in June.

Only time will tell. At least for now I'm just enjoying time with Carolyn outside, exercising, and working. 4 more weeks until Jon is done with work for the summer too. YAY!

dizziness returns

Well, it was a good run while it lasted. But yesterday, the dizziness returned. We'll see how long it lasts to determine if it seems to be cycle related. The really bad part is that the actual dizziness seems to be getting worse. I'm starting to feel less like I'm floating and more like I'm unsteady. I don't know whether the change is good or bad is the sense of diagnosis. But this dizziness is more disruptive to my life. And in reality, this kind of scares me. How do I know how this will continue to change? What if it rapidly changes and something happens to me while I'm home with Carolyn one day? All I can hope is that this is somehow cycle related, which would mean I would only have one more time period like this before Jon finishes for the school year. This is starting to get a little scary again though. Hopefully this will pass soon. Worst case, I anticipate another 10 days or so.

Hopefully playing soccer tomorrow will help me. Or at a minimum, being able to play with Carolyn and Jon outside tomorrow should put me in a better mood. I have to focus on the positive as this dizziness tears apart my world again. Here's to hoping we truly find the answer soon.

dizzy free

So I have been dizzy free now for 2 full weeks. And today is day 1 of a new cycle and I feel fine. I should qualify a little, "fine" to me is not being overpowered by the dizziness. In this state, I have no desire to take any meds to change how I feel.

So will this be it? Did my body just figure things out on its own? Are the supplements I'm taking have any effect? Hopefully I can answer these questions over the next few weeks. I'm thinking that I will wait for 2 weeks, to see if any dizziness reappears in the first 2 weeks of this cycle. If it does not, then I think I might try stopping some of the supplements. I think I would drop CoQ10, then Vit B, and then magnesium, leaving a month or so in between removing each one. The doctor said it would take 10-12 weeks for these to start working, so I don't they're doing anything yet.

This could be a sign of normal life to come. Oh, and for anyone that's reading and wondering, I'm definitely not pregnant.

Migraine

So I had a follow up today. I waited 40 minutes without them saying anything. I went to ask how much longer and they told me I didn't have an appointment. I have an appt card with today and 1PM written on it, someone never put it in. I made the appt while there last time, quite frustrating. They did get me in pretty much right away at that point.
Dr Hain said that while they are finding some small abnormalities on the testing, it is puzzling because I am not responding to any of the treatments. So at this point, he's decided it must be migraine related. He gave me scripts for two migraine meds and I am to call the lactation consultant to find out if either are safe. I plan to call tomorrow, since we didn't get home until 4:30. I am not very optimistic about either being acceptable. So then I have 2 choices.
I can choose to stop breastfeeding, which is likely to take some time to wean. When I'm completely done I could then try the meds, which take about a month to see if they work.
Or I can choose to not take the meds and basically do nothing but continuing taking these supplements.
I'm really torn as to what I will decide to do. Neither me or Carolyn is really ready to end breastfeeding. But I hate living with this dizziness. I have to go back and see my OBGYN for my yearly appt at the end of May. I'm considering going back a little sooner and maybe asking him if it's possible that this is hormone/cycle related. My really bad days started on the first day of my period and lasted 2 weeks, quite possibly until ovulation. So if that pattern repeats itself and I have okay days from now until my next period, I'll be even more convinced that it is hormone/cycle related.
This is all quite frustrating. It's been about 5 months now that I've been living with this, and no one has any real answers. I'm still hoping that this will all just go away eventually.

Bad weeks

These weeks since I was at the doctor have been bad. The dizziness almost seems neverending. It's starting to happen now when I'm standing, so that's very annoying. Not quite bad enough that I truly feel unsteady, but still quite nervewrecking. It's almost time to start a new week and I'm exhausted. Carolyn is sleeping at night, so I can't blame that. I woke up at 4:30 this morning and had trouble getting back to sleep.

The dizziness is causing problems with my concentration. I need almost complete silence in order to focus on something. I used to always have background noise, now it causes problems. That makes everything difficult since it's hard to find quiet places here when Carolyn is awake. Not much I can do about it though.

Hopefully I'll get some answers Thursday, because this is getting ridiculous. It's all so frustrating.

Bad week

So I decided to start keeping track of my dizziness in terms of good days/bad days. I just started marking in a excel file whether it was good/bad. In the past 8 days, I've had one good day. My definition of a good day is that I don't really notice the dizziness, so maybe a spell every 3-4 hours. I was hoping that I could discover that it's hormone related. Well, if it is, I think I remember reading that the 2 weeks after the first day of your period are the best. That would mean that this past week should have been a good week.

This is all starting to depress me, because it is effecting my daily life so much. I can't seem to go more than 2 hours without a dizzy spell, and they're lasting 2 minutes or so again. It's been nearly 5 months since this first started happening. I thought it was getting better, now it seems to be getting worse again. I just don't know what to do anymore. There has to be something wrong with something in my body. Yet nobody seems to be able to figure out what that is and make this all stop. I haven't heard any results from the last test, which means they likely didn't find anything. I can't handle this anymore, I just want it to go away. I need a vacation from this dizziness! I can handle taking care of Carolyn, working my 3 jobs, but I can't handle this dizziness so frequently. I was going to lift this afternoon, but I'm too tired and run down. Maybe next week. I can't wait until next Thursday, when we get to again discuss that we don't know what's wrong. Why is this so hard?

VNG

So I had the VNG today. I had to wait 30 minutes after my scheduled appt, which drove me a little nuts because I was nervous about the test. It wasn't as bad as I had anticipated, but made me extremely dizzy. I actually got dizzy in the parking garage and it didn't go away until after we started the test. I had to follow moving dots in various patterns. And then he put cold, then hot water in my ear. That felt quite strange, but wasn't horrible. The hardest part was that they were tracking my eye movements, so I had to keep my eyes open as much as possible. And since I naturally blink a lot, that was difficult.

I was a little disappointed that the guy who did the test said everything looked normal on my way out. Is it bad that I was hoping this would should something is definitely wrong? But he said he would do the full analysis and let the doctor know. If it shows anything, he should be calling me. At the latest, I have a follow up 4/16. Maybe I'll get lucky and the supplements will start working. Although it's somewhat of an expensive solution.

And now, we wait again...

More tests ordered

So nothing really new from today. I reported that the trileptal, migraine diet, and exercises were a FAIL. We discussed the one migraine I found that is okayed for breastfeeding - Imitrex. He commented that he wouldn't recommend it while breastfeeding, but it also wouldn't serve my purpose. There are apparently 2 types of migraine meds - one blocks them, the other reacts to them. There are more technical terms, but I'm exhausted and can't remember them. Imitrex is a reactor, and since the dizziness is happening every hour on bad days, it won't help much.

So we have decided on 2 courses of action for now.

1) On Thursday I will return for another test. Due to the symmetry, despite the high amplitude on the VEMPs, they are ruling out a dehiscience (sp?). So I will get a ENG/VNG on Thursday. It sounds like they will squirt water in my ear and see how my eyes react. I still have the nystagmus as recorded last time, so there is a strong suspicion that there really is an issue with my inner ear and that it isn't hormonal/migraine related.

2) Start taking a cocktail of supplements - magnesium, riboflavin (b2), and coenzyme Q10. They are all found normally in the body, so it won't pose a risk to Carolyn and could potentially help. I found some information online that magnesium can actually have positive effects while breastfeeding by regulating milk production between ovulation and menstruation, so that could be helpful. He did say that this could take 10-12 weeks to produce results.

So the good news is that stopping breastfeeding wasn't brought up today. I will be willing to discuss it at my next appointment 4/16, since that is after Carolyn's 1st birthday. Although since she still nurses 7-8x/day, I'm not quite sure how it will work. I guess time will tell though. Still no answers, but at least we're moving forward a little. I reallly hope we get this sorted out before I hit the 6 month mark. Only 1.5 months left before I get there though. I've started a file to keep track of my truly bad days, maybe we can discover a pattern. Today was a bad day.

Scared

I have an appointment on Tuesday with Dr Hain and I'm scared. I'm not even totally sure what I'm scared about. There's a possibility I could be told there are ultimately 2 options - live with it or have surgery that risks deafness. But I couldn't really be told that Tuesday since I'm pretty sure they'd need to do another CT to be sure that bone wearing away is truly the issue.

I hate not knowing what is wrong with me. Every additional twitch/pain sets off warning signals in my brain, that maybe the doctors missed something the first time. Although my films have been looked at by 3 different qualified professionals. I don't think they ALL could have missed something huge. I worry that if they do the CT, they'll discover the meningioma is in fact growing and that we'll need to treat that.

I really need to try and not think about any of this today. I have plenty to do during naptimes - assessment, daily reading for my dad, clean up around here. But when Carolyn is awake, I can't seem to help my mind from wandering. After all, playing with an 11 month old is not exactly the most mind stimulating thing in the world. I'm also quite exhausted, despite Carolyn sleeping 7-5 last night. I just kept waking up throughout the night. I need to go enjoy my daughter and try not to focus on what might be. It doesn't help that my mom's birthday was 3/21 and I've been thinking about her a lot. I miss her and I wish she was around to help me through all of this. I can't wait for Jon to get home so we can be together tonight. Then I have 9 days with him for break. Too bad this appointment falls right in the middle.

Enough rambling, off to play with Carolyn.

Friday was bad

Friday was a horribly dizzy day. I felt dizzy practically all day. Multiple times when changing position I had to steady myself on the door frame/wall and would slightly black out. Much different from past dizziness issues. I also was quite dizzy just sitting on the couch. I can not think of any reason for this horrible day. But now I am really looking forward to seeing Dr Hain on 3/31. I have continued to feel fairly dizzy all weekend, although I was fine through my 1 hour soccer game Friday night. In fact, I'm dizzy as I type.

I am scared that this dizziness is in fact hormonal and that it will be discovered that something is screwed up in my body and I can't have another baby. I know that wouldn't be the end of the world. But we're talking about trying at the end of August. I truly want to just have a diagnosis. But I don't want that diagnosis to really impact my life. I also worry that I'm starting to get a little depressed about the dizziness. But there's not anything I could do to alleviate the depression since we can't get rid of the dizziness. Just over 2 weeks, then we'll have a new road to head down.

Inner Ear Test results

I thought the other letter told me everything. I received another letter today, with additional hearing test information. This is what the letter says:
"Your otoacoustice emissions and hearing were completely normal on both sides. Tympanometry revealed normal middle ar pressure. Vestibular evoked myogenic potential were normal on both sides with a total response of 1309 and a 4.4% right weakness. Although your vemp was normal, the amplitude of your response was quite high. Occasionally, this pattern is seen in persons with bilateral superior canal dehiscence."

I'm not quite sure what this means. The only treatment I can find online for this possible new diagnosis is surgery. I guess I will find out more when I go in for the next appt on 3/31. I've emailed my brother to see if he knows what this means. Hopkins comes up a lot on the searches, so he might know someone that knows what this is. We might have a direction to go in now!

It's back

So my dizziness had subsided a considerable amount. I was barely noticing it anymore in fact. And now, this past week or so it's come back full force. I got super dizzy last night lying in bed. I had a high pitched ringing as well. Very strange. I have been having a horrible time getting to sleep at night. I'm debating calling the doctor and getting in there sooner rather than later. I still hate to have Jon take a day off.
I'm wondering though if I'm just sick right now. I was stuffy last week, so perhaps this related. I'm just real dizzy, tired, and feel weak. Hopefully soccer will go well tonight and I'll be okay. I don't know what to do anymore. I just want to feel better.

Letter from Dr Hain

I received the letter from Dr Hain that the audiologist had mentioned I would receive last night. It's really fairly confusing and I'm not sure I understand 90% of it.
It starts with an "impression"
"Spells with a differential diagnosis of seizures in spite of the fact that the EEG is normal, a vesitbular disturbance such as a vesitbular neuritis or neuralgia or BPPV as suggested by exam, and migraine.
Right at the moment, I would suggest that we go through these possibilities one by one. Although your EEG was normal, EEGs are relatively insensitive to mild seizures, and I started you on Trileptal. If this medication is helpful, you will stop haveing spells.
With respect to the possibility of a vestibular problem, I started you on the exercises for BPPV. With respect to the possibility of migraine, we may eventually attempt migraine prophylaxis medication."
There is other information given regarding the hearing tests that were done. One line I don't quite understand, but will do further research about "A vestibular evoked myogenic potential test was done today and revealed a total amplitude of 1309, which is very high, and only 4.4% weakness."
In reference to the goggle test, "Under video Frenzel's goggles, there is a very slightly right-beating spontaneous nystagmus that is unchanged by hyperventilation. It continues to be seen during head positioning while upright and continues to be seen when the neck is vibrated. On positional testing, there is a slight up beating nystagmus on head left and continued right beating nystagmus on head right."
So I have some research to do. If anyone reading this has any ideas, let me know!

Dizziness continues

So I am still having dizziness. Some days are remarkably better than others and I only have 2-3 spells. But other days are still pretty bad and it's every 1-2 hours. I can't find a pattern to distinguish the good days from the bad. On the good days, I've learned to live with the 2-3 spells. But on the bad days (today) the dizziness can be overpowering. I wish we knew what was wrong and could fix it.

Details of Hearing Tests

I don't think I wrote about what hearing tests were done. So for those that are interested...
1) Checked pressure in both ears - some fancy machine
2) Typically hearing test - press a button if you hear the tone
3) Repeat words back said in either ear
4) Lay on table, played ticking noise in headphones, lifted head and turned away from noise, held for 1 minute

I don't really know what any of it is supposed to diagnose, but hopefully we'll hear results soon.

Seizure meds = FAIL

So I took the meds this weekend. Not only did my dizziness not go away, but I got massive headaches. I'm also wondering if Carolyn was affected a little as well, and that's the true reason for her sleep issues the last 2 nights. So I stopped taking them last night. My headaches today are much better. On the one hand, this means I'm not having seizures, which is great! On other, we still don't know what's wrong. Back to the drawing board!
Still remaining:
1) Migraines - I learned this week that one can have migraines without headaches. Interesting.
2) Hearing - still waiting on test results
3) Hormone issues - this did all seem to start when I got horrible cramps 2 weeks prior to my period in Nov. I don't know what to think.

And now to wait until March 31st to hear anything more. Unless Dr Hain calls like the audiologist said he would.

Migraine diet = fail

So I've been following this migraine diet for the week. The dizziness is not gone. Not sure how long I'm supposed to do this before determining it doesn't work.

I will likely start the anti-seizure meds tomorrow. I'm terrified to do so, but I know I must.

My ears have been bothering me the last couple days. Wishful thinking, or perhaps this doctor was on to something with investigating my hearing further.

I don't know anymore. I frustrated that it's been 7 weeks and I have no answers. And it's getting very annoying that I am STILL dizzy! It's been a little better lately, but still happens frequently. And it seems to be stronger lately.

Dizzy Doctor visit #1

Went to Dr Hain today downtown. Luckily, traffic wasn't too horrible. They were pretty close to on time as well, which was nice. Had my weight, height, and bp checked. My bp was pretty low - 98/62 - fairly normal for me.
First Dr Hain checked out my MRI and CTA scans. He confirmed a calcified meningioma. He actually suggested I may not need follow up scans due to the apparent extent of the calcification. He checked my balance - said it's excellent! Then did some basic neuro stuff - touch my nose with my eyes closed, checked reflexes, same as the immediate care doc and first neurologist I saw. Then he put some weird goggles on me to check my eyes. Apparently they jump around, and they're not supposed to. He also said my left ear is not as good as my right.
He then suggested 3 possible causes - seizures, migraines, or hearing problem. So we are investigating all three further.
1) Seizures. The EEG I had done showed nothing, and I told him that. I will have the script filled tomorrow and will do a 3 day trial. If it works, then we've found the problem. If not, we cross it off the list.
2) Migraines. He gave me a list of foods to cut out. Of the foods on the list, I eat chocolate, cheese, and lunch meat. I haven't had lunch meat for a while. I will cut out chocolate and cheese tomorrow.
3) Hearing. I did a bunch of tests at the office. Audiologist said everything looked normal. I will get the official results from Dr Hain in a week or so by phone and letter.

So now, we continue to wait some more. I am to return to Dr Hain in 2 months, I need to call tomorrow to make that appointment.