Hi. I am new to the group, and I was going through the postings. It sounds like you are really struggling. The nausea is quite scared because, if you are like me, there is no warning before vomiting. I have done so while driving twice. The only thing that helps at all is chewing ginger candy (Trader Joe's and Whole Foods- cheaper at TJ's). Sometimes I don't even have to bend over to feel like I want to cut off my head! I also sympathize with your difficulty with passwords. But I an glad you remembered the one for this group. I am sending good thoughts and hope you can get some relief.
Call ur NS and let him/her know what is going on and do not get injections or take meds until u speak with them....
I had an MRI over a year ago no i havent had any of those ruled out i am going to go back to my doc but they just want to botox in me to manage headaches. well thats the neurologist wanting to do that they keep trying to push meds on me they already gave me metabolic acidosis and had to stop that bologna. im starting to wonder if i should just get an MRI and then go see me NS?
Hi and welcome back !! Sorry that you ate having issues again tho....and I am not sure it is bcuz the tonsils were left in, it could be not enuff space was made and you have another obstruction OR it could be a related condition and not the Chiari.
Did you have Syringomyelia, ICP, POTS, disk issues, sleep apnea, and ehlers-danlos ruled out?
What all was done during your surgery? Do you know if you had a dura patch placed, if so what type?
Did you have a MRI post op?...One since you have had symptoms return?
I have not posted in a very long time, i had forgotten my password. good news i figured it out! So i am almost 2 years post op and not doing so well. i was wondering if anyone has had the decompression where they leave the tonsils in? i'm having a lot of symptoms again and i'm worried they might be acting up in there i guess you cold say. the burning feeling in my neck and shoulders is getting old! and not a day goes by without a headache. not to mention how awesome it is to be nauseated and dry heaving multiple times a week if not day. and who doesnt love bending over and feeling like your head is going to pop off! sorry to vent like this. i was just curious about the tonsils thing.
thanks in advance for taking the time to read this.
U r very welcome,,,,no worries,...and thanks, my surgery has helped me quite a bit, I am glad I had it.
I hope u decide to stick around and post questions and allow us to share our experiences with u.
Appreciate your email response. That was very kind of you to take the time to write back. My name is Darin and I live in Southern California. It is very nice to meet you. I do hope things are a little better for you after your surgery. Thank you again!
Hi and welcome to the Chiari forum.
There are many of us that have had surgery,....and the 2 members u replied to have not posted in a while., u can send them a PM (private message) this will generate a email so they know someone is attempting to make contact.
Many of us have posted our surgery experience in our profile page journal....click on a name and see if they have one....or ask : )
Dear MAC2917 / JAX85,
I was wondering how both of you are doing ? My wife was also diagnosed with Chiari and is contemplating surgery. The neurosurgeon is Dr. Golshani. Recently my wife symptoms has been increasingly painful and it is really difficult to see her endure so much pain. It is a helpless feeling to see your love one suffer and endure so much. I do hope the both of you are feeling much better as I know the surgery is not a cure. Best of luck to the both of you and hope you can provide some insight regarding your surgeries. Take care and thank you.
Yes...hair loss post op is normal as it is a result of the trauma of the surgery...many of us also have thyroid issues like Hashimoto's...so that can play a role as well.
I posted a huge clump of hair that came out after I washed it post op.....
My hair did all grow back in and thick as ever....
Do get checked to see if u have an issue such as thyroid that may be causing ur hair to thin.....also look at ne meds u may be on....
So I am wondering if anyone has experienced hair loss? Like a lot of hair loss? I'm starting to freak out because of all the hair that's fallen out and how thin my hair is.
Hi and welcome to the Chiari forum.
Wow ur surgery were within days of each other....
The super sensitive scalp is pretty normal post op....even to have pain in areas outside of the incision, that is usually from the halo.....
I hope u continue to post ur post op journey with us : )
I'm curious on how you are doing since surgery? I have the same doc as you and had my surgery oct 9 2012. I am feeling better just a slow recovery. And my scalp is super sensitive :/
Sexybare had Dr Oro do her 2nd surgery and just got home so she may be a little slow to answer as she is healing:) Dr Oro is my NS as well and he is brilliant. The little sticker behind the ear is great:) I even asked my primary dr for them when I was nauseated at home after....I forgot
We're all different, but we'reHere for you!
Thank you for the reply. Any information is helpful.
Hi and welcome to the Chiari forum.
We r all diff in how we r post op, I had issues with the pain meds and was in ICU a few days on a liquid diet until meds were changed and I was able to keep things down,
Make sure that all related issues r checked out....EDS, disk issues,syrinx, sleep apnea...do u have a CSF obstruction and will u have a dura plasty....things u will want to know.
I am 3 yrs post op and was well pleased, I went with Chiari specialists.
I am not familiar with the Dr u r choosing.
Hey! I'm glad you are happy with your ns. What specialist did you go to if you don't mind me asking? The one Im going to is a general neurosurgeon, he's not a specialist.
I ate reg foods the next day. 7 days post op still have trouble swallowing due to sore neck muscles but keep drink near to help. I only felt nauseous a few times but they gave me a patch behind my ear before surgery for it and stuff in iv right aafter, so no sickness. I have never been more happy with my care before, during and after surgery. First surgery sucked. Then I sought out the best specialist in the world and he is the best..... as long as you are confident in your ns, you will do great...hugs Dana :)
Thank you! After I had my wisdom teeth removed I had to drink protein shakes for a while so I didn't get malnourished. That might help you if you are having trouble with that limited amount of food.
I am only just now beginning to eat regular meals, >2 mo. post op. I ate nothing at all in the hospital. I think it's something peculiar to me, as I couldn't eat after I gave birth either.
I've lived on mashed potatoes, cherries, ice cream, & miso soup, for weeks. Oh, & lots of frozen fruit pops. I think you might just have to see how you feel after surgery, and eat what you crave (even if it doesn't seem to make sense).
Best of luck to you!
I don't know your Dr but I can tell you I ate solid food the night of my surgery. It depends on how your stomach is as some are nauseated. I remember being careful if I coughed or sneezed for quite sometime but was okay:)
Im also wondering what kind of foods you can eat after surgery? Can you chew, or are you on liquid mush for a while. What happens if you cough?
...Sry so many questions.
I would like to comment that Dr. Golshani was very nice, understanding, and seemed capable. I just want to make sure. It is my brain we are talking about.