AN and Chiari I Malformation

[Dawn]

Hi All

Just wanted to send an update.  I was diagnosed with small AN in late November and had second MRI in March....after that MRI doctors are now unsure if it is an Acoustic Neuroma or a Lipoma so I have to wait another 6 months until August for another MRI.  Also at that time I was diagnosed with Chiari I Malformation.  Went to doctor yesterday and he recommends surgery as I have headaches EVERY single day and have been living on Motrin every 4-6 hours which hasnt really been helping.  He feels the surgery will relieve the headaches but not so much for the balance issues as my AN or Lipoma is sitting right on my vestibular nerve and has caused a 40% deficit of vestibular function.

So now I'm faced once again with decision time.  If I wait and not have surgery I could be facing upper extremity and lower extremity weakness and chance of permanent damage or it may never progress any further than it is.  As for the AN/Lipoma he suggests waiting till August and seeing if it has changed at all....so the big question...do I do the Chiari surgery or wait?

Any suggestions, comments or opinions from anyone?

Thanks
Dawn

[ppearl214]

Hi Dawn,

Seems more and more AN'ers and CM1 patients are cropping up.   Myself, anissa, TampaTim (as I lovingly call him) and more.  If you want, I can share in PM, as CM1 surgery definately can have its downfalls.  Depends on many factors... ie: if there is a syrinx present... at what degree is the slippage.... I know those headaches well and working with a headache clinic now to help control.... lots of factors. I only know of one person that had AN and CM1 surgery at the same time (TampaTim).  Raydean has a daughter with a tough CM1 diagnosis and I do not believe she's had the depression surgery.

If interested, just send me a PM..... more to it than just deciding to go into surgery.  The decompression surgery is only 40% successful and not an easy decision... not to be done lightly.  You also need to make sure you are in the hands of a very very qualified neurosurgeon. There are not that many that specialize in CM1, yet even the CM1 surgery. Depending on your location... I know of in Boston... in Tampa and in N. CA.  You really need to make sure you are in the hands of someone that specializes in it.

I'm available to discuss, if you are interested.

Phyl

[wendysig]

Dawn,

I Googled Chiari Malformation just to get an idea of what is going on inside your head.  I don'have any advice, but wanted to say IIam so sorry this has happened to you, what a truly lousy diagnosis.    Making a decision on whether to have surgery will be difficult and I can only say that you are in my prayers.  I know that's not much help, but as we've seen here on several occasions, the power of prayer can work wonders.  Please keep us updated.

Wendy

[ghenier27]

Hi there,  well I have AN on my left side but my daughter who was born with spina bifinda has had 2 Chari decompressions. Girlfriend, you need to do the Chari first because it controls everything. While my daughter had it done for headaches too that were all day and screaming in pain-then vomitting ( which reduces the pressure from inside the brain). It was done by Dr. Fred Epstin at NYU. I have to say that it was done in 1984 and she has NOT had any reoccurring problems with Chari since that time. I am sure by now there are newer updates to this surgery. Afterwards, she spended a few days in ICU and back then a few weeks in the hosptial- simply because we were so far from home (florida). Recovery at home was slow, I feel because of her disablities and other medical problems. But 6 months later, she was her old self. We used to celebrate every month after her surgery because I lived in fear that she would have problems with it again but never did. We feel blessed.

Dawn, I would do this as soon as you are ready for it because of the other things Chari has effects on and I have seen cases where they waitted too long. When you start losing things with Chari, it is usually for good. If you would like to chat with me more about this or have anymore questions - feel free to ask.

[ppearl214]

Hi there,  well I have AN on my left side but my daughter who was born with spina bifinda has had 2 Chari decompressions. Girlfriend, you need to do the Chari first because it controls everything. While my daughter had it done for headaches too that were all day and screaming in pain-then vomitting ( which reduces the pressure from inside the brain). It was done by Dr. Fred Epstin at NYU. I have to say that it was done in 1984 and she has NOT had any reoccurring problems with Chari since that time. I am sure by now there are newer updates to this surgery. Afterwards, she spended a few days in ICU and back then a few weeks in the hosptial- simply because we were so far from home (florida). Recovery at home was slow, I feel because of her disablities and other medical problems. But 6 months later, she was her old self. We used to celebrate every month after her surgery because I lived in fear that she would have problems with it again but never did. We feel blessed.

Dawn, I would do this as soon as you are ready for it because of the other things Chari has effects on and I have seen cases where they waitted too long. When you start losing things with Chari, it is usually for good. If you would like to chat with me more about this or have anymore questions - feel free to ask.

Hi Ghenier:

I am SO sorry to hear your daughter has childhood CM2. I send my wellness wishes that she is doing well and hanging tough. As, I'm sure, you and I have learned, with childhood CM2/Spina Bifida, it can progress quickly and you are right... it needs to be addressed quickly. With adult CM1, there tends to be (on occassion) a situation for "monitoring", depending on how quickly (if it is) slipping.  Most adult cases require monitoring as the slippage may tend to be approx 4mm-9mm and may not progress.  Yes, there are those with a bigger amt of slippage that do require intervention (the decompression surgery and absolutly if there is a syrinx involved). From an adult CM1, it is usually handled a little bit different than childhood CM2, so IMO, it needs to be addressed a little different.

2 good links... clearly noting approaches to be considered:

http://www.neurosurgerytoday.org/what/patient_e/chiari1.asp

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm

Please give your daughter a huggle for me (as well as yourself). I know dealing with CM2 is a very difficult challenge and my hope is that things are ok now.

Phyl

[anissa]

I've had both too, I think we briefly discussed this a while back.    My headaches have actually dissipated since my AN surgery (they were horrific after the surgery because of the swelling).  I have a 19" slippage but still somewhat asymptomatic so I'm in the hope and pray mode.  It is definitely a serious surgery and like with the AN, do your homework on doctors and experience with it.  I'll be here cheering you on whatever you decide to do.  I know the pain well, like fireworks in your head.  If I had the constant headaches like a I used to, I'd consider it too.  I was very symptomatic about 10 years ago but I stopped doing a lot of things that aggravated it.  Good luck.

[ppearl214]

......I have a 19" slippage.....

*looks down at 19" and realizes I need to shop at Victoria Secret! *


19mm, not 19", right?

Nothing like a CM1 headache to make one's day... NOT! Had one last night and nothing touched it. Go figure.

Phyl

[anissa]

OOPS!  Ha!  Yes, 19mm!   

[Dawn]

I appreciate all the well wishes it means a lot

Annisa and Phyl  I have such sensitivity on my head.... I cannot lay on my left side or on my back b/c the pressure from the pillow makes my head go numb, do you experience that as well? 

It is just a constant pain/pressure in my head and if I slouch on the couch with the back of my head leaning on the couch I have to change positions within a few mins or my head gets numb/more pressure (kinda hard to put into words) but did either of you experience this?

And as I  said up until last month it was ok but its gotten much worse in the last 5 weeks and of course when I don't sleep well its worse the next day but I can't sleep well b/c of this.....uugh!!!!

Talk to you soon, Thanks
Dawn

[Denise S]

Just wondering if any of you want to give any updates.   I know this post is older, but thought maybe you would get an email stating there is a new post on it.

(Phyl) of course I have been PMing with, but like Dawn, etc. how are you doing?   Did you make a decision?

I have CM1 and have been having lots of pain on & off since my AN surgery and now they are pointing at the CM1 around an 8mm slippage, but also something with artery.   Not sure if the meds I have right now are helping much, but waiting again to get into neurosurgeon on April 14th.   

NO way could I even think of surgery, ugh!!!    Feel like I haven't healed from the AN, but my internest and ER doctor think it is because this CM1, etc. flared up.

By the way Phyl.....my motto is "day by day.....hour by hour" 

Denise (MI)