Will surgery be necessary?

[kjsd]

My son (almost 24) has a demonstrated chiari malformation (herniated tonsils 15mm and 10 1/2mm) and a CINE MRI which shows total blockage upon flexion.  Interesting and fortunately for him, though he definetly has chiari symptoms, they are mild compared to what some others experience and except for the major anxiety over the situation, it is not stopping him from doing things he wants to do.  We have just submitted his medical records to several chairi specialists, so he has not been seen yet. On one hand we would not like him to have to undergo surgery, on the other would like the condition to be over with if that is possible and certainly would not want to have him develop a syrinx.  I am thinking that maybae they would do a shunt, though I hope not!.  I know I should wait til I hear from the experts, yet I can't help but wonder what might be in store for him.  Has anybody been in this situation?  What have been recommendations?

[lmaquilon]

Hi. I currently live in Anchorage and have an appointment with dr. Ellenson at providence. Have you seen the nurologist yet? How was your experience? Thanks in advance :-)

[selmaS]

  Hi so glad to hear things are going well for u.

I hope u continue to enjoy  a smooth recovery...and that u pop on from time to time for updates on how u r doing : )

[Claire314]

Just checking in to say hey!  My surgery was two weeks ago tomorrow. I feel great really. Ive only had 3 dizzy spells since my surgery and im pretty sure two of them were due to medication. I did have one set back.  Last week i came down with a splitting headache and the pain medication wasnt working at all so I went to the hospital and they did a ct and found that the skin around my brain had become very irritated and swollen causing the headache but that that it was normal. So ive been on a steroid for that. The pain is very minimal besides the stiffness in my neck. But with lots of work i feel awesome. Needless to say I am very impressed with modern medicine and the ability to acurately diagnose and treat without drawing out the process too long. Very pleased. And thanks to all you guys for your testimonials and stories that everyone can learn from. So great!

Talk soon,
Claire

[selmaS]

  Congratulations.....

  Do u also have a CSF obstruction, or ne other related condition?

Do post ur surgery date in the surgery date thread so we get a prayer thread posted for u....

Keep us posted : )

[Claire314]

Hi all!! Just wanted to inform you that I saw neurosurgeon today and my chiari was 15 mm herniated. So my surgery is scheduled for march 11.  I just want to say thank you to everyone for your support and knowledge. I will definitely be back on here to see how everyone is...Claire

[frankie_rush]

I am glad you are getting the hlep you need.  Yes we are here for you as support.  You can talk to me anytime you need to.  Yes it does feel good to know that their is someone there to talk to.  They found mine on accident also.  I had a case of Bells Palsy and told doctor what happened and he said that wasn't normal and did a MRI and found it.  Remember this is something you will always have but it is up to you to make it through and let it now you are in control.

[lschwarting]

Whether or not surgery is advised should be dependent upon a conversation with your NS, never an online community. Peers cannot tell you if surgery is needed.

[Claire314]

Thanks so much for the info!!!!  I am not sure how much my herniation is or if i have a syrinx i have an mri this coming monday and then i see the neurosurgeon tuesday.  I found out i had it on accident.  about 2 years ago i was diagnosed with vertigo, and soon after that i got into a pretty bad car accident and ever since then my symptoms have been getting worse.  and like i said it takes a lot to just even move every day.  i came down with a bad case of bronchitis about 3 weeks ago, but i had fainted so i went to the hospital just to make sure that everything is ok. and thats where they found it from a standard ct scan.  So ive been referred to a neurosurgeon.  Im excited that i might actually have a diagnoses for all of my symptoms and also excited that maybe there is someway that my symptoms can be subsided.  Im praying really hard that something will help with the symptoms but i will find out more next week.  Ill let you  know :) thanks so much, its great to know that there are people i can talk to about this and that are there for support :)

[frankie_rush]

Hello Claire,

I had surgery back in July of 2012.  My hernation was 12MM and a syrnix  was from C2 - C7.  My symptoms was light but the ones I had were hard eveidence.  The surgery has taking them away and helped alot.  I had the fusion also, that is the biggest thing getting use to is the limited motion.  But I can drive and everything now.  Like Selma has said and told me is once you have it yo have got it, surgery is not a cure but it can and does help if done correctly.

[selmaS]

  Hi and welcome to the Chiari forum.

Finding the right Dr that is well experienced with Chiari is key, so u need to educate urself so u will know when u have the right Dr...and the treatment options r right for u as well.

Make sure u r tested for all related conditions as they can affect how u feel and heal.

Most important. get a CINE MRI also know as a flow study to see if u have a CSF obstruction..and or over crowding....then look for other issues with MRI's of the cervical , thoracic and lumbar spine  ...rule out disk issues, tethered cord, syringomyelia, ICP, POTS, sleep apnea...and ehlers-danlos.

B4 u can decide how to treat, u need to know how ur chiari is affecting ur overall health.

And FYI- surgery is not a cure...it is just a means to restore flow and slow progression.

Only more testing and ur Dr can help u decide if surgery is worth the risks....but we r here to offer info, insight and support what ever u choose./

[Claire314]

Hi my name is claire and i am 21 and have just been diagnosed with the chiari malformation.  I am fitting almost all of the symptoms of the brain disorder and am wondering what do do next.  i have already made an appointment with a neurosurgeon and have an mri lined up.  what should i expect?? i have been put on medical leave until cleared by the neurosurgeon and am feeling dizzy all the time.  I call it my "wobble wars" and it takes every ounce of energy to stand up out of bed in the morning.  i find myself constantly concentrating on not falling over, though i do a lot anyways (in the shower, getting out of bed, knocking things over).  I do also experience a lot of neck pain but more of a full force of pressure moving downwards.  right now as i wait to see the NS i wonder what a good option as far as the surgery goes.  I am one who is very opposed to cutting open just to cure, but i have lived with this dizziness and fatigue for the past three years every single day.  If the surgery is going to help ease my symptoms, is it something i should go for? my fear is that my doctor is going to say wait a year and come back for an mri.  as ive discussed with my family i would dread having to go through another year of this when the surgery can help subside the side affects..just looking for some answers.  sorry for the novel ha ha.

Claire

[selmaS]

  Hi and welcome to the Chiari forum.

We do have a list of Drs that was compiled by the members of Drs they have been to and liked...the list is not an endorsement for ne of the Drs nor does it mean they r true Chiari specialists...it is here to give u a starting point  to research the Drs and find the right one for u.http://www.medhelp.org/health_pages/list?cid=186

Fatigue is a major complaint with Chiarians as is insomnia....some also have sleep apnea so u should get checked.

We r here to help support u the best we can...so let us know how we can be of help : )

[akyoungn]

Hello everyone. I'm facing a lot of the things you have been discussing and really need some help and support. I live in Anchorage as well, Im 19 and i was just diagnosed with syrinx. I am facing my first NS appoint and Im not really sure whats going to happen. Ive never had any sort of spinal injury which leads me to hoping I only have a chiari malformation (as opposed to a tumor).

One of my biggest concerns when thinking of the future. My fear is Alaska doesnt have doctors experienced enough with my condition. I was diagnosed by an orthopedic doctor who had only seen someone like me 3 times in 13 years. Does anyone have any suggestions on who to go to? Im currently scheduled with a NS at Providence and have no idea if hes any good.

Also has anyone noticed an increase in fatigue of those diagnosed? Im finding it hard to get to sleep but then i sleep way longer than i should. Any help would be appreciated especially since I'm new on this journey and I dont have a lot of support.

Thanks
Takeah

[Cathyl82]

I live/ teach in the bush and don't have a pcp here. Mine is still in illinois but it is really hard to get things changed when I am so far away. I think I will need to go into Anchorage soon. I don't even know where to start in Anchorage. I am only in for a day or two at a time when I am passing through or if there is a problem. So do you know of a good pcp who understands Chiari?
Thanks
Cathy

[selmaS]

  Hi and welcome to the Chiari forum.

I am not sure that CarrieinAK is still active on this forum, it has been sometime since she posted, u may want to try a PM(private message) to get her attention, as a e-mail will go to her that someone is trying to get in touch...
  
I would also suggest u talk with ur PCP sometimes they can be helpful in locating a NL or with the issue at hand.....My PCP is taking care of my meds, I  do not have a NL....just a thought.


    "selma"

  

[Rahe28]

So you have a pcp here that maybe you can have coordinate with your surgeon, and have the pcp give you the meds you need?

I know that traveling can be costly and hard.

[Cathyl82]

Do you see a neurologist in Alaska who has experience with Chiari. I really need to someone to have some meds changed but I don't want to go all the way to Wisconsin (where my surgeon is) and I don't want to see just any neurologist.
Thanks
Cathy

[CarrieinAK]

Hi Karen,

I hope your son is having a great time in the Greatland. It's been rainy here in the Anchorage area except for a beautiful sunny, warm day on Monday.  And the Interior (around Fairbanks) is smoky from a lot of wildfires.  But it's still beautiful in a wild way.  

I'm glad your son made it through the rafting without mishap. Yah, sometimes it's easier for moms to find out certain things after the fact.  :-)

Best of luck to you both,
Carrie

[kjsd]

Thank you very much for your sound advice.  I completely agree with you. My son has one day left on his trip.  He has told me that he did go river rafting! (I am glad he told me after the fact!). When he comes home I will show him your posts, as I do believe he should use more caution in the future.
Karen

[plumsaki]

My herniation was at 15mm and I had my PFD on January 6th of this year.  I would also like to mention that my herniation went from 7mm to 15mm after falling and hitting my head.  1 in 4 Chiarians suffer a progression of symptoms after minor head trauma.  Your son needs to be very cautious when it comes to biking and rafting.  I was simply getting gas when I slipped on the ice and hit my head.  Now I realize anyone can fall at anytime like I did; however, if there is any way he can be a little on the cautious side when it comes to activities it would probably be wise.  I know he is young....but living a life of caution due to the disease is far better than the alternative.

Best of luck and I will keep you and your son in my thoughts!

Andrea  

[CarrieinAK]

Hi,

Sorry to hear that your son has Chiari.  My adult daughter had decompression surgery July 9th and so far her recovery is going fairly well.  We live in Alaska and traveled to Denver for the surgery, because we didn't want to risk having the surgery done by local neurosurgeons who are not familiar very familiar with Chiari.

I hope your son has a great time in Alaska, but I would caution him about mountain biking and rafting.  If he has a fall or sudden jolt that aggravates his condition, Alaska isn't the place for emergency Chiari surgery.  This is just my opinion and I don't mean to add to your worry.

I wish you and your son all the best and will hold good thoughts for improvement in his condition.

Carrie in Alaska

[selmaS]

HI...sorry we had a thunderstorm...I was off line for awhile.

MVA is motor vehicle accident......deff...the rafting is too bumpy.....rollercoasters r on the list to avoid.....so I would deff avoid these activities also.

Right a blockage and overcrowding do not allow the fluid to flow and it can cause all kinds of issues including pain.This could cause perm damage if left untreated...especially if the blockage is causing a nevere to be inpinged.

Depending on the type of patch that is used, they can fail....or another issue can develope...a syrinx.....

Well, have him pop on here to read some of the threads,,,,,,,if he feels pretty good now, he is lucky....but to risk getting worse to go on that trip ....well...lets just say, if I had an oppertunity to ride a roller coaster...something I love to do...I would say no....this is not easy, but I do know that the last time I rode it I did not enjoy it as much.....and now I know y.

"selma"

[kjsd]

Silly me!  I just reread your  response to me.  I already know your answer to my last question. Now how to you tell a young man ( almost 24 ) to avoid those activities (rhetorical question!!)

[kjsd]

Thanks Selma, your explanation does help. So, if I understand this correctly, decompression does help with the CSF blockage, but because the area may still be too small, a blockage can occur again, as well as other problems/symptoms.
In my son's case, sounds like surgery would still be recommended because though his symptoms are not severe, he does have CSF blockage, which  must not be allowed to persist?

Also what is MVA ?

Also, he has a brief trip planned for Alaska.Two of the activities are mountain biking and a river rafting  (Stage 3). He was told these two activities are not strenuous  He will be wearing a helmet.  If it were me, I would avoid those activities, do you agree?