Chiari Newbie

[boobooswife]

Well....the neurologist determined thru an MRI that I definately have Chiari's....that MRI made me cry. He said my tonsils are the largest he has ever seen .... not sure what that means. Didn't give me any measurements of them either. He now says I need to see a neurosurgeon ASAP. But first I have to fight with my PCP to get the referral to see the neurosurgoen on Monday.

My neurologist put me on 500 mg of Naprosyn twice a day to help with the headaches.  Hasn't touched them yet.....any suggestions on how to make them quit or at least go down a notch???  I have them so severe I vomit due to the pain and have been living in the dark for months due to the light sensitivity.


Does my case sound like I will most likey need the surgery? I am more upset bout having to shave my locks than worried bout the actual procedure. Have checked out numerous websites and those listing the video of the surgery. I just really need this pain to be gone....no matter what......should be illegal to be in this much pain and nothing help.


Any help will be greatly appreciated.

BooBoo'sWife

[selmaS]

HI Michelle,

I had my PFD in May and am feeling everything again....but it is the disks in my neck...I have stinosis and the bulging disk is causing a CSF blockage and the symptoms.Plus, I have tethered cord which is still pulling down on the tonsils and my brainstem...again causing symptoms....so, u may want to get a MRI of those areas and see if ur disk degraded like mine did.

And do give urself time...I did hear from other zipperheads  u will have symptoms as u heal.

Good luck
"selma"

[boobooswife]

hi there....
I had the decompression surgery on November 9th of this year. My tonsils were hanging down so low they were down over my 1st three vertabrae in my neck. Plus I have 2 blown discs in my neck to be delt with later.

I saw Dr. Ghassan Bejjani out of Pittsburgh, PA who preformed the surgery. I had to have a portion of my skull removed and a metal plate put in its place. But even after a month of recovery, my headaches and dizziness are returning full force. I am still having the light and noise sensitivitiy. I have seen Dr. Bejjani and he said that I have no CFS leaks and just puts me on meds that don't help (i.e. Vicodin, Percocet, Valium, ect)

Are there any of you that have had the surgery and afterwards the symptoms return??? I am getting soooooo tired of living in the dark of my bedroom and having all the lights off in the house. I truely thought the surgery would be a blessing. But now my head is sooooo sensitive on the sides I can't even sleep on a pillow in bed........so I sleep on the recliner. I also feel like such a baby bout all this pain........but it is soooooooo bad I am at my wits end.

Am I pushing the healing process to fast? My stitches have been taken out and the wound is all healed up........my zipper. My neck stiffness is always there but I continue to look back and forth to stretch it out every day.

I just feel like I am going crazy and this is what the rest of my life is going to be like......dizzy with blinding headaches all the time. Any help y'all could give me would be a greatly appreciated and a true blessing! Hope to hear from you soon.

Huggs to all,
Michele

[selmaS]

Hi Michelle...so glad everything is going well for u!!!

I also think u will have ur stitches out at 2 weeks also.....I didn't have stitches, except for the drain...there was one and it was at 2 weeks it was removed.

I am so glad u r seeing benefits right away......do not get disappointed if u have a return of ur prior symptoms....I was told to expect during the healing that some symptoms may return, but not as strong and won't last as long....but they will come and go as u heal.

I pray u continue to see the benefits and u r up to rejoining us here : )

"selma"

[boobooswife]

Had my decompression surgey doneb Dr. Bejjani out of Pittsburgh and a metal mesh under a metal plate put in my head.  I was lucky and they didn't shave much of my hair....whew. Plus they used 21 stitches instead of staples. Everything went ok and am home after 3 days in the hospital. Another blessing thru this sugery is all the pain in my upper back and shoulder muscles is GONE! Have had the pain of someone sitting on my shoulders for years.

Gotta wait 2 weeks for a check up.  Dunno if they will take out the stitches then or not. Not sure if I will need PT or not.

Just thought to update you all and thanks for all your thoughts and prayers. They definately worked.

Huggs to all,
Michele

[tysgmother]

Hi booboos wife.  Legs going wonky I guess that is a good way to describe it. My legs have been swollen and in pain for about 3 to 4 months now.  But twice I have gotten out of bed and not been able to walk.  It was strange I could move them to get off the bed and I could stand I just could not make them move once I was standing.  The first time it only lasted about 30 sec, the second time it took me close to 3 mins maybe to move.  Even while holding on to my husband.  My legs just would not move.  Have no idea what is going on.  

[selmaS]

I had the surgery in May and have my info right after posted in my journal feel free to read it.

I am now 5 months post op...and I am still healing...we r all different.

But u can PM me netime : )

"selma"

[boobooswife]

He said he would be placing the mesh first then the titanium plate.  That is all I know for now. And sure.......I would be willing to talk to anyone who's had this Chiari surgery before......even without the plate.  Just wanna know bout how long it took to fully recover and what to expect. Told me I was not allowed to twist, bend, or lift anything for 6-8 weeks after surgery.

Huggs,
Michele

[selmaS]

Hi Michele....I  did not require a plate.....did u ask what type of patch he uses?

And chiari in it's nature is  the skull is too small causing the cerebellum out and down onto the spinal cord and brain stem.

I do know of anothe patient of Dr Bejjani's if u would be interested in talking to her? I am not sure if he used the plate on her.....u may want to talk to her to get ideas.

"selma"

[n40066]

hi michele..
is he going to put in a mesh titanium plate or a solid plate?

[boobooswife]

Went to Dr. Bejjani in Pittsburgh, PA and my surgery is scheduled for November 9th.  I hafta have the decompression done.  Said I will be in the hospital for 2-3 days. He told me mine was so bad that he will hafta remove a portion of my lower skull and
put a metal plate in to replace it.  He said basically my brain was too small for my skull and was amazed I haven't had any problems til now at 35 years old. Have any of you had to have this plate put in??  If you have.....how long was your recovery once ya got home?  Just trying to get as much info as I can.  Any info is greatly appreciated.

Huggs,
Michele

[selmaS]

Michele....so glad u got ur appointment with Dt Bejjanni..I heard him speak at a conference for chiari......almost went to see him but it was 5 hrs oneway...YCI was closer for me.....I pray all goes well and look forward to ur update.

"selma"

[boobooswife]

Praise God!  I see Dr. Bajjani next Thursday in Pittsburgh!  Wil post how that appt goes!

Huggs,
Michele

[boobooswife]

Thanks for all the doctors you gave me in my area.  I checked each of them out and my hubby and I have decided to get an appointment with Dr Ghassan K Bejjani out of  Pittsburgh, PA.  After looking up all the doctor's profiles, he definately seemed the best. Now am just gonna try to get in to see him......my PCP has stated he will gimme the referral and help in any way he can.....whew. I was even able to check to see if they accept my insurance........and praise God they do! Wish me luck and thank you for all the help and information.  This group is amazing with all the support and help.........thank you from the bottom of my heart.

Thanks a million,
Michele

[n40066]

we also have a thread HERE listing chiari specialist that our members have used and liked!  if you have trouble finding it, please feel free to ask and any one of us here will be happy to help you!  as always, RESEARCH ANY DRS. BEFORE EVEN MAKING AN APPT.!  often times, you will find list that are out dated, meaning drs. have moved, are retired, or are forced out of their positions.  so please, be careful and do your research!

some of the members here have had some luck finding a comfort zone by using different size towels rolled up and placed under their necks....just have to play around with it a bit to see what size is right for you!

also, there are a couple of threads here where we have a list of questions to ask when visiting your ns.  as a matter of fact, i started one myself not too long ago before my appt.  the members had some wonderful suggestions and made my visit much more relaxing and less stressful than it would otherwise have been for me!  again, if you have any trouble finding these threads, just ask!  we're here to help each other....
looking forward to chatting with you again soon!
elizabeth

[WeddingJean]

I'm a newbie myself (5 wks old) & my prayers go out to you. I was 'relieved' to finally have a diagnosis for my symptoms too & the fight has begun. Not only the battle of finding ways to eleviate my symptoms, but also the fight to find the right drs. I already have the "Three Stooges" (PCP, NL & NS) on board, but none of them are in my corner. It's almost like they are afraid to even say the word Chiari let alone try & help me with it. So I've decided to use them as research guinea pigs & get copies of the results from the tests, MRI's, reports, etc. so I am more prepared to move forward in my search. I have found out that I need to find Chiari SPECIALISTS, not just drs. "experienced" with Chiari patients.

Ask all of the wonderful people here all & any questions you have...we will do our best to help. Good luck with the drs. & your insurance company!!   ***Jean

[n40066]

gotcha on my list, boo!  good luck!!!

[boobooswife]

Yesterday was bad.........Have any of you had yer legs go all wonky?  I had problems walking.....they were shaking and bucking when I was trying ot walk.  Scared me so I called my neurologist and the nurse said my gate would be off....No kidding.  That is gone today though....whew!  I take like 2-3 hot baths a day to slow down these headaches.  Cold makes me just about cry.

Now I am having trouble finding a neurosurgeon that will accept my insurance. Please pray they will find one who will take my insurance and help me.

[lu7997]

ohhhhh  that is much cleaner then what I filled in the blanks with  LMAO   : )

[SaratogaNurse]

OK, apparently I can't say ***** on this site.

The baby ***** milk from her bottle.

SEE??  LOL

[SaratogaNurse]

Hi and welcome.

Sorry to here about your diagnosis,  I'm newly diagnosed myself.  While Chiari is scary to deal with, I was actually glad to have that diagnosis.  At least now, I know that I'm not crazy, I'm not a hypochondriac, and I have something to fight.   In the past I had one doctor try to tell me that I had anxiety, another tried to tell me I had depression, and yet another tried to tell me I had too much stess in my life..   I knew all these doctors were pulling things out of thin air because they didn't have answers.  Oh..   and the always wonderful "Chronic fatigue syndrome".   I never accepted these and never took medications for any of them because I knew they were wrong.  

At least now we know what we are fighting.   Yes, it's scary and it ***** A LOT, but it could be worse and we aren't alone.  For the headaches, try the heat and the ice, see what works for you...   there are days when I alternate.

Make sure that your NS has experience with Chiari and that you get and second opinion (a third and fourth if still unsure).  Use this site!   Use this site!  The people here are just like you and me, but they have "been there, done that" and are filled with experience.

Good luck to you.  Welcome to our Chiari Club, I'm sorry you've had to join, but I think you'll find this a great place to blow off steam and even laugh at your situation once in a while.  :-)

[lu7997]

csf= cerebral spinal fluid.   You do have that I promise.  The question is weather or not it is getting backed up in the brain as a result of the herniation.  Make sure you discuss this with your NS and also request copies of your MRI so you have it.  I have found that using a neck pillow helps some but i have not found anything else yet that relieves the headaches when they are bad.  I wish I knew of some trick for you.

you can try cool compresses but IMO cold makes things worse for me but every one is different and if warm wasn't helping maybe cold would help you;

good luck.

[jorlex137]

Hello!
I feel your pain, it's hard and frustrating!  Selma is right, it comes down to basically relaxing your body to get the pain to go away.  I've been doing the showers and have found a microwaveable neck wrap to help relax me.  Some people perfer ice some perfer heat. I perfer heat, because ice seems to make me tense up more and make it worse.  

I think when we relax, things calm in our body and flow better!  Hearing your news, does not help your stress factor so I'm sure your dealing with more pain.  

Let us know how things go with the ns!  Hang in there, everyone here is great and understanding!  

J

[boobooswife]

The neurologist didn't say anything about CFS....dunno if I have that or not.  Thanks for the info on the foods!  Will post later on after I get to see the neurosurgeon.

[selmaS]

Hi and welcome to the Chiari forum.

I am sure once u get to the NS u will get details of ur herniation size, but what is more important is , do u have a CSF blockage, if there is overcrowding and ur symptoms...and they also look at quality of life.

For a bad HA...try to relax in a warm bath with  scented candles and a darkened room...relax as much as possible....most meds do not help with these chiari HA's.'

We do have a page in the Health Pages here on MedHelp on anti inflammitory foods....so nething like that can help...and avoiding things that can casue inflamation.

Glad to have u as part of our little family here, sorry for the reasons.

"selma"