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Chiari Malformation, decompression surgery...
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Chiari Malformation, decompression surgery...

I have decided to post this on here in hopes that I will get answers from a neurologist.  

I am meeting with a neurosurgeon Thursday after being diagnosed last week with a Chiari Malformation.  I want to have as many questions prepared as possible.  

I completely understand that each person is different. The past few years I have had several surgeries but this is the most serious one.  I know some have bad, average, and excellent experiences.  I would like to hear any and all info you can give me.  :-)

I *think* from what I have read that there are different ways doctors actually do the surgery.  I have read that some open the dura and put some type of plate in?

1- In regards to cutting the "dura"...is this something that should be done?  I know everone varies, but why do some surgeons do it and some do not?

2- The "plate"...what I mean is that they replace something, like the skull, that they have to remove.  Do they always use a plate?  Is it better to have one that not?  Are there plates made from different materials?  Any better than others?

My case management nurse from my health insurance company said that some doctors enter from the front (around your throat?) and some from behind.

3- What is the difference?  

4- Would I have to shave my whole head?  

5- Is there a big noticeable scar afterwards?



After surgery...

6-    :-)

7- Will I be able to sleep on my back?

8- Will I be able to move my head? Will I have any special brace or bandaging?

9- How long will I be in the ICU?

10- How long until I'll be discharged from the hospital?

11-      :-)

12- What kind of pain medications/pain control are used?


I know that it takes a while to completely heal.  But...

13- How long before I should be able to resume normal activities?

14- I have young children (1, 1, 3, and 7), how long until I should be able to care for them without having help?

Anything else you'd like to let me know, I'd greatly appreciate it.

I apologize for so many questions.  My husband works for the railroad and is away from home Monday-Friday of each week.  We are trying to get some sort of idea what things will be like and how long he will have to take off of work.  Our children weigh 30+ pounds so I know that it will probably be several weeks.

Thank you so much for any information you will share.  You don't have to answer all questions :-) I am just hoping to get a good idea of what is to come.  

Melissa
Chiari dx 09/09/08
Neurosurgery appt 09/18/08
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Avatar_n_tn
Melissa- my 15 yr old son had the surgery at John Hopkins in May- they did not put the plate in. Dr. Carson did his surgery and once they got in the circulation started to flow when they shave the skull and the pressure went away. My son stayed in hospital 5 days and came home on pain meds which he only took for a week. His recovery went well and fast. He said its the first time in his life he has felt "good" and no pain.
surgery is scary but it was good for him, he still can notplay contact sports but he is much better and not suffereing a head ache every day
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Avatar_n_tn
You may have has the surgery already or not, but this might help others
I was diognised with CM June 9th, and by the end of the month was found to have the scysts in my spine. and by the end of July, I had the decompression surgery. it was all very fast paced, and scary. you shouldnt need the surgery if you dont have the cysts.

as for your questions:
1- I had a normal decompression surgery. where part of my skull and 1st vertebra where removed. and a dura patch was sewn over the place where my bone was removed. i dont feel any different. i do know that pressure on certain parts of where it is now exposed is not comfortable it will make me sick to my stomach or a bad headache. but it is only alon about 1/4 of my scar, and not bad.

2- I did not have a plate or anything cover it. they used the dura patch. i would think that it isnt commen to use a plate. because they are removing the rigid skull to relieve pressure. y would they want to replace it with something else rigid

My case management nurse from my health insurance company said that some doctors enter from the front (around your throat?) and some from behind.

3- What is the difference?   - I have never heard about coming from the front, specially since they removed part of the back of my skull. but my dr had done quite a few CM surgerys, and I trusted him, because it can be hard to find a dr that had even done one.  

4- My neuro surgan was very nice and would make jokes about the hair cut he gave me, and why i wasnt sending friends in to get the same. but all in all they do have to shave part of you head, but only about 2-3 inches on either side of the incision, and down to the bottem of the neck. it was a lot less cutting then i thought it would be

5- My scar was kind of noticable to me, because i could feel it all the time. and others didnt like to see it, but all in all, now - about 6-8 months later, you cant tell at all. most of it is up in my hair, and so only a small part is below my hair line, and my hair covers most of it.



After surgery...

6-    :-)

7- sleeping on your back is acctually your only choice. you cant turn your head that far to the side to sleep on your front, and sleeping on your side hurts cause your head leans funny. on your back is a hell of a lot more comfortable then you think. and you wont be able to turn much in bed, cause it can be hard to fully use your arms to lift your weight for a while. the muscles all go up to where your neck was cut

8- no special brace or bandage. the scar was pretty creapy looking, but i just had a gause thing on my neck, andafter about a week or 2 i was able to slowly turn my head, and lift it up and down.  

9- i was in 5 days, but it explains more below

10- I was in ICU for 5 days, but that had to do with they where still draining my spinal fluid continually, to prevent it leaking form the incision. and that the hospital was a specialty hospital, just for spine surgerys, and had redone 1/2 the spinal floor, so there wasnt a room ready for me.  the drs gave me the option of staying 4 more days, and then having nurses check in on me in my home every couple days. but i was up and walking. it was very tiring, but i wanted to go home. My mom had come out to help me get what i needed. I was 25 when i had the surgery. the only thing i needed out of the hospital was a shower chair, and that was because your not allowed to take baths, and standing for a long time tired me out to much. i wanted to prevent myself from falling in the shower, which i never did.

11-      :-)

12- My dr took me off the pain meds i feel to early. at least while still in the hospital. the first few days they do back to back morphine- which didnt help me at all, but the percocet helped a ton. i never got addicted to them and when i was allowed to take them at home, i still kept with the every 6 hours. and it managed it just fine


I know that it takes a while to completely heal.  But...

13- I wasnt allowed to drive after the surgery, and infact my symptoms got so bad i couldnt see straight, so i didnt want to drive. But i wasnt allowed to drive for a month, but you wont want to turn your head so you get use to being home.

14-I was able to care for my 3 and 5 year old with in 2 weeks after my surgery, 1 of the weeks i was still in the hospital
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Avatar_n_tn
I'm 29 and waiting to see the nuro surgeon soon for my operation. I have had back and hip surgery. so I think I'm ok, but naturally a but scared. I just wanted to thank for answering all those question for Mellisa. Take care and thanks again.


Shannon
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