[Giorgi Galas]

Denervation of left shoulder, arm, and forearm muscles

by Giorgi Galas on Fri May 15, 2015 4:08 pm

Hi,

This is my second post, as I found extremely interesting responses to my cases, I decided to initiate new topic about my new challenge.

My wife has relapsed multiple myeloma after a stem cell transplant (SCT) in 2013 and two cycles of Velcade chemotherapy. Last thing we found was a extramedulary plasmacytomas on cauda equina. We are undergoing ir­ra­di­ation. (I described more about my wife's case in my first posting here in the forum, "Extra­medullary plasma­cy­tomas in eyes, spinal nerves", which was on March 30, 2015.)

Before the irradiation started in January, she felt pain in her neck which radiates to her left scapula down to the elbow, sometimes with numbness of fingers, sometimes the pain is like pressure is in the neck and upper spine, sometimes she thinks it's bone pain also along with the nerve pain. This is what we thought to be osteochondrosis. We treated it well, but it is re­current.

Two weeks ago she noticed a little deviation of her tongue to the left because of this and weakness in her left arm. She underwent MRI of the neck, brain, and spine, but doctors found nothing.

Then neurologists required myography. It revealed that there is a nerve problem: According to the data, there is:

Denervation of left shoulder, arm and forearm muscles - M. Deltoideus, Musculo­cu­taneus, Trapezius, Supraspinatus and Extensor digitorum that are corresponding to upper brachial plexus lesion."

For details, please find attached document.

Last time we had Velcade treatment was in July - August 2014.

Our local doctors here in Georgia (in the Caucasus, between Russia and Turkey) thought it is peripheral neuropathy from the chemotherapy. But our other doctor (in Berlin, Germany) does not agree with them that this kind of denervation is caused by the Velcade. Due to the fact that there is not consensus among doctors, they are not still sure of the reason for the problem. Our local doctors prescribed Gabagamma (gabapentin), Thiogamma (thioctic acid meglumine), Bicomplex (vitamin B) and Roitoil (?) to treat the denervation.

I would be grateful if one can share his / her experience or has an idea what is the reason of her pain. It would help us to plan treatment correctly and have right expectations.

Thank you all in advance.

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[Dr. Edward Libby]

Re: Denervation of left shoulder, arm, and forearm muscles

by Dr. Edward Libby on Sun May 17, 2015 1:16 am

Hello Giorgi,

I am VERY sorry that your wife is having to struggle with this difficult disease. Based on the in­formation available to me in this and your earlier post, I am concerned that something – perhaps myeloma – is pushing on the brachial plexus, or that there is myelomatous involvement of the nerves of the brachial plexus. The brachial plexus is a bundle of nerves running from the neck and spine, and then traveling down into the arm. The brachial plexus passes through the neck to reach the armpit region and into the arm, including the hand, innervating these areas.

The tongue deviation may be an injury to the hypoglossal nerve, which is one of the cranial nerves. The tongue deviation suggests involvement of the hypoglossal nerve and upper central nervous system with multiple myeloma. I note that, in your forum thread, Dr.Ken Shain suggested considering intrathecal chemotherapy because your wife had the myelomatous spinal cord in­volvement. Has she received chemotherapy into the cerebrospinal fluid (CSF) ?

I would suggest that your wife see a neuro-oncologist if possible. Testing of the CSF around the brain and spinal cord for myeloma with a lumbar puncture (spinal tap) is needed as well as chemotherapy into the CSF. I agree with Dr Shain that the choice of therapy at this point must be made carefully, and with the entire picture of your wife's health in mind, and that it is very important to establish the goals of therapy.

I wish you and your wife godspeed in your battle with multiple myeloma.

Thank you for sharing your story with The Beacon and its readers.

[Giorgi Galas]

Re: Denervation of left shoulder, arm, and forearm muscles

by Giorgi Galas on Sun May 17, 2015 5:36 am

Dear Dr. Libby,

I'm so thankful for your thoughtful reply that provides exhaustive information about the possible reasons and treatment ways.

I will refer to neuro-oncologists if they exist in Georgia. In fact, I have talked with our local haematologist. Even though he is not neuro-oncologist, he is able to plan and conduct CSF chemotherapy according to the recommendations of Dr. Shain.

Once again, thank you and The Myeloma Beacon for this opportunity to receive up-to-date professional recommendations for individual cases.

I will post results of our future actions.

Best wishes,

Giorgi

[Giorgi Galas]

Re: Denervation of left shoulder, arm, and forearm muscles

by Giorgi Galas on Sun May 17, 2015 6:26 am

Just a quick question to further clarify the issue.

We tried MRI and CT of the head, neck, and spine seeking for visual evidences of plasmacytoma that causes the pain and tongue deviation. But as I have mentioned, doctors found nothing there, only two spots that we are irradiating (I guess you have read the information about this issue from my previous post).

Dr. Libby advises us to do a lumbar puncture. If there is myeloma in nerves, is the puncture the procedure that will give us an evidence?

My major concern is that if there is nothing in spinal fluid revealed by puncture, should we still have to conduct CSF? Of course, we are not against any procedure, however, we would like to have correct expectations and estimations of the diagnostic procedure. How does the puncture result affect the plan of CSF?

I understand that these all are the issues we should ask to neuro-oncologist, but I'm afraid we do not have a physician with such a narrow specialty here in Georgia.

Thank you.