Apt. today

I had my follow up apt. with my Neurologist today and we went over my MRI and he is referring me to a NS. But his nurse said it will be awhile before they make an appointment because all of my records still have to be dictated before they can be faxed to the NS and they are "really behind on dictation" so it could be weeks before they even request an appointment. In the meantime, I had to sign an acknowledgment stating that I cannot drive until further notice due to a risk of seizures. My MRI/MRA found an angioma that is he said was stable and I was wondering if anyone here has any seizure related problems or driving restrictions due to CM1 or if this is related to the angioma. My Dr. was sort of vague and kept on saying that he wanted me to speak to the NS for a second opinion. So I am patiently, yet anxiously waiting to see the NS. :)
-Nicole

[selmaS]

Hi Nicole....I actually am not allowed to drive either.....not bcuz of seizures tho...I had drop attacks and have cervical stinosis that is causing a CSF blockage which is one contributor to the drop attacks.BTW- I am not driving for 2 yrs and going nutz....lol....

I know we have had several members with seizure issues ...I hope they post a comment on how they r doing.

We all have to be patient with this condition and allow our bodies to tell us when we r ready to do many of the things we have to refrain from doing until  we r better.

Hang in there : )

"selma"

[nmj1973]

2 years! I haven't been able to drive for a month now, so I can't imagine how you must feel after 2 years! I keep joking that the worst part is having to take my hubby with me to the grocery store now :) The upside is that I am doing more walking and I could use the exercise!
Have a great Tuesday :)
-Nicole

[shanmomof3]

Hi Nicole! Sorry you will have to wait so long to see a NS but at least your moving in the right direction. I dont drive either, well i will drive to church but its only 5 miles and i live in the country so there's not a lot of traffic. The reason i quit driving was because of what i call "zone outs" its almost like a black out except i'm still awake but dont remember anything. It happened once while i was driving and scared my kids and me. So i dont drive and the dr agreed with me. It stinks but this too shall pass. Hang in there! Blessings ~ Shannon

[nmj1973]

I live out in the country too and one downside to not driving is that my little one can't go to preschool anymore because I can't drive her there (it's about 10 miles away) and they won't let preschoolers on the bus. My older kids do ride the bus and the preschool teacher is sending lessons home with them, so that is a blessing. We have had a lot of church members reach out to us and I am amazed at how supportive and generous these people are....we are new to the area and haven't been going to this church for very long and they have treated me like family. A reminder that there is still good in the world despite all of the negative that seems to be in the news these days.
Hope you are having a good day!
-Nicole

[selmaS]

HI Nicole...I am sorry ur little one is missing out on preschool  and trust me I understand how frustrating this can be....but, not driving is the best way to go especially knowing that we can have these "drop attacks" or  "zone outs" like Shannon likes to call hers...but a true drop attack u r aware of what is going on, u just can respond...u do not want to be behind the wheel with ur little on e in the car when that happens....

I am surprised u still have it in u to go to the store...it was one of the first things I had to stop....but glad u see it as ur way to get exercise : )

U r truly blessed to have a supportive community surrounding u......and it is so good to hear there r still good people out there : )

"selma"

[*Stormy*]

First of all...if it's serious enough that you are not driving..you think they could up your case a little on the dictation wait list!!  Sorry, but things like that seem ridiculous when you really need to get a referral!!!

I can empathize with the driving too...since surgery I have been a little more confident with driving but I still don't drive at night or for long distances. I have 3 kids..so thank goodness for the school bus!! Luckily, where I live, I am close enough to get most of the necessities. I have to live by strict rules..like it I have to drive later in the day, I have to make sure I have a nap..

I really hope the wheels get in motion quickly for you!
Carolyn

[nmj1973]

I am so glad that I am still able to go shopping, or we would probably end up with nothing but hot dogs, bacon, and cheese dip to eat! :)
Seriously though, my hubby is so great and I just feel awful because not only does he work long hours including being on-call every other week, but now he has the responsibility of running all of the errands for me, plus worrying about me and this diagnosis. That's why I try to keep all of this as light as possible by joking around with him because I know we are both nervous about what lies ahead. There is so much more than just the symptoms/diagnosis: extra financial burdens, transportation, child care, etc. It's nice to have this group to be able to share with because you all know what CM involves, and I have received so much good advice.
-Nicole

[nmj1973]

I kinda thought that too....I wanted to say: "why don't you just give me the papers, and I'll type them up real quick and we can get this ball rolling!!!" But then, I saw his handwriting and I realized why they were so far behind- it would have taken a week to decipher that chicken scratch!
Hope you are having a good Wednesday!
-Nicole

[*Stormy*]

LMAO...I can see at least you have a good sense of humor about the whole thing!! Yo should have just offered anyway to get the point across. I just don't get it..you know if they would just walk a mile in your shoes I'm sure that they wouldn't put up with waiting!!

I was reading what you wrote to Selma..and I understand your feelings..

My DH is self employed and works 7 days a week sometimes and when I got really bad b4 surgery..I felt so guilty having him have to take up the slack with the house chores and 3 kids..What i didn't realize is that I hadn't been giving him enough credit, a lot of things he enjoyed doing and it actually made him more involved with the kids!! He became a Scout leader and goes mountain biking with my older son...none of this he would have realized he liked doing b/c I never would ask him to take the kids to any of those things!! He now participates in parent/teacher interviews, functions at the school ect...all b/c I can't drive there on my own. So..I find it was kind of a blessing in disguise..I was doing too much b4 and not involving him enough...of course we both would never have wanted to deal with this given the choice..but it did open my eyes a little.. So what I am saying..is sometimes you do find a little good when things go badly..
Take care!
Carolyn

[selmaS]

hmmmmmmm...well, at least having him along with u  he will learn what to get...lol  : )

I hope at some point u can rely on him a little more to do the shopping....lifting can actually aggravate ur chiari symptoms so do be careful.

Well I am right there with u , I understand that we can feel guilt and many other feelings bcuz of our inability to work, and help financially...and bills....that too is a tough one....

But we do have to be aware of out limitations and not over do bcuz of our need to lighten the burden or relieve our guilt.....I have struggled with this and still do.....it isn't easy for me to ask for a ride if I need or want to go somewhere....I was able to handle all of it myself and did for many yrs...even my medical bills...I used to pay them myself...now I can't.

This condition affects us more that just our immediate issues like symptoms...but it is something that affects who we r or were...but, there is so much we can still do, just in a different and more aware way : )

"selma"

[shanmomof3]

that guilt and havin to ask other people to do stuff for me has been the hardest thing to deal with for me! Oh selma, the reason i call my "episodes" zone-outs is because with a drop attack you are aware so your mind is still workin but not your body. Mine are the opposite my body is still functioning but its like my brain shuts off, i have no memory of it.

[nmj1973]

Good news! My NL's nurse called today and said they are pushing my chart through and that they should be calling me no later than the end of next week with an appointment for the NS!

Shannon- I have something kinda similar, but it mostly happens when I am talking....I will be mid-sentence and then my mind goes completely blank and I can't do anything but just sit there and wait, and then my mind sort of jolts back to life and I can start talking again. I am fully aware of what is happening, and I usually remember what I was talking about. It only lasts a few seconds, and happens a couple times a day. Does this happen to anyone too?

Selma- thank you for letting me know about lifting. My NL gave me a list of things not to do, but he didn't mention lifting; but that makes sense not to put stress and strain on my neck by lifting-which I have been doing a lot of lately- especially with laundry, etc.

Carolyn- I had someone from church call and offer to bring us dinners, and I told her that I appreciated it, but with my hubby and older daughter, we had it covered and I didn't want to take away from others who might need it more than us. Then she told me to remember that it's a blessing to receive, but is also a blessing for those that are giving. I never thought of it that way! So, it's going to take me awhile, but I'm trying to let go of some control and rely on others...... wish me luck! lol

[*Stormy*]

Yea!!!! I'm so glad...that dictation thing was ridiculous...I'm glad they decided to see the light!

I know exactly what you mean...I had ppl bringing over food after the surgery and I felt kind of guilty...plus I had some good friends collect a lot of money to help pay for my MRI and I felt bad taking that too..
Then I realized..that is EXACTLY what I would do for someone else if they were in my situation and it would give me a really good feeling that it helped someone else..so I realized that you have to take the help and just enjoy it putting those feelings of guilt aside. Once I did that, it was amazing how much those meals helped...so now I vow to pay it forward...
The best way to let go of some control and rely on others is to do it while you need to and make a promise to yourself that when you start to get better (and I have faith you will) that you will continue the chain of generosity...
Take care of yourself and please keep making your life easier..it will really help you feel better now and if surgery is an option, it will help your recovery immensley!!
Let us know how it goes!
Carolyn