Surgery

[gmunsot]

Sorry for my English but I would like to ask if there someone who is thinking in the surgery or someone who had it

Thank you

Guadalupe

[Lisl]

Are you referring to deep brain stimulation surgery?

[gmunsot in reply to Lisl]

Yes.

I wish to know if you heard about ot.

Thank you

[Lisl]

Yes, I had bilateral deep brain stimulation 8 months ago. It was pretty scary to have the surgery while awake but the results have been amazing. I used to have totally disabling dyskinesias from the L-Dopa and severe Dystonia and leg tremors. I know that the effects of DBS are better in some than in others, but as someone who had nowhere left to go with the drugs, the results have been fantastic. I'm happy to answer any questions you might have about the whole process and, by the way, your English is fine!

[shipfitter]

I am too a dbs participant. I just had mine implanted in Feb. so I'm new to the world of stimulation. If any questions he cant answer I might be able to answer and yes your English is fine.

[gmunsot]

Dear Lisi and Shipfitter:

I am so glad that you answer to me because I was trying for a long time, to find some one with the surgery experience.

I am almost 70 years old in very good conditios including Parkinson. Two years ago I was diagnosed because my hands trembling and fell invalance. The Doctor recommended the surgery because she know that to have parkinson for me is too much after a long depression. I know I have few time for the surgery because of my age, and my terrible question is;

If I continue with medications and after isn't time for surgery?

Thnk you very much if both of you continue writing to me.

Regards

Guadalupe

[Lisl in reply to gmunsot]

Is your doctor a movement disorder specialist? I ask because the movement disorder neurologists have special knowledge about Parkinson's disease and who is best suited to have DBS. I know that if you have a very good response to L-Dopa (I did) you are much more likely to respond well to DBS. Also, it depends on what your actual symptoms are - if some of the problems are caused by l-dopa induced dyskinesias if can be very effecting in moderating them. In my case, the DBS has been less effective in stopping my leg tremors, but from my perspective they were one of my least bothersome symptoms, so I don't mind. I had severe Dystonia which crippled me so that often I couldn't walk - that has been greatly improved. My balance has not been improved and I still fall over. The outcome is different for each person, though the doctors do have a range of indicators, like L-Dopa response, that they use. I recall that generally they don't like doing the surgery if you have major depression, but your own doctor would know best. If you are otherwise strong and well, I don't think being older would prevent the surgery. I know one concern is that in some cases DBS is suspected of worsening cognitive problems that might be associated with age. In my country they require everyone to do hours of cognitive testing before surgery ( regardless of age) so any potential problems would show up. Having said all that, if your doctor is offering DBS, she must think you're a good candidate!

[gmunsot in reply to Lisl]

Hola Lisi:

Thank you very much for so clear answer. Yes, my doctos is spacialist in movent disorder . In my case levodopa looks working well because only my hand's trembling it's improve and about the balance I know that any medicine gets to be better, only with the exercises. I have twice a week special therapy with a doctor who works in rehabilitation, also twice a week yoga with a teacher and she decided learn about the parkinson and the exercises are incredible, of cours I have the advantage of elasticity.

My depression is very old, sometimes y think it's for 40 years and y have a very strong break at 65 years old, but always were familiary causes and the parkinson didn't make a difference. I also visited a psiquiatric doctor and take pills but I feel better than other years behind.

My Dr. recomended to visit a neurologist surgeon wich speciality is the DBS with 7 years of practice in France and he, also recomended the surgery. The explication that they gave to me is that my condition is very good and the surgery make me able to continue with levodopa for few years more.

I know that after 6 or 7 years treatment with levodopa causes diskinesias.

But really I am afraid. This week I hope also to talk with a lady who had DBS

Thank you, again for write to me. I would like to ask your age if no matter to you, where do you live and where was the surgery?

Best regards.

Guadalupe

[Lisl in reply to gmunsot]

Hola Guadalupe! It sounds as though your doctor believes that you are a suitable candidate for DBS and I think in that case it could make a tremendous difference to your life. Your neurosurgeon seems to think so too. I am 57 years of age and I live in Australia which is where I had the surgery. I know the whole idea of brain surgery is pretty scary, especially while you are conscious, but the surgery wasn't too bad - it was interesting to be awake and to be able to respond to what they were asking and doing. Recovery from the surgery is surprisingly fast and not very painful. It sounds as though you are an otherwise fit seventy so you may have another fifteen or twenty years ahead of you. If so, the DBS could make a huge difference to your quality of life and independence. It would be good for you to talk to someone else who has had the surgery. Meanwhile I'm happy to answer any questions you might have. All the very best!

[gmunsot in reply to Lisl]

Hola Lisi:

Between this days since our last comunication,it happend somethig. My neurologist foun that I Have not the parkinsonian walking, so she decided that wants the opinion of other specialist, in nervous and muscle ant in this moment my new diagnostic is polineuropathy , etc. Its a long name and very confusses and probably my parkinson is very little or doesn't exist and the symtoms are a conscuence of the polineuropathy.

I am waiting for another tests that decided what kind is in myself and if it's has rehabilitation or not.

I don't know wich of the deseases is worse. I am not in peace until july 8th and14th, so in this moment I am not any more candidate for the surgery.

I hope you write to me again.

I wish the very best to you.

Guadalupe

[Lisl in reply to gmunsot]

Hola Guadalupe, how very confusing for you. I imagine that now you'll undergo some detailed electro diagnostic tests. I'm surprised they didn't do this before a diagnosis of Parkinson's disease was made. I had these done as well as very detailed assessment of movement, balance etc. and careful analysis of my response to L-dopa. My walking was not typical of Parkinson's either, but I had a clear response to l-Dopa and became totally crippled when it was stopped. Have your movement been assessed with and without L-Dopa?It sounds as though you are in good hands now, and that you will have the tests needed to give you a firm diagnosis. At least then you will get the best treatment for your condition. I don't know much about poly neuropathy but I do know that DBS would not help as it is not caused by problems with the brain. Nor do I know which is the worse diagnosis though I would rather have neither I can imagine how difficult it must be for you to have to wait until 14th July for an answer. I'm thinking of you and hoping that you're ok. Let me know what your diagnosis is? With very best wishes, Lisl

[gmunsot in reply to Lisl]

Hola Lisi:

You are a very kind person talking with me about my condition. Of course, when I have the results inmidiatly wii send to you. Until this moment i don't stopped levodopa, also paraximetol and working very good for me.

Now "Time" is my concern.

In other matter I would like to know about you, your country, family, career, etc

About me I am 69 years old, lawyer retired and grandma of 6 boys. I love swim and travel.

Very, very wishes for you,

from México City, Guadalupe

[Lisl in reply to gmunsot]

Hola Guadalupe, I don't think the L-dopa would work well for you if you didn't have some element of Parkinson's disease, but I'm speaking from my own experience. I'm in Australia, and before I became too disabled to keep working I was a university professor. The disease onset was when I was 40 but it took ten years to obtain a diagnosis. During that time I was virtually untreated-it was very difficult. I miss my career but I still do some writing and research. I have two adult daughters but no grandchildren yet. Yours must give you great pleasure! I am happy to talk with you - I think you are very courageous, and I hope you get some answers soon. Is it possible that you have two separate diseases? Take care and best wishes- Lisl

[gmunsot in reply to Lisl]

Hola Lisi:

Probably you are rigth but, I have shaking in my hands. Curios my sister and a brother has, less than I, but shaking many years before me. What happened is, after 2 MD told to me that I dònt have parkinson, my shaking increase so I visited the specialist in movents and, I got much better.

And now I am waiting for the tests that tell to the doctor wich is the cause's origin, with this "answer" he will make a diagnosis and a treatment. I am fear because could be rehabilitate or not, it depends.

It is possible to have two diseases.

Talking different things, in wich city do you live? I know that your country is Australia. We have a vineyard 200 Kms far away from Mexico city and wine production, also imported from Australia named Angola.

I have only a daughter and two sons, they are in the 40's and sometimes is not easy to talk with so "old"people.

This year my daugther and I will travel to Spain only twelve days, in october but I am sure that will be sensational.

What about you writing and reseach? When I worked for the Congress I made reseach in order to present a bill in the Chamber.

I enjoy very much yours mail,

Very wish

Guadalupe

( my nickname is Ponty, can be easy for you).

[quirkyme]

My husband hasn't had it. But maybe 70 is not that old to go for it. Can you get a second opinion?

It's a big decision. Tell me what your language is and maybe I can get a video (or you can try) in your

native language. Here's a link under the (North) American Parkinson's Disease Association but it's in English.

apdaarizona.org/podcasts/tr...

[quirkyme]

gmunsot:

Here's a link that allows you to view the information in Spanish. It's the National Institute of Health and so a reliable source of info.

ninds.nih.gov/disorders/dee...

[gmunsot]

quikime:

Thank you very much for the infotmation and for look it in spanish. What is happen know is that my diagnostic change to a polineuripathy, wich is a desease of muscle and nervous, probably my parkinson is very light or doesn't exist.

I did the first test for the diagnostic and the polineuropathy is my desease but I have to wait until july 14th for the other results that let the doctor who has this speciality in muscle and nervous, know the origein of this and then, knowing the cause will be the rehabilitation or not. I am not in calm until that day.

I would like if you write to me.

Regards.

Guadalupe

[gmunsot]

Hola Lisi:

Finally, yesterday I had all the results of mi exams, inmediatly visit to the doctor and told me that I have a polineuropathic etc etc, a long name but no one illness provides there. My condition is very good and all do I need is alway, for the rest of my live. exercise (yoga, teraphy, swiming) Probably also my parkinson is very light or dosn't exist because in my family everyone has shaking in the hands, younger than I

So I have a good new for you and wish all the best.

Write me please to know how are you.

Regards

Ponty (Guadalupe)

[LauraL]

I have had the surgery. Feel free to send me questions.