Recurrence of Chiari malformation

It wouldnt though kat..so are you going back to see him again? surely it must be better than before you have the OP?

I as well have the weird speech my husband says I babble . I hate that there is so many of us mislead and it's good some days bad some days but not better then b4 but I honestly can't say what would have if I didn't have the surgery cause I had 95percent blockage ... so I had my mri with in that week they did the surgery but my doc also never really had much experience in the department

Yes, it's somewhat better, but as I stated the same symptoms are slowly but surely seem like they're coming back. What do you mean by "it wouldn't though"?

Well, I am going to have an Op BY THE END OF MAY , my NS told me that the main goal for surgery is to relieve the pressure of that obstruction on the CFS Flow hence chiarian have the headache mostly when its sneeze, coughing, laughing, when you are constipation, bendown, doing anything straining...does it ''fix permanently''??? my NS said: its depending on individual?? and the NS...IT MIGHT BE ... it might..perhaps when your NS done your decompression he did not see any complication hence he told you that he fixed permanently..unknowingly something came up (other condition...) because according the specialist..if there are no other condition and the NS done a great job (i.e cutting enough skull/cutting enough tonsil/cover enough dura..etc..etc..doing what heshe should do) there should not be a problem..as there were lots of chiarian who had done decompresson can have full potential and enjoying their quality of life and they do not join this site..they are busy with their life..ashame really..beacause..we really need people like them who can help us..give us hope..and support us..and also encourage us...share their joyful experience with us..unfortunately..that is human being attitude..sometime they forget..hence..I really into it..I am so confident that my decompression will be victorious and I AM GOING TO BE CARRY ON HELPING AND PROMOTING THE SUPPORT GROUP AND HELPING ALL CHIARIAN TO LIVE THEIR LIFE TO THE FULL. SO DONT DESPAIR... carry on..go back to your NS or have second opinion..if need be get another decompression..this one will be a successful one..and YOU WILL BE FINE and never have any pain no more.. do not forget to drink plenty of wters, take some anti oxydant..(such as: grape seed extract...) change your life style --- eating healthy..try reducing food with glutten..fried food..junk food (read from website why is that...) and be positive..as what you thought become things..so remember always think positive...!!!

Call every day! You have a right to fight for proper health care. Keep calling. Don't give up!

Guess what Yeltzer, if that was me, i will go really persistent and call the manager   or PALS this is not happening, they have to locate me now!!, this is not a joke, they will not do that to cancer patient, why they do that to us patient?, honestly it will not happen to me, I promise you..it is disgusting

Totally agree! And then just for them to understand how many complications you suffer with is a whole different story. There are so many people suffering with this. I don't understand how it can still be so silent! I'm praying for you! You should try to attend a Chiari walk near you! You can get people to go with you. Especially people unaware of what this can actually affect someone's every day life. And it also builds up money for research. The conquer Chiari walks are around the nation every September. And if there is t one close enough to you, you can start one! We have to be advocates ❤️

Hence,,,giving me a feed back than yelt..as i can talk to all of them..which i dont need to put any name..as i like to see my MP about that..and pass it on to our health minister..but please do not give up..i do not think that the health care professionals are ignorant..they are really have a little knowledge about our condition hence they are a bit apprehensive..on the other hand..they have so many patients to see as well..and not enough time..can you imgine when you are going to be seen by them..the appoitnment is always late..(unless you are on provate) but some of the specialist are not on private neither..so you have no choice have to be on NHS..and they are so tired..some of them have to rely on medical representative to know of  the kind of medicine that suited the patients (that are for disease) but our condition is not a disease though..it is more structure/.mechanical issue..so it is a surgeon's case who know better than..but brain have million nerves..it is very difficult to understand..even for an experience surgeon that is why if chiari patient have other complication than just chiari or in the middle of surgery there something else comes up i.e due to the side effect of the pro long of medication usage...(not to forget majority of the drugs that being given to chiarian are for anti depression..anything to do with nervous system..all the drugs provide side effect to our body..mostly if they have been taken that for a long period of time and a high dosages..) so it is quite complex things..I quite emphaty with neurology..my back ground is science, but i am not a doctor..but ..brain is a very --very difficult stuff..that is why..we have to read and look at the you tube and ask so many questions be assertive to it..we are incharge of our own health...and just be honest with them..and show our respect..than we emphathy to them tell them we understand that they do not know a lot..can they refer us to some one who they think are excellent in this field..if we are honest to them..I am sure they are going to help us..at the end of the day..they understand..how scare we are..nd letting them know..or put them in your shoes..or tell them..how would they feel if their love one suffering what we are suffering..WHAT WILL THEY DO???? surely they will try to get the best solution?..just like cancer????, when some families asked the health care professional to have autopsy of their love one..theydo not die of cancer..but they die of the result of the side effect of the medication they given to them..or the chemo..., so..you have to think to yourself..chiari.. eventhough it is more painful than cancer..it is not end of life...you are still living..you just have to try to make the best of your life..try to be as positive as you can..aqccepted your condition..surely..the health care professional have to be kept up to date..HENCE ALL YOUR FEED BACK IS SO IMPORTANT..

When I talk about health proffessions I am talking primarily about GPs. In my case it took over a year to initially be refered to a Neurologist - "everytime I cough I colapse" " We don't treat coughs (my GPS) but have some antibiotics", The another year with the Neurologist before being redered to Neurosurgeon,(decompression and cauterisation within a month). Years later symptoms getting worse. My GPs "you've had the opperation so your cured", But i'm getting the symptoms, " What do you expect me to do about it?" Eventually refered back to the original Neurologist. "You've had the opperation its probably megraine", (24/7?). Luckily he got intouch with my Neurosurgeon who explained to him were I might have problems that needed investigation. The Neurologist seemed not to know much about CM. The Neurosurgeon wrote leters that were forwarded to my GPs surgery (if they bother to read them and not just filed away). So hopefully their ignorance will be overcome.

Sorry "refered" head hurting. 

Hi Yeltzer, you just have to make sure you keep on top of it to your gps, think about it, I do not think that they are ignoring your issue, soemites they just have so many patients  to see..whaqt important for you might not be important for them..so you just have to keep reminding them..its nothing personal..and if you keep persistent and giving them gentle reminding and emphasizing it that your condition is really very painful printing it our from the website site the side effect just let them know make them realise because their lqck of knoeledge about chiari make them a bit , aprehensive you see at the end of the day they think that they are qa gps..and the patient letting them know what to do its make them feeling inferior..as long as you inform them the reason why you are a bit persistent is just because you are really worried about your condition and mentioning to them ''how do they feel if they are in your shoes ..see if they like it????? do you mind is I take your experience as an example of our health care professional attitude..I am qriting a letter to my MP so that he can discuss this to the parliament when they talk about health..(Promise!!!, I woont mentioned your name...-LOL)

My GPs are ignorant of the condition. When I first went to the years ago " when I cough I pass out". GP " We don't treat coughs get some cough medicine". I went several times, one time I started coughing and the GP present ( there are several at the practice) saw me so precribed antibiotics. Eventuall they got fed up and refered me to a Neurologist who after the initial consultation kept cancelling apointment for several months. about 6 or 7 months, till he refered me to a Neurosurgeon. With in weeks I was having a decompression and Cauterisation, The symptoms stared to return that when one of my GPs came out with the comments about you're cured. One GP did send me to a physio to do some thing about pain in arms etc. Without treatment he refered me back to the surgery stating something was radically wrong, including my eye dropping. Two of the GPS examind me and said there was nothing wrong with me, the physio must have made a mistake. Eventually a trainee GP refered my back to the original Neurologist,  who refered me back to the original Neurosurgeon. Letters were flying back and forth but one interesting passage from the Neurosugeon, one of if not the top CM surgeon in the country, was that they had done an audit on patients that had had the operation and 25% still had some of the symptoms.I have tried several times to get CM through to my GPs. They will issue pain killers, not the right ones according to the Neurologists, and antibiotics by the boatload. Iwould like to change my GPs but trying to find Gps sympatetic to CM is hard.

I had to be admitted several times before they would actually listen to me. I lost my site walking up the stairs with my at the time 2 year old daughter. My very first occurrence happened when I was pregnant with my son I passed out at work woke up on the floor. That's when they found it but I was told when your pregnant the surgery was not optional I waited until my now oldest was 6 and I was again at work and fainted I woke up I couldn't see. This go around they admitted me and saw that it had become larger and if I didn't have the surgery it would in the end put me in a wheel chair for the rest of my life. But even after the surgery I experience alot of my symptoms and have days where I can't leave my bed. Which in its self SUCKS I have 3 children and a husband which have helped me and been with my since my journey began. I am going in on Tuesday to get an mri scheduled to find out why I now have knots growing in the back of my head which that is scary.

I would get admitted it takes a toll on you being scattered every where and while your waiting to get into see yet another neurologist it racks up more money and more pain. I know it's not easy what so ever waiting and waiting every time you hope they have a answer they try to throw more drugs on top of it. That's why I initially wanted the injections after my surgery because I didn't want to be doped up 24/7. You will have to find a Dr that deal with chiari it's not easy for sure and it will take time. But I pray they get an answer for you soon.