I saw my nerologist on wednesday morning and a few things he said are buggin me so where better to ask for advice than here? After tellin him my symptoms he told me that after surgery i can expect to go completely back to normal, no more headaches, no pain, no more dizzyness, no more falliing dat all my probs rite now will just go away is he rite? Also he told me to expect to lose weight after surgery becoz i will not feel like eating is dis also true? And the last thing he said is i will be perfectly fine in 3 to 4 weeks after i have the op?? Ive been suffering alot lately and seem to be getten worst by the day will be getten my app for surgery dis week and am really scared and nervous.
I hate to tell you this but your NL is very wrong.No one ever comes out of surgery completely back to normal. My symptoms are far worse post surgical. You may loose weight, because you are too sick to eat. I think you really need to consult with another dr. Yours is dead wrong. Please don't think I am being mean telling you this. I am just being honest. Know you can always ask any questions on this discussion. You will find caring, intelligent & honest people here.
Chiari affects us all differently. Surgery is the same way. Unfortunately surgery isn't a cure. It is just a form of treatment. It is there to alleviate pressure and help the syrinx (if there is one) You may come out of surgery with less pain or more. In my case surgery was a success. I don't know where I would be had I not gone through with it. My NS told me after surgery...that my skull was eggshell thin from the pressure, that it was good we got in when we did. Not sure what could've happened. It took me over a month to recover from surgery. I was in the hospital over a week before they sent me home.
It's a really tough decision to make. :\ You're best bet is to do a lot of research. Talk with people on here. We have all gone through different (similar) experiences. And get a second, even third opinion if it helps. Look for a NS/NL in your area who is better informed on Chiari. There is a section on here to recommend/find a doctor, at the top of the page. Hope this helps!!
Thank u so much for ur reply dats exactaly what im lookin for honesty and im glad ye all will be honest with me i taut he was wrong but he seemed so sure of himself answered all my questions with such certainty. I live in ireland and truth be told there is only one nerologist that comes to the hopital where i live he covers the hospitals in the other counties too which is wide and from what ive heard there are only 3 nerosurgeons in ireland which doesnt give me much choice im kinda stuck with dis nerologist and nerosurgeon which is pretty scary. I have never heard of chiara in my life until i was diagnoised with it even thou i was born with it and to be honest with everyone i feel like its all a big joke to my doctors and there not taking me seriously. I dont think they understand how seriou it is. sorry for rambling on thanks again
love caroline
Hi alicia,
I do have a syrinx aswel as the chiara which if im honest kinda freaks me out becoz im paranoid if i turn in a certain way or fall werid ill do damage. Its good to hear good stories about surgery but as i said to tracy i feel like its a joke to them i feel like they expect the op to go well and if it doesnt then its my fault im soooo glad to have everyone on this site and i have people who understand and get me. Being from ireland there is only 3 nerosurgeons here as far as i know and only 1 nerologist in my area as i said i dnt really have a choice and it annoys and upsets me as i feel they just dont understand or get what chiara is like to live with it affects everything. I get so fustrated with the doctors here im not very good with words so trying to explain how i feel to friends and family is hard. Thank ye both for taking yer time to reply to me.
Hi lori thanks so much for replying but ireland is small with only 3 nerosurgeon i think i would love to be able to find a doc who takes me seriously thanks again
Love Caroline
lori said:
Hi.....
Tracy and Alicia said it all!!!
I would find a NS who is well educated in Chiari and see what he/she has to say.
Caroline, all the ladies are correct in everything they said. We all are individuals who are going to react to surgery differently. But, in a whole, we are all the same. In my my case, I am 6 months post op and still very much in the recovery process. I just started driving a little. Most of the time, I don't drive by myself. My headaches are better, but not gone. My balance isn't great still and I had a csf leak and now have fluid build up that needs to disapate. So, for a doctor to tell you plain and simple that all be fine in 3 to 4 weeks is rediculous. You may do very well and feel pretty good, but you won't be completely healed for a long time. Take it from me, it takes time, that's for sure.
Thank u so so much for replying u've really helped me thanks agin
Christine said:
Caroline, all the ladies are correct in everything they said. We all are individuals who are going to react to surgery differently. But, in a whole, we are all the same. In my my case, I am 6 months post op and still very much in the recovery process. I just started driving a little. Most of the time, I don't drive by myself. My headaches are better, but not gone. My balance isn't great still and I had a csf leak and now have fluid build up that needs to disapate. So, for a doctor to tell you plain and simple that all be fine in 3 to 4 weeks is rediculous. You may do very well and feel pretty good, but you won't be completely healed for a long time. Take it from me, it takes time, that's for sure.
Thanks so much for takin the time to reply everyones advice on dis has been great and very helpful thanks again
Love Caroline
Katie Gleaves said:
I am 2 months post op. For the most part I'm am alot better than before but recovery from the surgery is far from immediate. The surgeons say three months but in all honesty I'm no where near close to back to normal. I have fallen alot myself but the majority of gaviry issues have been my trashed arthritic knees. From the input I have gotten from postopers is recovery is more like 6 months to a year. I have had several setbacks. Way too much time in the hospital. No surgery isn't a cure but if you can't take the meds or the meds aren't helping at all you pretty much feel there isn't any other option. I tried every med I could but I have numerous allergies and the majority of fluid meds and neuro meds are sulfa based. So I couldn't try but about a fourth of the different meds that have helped others. Like everyone has said everyone is different. Wishing you luck
I hope ur doin well and i wish u all the best for tomorrow let me know how u get on hugs nd prayers.
Love Caroline
Katie Gleaves said:
Just glad we can feel free to be open here. Everyone here understand because we are similar.
I'm actually kinda having my little pitty party today as I call all over trying to find places for the kids to be this weekend. So not ready to be back in the hospital tomorrow.
Caroline Power said:
Hi katie
Thanks so much for takin the time to reply everyones advice on dis has been great and very helpful thanks again
Love Caroline
Katie Gleaves said:
I am 2 months post op. For the most part I'm am alot better than before but recovery from the surgery is far from immediate. The surgeons say three months but in all honesty I'm no where near close to back to normal. I have fallen alot myself but the majority of gaviry issues have been my trashed arthritic knees. From the input I have gotten from postopers is recovery is more like 6 months to a year. I have had several setbacks. Way too much time in the hospital. No surgery isn't a cure but if you can't take the meds or the meds aren't helping at all you pretty much feel there isn't any other option. I tried every med I could but I have numerous allergies and the majority of fluid meds and neuro meds are sulfa based. So I couldn't try but about a fourth of the different meds that have helped others. Like everyone has said everyone is different. Wishing you luck