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pcwjlw

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wexford
I am new to this site and this is the first post that I have done, but have been reading alot of information on this site over the last couple of months. My Brother (41) has some what had the ALS diagnosis. For about a year or so he was noticing weakness in his right hand. He ended up at a surgeons and they had found some issues with his C4-5 in his neck. He had some tingling and burning sensations in he arm and also weakness. He had a couple of different opinions and elected to have some surgery done on his neck. He had bone spurrs removed and a fusion done on his C4-5 in his neck. He had plates and screws along with fake discs. He was told that after the surgery he would be good as new. Well he got worse. His hand continued to weaken and he began having spasms (which he did not have prior to surgery). He had EMG, nerve conduction studies and he has seen several Neurologists. Two of the three Neurologist said that what he had was ALS. All his other blood work etc. ruled out other issues. He then went to see an ALS specialist that told him that he could not diagnose him with ALS. He said, that he can not say it is not ALS, but also can not say that it is. He told him that the surgery that he had was a very complex surgery and the symptoms could be related to the surgery. (not to mention he still has bones spurrs still on level 6 and 7) He is scheduled to go back in Febrary for a follow up visit. The thing that he is very concerned with is he is have the fascilations (twitches) all in his upper body. Mainly right arm, minor in his left and he said that some times his chest feels like it is vibrating. Today he has gone to the Cleveland clinic and they told him again they can't say that it is or isn't ALS. He is going back first week of Feb. for a 3 hr nerve conduction test and an MRI. My grandmother passed away 22 years ago from ALS and back then they said that the disease was not hereditary, now to find out that there is FALS. This is a very tough disease. I am just curious if there is any one that has had a situation similar to this. I appreciate your time.
:?

Thanks-

Jennifer
 

CindyM

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Hi Jennifer- welcome to the forum although I am sorry for the reason you had to seek us out. Hopefully they wil find an answer to your brother's concerns soon. I knpw it is a worry when they don't promise you it is not ALS. FALS is very rare, so lets think positive for now and hope his symptoms can be attributed to one of the many conditions that mimic ALS. regards, Cindy
 

ohioprof

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ohio
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centerville
Hello Jennifer

In a perfect world, everyone that had a surgery performed on them would come-out of it with flying colors. Unfortunately, that isn't the case. In the case of your brother's surgery, complications can certainly occur and can be manifested by worsening of the condition that caused the procedure. I would be hopeful that the reason your brother didn't get better, is because of surgical complications. Myelopathy (damage to the spinal cord) can certainly cause symptoms that mimic ALS. I would be cautiously optimistic that he doesn't have ALS and that he can be "fixed" with further intervention.
Take care and keep us posted.

Nick
 

crystalkk

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jennifer,
Sorry to hear about your situation. It is true that some do get worse after surgery, that's why we sign all those papers so we can't sue them.

I am undiagnosed, I get that vibrating feeling in my chest as well mainly when I lay down.

Where is Wexford, PA? I live in Philadelphia.
What ALS specialist are you seeing?
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
Jennifer, I began with a loss of dexterity and weakness in my left hand. Almost two years later I started down the path to diagnosis. My cervical MRI found atrophy in my spine between C3 - C5. For me at that point the EMG showed signs of ALS in 3 limbs and I also had upper and lower motor neuron involvement so the issue of surgery never came up. I don't want to remove any hope but I believe facts are best. In some of my past searchings I found the following:


Incidence and characteristics of spinal decompression surgery after the onset of symptoms of amyotrophic lateral sclerosis.

Yoshor D, Klugh A 3rd, Appel SH, Haverkamp LJ.

Department of Neurosurgery Baylor College of Medicine Houston, Texas 77030, USA. [email protected]

OBJECTIVE: The high incidence of spondylosis in patients at the mean age of onset (55.7 yr) of amyotrophic lateral sclerosis (ALS) can make recognition of ALS as a cause of weakness difficult. METHODS: To assess the impact of this diagnostic dilemma on neurosurgical practice, we performed a retrospective analysis of a database of more than 1500 patients with motor neuron disease. RESULTS: Of 1131 patients with typical, sporadic ALS, 47 (4.2%) underwent decompressive spinal surgery after the onset of retrospectively recognized symptoms of ALS. Among 55 operations in 47 ALS patients, 86% yielded no improvement, 9% produced minor improvement, and only 5% provided significant benefit. Cervical decompression was performed in 56%, lumbar in 42%, and thoracic in 2%. Foot drop was a symptom prompting surgery in 11 patients, and in 10, this finding was subsequently attributed solely to ALS. No differences between ALS patients who underwent spinal decompression and other ALS patients were noted regarding age at symptom onset, severity of impairment at time of diagnosis, or rate of disease progression. Not surprisingly, patients who had spinal surgery tended to have a longer interval between retrospectively recognized symptom onset and diagnosis of ALS. CONCLUSION: A small but significant number of patients with unrecognized ALS undergo spinal surgery that in retrospect may be inappropriate. The possibility of ALS must be considered in the evaluation of patients with weakness even in the presence of radiographic evidence of spondylosis and nerve root or spinal cord impingement.

The above abstract can be found here
 

Tall John

Active member
Joined
Mar 30, 2007
Messages
81
Reason
PALS
Diagnosis
06/2007
Country
US
State
ca
City
novato
ALS specialists

These doctors are more cautious to jump the gun. They have a protocol to follow, like "present in three limbs" or "clear upper and lower motor neuron symptoms".
 

pcwjlw

New member
Joined
Nov 17, 2007
Messages
2
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Loved one DX
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US
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PA
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wexford
Crystal, Wexford is approx. 15-20 min. north of Pittsburgh. The specialist that he saw in Pittsburgh was Dr. Lacomis and Rana. He went to the Cleveland Clinic last Wednesday and I am not sure whom he saw there. They told him that the previous nerve conduction tests were not done complete and they want to do a 3 hour test in Feb. However, he said that at this point he does not even know that he is going to go and have this test done. He is feeling a little over whelmed and also is to the point that he is just thinking... really there is nothing that they can do for him at this point. He said that he is going to continue doing what he has been doing (lifting light weights eating healthy and he is also going to detox of heavy metals). He said that he has been feeling pretty good lately and he said that he is actually feeling like he is gaining some strength back. He said today that he is feeling some numbness/tingling in his worst arm. Not sure if that is a good or bad sign. I appreciate everyones feedback and I have to let you all know I think that it is great that you all offer such great support to people on this forum. I will keep you all updated and I will continue with prayers for my brother and all others suffering from this tough disease.
 
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