surgery shell shock

[citysmom101]

Just had DD NS appt. w/ Dr. Ellenbogan. She has a 13mm herniation, NOT a 9 or 7.5! she has complete blockage in the back, SEVER compression on the brain stem, & the L tonsil wraps around the spinal cord/brain stem junction. Same things that were shown on the MRI from 1/23/11, that her (then)NL said was no big deal, Chiari wasn't the issue, her sypmtoms (most on the L side!) weren't a result from that at all. URGHHHHH!!!! My little DD could have already had the surgery, been healed, & looking forward to summer instead of the worsening symptoms & school issues NOT TO MENTION the almost DAILY pain she has been in for the last 3 mo!!!!!  I truly feel that the neurological community as a whole need to be better educated RE: CM/SM & the accompanying symptoms OTHER than "headache"!!! It would save all of us tons of $$$$, heartache, stress and years on our lives! as the NL's are who we are sent to first before all the other misdiagnoses are made!!!!! I am one MAD mom!!!! both Doernbecher & Seattle Childrens are going to get a very nice letter from me explaining where I feel their programs have failed my daughter, and probably numerous other children as well.

Do not know if she has a tethered cord or not, but, no syrinx at least. I am supposed to call to schedule her surgery. will do that tomorrow. Was just to shattered today.  The NS was saying that he would do the decompression surgery, wasn't sure if he would open her dura or not. Would see when he was in there. Is this common? What do they usually do for the tonsils? If he removes a piece of them, what does that do?

Knew from my own rsrch that this is what she needed......... but...... she is only 8. & brain surgery is scary..... Thank you everybody for sharing your stories. They helped me to advocate for my dd so she didn't have to go thru years of pain.

[zygy2]

Sending hugs to your daughter!!  I am so sorry she has to go through all of this!  My daughter is 12 and I worry every time she gets a headache that she could have Chiari like myself!  I can't begin to imagine how much you must go through as her mom seeing all of this happening!  It sounds like you are taking great care of her though and keep looking for answers!  I hope surgery will make her feel better.  I had my surgery a year ago and am preparing now for a second because my patch has a problem and I have spinal fluid outside the dura.  Just keep asking questions and doing research!  I have a hard enough time making decisions for myself I am sure it is much more difficult making those choices for your child.  The surgeon that I have now does not remove the tonsils, just shrinks them.  After laughing about the thought of him "shrinking" my brain it was an interesting conversation and he said that the area of the brain that is "outside" the normal space is already not being used, he said this is why when a child is born with brain outside the skull, they just remove that part.  He said that it does not cause any problems at all to shrink this area of the brain... he did get very technical with me but it was interesting and I felt very confident that if he were to do this it would not be a bad thing.  He also really pushes for using your own tissue for the patch, had I had this the first time I probably would not be having this problem a year later.  They do say that kids bounce back very well so hopefully she will be healthy and happy quickly and be having some summer fun!  I was going to put my surgery off until fall at first because I felt the same way, I didn't want to miss out on Summer fun!  Then you realize that some things just need to be done and the faster you feel better the better off you will be.  Make sure that this surgeon is really good at Decompression surgeries and that he will do enough so that she will not have to do it again!  I would think with her herniation that size and so much compression that they would have to open the dura??  Keep asking the surgeon lots of questions and until you are happy with the answers just don't stop!!  I will continue to send her happy thoughts that she can be playing and doing cartwheels again really soon! -Zygy

[Xengie]

i don't know where u guys live but oh my word dr veyna works miracles.i jux had my stitches taken out and aside from litto bit of the surgery pain im all good so far no leaking or bleeding.i think my herniation was about 13 mm too.if he is within ur netwrok please give him a call here.when i was there the other day to get my staples out this outer dude n and his wife was telling me and my husbad how great he was too, considering they never meet him until the day of the head surgery.head and spine institute of michigan is suppose to have some of the best docs atleast tats wat all the plaques on the walls says however i would still request fo richard veyna.the number is 877784-3667

[redkim]

Regarding the low backpain and frequent urination...I know you mentioned not being sure if she has thethered cord.  Will you be able to find out prior to the PFD?  I have read that tethered cord can be the cause, and wonder if not having that fixed soon could make her heniation worse?  I cant imagine being a child and going through this.  My husband wants kids very much, but I worry about this being hereditary as well as a hip condition I just had surgery for (possibly the first of many).  Knowing what its like to go through it that is a choice I think only I can make.  I hope she get's better and can go back to all the things she loves.

[selmaS]

  Hi...I can understand how u feel...I think we all have gone thru this even if it wasn't our child but our own self we were looking for answers......

I am glad u have a Dr that has recognized what ur DD needs to help her begin to  feel better.

Many Drs do not feel chiari is or can be symptomatic and I agree something has to change. This Sept is the 4th Chiari walk.....the more of us that get involved and get the word out, we may be able to change this perception of chiari in the medical world and among family and friends too!

  "selma"

[citysmom101]

Her sypmtoms include almost constant spastic movement of her l leg, almost daily headaches. Usually under 30 min, but 3-5 times a day. severe pain in lower back, frequent urination (every 30 min during day, 2x @ nght), EXTREME vertigo (she will sometimes lay on floor!), l leg collapses almost daily, whole body about 2xs week. Vision problems, including 2 xs loosing vision completely for more than 3 hours once and more than 24 the 2nd time. extreme fatigue, falls asleep just sitting at her dsk, or in church srv, the 10 min bus ride home, etc, etc, she has lost muscle tone, & strength, tires easily, always excelled in school, working at least a grade ahead in most subjects, now gets 50% on spelling tests & has to have special help in math.  Arms & legs fall asleep. has hoarse voice, gait has changed, eyes are frqtly swollen, VERY pale w/ DARK circles.   used to watch TV by doing cartwheels, splits, handstands, dancing.... now.... just sits.  Today - can't move her r arm. upper bicep actually seems swollen.

it makes me sad just to list these. so glad that your sons Dr. are already a step ahead of the game!

what kinds of symptoms does your son have & are you guys going to choose surgery?
Jodie

[citysmom101]

Thank you. Yes, I know tht surgry is only to help stop the progression, & will (hopefully) eventually help stop some of the symptoms. I meant healed as in the incision site, her ability to go to school, & participate in light to mod activity. Instead, she will miss the most fun field trips,her end of year dance recital, and probably not enjoy the first part of summer as much.  To a little child, who can only remember 2 summers of activity, and last years field trips, it's a big deal! But - she wanted to do the surgery sooner, so that she can participate in summer dance & hopefully!!! win more trophies! :) HER goal! lol Having an 18 yr old son that was DX w/ ALL 2 years ago & is still in treatment, am VERY aware of the differance between expectations and reality!  

From what I have read, children do seem to have a better outcome than adults. HOPE this proves true for her! GLAD to hear they no longer remove part of the tonsil. Have now thought of at least a doz. ??? I should have asked the Dr! Hope he doesn't mind a phone call!

[PipelayerAndy]

Im a 30 yr old male and had decomp surgery on the 7th with ellenbogen.   I was just diagnosed and had a normal life untill sept of last year.   I know that I havent had to live with this for long but it was an amazing appointment to finally get to see that man.   he had all the information and is a very competant and compassionate doctor.   Like I said I had the decomp on the 7th but had a pretty good csf leak four days later at home draining from my insision.   Had a lumbar cathader put in and after another week in the hospital am back home again.    Just wanted to put out there that he is my provider as well and in my research and experience with him is a great doctor to have in our area

[dawnsc]

Wow, we just got the dx last week, but I already feel we are ahead of game. My son is 11, we have already had 4 MRI's and a flow study in a months time. NL is making appt with NS today. Very nervous myself. My aunt had the surgery about 10 years ago. It's scary to tell a kid there is a problem with their brain. What are all her symptoms if you dont mind me asking?

[redkim]

I just wanted to comment on the "healed" part.  I am not sure if you know that surgery isn't a cure, its a treatment to stop progression.  If symptoms get better that is a bonus.  Not to be negative about it or scare you.  I just want you to be aware.  I am two years out from surgery, Posterior Fossa Decompression with Dura Plasty (my tonsils were "shrunk" nothing was removed - ps my herniation was about 10MM).  I spoke to someone who had part of her tonsils removed and she had trouble with keeping track of the time and day.  I don't think any doctors remove them anymore.

As for summer, it was six months before I felt like I could get back to being somewhat active and it was difficult.  It was a year before I really started to feel like I had strength.  Of course children are more resilient.  I was 26 when I had my surgery.  I do feel better then before surgery, but I still get chiari headaches.

I hope your daughter has a successful surgery.  Keep up the good work of being her advocate.