Hi it heather here
I have recently been refered to a neuro surgeon by my consultant to discuss brain surgery i am 53yrs old have been diagnosed nearly 5yrs and have tried every treatment in the cupboard with some nasty side effects, i am on 38 tabs per day sinemet plus 2 tabs 5 times a day resigaline daily pramiprixole daily domperiodome 3 times daily madopar 5 times daily and sinemet long acting at night paracetamol, gabepentin, ibuprofen for pain and lansoprazole for protection to my stomach so all these drugs can make me sick. Is there any one on this site has had or is having brain surgery i would like a view from the patient side of things and what benefits it has and there experience in what info they were given and what problems they encountered with the surgery ? i hope some one is out there i wait with anticipation.
Hi my god your more like a drugs mule and i thought i was on alot of drugs 2 x 125 madopar every 3 hours but so up and down it was untrue , ive now gone onto apo go pump which is a help and a option before surgery and you have a more "level 12 hoursin a day " abeit quite bad nausea with out domperidone taken other than that it alot better hope this helps
there are lots of people with DBS on this site almost always with something good to say about it and i am sure they will respond to you in time. however i have to say i have never heard anyone on nearly that amount of drugs. surely anything would be an improvement?
How old are you and how long have you been on apomorphine pump, I had this over christmas and boy did it make me ill watch out for constipation drink plenty and eat a lot of roughage. I know many people on this that have found it a help but the common problem is the lumps at the sites you put the needle in I found it better not to rub for long, hope this works for you my consultant has recommended me for discussion on surgery because most of the drugs i have tried i have had side effects and the one's i am on now do not give me control as i still work he wants to see if this is an option to keep me working (typical man keep the woman working) but if i have to give up so be it my friend retires soon so we can be lady's that lunch HEE HEE by the way I am only 53yrs I am a nurse and can possibly get ill health retirement. if you want any advice especially if i have surgery please ask thats what this site is for .
i don't mind the amount of drugs if they work but I am not sure if i am at the stage for surgery but i will see when i go to see the surgeon .Because i am a nurse in a GP practice I see many patients with parkinson"s and they don't seam to be on as many meds but most of them are in the older bracket I dispare that the Doc' do not try giving them more just to see if it helps, one of my patients husband has pushed there consultant to try more because he know's i have 4 nearly 5 yrs of some good control and his wife has not had the same treatment or control she was diagnosed the same time as me but i am 53yrs now and was 48yr at diagnosis and my consultant if one of the leads in the country in research and treating the younger patients but this should not matter we all deserve good quality in life.I hope some who have had surgery will respond because it helps when info if from the horses mouth. must dash HAA have a doctors appt.
Hi MommahI am 37 and been diagnosed 8 years now tried all the other oral drugs prem ,rtig etc ended up on madopar which was ok but just to many dips so on to apo go nov last and yes y ou get lumpy belly seems to be the only place i can tollerate tried arm s legs and not nice i have been ill with it but without fail i take domperidone ,i think the surgery will be next,how are you when your "off" like when you get up in morning my off is apalling and shake both arms and head alot and can bearly walk to the bathroom ,have heard all good feedback re DBS but we must not forget its no cure but just helps us control syptoms,where did you go to speak about surgery i went to kings london ,nerologist seemed to try and keep my feet on the ground and did not want me to expect to much so not to sure about dbs ,seen a woman who live near to me and she had surgery done in oxford and says she is alot better for the surgery ,now on min amount off pills and no involtry movements ,not perfect but has more control over symptons
I have not seen any one yet and not sure if i am at the point for surgery ? (on my off moments) Mornings in pain from toes to head some times I can not get out of bed I take Madopar to stop my rgt arm/leg shaking with lanzoperazole to protect my stomach i had my gallbladder out 15yrs ago disaster nearly pegged it had reconstructive surgery so have to take lanzop
to stop stomach ulcers i also take gabepentine for nerve pain and paracetamol at 6am, unless i am busting for the loo I wait for them to work then shuffle to the loo then back to bed to have some breakfast so at 6-30am i take domperidome , Rasigiline,Simenette plus x2,Pamiprixole and ibuprofen when they have kicked in i can then get up but i am still stiff it takes approx 1 hour to get going then i shower and dress and then go to work but over the last 4 weeks I have not been able as meds not lasting only getting 1 hours relief so I am off work.I take more meds every 3 hours through the day,then night time meds to try to sleep I have had occational freezing and recently started with REM sleep disturbance involving thumping my husband and screaming this has happened 3-4 times so i am having more meds to help with them it will take me to 41 meds a day (Rattle Rattle) I will never get past customs they will think I am packing ??. i have been able to work for nearly 5yrs since diagnosis but it has got harder and this last 4 weeks has been worse my consultant has suggested surgery as he can no longer give me any more meds as there is no more in the cupboard and as he thinks this last change will not last long so the reason for refferal for surgery. when i have all the info I will then have to weigh up my options but it looks like i will stop work i am a nurse and I have to be on the ball as i work independently at a GP"s and i find it hard to concentrate and keep awake if i have had a bad night, I am a patient at the GP"S i work for so it is no problem convincing them I need to stop i have worked there for 22yrs they know i have been struggling, the only thing is i keep asking for a new Brain and the tight G**s say they can not afford it goverment cut back's HA any thing so as not to pay for one HEE. I did ask if i was getting a clock when i had worked 25yrs for them and the senior partner said yes a clock around the head would do for being cheeky cheap scaps or what. well i better go i am getting tired will let you know how i get on . you let me know if you go ahead.
Hi Everyone. I too am starting to go the DBS route & wheels are in motion with visits to the consultant.I tried most of the drugs on the market & developed adverse reactions to nearly all over them, going from the severe trot to aneamia. I shall follow with interest & will also let you all know how I get son. Christopher
Yes i am affraid you sound like your heading in the same direction as me i did work for a good few years after diagnosis but struhggle to now so just puddle about in the day ,its just a pain as life is so dam boring now with no work and find is so frustrating that i have so many skills and knowlege (plumbing and heating engineer)and cant use them any more just doesnt seem fair sometimes does it ,i am suprised no one has replyed re DBS yet but have heard that it can change your life from what little i know about it but must remember its not a cure so try not to expect to much, will check here again soon
Hi Chris where are you going for your pre dbs tests etc
I'm fresh of the operating table as of last Tuesday.
Sorry I kept it quiet. I'm one of those who just buries themselves away. I didn't want to hear anyone elses experience. I just wanted this to be my experience, completely unclouded.
So why am I here chipping in my tuppence worth?
The only thing that I wanted to say was get a good meditation book, an uplifting playlist on your MP3 player and try not to worry.
Dear Eck, wishing you all the best. Like you, I have not been inclined to post re this topic. Thank you for the advice - I am off to buy an MP3 thing (on the internet), never having felt the need for one before. I am rather fond of the vinyl approach to istening to music but appreciate that it might not be convenient.I just hope that somebody will have the patience to explain to me just how to use the thing
Sorry to chip in here, but my husband had a pallidotomy when they were first reintroduced and were funded because they were still experimental, of course it is now DBS that is done. My point is that when find the symptoms become too difficult to manage day to day living then it's time to take the decision and go for it, if it gives you a few years longer of sum sort of quality of life it must be worth it.
I injured my back while nursing when I was 29 years old and after several years of treatment of which none worked I had to decide whether to have an operation,I felt I had to go ahead as I was confined to bed most of the time and didn't want to live like that and I felt it was also not fair to my husband and our young son. To some extent the operation worked but it has taken many years of constant severe pain and ending up using a wheelchair when out of the house, changing furniture and not being able to visit family and friends without taking my own chair, a restrictive life really but never the less I feel I have had many compensations. I am quite an independant person and nobody wants to hear about a bad back problem so I just smile a lot, have many friends young and old and had a full life starting and running a PD branch until recently. So it depends whether you are a full cup or half cup person. Life is the here and now and we can't all wait for a cure for our various condition's so it's up to you.
eck all the very very very best.
you might still get a game for rangers.
Thanks for the wishes. I managed to miss the cut off date, now there is a one year imbargo on signings and besides there was nothing wrong with my knees - so that ruled me out.
The MP3 player is smashing. You dont have to balance pennies in it or anything.
If you have any problems with it could you post them in french. I might not be of any help whatsoever but I've learned that problems diminish when then they are in french.
Et bien maintenant, c'est une idee tres bonne. Comment dit-on MP3 en francais?
il s'appelle 'emmm paaay twaaa'
merde, vous misserez la jour de guillotine! je suis mal comme une perruche. mais cette une jeu de deux demis et a le fin de la jour, le jeu est le champion.
As far as I can make out Turnip, you have a penchant for cutting my head off and are feeling fed up because , at the end of the day it would seem thatI have two, so I am the winner. Close?
ah non cher AB, parte le deuxiemme est pour l'Eck avec le chose dans son tete, je dit 'dash, you have missed the cut of date! i am sick as a budgie. but it is a game of two halves. at the end of the day, the game is the winner'
c'est le francais excerable du chou-navet