Oh dear I am sorry to hear that..it very painful though how do you manage that? it is true because that what the drug do with the prolong used...what about trying the use of magnesium oil...it help me a great deal..try it..I spray it on my skull ,neck before I go to bed and it usually help me because when I run out of it and I didn't have it and I did not spray it..I can feel the next day was so unberable..yes, I am glad I saw my Neuro Surgeon..so I am going to see 2 others and I am going to call Brain and Spine organisation and ask them who would they recommend to go to and let see from there..if I can bear it as long as I can but if I can't then I have to take this chance..because I can't put up with this pain, all of the Health Care Professionals said there is no cure...and the drug is only suppress the symptom temporary but the side effect can do more damage..so we basically just ...stuck...pray to GOD ..that is all we can and try to make each day as its best I suppose..try to do breathing exercise..ah..I am so scare when I sneeze ..or coughing..geeze..is worse than giving a birth...LOL
Thanks b2wc.
Yap am using Calming Massage Oil.I apply it after taking a bath and before sleeping. Coz sleeping at night is also one of my problems....sleep apnea. My knees are weak so am using a cane now. With my statoinary bike they seem improving though. A month after my surgery I had my therapy..It also helped. I spent almost one year for that..
Be brave b2wc. With God's help we will be able to surpass this problem....hugs.
But...honestly..if you can turn the clock back..would you had done the surgery???
Hi b2wc! I have heard of Mr Flint but I’m afraid I don’t know anything about him, only heard his name before! It is your health and you get as many opinions that you need! You need to feel confident in who is treating you! Before surgery I gained a 10 For pain rating on a daily basis and nothing seemed to help me! After the surgey I generally have a daily pain of about a 4/5 which I feel for me is so much better and I can help control that with pain killers! I also use hot and cold therapy! Particularly cold for when my head is bad!. Katie
I would have the surgery but it's not guaranteed a permanent fix. I hope the best for you and will pray for you.
Hi Katie, that is worth while then...is half of what you normally get, in that case I would do the same..mine is just stopped me doing anything ...if I bend down..that's it I have it the whole day I will not be able to do anything, I used to be a house bound since I took some of supplements I was recommended by a friend of mine plus magnesium oil and selenium and drinking plenty of warm water mix with fresh ginger and lime each day (2lts) I am able to walk from 10 m - 10 m but if I do more than that , there you go..I will be in bed for 24 hour...I can't lift anything..basically my life just stop..my world is collapse..I hardly out at all..
Katie said:
Hi b2wc! I have heard of Mr Flint but I'm afraid I don't know anything about him, only heard his name before! It is your health and you get as many opinions that you need! You need to feel confident in who is treating you! Before surgery I gained a 10 For pain rating on a daily basis and nothing seemed to help me! After the surgey I generally have a daily pain of about a 4/5 which I feel for me is so much better and I can help control that with pain killers! I also use hot and cold therapy! Particularly cold for when my head is bad!. Katie
Hi Sabrina,
Thank you for the encouragement, after seeing my Neuro Surgeon yesterday, I was really petrify because he is toooooo honest actually very blunt just told as it is..as he has done 10 - 12 a year..and some doing great..some OK..some coming back to have it done again as there were some complexity arises - so.. he also asked me to see another two and also recommended me the name as well after that I then can decide..he said if I can manage the pain now..not to have it..but if I can't managing the pain have then ..what can you do?...there is no managing it..as there is no drugs that can relief it...I have it all..the side effect of prolong usage of drugs is more dangerous to your kidney, liver etc..so...it is catch 22 ...you do not know what to do..I just really on dillema at the moment...are you on any treatment at all now such as drug? anti depresent (SSRI or SNRI)
Sabrina Haller Yeager said:
I would have the surgery but it's not guaranteed a permanent fix. I hope the best for you and will pray for you.
Hi b2wc.
Yap. I would have the surgery... But 2nd surgery?...NO I wont. In fairness, everything went well after my surgery. My recovery was fast. I didn't feel the symptoms for 4 years. It's only now that the same symptoms recurr. I now accepted the fact that NS is not curable. My NS told me then that if I would not have my surgery, worst thing might happen. I had slurred speech then , my coordination was terrible. I buckled and fell several times,etc. Am planning to see my NS again anytime this month.
To all Chiarians good luck and God bless to us.May we all surpass this battle.
Hi Iqueen, good luck to you on next appointment, No I don't have that type of symptom like you were, I only blacked out once due to the pain, however yes, my balance of course effected, but if I sneeze or coughing..OMG the pain is unbelievable and its last for a minute or so..but I just wobbly and unable to do what I normally do as I used to have such an active life work from 7am or 8am till 10 to 11pm...now lucky enough if I can stay awake till 10pm, anyway, let us know how are you getting on. GOD BLESS
I can't believe your neurosurgeon actually suggested you go and consult with others first. They are usually smug about their capabilities and knowledge of Chiari -as they should be. I would consult with another then simply based on your initial meeting with that one. I would have the surgery. Symptoms can be alleviated with surgery. My son had to have a second decompression done eight months after the first. He had scar tissue build up and boney growth that was blocking the CSFflow causing another syrinx. He is sooooooooooooooooooooooooooooooooooooooooooo much better after the surgeries. No it is not a cure, but it sure did help.
b2wc said:
Hi Sabrina,Thank you for the encouragement, after seeing my Neuro Surgeon yesterday, I was really petrify because he is toooooo honest actually very blunt just told as it is..as he has done 10 - 12 a year..and some doing great..some OK..some coming back to have it done again as there were some complexity arises - so.. he also asked me to see another two and also recommended me the name as well after that I then can decide..he said if I can manage the pain now..not to have it..but if I can't managing the pain have then ..what can you do?...there is no managing it..as there is no drugs that can relief it...I have it all..the side effect of prolong usage of drugs is more dangerous to your kidney, liver etc..so...it is catch 22 ...you do not know what to do..I just really on dillema at the moment...are you on any treatment at all now such as drug? anti depresent (SSRI or SNRI)
Sabrina Haller Yeager said:I would have the surgery but it's not guaranteed a permanent fix. I hope the best for you and will pray for you.
Dear Sabrian,
Thank you so much.. that is very helpful..I am positive now..that I am going to do it..I will keep you update..definitely..X.O.X>
Hi All,
Well I joined this site a few weeks ago because I did have the surgery 3 years ago and started to notices 3 months ago most signs of before surgery condition coming back. I noticed im taking my migraine meds almost everyday, I'm nausea most days and berimetric pressure causes issue with my balance. I'm tripping again, balance is bad, get car sick if not driving, absolutely can't look down or up or else i'll faint and can't tolerate fast movement visually or blinking lights. Anyone experiencing what i am? Well anyway I still work and love my job so I pray I don't get worse. My nerve damage effects the amount of time I can stand or sit so i struggle there but before surgery I would have had to leave my job because I was completely numb on my right side. OK so I'm "debbie downer" sorry but on a good note, check out the book online titled "Illness & Wellness" I'm working towards learning to live with the fact that nothing can fix us for long term so doing as much as I can to live comfortably is my number one goal now.
Good luck to everyone :) Carol
Hi Carol
I can feel what you're going through' Am experiencing the same symptoms as yours. I had my surgery in 2011. Yesterday I consulted a Cardiologist coz of my breathing difficulty. Am sked for 2d echo. Next I will see an ENT for my buzzing ear. My problem now is ACM is not curable and it has no meds. And the root cause of all these symptoms is my ACM. Why did I say this? I always have stomach - ache that bothers me every morning. I was given pain relievers for 45 days and it didn't help at all.
Me too do not know what to do....fellow Chiarians....HELP
Good morning and thanks for writing back. I'm not having breathing problems but it's hard to swallow pills and carrot like foods. No buzzing in the ears but sharp quick sounds make my brain hurt. Lights flashing I cannot look at. Fast movement also aggravates my head. I take 3 Dramamine in the a.m. to help the dizziness. Ok about my issues I will go back to my neurosurgeon only to give me the advice on where to go next. You definitely should go to specialist that treats your breathing issue. Is the stomach ache due to nausea? I'm going to see what progress and then move to the next step. It's weird though cause I have to carry my down pillow wherever I go. lol. Let me know how to test go. Good luck! Carol