Mom just diagnosed

[Rellis76]

My mom was diagnosed this past Saturday 04/02/2016 with ALS. This is her story

On October of 2015 it was discovered she had thyroid cancer and her thyroid was removed and afterwards was treated with iodine radiation a low dose they were successful in getting all the cancer when she went into surgery her voice was normal. As soon as she woke up she had slurred speech and tightness in her throat and that has continued till today with some improvement.

Next was surgery for a torn rotator cuff and labrum in December of 2015. Almost immediately that surgery and physcial therapy she can still move her fingers but can not lift her arm or completely straighten her fingers and also after this surgery she started slightly dragging her right foot never present before only after this surgery. over the past 3-4 months her symptoms have not got worse just about stayed the same. She has had a MRI brain and spin all come back normal.

This weekend she had a neurologist conduct a emg and it showed issues in the right arm and some in the right leg but none in the throat or tongue. The Dr. came in and preformed some reflex tests some were brisk. Then the bomb shell hes 99.9% sure she has ALS.

I asked why did these symptoms only appear after these specific surgeries to the same areas that the surgeries affected. He said he could not explain. Asking for anyone's thoughts on this and we are going to Mayo or Emery for a second opinion. Just wondering what everyone's thoughts were? We are scared and curious at the same time.

 

[lgelb]

Hi, R, it is not unusual to be hoarse after thyroid surgery so I'm discounting that part for now. However, it's not uncommon for ALS to show up just after a surgery that didn't do what was advertised.

Do you have a copy of the EMG report? That would help us speak to what you have heard. Going to Mayo or Emory is an excellent idea.

Best,
Laurie

 

[Rellis76]

I'm working on getting a copy of the emg.

 

[Nuts]

I'm so sorry your mom is going through this. Yes, get her to Emory or Mayo--that's a great plan.

My husband has back surgery after being diagnosed with ALS. The surgery relieved the pain it was intended to relieve, but it also ended his days of walking. He walked in and was unable to move his legs at all when he woke. Things gradually improved, but then fell off immediately. Surgery or any other insult to the body often speeds up the progress of ALS.

My fingers are crossed that you get a different second opinion.

Becky

 

[Lorali]

I am so sorry you are going through this too. That was the same for my dad. He had quadruple bypass surgery which went amazingly well (I thought that was the reason for his leg weakness and he would get stronger), however he didn't and shortly after could barely raise his arms. So I have to agree that the surgery seemed to speed up the process.

 

[frankb]

So sorry that you Mom has gone through so much, and to be diagnosed will ALS to cap it off. Be aware of the possibility of a problem getting your Mom's data from the diagnosing doc to the second opinion doc. I had to make repeated calls to my second opinion doctor to insure they had received the data. Really had to light a fire in the diagnosing neurologist to get the data to Emory. - - Great folks at the Emory Clinic, by the way.

 

[Nikki J]

Very sorry.
Request copies of everything for yourself as well as sending dr to dr. Things get lost plus you should just have everything in a file. Bring it to second opinion but do not let them keep your only copies. Read the sticky on second opinions in the general section as well.

 

[affected]

So sorry about this diagnosis, we will help however we can.

 

[pmbenb83]

I'm so sorry to hear about your mom's diagnosis and all of her health issues. You have come to a wonderful forum for a wealth of knowledge and support.

My husband was diagnosed in 2008 and had rotator cuff surgery a few years prior (same arm that was affected by ALS first). At the diagnosis appointment, we were told that he was not to have any other surgeries unless they spoke with the anesthesiologist to tell him/her what medications my husband could have. We were told there was a suspicion that a medication that is used to paralyze the motor neurons during surgery, which is the usual protocol, could unfortunately in some people cause bad results afterward. In my opinion, the medication possibly reacts differently to people who are predisposed to motor neuron diseases.

I hope someone in the ALS Research community follows up on this, because it seems like a lot of people are diagnosed shortly after surgeries. Maybe it would reduce the amount of cases of ALS if they changed the anesthesia protocol.

I wish your mom and your family the very best.
Sincerely,
Pam

 

[BetsyB]

11.....However, it's not uncommon for ALS to show up just after a surgery that didn't do what was advertised.


Best,
Laurie

hi, Laurie. I was diagnosed yesterday with ALS, a few months after a surgery to resect a lumbar spinal ependymoma (grade 2). This ependymoma tumor greatly compressed my spinal cord and led to balance and gait problems.
I had some ALS symptoms like weakness and fascics before the surgery but the progression accelerated afterward, leading to diagnosis.
I want to know where you got this information about the relationship between surgery and ALS.
Thank you.
Betsy

 

[Buckhorn]

Hello Rellis76. Welcome to the forum, but sorry you are here. I am sorry for all the problems your mother has experienced in the past year. Hopefully as you gather more information and the 2nd opinion you will find answers. People on this forum are exceptionally helpful and a great resource to turn to for information, based upon personal experience. Good luck to you and your mother!