how bad is the pain after surgery?

[AmyLeigh155]

I was diagnosed wtih Chiari Malformation Type I just about 2 weeks ago.  We have scheduled surgery with an execellent neurosurgeon for next Wednesday.  I not only have the extension of the cerebellar tonsils, but alos have syringohydromyelia.  I am pretty nervous about surgery, but is seems simply enough...if you are a neurosurgeon.  

What is the typical pain reaction after surgery, if anyone would like to let me know.  This was a shocking diagnosis at first, but totally makes sense.  I only became really symptomatic about 2 months ago, but realize other problems I have had all these years have been because of the Chiari.

Thanks to all

Amy

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing where ur DH had his surgery....We have had a few that went there as well and that info is on our Drs list...please look to see if the Dr ur DH had is on our list, if not we would love to include it : )

[katvon]

my husband just had surgery 2 weeks ago at mass general hospital.  i believe several neurosurgeons on staff there perform this surgery.  we chose dr. borges after meeting with several other neurosurgeons in massachusetts.
ultimately chose this doctor and location because we viewed the surgery as a team effort.  the hospital was as important to us as the surgeon.

[selmaS]

  Hi and welcome to the Chiari forum.

We have a list of Drs both as a thread and in our Health Pages....I bumped up the thread so u can look at it....the list is not a referral nor does it mean all Drs listed r true Chiari specialists.....use the list to research Drs...not everyone will find a Dr close to home so u may need to travel.....

Post a new thread with names of Drs u feel u may visit and ask for PM's of info on the Drs.....

[FriendofChiariPatient1289]

I'm in NH and looking for recommendations for a competent Neurosurgeon and hospital that has done many of these decompression surgeries. Any feedback will help. Thanks

[selmaS]

  At this time of yr, u should be concerned about covering the scar if u r outside for ne length of time...U do not want to get a sunburn on the scar tissue....

  

[Rylanesmom]

Also ski hats are what Dr said to use if you use a hat...I was worried about them catching my staples

[Rylanesmom]

I bought hats and wore none...hair grows fast and I don't really care about the scar like I thought I would.  I cut my hair very short look at my pics if you would like:)

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing ur post op experience...I hope u stick around and continue to post : )

[monica425]

i toally agree,i had the surgery 2 years ago,and the pain was bad,but with pain meds you can manager it,always tell the nurses& dr that your pain is a 10,because you will need them when you go home,and make sure you have a support system.i've been fine every since headaches gone no more ringing in the ears,all those things are gone and not missed : )

[Susan979]

Hi Jason -
Was wondering how you are doing now. I just made an appointment with Dr Spetzler here in Phx to see if I am a candidate for surgery. Are your origianl chiari symptoms gone? Are you happy you had the surgery?
Susan

[selmaS]

Hi and welcome to the Chiari forum.

Thanks for sharing your experience...I am so sorry u felr like u were booted out b4 u were ready and with no pain meds,.....

I remember going home, feeling like I was 100% better and it was deff from the meds....I also learned from members here that became a zipperhead b4 me that the old symptoms can resurface, but may go away again...it is all part of the healing .

I hope u  have more positive results from ur surgery...and stick around to share ur experiences and enjoy the fun threads we have as well.

"selma"

[jasonmcdowell]

I don't know how much I can add to this post, but I just had Chiari I surgery seven days ago. I was walking within 24 hours with no assistance. Sounds good right? I was hyped up on Toredol, Morphine, Percocet, Valium and felt pretty good aside from being stiff in the neck. Truth be told I felt better then than now. I never left the ICU due to a shortage of beds, and left straight from there. They didn't have much of a conversation with me about pain meds and sent me home with none. I entered for surgery on the 21st at 7:30 am and left on the 23rd 7:30 pm. I think that is hopeful for most but again, I didn't have much experience being on pain meds and didn't know I was going home with none. I only lasted till 2:00 am the next moring before I started to feel lousy and by 6:00 am I was going into shock. I took some Fioricet, which was enough to stop going out of shock, but real pain meds is neccessary.
Don't let me freak you out too much. Just make sure you've got something good before you go home. Percocet with Ibuprofen tends to be enough for me for my pain but my body has become so stiff I can't stand up straight. Sorry,not trying to scare you again.
My best suggestions is to rate your pain a few points higher on the 10 scale in the hospital than it really is. Remember how much those pain meds are doing, I got ahead of myself. Don't let them try to guilt into leaving earlier than you feel ready to. Absolutely don't leave without a good prescription and fill it on the way home or soon after. Take it easy for a few days to week after getting home.

[rod44]

Neuropathic pain
is a complex, chronic pain state that usually is accompanied by tissue injury. With Neuropathic pain, the nerve fibres  themselves may be damaged, dysfunctional or injured. These damaged nerve fibres send incorrect signals to other pain centres. The impact of nerve fibres injury includes a change in nerve function both at the site of injury and areas around the injury. Possible risk during Chari or any surgery

[gem10]

My daughter was 13 when she had the chiari surgery. She didnt have any pain until she had to taper off the steroids.  That was about 6 weeks after surgery. Then it was tylenol and Ibuprofen.  You have to be tough and ride the storm out.  My daughters neurosurgeon said it would be a hard 3 month recovery and I was happy he was honest with us and he was exactly right.  You will get through it.  It is a shock. The surgeon said that the malformation happens when you are forming as an embryo, and that symtoms dont occur until later in your life. The symptoms can be brought on by some sort of trauma such as a car accident.  My daughter had horrible headaches and thats how we found out.  Make sure you talk to surgeon about neck muscles after surgery.  Cutting through those muscles can create new problems. Do as they say and turn your head side to side to keep from forming scar tissue. Good luck

[selmaS]

http://www.medhelp.org/posts/Chiari-Malformation/surgery-on-the-horizon/show/1037137?personal_page_id=542582&post_id=post_4813946

This is yet another thread that has a list of what to take to the hospital....

[selmaS]

That is a good tidbit to know...thanks!!

[majerus33]

thanks this all great. I have a friend who works as a nurse in the ICU with patients who have brain surgery, she said they keep it warm because shivering causes inner cranial pressure, swelling.

[selmaS]

http://www.medhelp.org/posts/Chiari-Malformation/pre-surgery-hospital-question/show/734856

this is a link to another thread we started in Jan for the same thing what to take to the hospital......

[selmaS]

I would imagine if it is loose enuff it should be fine....all depends on the dr and how they have the head wrapped.....I had an ace like bandage wrapped around my head that looked like I don't know and my hair spouting out the top like a volcano...lol....

Of course that was while in the hospital and then they took the ace bandage off.......and with all my hair on top...I wouldn't have been able to wear a beanie.


Yes and the fact that the hospital was warmer than I expected...could have been the meds...so do bring a lighter PJ and a warm one just in case he is cold.....I only had warmer ones and had to send my DD to the hospital's little store for lighter PJs.

ear plugs was on our list bcuz of the noise at night.....the staff seems to feel it is the middle of the day...and noise with chiari don't mix.

I also had facial wipes and hand lotion.

Hardcandies ...very good!

CD player.....and earphones.....I wasn't into having the TV on ....when there is more than 1 in a room the other may have theors on and I can not stand 2 diff TV's on at once....so the cd player worked well...I even had audio books.( bring in after he is in a regular room)

[majerus33]

sweet..button up pj's is a can do!!! I will get on that right away. I have a friend making some beanie hats for him so he doesnt freak out the kids..lol. Did anyone use these or does it hurt the incision? they are hand knitted and i asked for them to be oober soft

[jorlex137]

I forgot about the button up shirts!!  That was a big deal for me as well!!!  Good one!

[mama2twobabies]

I wouldn't get a shower seat, but a handheld shower head is a good idea.  He can take a shower without getting his head/stitches/staples wet.  Also, I bought the bath wipes for bed-bound people so that when I didn't feel like getting in tub/shower, I could still feel clean(er).  Also, I needed lots of applesauce--different flavors made good variety.  Button up pajama shirts are a good idea too.  Just a side note for the hospital:  I got really hot in the hospital room, even with the thermostat down all the way, so I had a little tabletop fan brought in by a family member so I could stay cool.  Getting hot while being stuck in a hospital room/bed is not fun!  Good luck to your hubs!

[jorlex137]

I had brain surgery for something different and learned I needed J&J Baby Shampoo to wash my hair, which I personally wanted to do!  I had the water pressure down and did fine.  I had 42 staples and the scalp was tender!  
But they did a great job with pain management.

When people ask you what you need.  Ask for a errand runner.  If you do not get your meds at the hospital but your going to get them at your local pharmacy, I suggest you have one person taking you home while the other is doing the drug run at pharmacy.  

I slept A LOT!!!  Everyone is different, but sleeping through it worked great!  I just stayed on the couch and slept, when I'd wake I would wash movies that people loaned me.  

Also this may not apply because of my surgery site, but I hated eating thing that required a lot of chewing at first.  It hurt my head.  

This was just me having brain surgery but was along side of my head.  

[selmaS]

Hi...I wouldn
t go out and buy one....I didn't want to take a shower in the begining bcuz I didn't want the water to hit me in the head...I am short......and it's a given that would happen no matter how I adjusted the shower head..so I took baths, and I needed help in and out.......my DH washed my hair ay the kitchen sink which worked better for me......but everyone is different.

If ur DH is tall and would be able to adjust the showerhead, and is having balance and dizziness then by all means get the shower chair....oh and make sure it is smaller than the tub....I got one for a diff surgery and it caused so much water outside the tub I had to stop using it.

I think we have a list started for what to take to the hospital and I believe it includes what is needed at home as well...I'll look for it and PMu the link.

"selma"