question about numbness

I have posted on here a few times regarding my daughter who has CM. Her herniation is 1 cm but it has always been long but skinny. Her symptoms have been getting worse over the last few months. The headaches and dizziness are coming on more with less activity to provoke it.
I have to say though she really scared me the other night.We had gone to a ball game and she was fine until the ride home. She got car sick. She was so sick with dizziness and a headache and then her arm started to get pins and needles and than her mouth. She said her gums felt numb. That was a new one. In fact the whole arm thing was new. Of course the pressure in her head got really bad.I almost took her to the ER but she would not have been able to take the ride.
I finally got her into my bed when she was able to put her back and she eventually fell asleep on me. I did not move for over an hour. I was afraid to wake her up.When she started to doze off she was getting some really weird twitches.
I called her specialist first thing yesterday morning and they told me to bring her in.I was so surprised that she got right in. I explained what happened and they wanted to see her right away.
SO she is scheduled for a new MRI on the 5th and a follow up on the 8th. It has been 2 years since her last MRI.
I did not even have to ask like I thought I was going to have to. In fact they are checking her flow also.
He feels that we may be talking surgery in the near future. He would have let things go but since she is getting worse he feels it may be time. If the headaches were not so frequent or getting so severe it could be put off. He is not sure though if the surgery will help much with the dizziness. We will have to wait and see how the test comes back.
Has anyone else ever experienced the numb gums?
The doctor is so nice. He tries to reassure me that what she has is not life threatening and I understand completely that it is life altering. He tried to make me feel better because I felt so helpless when she was so sick. He wants to get all her tests done as soon as possible to see what happened.
I have to say that I know what it feels like to be in pain and to have numbness because I have the DDD in my neck. I have 4 messed up discs in my neck and 2 in my low back, but if this is what all of you go through on a daily basis my heart goes out to all of you. I wish all of you could get relief. I do not (thank goodness) get headaches like that. I would not wish that on anyone.
Does anyone have any suggestions as to what works when it gets that bad. The doctor said to just give her the Tylenol or Motrin. He said that may help her better when they come on. It comes on so fast. He even suggested some caffeine. He said that  may help to relieve the headache. It is try and see thing to see  what helps her the most.
I am scared to think about the surgery and the pain after wards for her but at the same time I want her to have some kind of life. She is only 13 and as it is now she can not do too much. I am so worried every time she goes somewhere and I am not with her. I do not want her to get sick and I am not there to try and help her.
Thanks to all of you for letting me get this all out. My husband is nervous about it to. He has not seen her as sick as I have with him working and all. He got to see it himself the other night. Now he knows what I have told him the few times this has happened to her.
Take care.
Chadry

[selmaS]

Hi, I am so sorry to hear ur DD is getting worse. I did not have the numb gums, but my face got numb at times only on the left side.

Please keep us posted on her new MRI's.....I was surprised that she hasn't been monitored more closely by her drs. Most do check every 6 months to a yr depending on symptoms.

I will be keeping ur DD in my prayers
"selma"

[chadry]

Thanks Selma,
She has had a lot of testing within the last year for her dizziness and such. She went through a whole day of vestibular testing and everything came back normal. That is one of the reasons we have not had the new MRI yet.
This numbness thing just came on the other day. It sounds like what you are saying about your face. This was all one sided. Her doctor took this very seriously. She was getting due to go see him again and I was going to ask about a new MRI this time.She has grown a lot the last year but he does not think that has anything to do with it. He wants to see if the herniation has grown in any way or if her flow is being blocked.
Dr.Campbell was working with the nurses trying to get her in as soon as possible on a day that he was there so that he could see us that day to go over the results but it turns out that most of the day appointments for MRI's are used for children that have to be sedated. I can understand that.Du Ponts has so many small children there that I am sure will not lay still for an MRI.
She seems to be back to herself again. We did the Motrin for a day and her leftover headache was better. Hopefully she will be OK today.
I took her for her back to school haircut yesterday and we decided to keep her hair longer in the back this time just in case she needs the surgery so that she would hair to come down and cover the back of her neck.
She was due to go back for her vestibular testing because she is in a study for children with dizziness and Chiari. They are trying to see if there is a difference in the children who get the surgery and the children who do not. He told us to wait on that because she may now be in a different category for the study. If she gets the surgery she goes back on a few more times than if she didn't get the surgery.
She told me and my husband the other day we are more nervous about the surgery than she is. She wants to get it done to see if she will feel better. We just know more about the complications. I am worried about the after surgery part. I am so worried about the pain after and if she will be better or worse. It is such a hard decision to make. If her doctor comes back to us and says OK she needs it now than I will do it. He has always been up front with us and has tried other things before rushing into it. He told us before he will only do the surgery if he feels the outcome will give the kids some relief from some of their symptoms, or of course if it is really bad and it has to be done.
Thank you again Selma for your reply. I feel better knowing someone else has this one sided thing going on. Not that I want you to feel bad. You know what I mean. I will keep you posted on her condition.
Chadry

[chiarigirl11]

hi, my names elle...and I know what your daughter is going through,,, im only 16 but i was diagnosed with chiari a year ago...i have such bad headaches and dizziness...its awful! ive been to many doctors and some say do the sugery and some say dont...of course my mom doest want the surgery for me...its only natural i guess for a mother not wanting there kid to be sick....i went to a heachache specialist a few weeks ago that said my chiari wasnt that bad....which was a lie..she asked me if i was crazy and if i was faking it! well that was the end of her lol...but my point is most doctors dont really understand it i guess. my mom is starting to believe that i need the surgery...i just got an mri of my csf flow and it wasnt really bad..but it wa bad...so im going to my first neurosurgeon that said i needed the surgery and we'll see what happens....and if your daughter says she needs the surgery then she most likey does...because i tell that to my mother all the time...my family is more scared of the surgery than i am. i wish the best to you and your daughter.

~~Elle~~

[chadry]

Hi Elle,
Thank you so much for your input. I have to let my daughter read this from you.
I hope that everything turns out alright for you at your next Dr. visit. I do not want anyone to have to live with this condition. It is so unpredictable. One minute you feel OK the next you don't.
AS far as some doctors go I always wonder how they ever got to be doctors. They just don't have a clue as to what is going on. I know my daughter tried some mild blood pressure medication there for awhile but it did not help. Her surgeon told us it probably will not do anything for her Chiari headaches anyway. He says that she has the classic Chiari headache.
Now school will be starting up again and it is a day to day or sometimes hour by hour thing.
My daughter is the same way. She wants to get the surgery done and over with.
I think you young kids are so brave. I know that we worry too much  but that just shows how much yous are loved.
Take care of yourself Elle.
Let me know how you are making out.
Chadry

[chiarigirl11]

your welcomee.....also keep me posted on your daughter