Surgery forPD

[Pauline]

Hi:confused::confused::confused: l went to my Nurolgist today and he says my PD is advancing very quickly and he wants to send me to another Specialist to see if I would be a candidate for Surgery and the last time I saw him he said surgery was the last option so now he has me worried but I think he is for getting I am on blood thinners for blood clots so I don't think they will be able to do surgery so what happens then this has really sent me for a loop I am trying to stay positive but finding it very hard :(Pauline and if they do do surgery what will it do it still won't slow it down ?:(Pauline

[jane]

Hi:confused::confused::confused: l went to my Nurolgist today and he says my PD is advancing very quickly and he wants to send me to another Specialist to see if I would be a candidate for Surgery and the last time I saw him he said surgery was the last option so now he has me worried but I think he is for getting I am on blood thinners for blood clots so I don't think they will be able to do surgery so what happens then this has really sent me for a loop I am trying to stay positive but finding it very hard :(Pauline and if they do do surgery what will it do it still won't slow it down ?:(Pauline

hello Pauline
I am jane and felt moved to contact you although I know little about surgery for PD I just wanted you to know you need a lot of our love and support and thoughts Try to find out as much as you can about any decisions you might have to make knowwing that here there will always be someone to bounce your ideas and thoughts on always a shoulder and ears to listen
take care and hang on in there we all love you Jane.

[jane]

hello Pauline
I am jane and felt moved to contact you although I know little about surgery for PD I just wanted you to know you need a lot of our love and support and thoughts Try to find out as much as you can about any decisions you might have to make knowwing that here there will always be someone to bounce your ideas and thoughts on always a shoulder and ears to listen
take care and hang on in there we all love you Jane.
PS I hope I havent upset you reading this over I may have presumed a lot but dont think so love from jane

[Pauline]

:Thank you Jane your note means so much to me it's 3 o'clock in the morning and still can't sleep just knowing some one is there means a lot thank you most of the time l am a very up beat person and l don't let thing get me down but just having a hard time getting my head around this hubby is sound asleep as if not a care in the world and l would like to scream :D:D:D:D that me screaming thank you Pauline give me a few days and l will be back to my self Tomorrow is a better day Pauline please write again l love to chat

[heather]

Hi Pauline
like jane said each and everyone of us is hear for you

you can do , say what ever you want on hear,that's what the sites about,and when you get through it we can all have a big
laugh and celebration,until then lean on us,we can /want to support you
http://i10.photobucket.com/albums/a126/maesisaf/5567d079.gif

[tinkerbell]

hi pauline,

we are all in this together, so take care.
lol tinkerbell

[MargieB]

Dear Pauline,

It's 2:10 AM and I just saw your Thread: Surgery for PD.

Before I say anything else -- GET A SECOND OPINION. From personal experience many years ago regarding polyps I had...second and in some cases a third opinion is necessary. One doctor's opinion, even if he is tops in the field of medicine he is practicing...isn't necessarily correct. You need to get another opinion(s) right away. Try not to think negatively. It's hard but you can do it.

Don't be afraid of how and what he said. He's not God and he could be wrong. And if, by any chance, he is right...you will be fine.

The love of your husband, the love of all your friends here and the love of those who know you and care about you will create enough positive energy with their love to see you through anything. Love is a very strong force. You are a young woman and can fight like h*** against this d*** PD. We'll fight with you.

I'm so sorry that you had such a shock. But if I (we) can help in anyway, please tell me (us). I (we) are here for you always. I know it's easy for me to be so positive, I'm not in your shoes. But I've lived life long enough to have seen love plus positive outlooks beat the worst case scenario.

You are in my daily prayers. Permit us to be strong for you and with you.

With love,

Margie

[Pauline]

Thanks Margie I really don't like this Dr so I am going to my Gp' and ask him I like him and I trust him I know I won't go back to this neurologist :):):)Pauline

[Pauline]

thank you everyone you support means a lot to me :):):)Pauline

[suzie Q]

Good luck Pauline

[susan wheatley]

hi pauline, hope you are feeling better today you should get a second oppinion and try to find out as much imformation as poss and most of all dont be rushed, lol susan.

[Pauline]

Hi Susan Thank you I am feeling better no at the time it was such a shock because when I had seen him before he told me surgery would be a last resort any way I am going to get a second opinion and I refuse to let him get me down I all ways said I was going to fight and that has not changed :):):)Pauline

[susan wheatley]

hi pauline, good for you, the doctors are,nt always right about everything they somtimes get it wrong i am glad your staying posative the right frame of mind does help i,ve read somwhere when you have pd god bless and speak to you soon susan.

[lhurtado]

hi i,m linda. i'm going to have dbs surgery done on the other side, left side for right side. i had the right side done july 2004. it is not a cure but it helped about 40%. my right side is progressing quickly & my nuero & i consulted & i am schedule for july 10. i know exactly what will be done & the same surgeon will do it. so i am at ease. of course there can be great risk. i have a positive attitude & have great faith, the Good Lord will help me through this again. i ask my PD friends put in a good word w/the Lord.
Thanks,

Linda

[Pauline]

Hi Linda
Good Luck to you and you will be in my prayers
It just helps with the tremor not any of the other symptoms is that right .
I haven't seen the other neurologist yet it could take up to six moths before I can get in to see him :):):):)Pauline

[lhurtado]

Hi Linda
Good Luck to you and you will be in my prayers
It just helps with the tremor not any of the other symptoms is that right .
I haven't seen the other neurologist yet it could take up to six moths before I can get in to see him :):):):)Pauline
pauline no it does not just help w/tremors but it will also reduce your intake of meds, it helped me control the dystonia & some other things i don't recall off my head. thank you for your prayers!
linda

[Pauline]

pauline no it does not just help w/tremors but it will also reduce your intake of meds, it helped me control the dystonia & some other things i don't recall off my head. thank you for your prayers!
linda

Thank you for answering my question :):):)Pauline

[MargieB]

hi i,m linda. i'm going to have dbs surgery done on the other side, left side for right side. i had the right side done july 2004. it is not a cure but it helped about 40%. my right side is progressing quickly & my nuero & i consulted & i am schedule for july 10. i know exactly what will be done & the same surgeon will do it. so i am at ease. of course there can be great risk. i have a positive attitude & have great faith, the Good Lord will help me through this again. i ask my PD friends put in a good word w/the Lord.
Thanks,

Linda





Dear Linda,

You will be in my prayers now and on July 10. You will be fine. As you said, the Good Lord will help you through this again. God Bless you now and always.
http://i302.photobucket.com/albums/nn88/Bronx628Margie/Angel-1.jpg
Margie :)

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/pspjesusAnimation233223222linda.gif

[JD2008]

Hi:confused::confused::confused: l went to my Nurolgist today and he says my PD is advancing very quickly and he wants to send me to another Specialist to see if I would be a candidate for Surgery and the last time I saw him he said surgery was the last option so now he has me worried but I think he is for getting I am on blood thinners for blood clots so I don't think they will be able to do surgery so what happens then this has really sent me for a loop I am trying to stay positive but finding it very hard :(Pauline and if they do do surgery what will it do it still won't slow it down ?:(Pauline

Hi Pauline,

I can imagine it was a shock- suggesting surgery. When you say your PD is advancing - what do you mean? I was dx about l8 months ago - doing fine until a couple of weeks ago and it seems to have taken off on me. Balance has gone nuts and I shuffle around....... I understand you summer at Wymbolwood beach - I am just up the road in Midland. Wonder who your neuro is - I didn't like the first one in Barrie- now going down to Maple - too far away. I am going to contact her tomorrow re starting meds. I agree with the other replies - get another opinion (or two). Good luck - keep us posted. Jennifer

[mappergal]

Hi Pauline, I went to a great seminar on DBS last year at Cedar Sinai in Los Angeles. The doctors there said they were no longer waiting to perform the surgery as a last resort but when you needed more help then meds can do.
They actually had 3 people who had the surgery stand up and talk about it. With 2 of them the doctors shut their devices off and within seconds the dyskansias were back, the patients had no control over their body movements. The doctors turned them back on and the excessive movement stopped immediately.
I belong to a young onset group and a couple members have had it done and they have been pleased with the results, though one person fell and her wire snapped. so she needs to have another surgery to repair it.
My advice is to get as informed as possible on the subject. My doctor and I have talked about it but agree it is a few years off. You can also say "No" if you are not ready.
I say "no" to my doctor on some of his suggestions and he respects me. For example I won't go on an agoinist because I don't want hallucinations and I am already a little obsessive compulsive and don't need a drug to amplify it.
DBS is a big deal, it is brain surgery and you should feel comfortable with the decision not not be talked into it before you're ready.
For me, when the time comes, I think I will do it.

[grldnklly]

Hi Pauline and Linda,
I don't know anything about the surgery, but you can count on me for prayers.
God bless
Geraldine

[susan wheatley]

linda good luck for the 10th you will be just fine think of how much better things will be after the surgery and keep smiling, will be thinking of you god bless susan.

[Pauline]

Hi Mappergal
thank you for the information I am still waiting to hear when I go to see the new neurologist here there is quite a long waiting period to see specialists (the waiting is the hardest ) but when the time come I will keep everything in mind in fact I have written thing down so I won't for get Thank you:):):)Pauline

[Gail]

Hi Mappergal
thank you for the information I am still waiting to hear when I go to see the new neurologist here there is quite a long waiting period to see specialists (the waiting is the hardest ) but when the time come I will keep everything in mind in fact I have written thing down so I won't for get Thank you:):):)PaulinePauline, I will also keep you in my prayers. It is a shame that they make you wait so to see a new neurologist. It is always easier to cope when you know what you are dealing with. Gail

[suzie Q]

Hi Linda

Good Luck Or The 10th Hope All Goes Well

Sue

[suzie Q]

Pauline Good Luck For You When You Get To See Your Neuro ,will Be Thinking Of You


Sue

[Pauline]

Thank you Sue and Gail I will let you know when I hear any thing and you are both in my prayers It is so heart warming to come on here and know there are people that care Thank you :):):)Pauline

[JD2008]

Hi:confused::confused::confused: l went to my Nurolgist today and he says my PD is advancing very quickly and he wants to send me to another Specialist to see if I would be a candidate for Surgery and the last time I saw him he said surgery was the last option so now he has me worried but I think he is for getting I am on blood thinners for blood clots so I don't think they will be able to do surgery so what happens then this has really sent me for a loop I am trying to stay positive but finding it very hard :(Pauline and if they do do surgery what will it do it still won't slow it down ?:(Pauline

Pauline - I just noticed one of our members 'Aideen' had DBS a few weeks ago. Look under her postings. Jennifer

[Pauline]

Hi Jennifer
I will check it out thank you I hope every thing is good with you :):):)Pauline

[lhurtado]

:):)Pauline - I just noticed one of our members 'Aideen' had DBS a few weeks ago. Look under her postings. Jennifer
pauline. when the nuero says you maybe a candidate for dbs. he will set you up for long hrs. many intensive test. perhaps 3 hrs. psyco test w/out meds, physical testing then w/meds. they ask ? galore about your health. they tell what meds to stop prior to your surgery if you qualify. if you have diabetes or heart problems they have special test for that. just wanted to let you know. thanks for prayers for my 2nd dbs coming july 10
linda

[Pauline]

:):)
pauline. when the nuero says you maybe a candidate for dbs. he will set you up for long hrs. many intensive test. perhaps 3 hrs. psyco test w/out meds, physical testing then w/meds. they ask ? galore about your health. they tell what meds to stop prior to your surgery if you qualify. if you have diabetes or heart problems they have special test for that. just wanted to let you know. thanks for prayers for my 2nd dbs coming july 10
linda

Linda
thank you for the information I have marked July 10 on my calendar so I will be sure to say a special prayer that day :):):)Pauline

[Drew Saunders]

Hi Pauline
I will be thinking of you early July. My prayers are with you.
Awsome
Drew