surgery!!!

[mishell24]

hi does anyone know how long it takes for decompression surgery????

[jennylynch]

it really depends on ur surgeon my decompression took 1 1/2 hours. that was it my family was so surprised because we were told about 3 hours

[10Ebtrfly]

I just wanted to say hi and that I'm thinking of you!  I hope today is a good day, and that you're well enough to smile!  I do understand your want to make your "family and kids proud".  My husband & I weren't able to have kids before this happened, so as a 32 yr old teacher who is now home bound, I worry that I'm disappointing my husband bc there are things I can't do, and he's got more things to do at home than he should, especially after teaching and coaching all day!  He tells me that "your job is to get better!  We and you can't move past this line if you're not getting better, and you're the ONLY one who can work on that!"  He's SO supportive, and by looking at the pictures of your kids...they look happy and loved.  What child could be disappointed by being loved?  You're a good mom/mum :) !  Take care - eyrin

[selmaS]

  Hi...I am so sorry u r having a set back...may I ask when was ur surgery....Nov 18th?....4 months post op...this is typical at this point...u will have ups and downs and the return of symptoms as u heal.....take things slow...do not overdo and as long as the symptoms r not brand new, or worse than u had b4....and they should be short lived too...u should be ok.

Chiari recovery is a roller coaster ride...and there is not a lot of post op care offered.
In May I will be 2 yrs post op and feeling better than when I was going on 1 yr post op...u do get better with time...so give urself time b4 u count urself out...

  Go slow....take it easy u r still healing : )

   "selma"

[mishell24]

seen eye specialist yesterday said everythink fine there and that the symptoms with pain behind eyes suggest pressure,the specialist nurse never came to see me in my app when i asked eye sp she said that there was a note saying that she has ben unable to contact mr malluchii but i will hear of them next week.....i am so scared now keep thinking ill need anther operation...i was doing so well with all my symptoms going away and was starting to plan my carear meant to be starting collage in september to become a social worker and now im wondering if this is going to be possible with these symptoms or with what happens...i hope that they go away so i can get on with my life normal and make my family and kids proud of me,i feel so depressed now xxxxx

[selmaS]

Here r 2 links I hope they help.

http://telemedicine.orbis.org/bins/volume_page.asp?cid=1-2630-2679-2684

http://www.conquerchiari.org/subs%20only/volume%205/issue%205(3)/cerebellar%20slumping%205(3).asp

[mishell24]

all thats coming up is droopy eyelids?????

[mishell24]

i cant seem to find anythink on this do you know any sites xxx

[selmaS]

  No worries...good luck !!

   "selma"

[mishell24]

well they said to me after surgery that they chipped quite a bit of bone away so im wondering if it is that now...im going to google it now and have a look and when i go tommorow will mention this thanks xxxxx

[selmaS]

  Hi so sorry u r not doing well...do u know if it is cerebral ptosis? Also know as brain slump? this can happen if too much bone is chipped away.....

Please get plenty of rest...no lifting or bending as it will only make u feel worse.

  and keep us posted : )

   "selma"

[mishell24]

hi well they never phoned me so i phoned up the secatery and she said tha they were so busy with surgery and stuff so when i go tommorow to see eye sp they will be coming to see me in that appointment so hopefully get sumwere...im glad you getting sorted now i must say that walton is a great hospital and they will get you sorted...as in my case now there looking at everythink,been seeing them evry 2 weeks so they could see how i was.....

[niki3350]

Oh Love im so sorry that things are not good for you but at least they are getting you sorted and sounds like they are not going to leave you in pain and in limbo!!!!

I am now officially a out patient at walton had fab appointment with mr brodbelt, confirmed chiari 1 with 6mm decent, have been reffered to see dr fletcher on 30th march as they not sure if it just chiari or other neuro stuff too.

Please keep me posted on how you are doing Honey and try to rest as much as possible, hope you get that call today and it wont be long b4 you are sorted.

Praying for you

Niki x x x

[mishell24]

hi all not been on for a while as i have been really bad with my headaches,was going really well up until end of january then pains come back,had few funnt turns where i could not see and lots of pain behind eyes,had a ct scan yesterday and was back today to see specialist nurse who had myresults there and said that where they done the surgery and shrinked the tonsil things somethink has dropped back down and she is speaking to the surgen this afternoon to see what he wants to do.....she showed me my previous scan where they done surgery everythink was compact up but now this extra piece has dropped down...so waiting for a call this afternoon to see whats going to happen...im also seeing eye spesilist on friday..had about enough now feeling really low...i thought that i was going to be ok...ive also got to have i c p monitoring done again xxx

[niki3350]

Lovely to hear from you Honey, glad all went well and that you now feel a little better, rest up now and dont overdo things.

Thinking of you
Hugs
Niki x x x

[selmaS]

No worries, u do need to take the time to recoup...know we r still here, and ready for listen when u r ready to tell all the details : )

Still sending prayers for u as u recover : )

"selma"

[mishell24]

hi all just to let u all know that out of hospital was in for 5 days but was very poorley at home so this is the first time ive felt up to it...but im doing well and everythink went all good  in operation thanks for messages xxx

[selmaS]

Congratulations!!!

Do post on the surgery date thread and have someone post updates if u can.

Know we all will be thinking of u sending prayers and good vibes~~~~ : )

The nerves r normal...read my journal...I had them too : )

"selma"

[niki3350]

Thats understandable Honey that you are scared, looking on this forum I think it only natural that you would be!

Thinking of you and will keep checking on here for your post after surgery!!!!

Sending you all the love and luck in the world Honey.

Take care Niki x x x

[mishell24]

r thanks alot im really scared now cant stop crying think its me nerves.... i think that walton are good ive heard lots of good things about the nuerosurgens there and also mr piggott.....i hope you get sorted soon and get app 4 walton soon too.....and ill be back on when im well enough to let u all know how im doing...thanks again x

[niki3350]

Oh honey that fab news, will be thinking of you and praying all goes well. hope to be going to Walton myself soon honey for 2nd opinion.  

Do they listen there and are they good.  Have heard good things about mr broadbent and mr piggott, you are under mr malucci is he good also.

Im being messed about something terrible and just want to attend Walton now as have no faith in my local hospital what so ever, and even if they do start to step up to mark I still want to go to Walton as just dont trust staffs and leighton any more.

Would love to hear back from you and sending you all my love, go onto links here Honey they are fab with suggestions for what to take into hospital with you etc.

Hugs
Niki x x x x

[mishell24]

hi just got my date 4 op go in on 18th november xx

[n40066]

penny had her surgery today and it was 2 1/2 hrs!  good job!!

[selmaS]

http://www.medhelp.org/health_pages/Neurological-Disorders/-What-is-Ehlers-Danlos-Syndrome-EDS/show/730?cid=186

Yes, EDS is a related condition to chiari...and those with it can be very slow to heal....bruise easy, have hyperflexible joints...with that said, joint pain as well.

There r several types of EDS and we can also have issues with rejection, like some of the patches used for PFD.....even issues with meds....developing allergies to meds that once were ok to use.

Keep me posted on what u find out with the ultra sound

"selma"

[mishell24]

oh and the lump is not dead big but qiute big...it feels like its now gone into 2 lumps fom the one that vit started...