I just need some advice

[lilmiss1999]

I had an appt with NL today and I went over some recent things that have been added to the already long list. I have been having issues with arm and leg spasms. I get a dull ache down my arms and through my back and legs as well. No matter what I do I can't get comfortable. It is worse at night. I also have been having a big problem latley with insomnia and fatigue. Even though I am tired I cant fall asleep and wake up several times everynight. I just feel miserable all over. ..... I spend more nights on my couch instead of my own bed. Laying part on my side against the back of the couch seems to be the only comfortable way to sleep. It is soooo frustrating.

Anyhow ....... NL is concerned I might have a mild form of sleep apnea and RLS. I dont wake up gasping for air but she said that does not always happen. I will have a sleep study done in a couple days. I am not sure what to think now. I would have never thought about the sleep apnea. Even though she does not think Chiari is my problem...isn't that another symptom? Also could it be RLS or pressure being put on BS or nerves? I am so confused right now. I sent my records and scans to a Chiari NS but have not heard back yet. Any advise or input would be helpful. Thank you.

[lilmiss1999]

The sleep study went well. I had a hard time falling asleep and woke up several times trying to get confortable (all VERY normal) Should get all the final results next week but tech did tell me that I did not snore and my oxygen levels were fine. That is good.

Not sure what else they will be able to tell me. Maybe info on brain and muscle activity.

So what can I expect from here from my NL? Meds to help me sleep or help with muscle twitches? Not sure. Any ideas?

[jacmurphy]

Hi Jen
Thanks. Don't worry.. i'm not giving up. I'm sitting here making plans on my next move.
I'm in Ireland were we have the grand total of 10 Neurosurgeon for 4 million people. (The worst ration in the whole of Europe)
Good luck with your sleep study tonite. Please let me know how you get on.
I do hope you get the answers you need.
Jackie.

[lilmiss1999]

I am sorry the doctor has left you so frustrated. Hang in there. I have had 2 NL acknowledge my symptoms (headaches, tremors, dizziness, vertigo, visual disturbances, extreme fatigue, sensitivity to cold and light, recent loss of gag reflex, etc) And have acknowledged my 5 mm herniation! Yet they both say that Chiari is not causing my problems!

That is why I sent all my record to a Chiari Specialist for his review. I refuse to go on with life like this. If I have to make it get noticed myself then I will!

Do the same....another opinion and sending the information you already have to a true specialist.

Even though my current NL is sending me for the sleep study (tonight) she is still not connecting the dots. I hope to here soon from Dr. Ellenbogen in Seattle. They recieved everthing so now I wait a bit longer. Ive been waiting years so a couple more weeks is no big deal.

It seems to be the norm to have Chiari overlooked for quite sometime before finding someone to really take it seriously.
Get copies of medical records and Mri's. dont know where u live but there are several Chiari drs that will look at the info for free or a small fee. Start sending them out. There is also a list of drs on here recommended by others that may help with your search.

Keep me posted. I will always be here for a sounding board if u need one. I know others on here will help too.

Hang in there and keep me posted!

Jen

[jacmurphy]

I was so pleased when I got the appointment to see the NS. And now i just feel like crying.
He looked over the MRI scans and said that my son has a 6mm herniation that is insignificant. He said he is unwilling to acknowledge that his symptoms are Chiari related because the next step then would be for him to operate and he's not going to do that.
He didn't want to know his symptoms.. just told us symptoms my son doesn't have and they are the only symptoms of concern.
I'm feeling really down and frustrated now. I'll pick up tomorrow and start fighting again.. but today I feel like we've lost our last hope.
Oh.. I brought a couple of studies with me. Before I left I said these studies show that his symptoms are Chiari. His reply......I wouldn't take any notice of them. People do these papers just to get their names published.
Now I really am crying. lol

[*Stormy*]

lilmiss... I hear you loud and clear..I'm 34 and feel like in the span of two years I went from feeling like I was 25 to 75!!
I know what you  mean about feeling like your twitching..I had that for awhile and then my muscles actually did start to twitch. I now have constant twitches all over my body but especially focused on my legs..it's just a really weird annoyance I guess, but one I've got used to. Again, I think it all falls in the same category of hyperactive nerves. I think it is really good that your Dr is planning ahead like that and making sure everything is ok!!

Jackie...Just wanted to wish you luck tomorrow with the NS...I am praying for you that you find someone to help your son!!! Good for you, stand your ground and just start insisting. I had to do that with my old NL (way b4 dx) when I asked for an EMG, he told me that he didn't think I needed one and I asked him "can you be absolutely sure that this is not a muscle/nerve problem?" He couldn't guarantee it..so therefore I got the test. Do the same thing, make it very clear that if they don't do the test and it is found out later that he DOES have sleep apnea...it is on their heads for refusing the test. Again, I really wish you good luck :)

Carolyn

[lilmiss1999]

Sorry your son is having such a hard time. I understand sleeping most of the day away. The other day I was only awake for 4 hours during the day and for once also slept at night. I can onl go so long not sleeping well before I need o catch up.

Good luck at your appt. Hope you get the answers you need. You really need to push drs to make sure things are taken seriously.

I just went in for a followup and wanted to make sure I talked to her about the sleeping issues. I just thought she would give me something to sleep. I was a little surprised at the sleep study and the thought of me having sleep apnea.

Keep me posted on how things go for your son. I have you in my thoughts and prayers.

[jacmurphy]

Hi
My son has chronic fatigue. He can sleep up to 18 hours a day. In the last few months he has not had less than 14 hours sleep in any one day. Like you no matter how tired he is he keeps waking up during the nite.
I've been begging them to do a sleep study on him.. but I might as well talk to the wall. When he was in hospital the machine kept going off  every time he dosed off to sleep. The nurse had to change the settings on it 6 times before it finally stopped.
I found this study. It doesn't explain a lot, But it does say that up to 70% of Chiari patients have sleep Apnea.

http://www.ncbi.nlm.nih.gov/pubmed/17400590

We're going to see a Neurosurgeon tomorrow (one of only 2 in this country that see children so say a prayer for us that he understands Chiari) I'm bringing this information and a lot more with me.. and I won't be leaving until I get this sleep study.
Good luck with yours

Jackie.

[lilmiss1999]

As far as the sleep apnea, I really dont think that is my issue, but the (RLS) possibility is a good one.

It affects my arms and shoulders too! I also have Hyperreflexia so I too have tremors and shakes all the time in my hands and legs. The "jumping out of your skin" I understand. It gets so bad that I have to get up and move around for a while. I dont actually twitch a lot but I have the feeling that I am about to. (Does that make sense?) Thats the part that drives me crazy. My NL wants to rule out SA before she gives me something to sleep at night and calm the nerves (hopefully).

I am not sure what I would do without all the advise on here. I really appreciate it. Some days I feel like I am just falling apart. age 36 seems to feel like 60+ on days. :)

[*Stormy*]

I guess there's no way to actually prove it (that it's Chiari) but most of us here have had both sleep apnea and RLS. I have had RLS forever...probably since I was about 10 or 11. The funny thing with me is it didn't just affect my legs but my arms and shoulders too, which confused many drs. I am convinced it has to do with CM b/c I have such overexcited muscles that I tremor and vibrate all day and then when I try and sleep it just gets worse. I am on a combination of Lyrica and Amitryptoline so that I can sleep, it does seem to be working for the sheer affect that it knocks me out but I still wake up at least once a night feeling restless.
As for the not sleeping...I could not sleep many nights due to RLS. It would keep waking me up b/c I would feel like I would just want to jump out of my skin. I would continue waking up almost every hour, so that could be the problem with your sleeping and they may want to try giving you something at night. You are probably having more trouble with it when you lay down b/c that is when you are trying to relax and the nerves just go haywire.

B4 surgery, when I had sleep apnea, I would wake up in a panicked state and feel like I was holding my breath. When I'd wake it be a panic to expel the breath and draw a new one in. It would happen over and over again in the same night. I was going to be sent for a sleep study but then I was dx with Chiari and booked for surgery, I was confident that was what was causing it so I didn't bother. Things have been much better with the apnea since surgery.

I am glad that your dr is at least sending you for testing...but I hope you hear from that specialist soon b/c someone really needs to look at the big picture, not little parts of it.

Good luck
Carolyn

[lilmiss1999]

Thank you for the information.

northernstarmn... I sent all my information to Dr. Ellenbogen in Seattle. They recieved them last Thursday so I know I have to wait a bit longer.

I am not a big snorer. A little here and there and my DH said he hasn't noticed me stop breathing. The NL seems to think that those two things are not always noticed and my lack of sleep, fatigue, and insomnia is enough to worry.

Also,

What symptoms of sleep apnea did everyone have and were they VERY obvious or not?

If this Chiari related how does that cause apnea?

Can RLS or something similar be caused by Chiari as well? I have the most trouble with those symptons when I sit or lay down so could it just be pinched nerves that are non Chiari related.
I did have a cervical MRI and everything is fine there but have not have anthing looked at lower than that.

Thanks

[selmaS]

HI...I am nor sure how RLS and sleep apnea coexist but they r somehow related and chiarians r prone to sleep apnea.

When I went to a sleep clinic the dr there was very curious about RLS issues with me....but, not interested in doing a sleep study on me??

I hope u hear back from the chiari NS soon and getting these tests done r a good thing.

I sleep best on my side  like that and to be in bed...if u use a bed pillow to lean against u may find that to work well, plus put a smaller pillow btwn ur knees to keep ur spine aligned.

These other drs will not always be well informed on chiari and may dismiss the connection, but that is not as important as finding out if u do indeed have sleep apnea.
And once u get to the chiari dr he/she will get all the dots connected for u.

Good luck
"selma"

[northernstarmn]

sounds like your doctor is trying to rule other things out which isnt entirely a bad thing,
there are several here who also have sleep apnea and chiari, there are several things many have along with chairi-

however many NL's (and some NS's)know little to nothing at all about chiari,and for some what they know i feel they really dont fully believe thats why it is important for you to see a specialist in Chiari. And even rarer finds are a primary doctor who knows anything about chiari or is willing to learn.. good luck but i think you should try and find a specialist, not sure where you sent your films too but it generally takes 10 days+ to get a response,if you havent heard from them in 2 weeks it never hurts to call and ask if they received your films.

[redkim]

I have sleep apena, it's common with Chiari.  After my surgery (PFD) I was on the various machines, one that tested oxygen levels.  It went off all night because I would stop breathing.  My husband was freaked out.  I go to sleep class on Friday, my PCP wanted me to go there before I could take the sleep study.

All the best, it's no fun being tired all the time.

[lilmiss1999]

Also on most days I have to nap because of the fatigue. It was fine while on a short term medical leave but now that I am back at work and I can't nap, the insomnia is worse. It really doesn't make sense.