My son Ryan turned 20 today...I am very thankful he is celebrating here at home instead of in the hospital. Although not much real celebrating going on. He has slept a good part of the day. Yesterday my husband and I had to call an ambulance to take him to the er. He has been vomiting just about everyday since his surgery and the doctors cannot give us a reason why his body is reacting this way. He is very weak and had to have IV fluids. They gave him a prescription for nausea and sent him home with instructions to see his neurosurgeon next week. Even with the medicine he threw up again this morning. I am at my wits end. They tell me nothing about my sons case is usual or the norm. He had so many setbacks after the decompression surgery. He stopped breathing,had blood clots,etc. Has anyone else experienced this after surgery,I mean the stomach issues? Also he is still having headaches,and will be getting migraine medicine for them. I guess I assumed his symptoms would go away after the shunt was placed but that has not been the case. I don't know what to do at this point!
So sorry he is having such a rough time. I had problems with nausea as well. I saw the PA at my NS office. She put me back on steroids which helped. I also made sure I did not take any medicine on an empty stomach. These two things did the trick for me. Hope the info helps your son.
Hi I have not had surgery and only been recently diagnosed (like 2 days ago). BUT, I have been vomiting for six months, NOT nausea, but violent vomiting & headaches (but not really as severe as the vomiting) & this has been cyclical every two weeks or so. I don't have any sick leave left & the kids are sick of me laying in bed (SO SO SO tired & weak - a yr ago I used to run 10 km each sunday & three times a week about 4 km). Before the vomiting my speech gets weird & I can't get very far fast - VERY lethargic. I wonder & this is just me thinking out loud for my situation: if it is build up of pressure in the head (hydrocephalus ?) & it sets of some gastro nerve that sets me vomiting wherever and anything for 36 hrs straight. It has not been an easy 6mths, so I commiserate.
Hang in there!
Sonj
My hubby is 2.5 years out of surgery and the nausea he had after surgery is still a problem. The NS said that during the decompression (he had duraplasty too), he said its by the vomitting center of the brain. It’s supposed to go away but it’s only decreased. During the first 18 months he list 35 pounds. He’s 5’11 and 134 pounds. His teeth are rotting from the back to the front. It’s been terrible. The only thing that helped was smoking marijuana. It’s illegal and Florida, so in order to get pain medication he had to quit smoking, so we are going to ask about the marinol pill. It’s man made thc, I’m not 100% sure of how it’s made, but its for people that chemo and have aids.
My son also has Chiari. He was 5 when decompressed and he’s perfectly fine. He will be 2 years in August.
The pain doctor said that the headache and vomitting is from increased inter cranial pressure. My husband is trying as hard as he can to avoid a shunt.
Everyone may think its bad to take opioids is bad, but my husband spends 18-20 hours in bed. My kids want their dad back!
I want my husband back. The non grouchy husband.
I am so sorry to hear about your son, my heart goes out to you! Your post didn't mention if he had a decompression recently, duraplasty or a recent shunt by itself. I am new to Chiari, my daughter who is ten had decompression with duraplasty just two weeks ago. I have done my share of my own research. I would call the Neurosurgeon ASAP, the ER can be a good help with things but most ER docs are not familiar with Chairi or the surgery standpoint. He cannot wait a week and not be seen with the constant vomiting, he will dehydrate and that is serious. I have read that you can get vomiting after this type of surgery when they open the dura, also all the nerves that were compressed may misfire for awhile after the CSF flow starts normalizing, or it's increased intracranial pressure and steroids can help. My daughter was on them in the hospital for 8 days and tapered off another 5 so 13 days total she was on them! They also gave her something in the hospital called Diamox which I did inquire about and it is for increased intracranial pressure. I don't know if your son received this or if its a personal preference of some Neurosurgeons to use it. If the Zofran or anti-nausea drug isn't helping there is definitely something going on if you cannot control the nausea, down at the ER they can IV anti-nausea drugs and they should've done this to see if it helped your son at all if he cannot take it orally. Maybe go back down until you get in with the surgeon and try it, he may need to be hospitalized now if he cannot keep fluids down! If your sons headaches are severe that can cause nausea also, but I am not sure if they are coming on together or separate! If your Neurosurgeon is stumped, see another one maybe within his group until you get an answer! I hope you figure it out and I wish your son well, I will pray for him, he sounds like hes been through so much already and that is just terrible :( If I can be a support to you if you just need someone to talk to or encouragement feel free to shoot me a message, I would be glad to help if I can :) Prayers for you and your family coming your way :)
have they checked his pressure? his shunt could be malfunctioning,clogged it something… it could be serious… I would definitely keep a close eye on him, and if he still can’t keep anything down, take him back…
I am so sorry! I also had vomiting after my surgery (11 weeks post op). After a 3 day migraine I called NS and was direct admitted. They ended up having to do ct scan, MRI and a lumbar puncture. I was diagnosed with aseptic meningitis. After another 5 day stay in hospital and 1 month of steroids and antibiotics I am finally feeling better. I have good day and I have bad days. I would call NS!
I dealt with nausea for 4 months post decompression. I had several MRIs and everything was found to be “fine.” My NS had no idea what else to do with me since dexamethasone and zofran were not helping. He referred to to pain management for a consult with an anesthesiologist. He used zofran along with a scopolamine patch. I eventually weaned off both medications in March and have had no issues of nausea. He said the nausea center of the brain is near the surgery site. Please don’t just suffer through. Keep asking questions and asking for help!
Katie
Sounds like CVS cyclic vomiting syndrome. It is horrible. My daughter is taking phenobarbital as a preventative and it is working! Also, in the ER to stop a cycle, an IV cocktail of Toradol/Zofran/phenobarbital. Works wonders!
Sonj said:
Hi I have not had surgery and only been recently diagnosed (like 2 days ago). BUT, I have been vomiting for six months, NOT nausea, but violent vomiting & headaches (but not really as severe as the vomiting) & this has been cyclical every two weeks or so. I don’t have any sick leave left & the kids are sick of me laying in bed (SO SO SO tired & weak - a yr ago I used to run 10 km each sunday & three times a week about 4 km). Before the vomiting my speech gets weird & I can’t get very far fast - VERY lethargic. I wonder & this is just me thinking out loud for my situation: if it is build up of pressure in the head (hydrocephalus ?) & it sets of some gastro nerve that sets me vomiting wherever and anything for 36 hrs straight. It has not been an easy 6mths, so I commiserate.
Hang in there!
Sonj
I'm very sorry to hear this. I will be praying for your son. I have a 20 year old son, and I can imagine how difficult this is to see your son like this. I pray that he starts feeling better soon and on his way to recovery. May he be able to celebrate his birthday real soon! Love & prayers going your way!
I’m so sorry that Ryan is having such difficulty. I had my first surgery on Jan 16, then a second surgery to a CSF leak on Feb 6, then finally a shunt placed on feb 20th. With the repair(second surgery) I also had a Lombard drip placed…was bed written for 4-5 days to relieve CSF fluid. I was constantly filled with nausea. I couldn’t take the smell of ANYTHING! Food, perfume, cleaning producproduc, esespecially saline. They prescribed zofrain. It helped a little but I couldn’t keep anything down for weeks but little by little I came around. I just had to wait it out. I couldn’t get around because I was soooo weak from not eating, I couldn’t eat because i was soo weak. I started out on strawberry applesauce and/or toast. Then worked my way up to protein bars, but had to be careful because I’m on blood thinners because of a clot. I have gotten a lot better but I still have the nausea from time to time and it lasts a few days. Just try to keep fluids in him as much as possible. I know its scary but he will come around and get his strength back. Don’t quit! It takes time and dont be affraid to use the pain meds like I did. It will cause biv setbacks. He may still experience the headaches for a while or maybe never again . U have to remember surgery isn’t a cure, it may help with the symptoms. I pray that he reco ers well. My headaches are much better bur it took me some time to get there. Hang in there. U all are in my prayers!
Thinking of Ryan & learning so much for all the posts! Thank you! Keep nagging those drs & nurses - find a nurse to nag on your behalf!
Aseptic meningitis or "chemical" meningitis show up typically 2-3 weeks after surgery. You didn't mention how long ago it was, but just wanted you to know that just in case. I think (like others have said) that they need to check his pressures too, as IH can cause a lot of vomiting. I'm so sorry he's feeling so bad, and that no one is helping. I can imagine that is horribly frustrating and upsetting!
I hope u have.the.right.neurosurgeon. i brought my.daughter.to.two that.said.she.was.fine, nothing wrong, go.live.ur.life. meanwhile, she has.chiari, tc, retroflexed.odontoid, basilar.impression, cranial.settling, EDS, etc, and.guess.what? She needs.more.suegery. dont.trust.a.dr. just because hes.a neurosurgeon. U need.a.GOOD chiari.specialist who kmows.what.they are doing. I.did.a.lot.of.research and.found someone we.love. He kmows all.about.clots.too. Good.luck.
It definatly could be caused by the anesthesia. I had laproscopic surgery years ago and threw up every day for 2 weeks straight! So, now I have to tell doctors that I am very sensitive to anesthesia. The pain killers could also be affecting him. Many anti-inflammatories and meds with tylenol (Hydrocodone) can really irritate the stomach. Or if he is not used to taking opiates, it may be tough on his body. Good luck, I hope he feels better soon!
This happened to my daughter after her 1st surgery about 3 weeks out. Her headaches got worse and she started throwing up. We took her in and they did a cat scan and found fluid on the inside of her cerebellum which wasn’t there before the surgery. She went back into surgery.