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DeBigDog

New member
Joined
Nov 26, 2014
Messages
3
Reason
CALS
Diagnosis
11/2014
Country
US
State
DE
City
Magnolia
April, 2014 - my wife goes to a Neurosurgeon (after seeing an orthopedic surgeon) with a droopy right index finger, numbness/tingling in her right hand and over-all weakness in right arm.

A series of EMGs (arms/legs) and MRIs (neck/head) with/without dye follows.

May, 2014 - Neurosurgeon addresses ulnar/medial nerve (operation)...numbness/tingling
are gone...droopy index finger and arm weakness remain...recommends she go to the PennMed Neurological Center (Phila., PA) - to rule out ALS.

Neurologist (PennMed) peruses tests/info from Delaware and administers her own manual tests...indicates that my wife may have ALS...schedules another EMG for Jan. 19th, 2015.

Neurosurgeon (Delaware) has also scheduled an Anterior Laminectomy (C6 - C7, C7-T1) on December 8, 2014 in order to address pinching of the cervical root nerves.

Questions?

1) Might my wife have ALS?

2) Will having the Anterior Laminectomy "in any way" affect the progression and/or the prognosis of the ALS?

Thanx! for taking your time in our very trying time...to read this.
 
If the neurologist said she may have ALS then yes she might. It seems like there are gaps in time here When was the neuro assessment? How long since initial EMG? What did that show? If she already had 1 surgery what happened that she is now scheduled for a second? If the surgeon suspected ALS from the leftover symptoms from first surgery what changed that he/ she thinks more surgery is indicated now?
What are your wife's current symptoms? Does she have symptoms beyond the right arm?
Does the neurologist know about the impending surgery? What do they say about it?

Surgery is a stress on anyone more so if you have ALS. If she needs it because she has another issue either instead or as well it is a good thing. If the problem is ALS and the surgery is not the answer it is bad. My sister had similar surgery prior to diagnosis. While the MRI showed compression it was not causing the hand weakness and did not help at all. Then she was diagnosed.
 
Early on we checked into surgery for spinal stenosis on my husband. The neurosurgeon would not do it due to the ALS and the fact surgery can speed the progress. I would check with an ALS specialist before allowing any surgery.
 
Ensure that the neurosurgeon and neurologist know what each is planning to do.
 
Nikki - Thanx! for your info and clarifying questions. I was trying to be concise in my initial entry...thus, the cryptic form of my missive.

Jan's history...

01/20/14 Orthopedic Surgeon (Delaware) Droopy right index finger & Tingling in right hand
01/29/14 EMG (Delaware Sport’s Center)
02/18/18 MRI (Mid Delaware Imaging) Read by Radiologist
03/07/14 Orthopedic Surgeon (Delaware) Recommended Neurosurgeon
04/20/14 Neurosurgeon (Delaware) Advised C4 – C5/C5 – C6 surgery
04/17/14 Sought 2nd opinion Neurosurgeon (Delaware) 3 problems/2 surgeries: Carpal & Cubital tunnel and Spinal stenosis
05/14/14 Neurosurgeon (Delaware) Performed Carpal/Cubital surgery
6/14/14 – 07/30/14 Physical therapy
09/08/14 MRI (Mid Delaware Imaging) Read by Radiologist (with dye)
09/10/14 EMG (Delaware Neurologist) Right arm (MND?)
10/01/14 EMG (Delaware Neurologist) Left arm, Left leg, right leg (MND?)
10/24/14 Neurosurgeon (Delaware) Scheduled C6-C7/C7-T1 surgery [recommended PennMed Center (Phila, PA)…to rule out ALS?]
11/12/14 Neurosurgeon (PennMed) - Reviewed Delaware info...Administered battery of MND tests...Mentioned possibility of ALS...Scheduled EMG
12/08/14 Neurosurgeon (Delaware) Day of surgery C6-C7/C7-T1 (Anterior Laminectomy)
01/19/15 EMG (PennMed Neurologist) Day to evaluate “change”?

Jan has also had a blood test for the MMN anti-body...it was negative.

The Delaware surgeon did not suspect ALS...he was surprised when he heard. He was operating on 2 different areas - the elbow/wrist on 05/14/14 and the neck on 12/08/14.
Jan's current symptom(s) is weakness in her right arm...and the manual test results by the PennMed neurologist (we were NOT told what these were). The PennMed neurologist does know of the impending surgery...she feels that it would NOT be beneficial.

Phew! Don't know if I've ever typed this much...thanx! for helping me organize what Jan has been through the last few months...we'll do whatever is necessary...when necessary.
 
So the surgery does not appear to be emergent? This was deemed necessary in the spring but ok to delay? I would be delaying it again and either waiting for the neuro follow up and/or getting another opinion. You will find many people with ALS have had surgery to fix a supposed issue that turned out not to be the cause of their symptoms. Maybe Jan needs this but it seems like you have time to get more solid information. If it could wait until December from the spring could it not be rescheduled until February for example? Does the neurosurgeon tell you it is dangerous to wait now? Or if so why was it ok to wait this long?
 
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Per the advice of 2 neurologists, a neurosurgeon, and members of this forum...Jan's scheduled "anterior laminectomy" (12/08/14) has been cancelled...we'll wait to see what the EMG at PennMed on 01/19/15 reveals...thanx! for sharing and caring.
 
I also had my ALS begin in my right hand. The neurosurgeon refused to do anything the first time and the second time he did exactly the procedure you discuss. And the hand got better for a while. I don't think it sped up my ALS, I'm beginning on year seven. I also had a lumbar fusion, but that was due to a birth defect. Take it one day at a time, and remember that the only thing that is changing are her muscles. Good luck! Oh by the way I used to live in Delaware city. And part of the reason was to say close to the medical care in Philadelphia.
Hollister
 
I'm one of those people who had ulnar and carpal tunnel at the same time to address hand problems. The surgery was a complete success. After three months of rehab my left arm/hand strength went to 12% of my right. The hand doc was the first to suspect.
 
My dad had to have two surgeries before he was diagnosed with ALS and they really set him back alot. He had hernia surgery and then had to have his gall bladder removed six months later. We were unaware at the time that he was experiencing ALS symptoms. We just thought his issues were his age and arthritis.
 
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