Old 08-18-2009, 04:57 PM #1
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Default need some opinions- very important!

Hello everyone,

So I am in the hospital, I have been here since friday because I could no longer walk because my legs were so weak and my breathing was totally freaking me out. Things have been progressing so fast and. I am soo confused. I met with a neuro surgeon who thinls tht the chiari malformation tht I have could be causing a lot of my symptoms but can't be for sure and he recommended surgery. I have surgery scheduled for tom afternoon but I am scared tht I am making a mistake. I am still so scared tht I have als becuz of all my symptoms and am afraid tht the surgery wii end up being a mistake. I guess it's hard becuse he can't guarantee anything. I have a question for you guys and don't knw if you would knw but if I have the surgery but god forbid really have als and its in thr brainstem could I cause it to progress faster or make it worse? They have to cut muscles in my neck so does tht mean my muscles would never heal. I am so at my witts end I just wanna feel better and I guess I am ready to try anything tht might take this away. Even if I had bulbar als, but had an emg last week and it was normal and am having symptoms of weakness in my legs it should be abnormal right? Wht do you guys think I should do? Any input would be greatly appreciated!
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Old 08-18-2009, 05:13 PM #2
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I'm so sorry you're going through this anguish. I really can't offer any kind of opinion about the medical issues ... I don't think anybody on this forum could, including Wright. You will really have to trust your doctors on this. If you are fearful of the surgery, perhaps you can talk to your doctor again and explain how worried you are. He will visit you before the surgery ... make sure he understands your concerns and addresses those issues. Write your questions down and take them with you.

As to speeding up progression of ALS, I don't think anybody knows what controls the rate of progression.

I'll be praying for you, and be sending all the good vibes I can muster. Let us know what happens.
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Old 08-18-2009, 06:30 PM #3
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I cant speak medically , because I am not sure what they are removing.

So , lets look at it logically. Als doesnt allow the brain to talk to muscles. This talking is done by the nervous system. The nervous system runs from the brain through the stem and down through the spinal column.

Doctors hate going near the spinal column.

Will this procedure make your ALS come on faster. I think that no-one can answer that, but I will bet that the surgery will just make you tired. Please dont mistake post surgery recovery from ALS gone wild.

Now , once that things is removed , take it outside , throw it on the ground and drive over it with a car a couple of times.

May the gawds you pray to shine on you during that procedure.

Glen
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Old 08-18-2009, 08:46 PM #4
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You stated you had an EMG last week and it was normal. If this is so, you do not have ALS. The EMG would have picked up things that are characteristic of ALS if you had it. Your EMG was clean so you don't have ALS.

If you are not comfortable with going through with surgery, then why have it? It the outcome of the surgery isn't promising by the doctor, what attraction is there to the surgery that would drive you to go through with it.

All I know is that if a doctor was advising me to go through with surgery that probably wouldn't do much good, I'd have to be awfully impressed with his tap dance.

It just seems you have concerns and questions that haven't been addressed fully for this event.

Zaphoon
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Old 08-19-2009, 03:14 AM #5
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hi keegansmommy.
i really hope the surgery goes well for you and things improve.
you are in my thoughts and prayers.
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Old 08-19-2009, 06:02 AM #6
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Hello

i am sorry for what you are going through.

I am working for a hospital which is the only center specialized in Chiari surgery in Germany as a caregiver.

Chiari malformation is really a rare disorder and its symptoms can mimic ALS.

Bu it usually strikes too fast and affects all four limbs as well as tongue and throat muscles. And doctors can easily make differential diagnosis after MRI.

And surgery is the only treatment method for Chiari. As your EMG came back normal I beilive after the surgery you will start to feel fine.

I have seen a lot of Chiari patients and after surgery they immediately start to feel better. And after post-operation treatment they get back to their normal lives.

So relax.

Best wishes
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Old 08-25-2009, 08:24 AM #7
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Did you go through with the surgery? any updates?
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Old 08-31-2009, 12:33 PM #8
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How are you feeling, did you go through with the surgery?
Please keep us posted, as we are praying that the surgery works.....
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Old 09-03-2009, 03:36 PM #9
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Default things are not any better!

Sorry tht it has taken me so long to write back but I went ahead with the surgery with hopes tht it was the cause of my issues, but it is not! I have lost so much more weight have muscle atrophy and tongue atrophyn weakness all over my body and can barely walk. They are admitting me today because things are progressively geting worse. I am also having alittle trouble swallowing but don't knw if tht is stress? I feel like I am deteriorating every day and am so scared. I just don't understand wht could be wrong because I had an emg three weeks ago but what else could this be besides als? It is crazy bcuz my it will be 1 year on sat tht I lost my uncle to this disease and now I am having symptoms and am only 26. Does als cause equal atrophy and weakness on the body? I thought it starts focally and works its way to other areas.the neurosurgeon also said that he found scar tissue when he did my surgery on the dura. Tht freaked me out bcuz I knw tht als causes scar tissue but he said it wasn't in the nerve tissue of the brain or spinal cord but on the dura. I don't knw wht to make of tht. Does anyone knw where the scar tissue forms with als? I am also scared tht if I did have it tht having the surgery made it worse. All I can think about is my 4 year old little man and wanting to watch him grow up. This is killing me. Please anyone who can help me or give some input I would so appreciate it. Thank you and sorry so long.
Emma
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Old 09-03-2009, 03:58 PM #10
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hi emma,

all of my prayers for you and what you are facing, hold on to that clean emg, and hope for recovery. i was diagnosed with als in july and understand wanting to see your son grow up. i have a six year old son and two daughters, 16 and 14. we can only pray for strength and remember life comes with no promises for another day. treasure today with him! sorry i am clueless on the scar tissue question, my brain mri has white spots, whatever that tells me. thoughts and prayers with you today and for your little man too.

jen
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Old 09-03-2009, 04:10 PM #11
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So sorry what you are going through. I guess the good news is you are going to be in the hospital, were they can at least figure things out. We are thinking of you.
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Old 09-03-2009, 07:04 PM #12
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I hope thigs get better soon.I pray for you and your son. Peace be with you.
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