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radiation

NVRTHGTTHS
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After battling my neurosarcoid for awhile with every type of medication thought of my doctor and I are thinking about radiation. My sarcoid has concentrated itself in my cervical spine and my doctor is worried that its going to cause permenant damage to my nerves possibly causing paralysis. Now that can't happen because i have a three year old to chase after and he's expecting mommy to be able to do that forever, so what's the next step? My doctor has reseached as much as he can and thinks radiation would be a good option. I was wondering if anyone else has had radiation for their sarcoid and if so how did it do...?

Explore topics in this discussion:

Cancer Surgery CellCept Weakness Pain Cytoxan Prednisone Sarcoidosis Paralysis

8 replies

David2727

I didnt have it but i read articles about positive experiences of doctors who radiated patients with brain sarcoidosis.

Did you also try remicade?

David

NVRTHGTTHS

Thank you for the response. My neurologist has also read that the people that have had it responded well, supposidly it's only been done to brain sarcoid patients and never on the neck (where i have to have it done)
I have tried remicade
methotraxate (twice)
cellcept
Campath (experimental stages actually for MS patients)
Cytoxan (chemo)
And of course the entire time i have taken monsterous amounts of prednisone attempting to lower but not successful.

PurpleSnowflake

Hi, you may ask abot IVIG. It is experimental right now for sarc patients. I am the 2nd person in the world to be taking it for Sarc that involves the nerves. I am treated by the Cleveland Clinic but get my treatment here at my local hospital. I have Neurosarc with Small Fiber Neuropathy and Autonomic Neuropathy, this has literally changed my life. I had severe pain,numbness,arrythmias and sewvere weakness before the IVIG treatments. 5 months into it and I feel 10 times better. I can do most things I used to do. I would ask your doctor what he thinks. It has been used for years for other immune diseases. I take Flebogamma that is the brand that I use.

49er

Here is my experience - not necesarily related to sarc.

When I was 16 years old, I had surgery to remove a malignant brain tumor located in the base of my brain / brain stem. It was followed by Cobalt radiation treatment.

After half a year, I had re-learned how to walk, and later began a normal program in the University and the rest of my career -- Although I think I finally understand why I never could carve a decent parallel turn while skiing.

In 2004, I started to notice definite unsteadiness in my walking and now, after over 41 years since the surgery, I have completely lost it. Meetings with 2 neuro-surgeons revealed that after a while -- usually about 40 years -- the radiation starts to disable nearby healthy neural cells as well.

Caveat: My experience may not apply to you -- except my tumor was only 1 to 3 feet higher than your problem area, Radio-Oncology usually refers to treating cancers with radiation.

Medical procedures have advanced remarkably, since the relatively neolithical age in 1968.
If you aren't already doing so, I would recommend a visit with a good specialist in Radio-Oncology (i.e. Radiation Oncology.

What wil you be doing in 40 years? Good luck.

NVRTHGTTHS

49er
As you know hearing any story relating to your own can be helpful.
That is unfortunate that you are experiencing unsteadiness and I hope it goes away.
I am going to a Radio/Oncologist next Thursday for my first consult with him. He has all of my records and has corresponded with both of my neurologist (Yes, I have 2 one in my town and another at Barnes Jewish in STL) My Neurologist in STL wanted me to have it done there but I've been traveling back and forth so much that after talking to the Radio/Oncologist he said it was ok for me to have it done here.
Other than having to learn to walk again, did you have any side effects specifically from the radiation? See as far as we know radiation of the neck for neurosarcoid patients hasn't been done before. They are concerned that because of my age (26) that i will develop cancer later on, but at this point and all the different drugs i've been on i would be surprised if i don't get cancer at some point.

NVRTHGTTHS

Purplesnowflake,

As a matter of fact my neurologist did do some type of testing of my immunogloubins and resulted that treated most likely wouldn't work for me; but i'm going to mention it again now that it has been brought up again. You just never know what can happen; thanks for responding.

HopeNicole

nvrthths
How did they discover it was in ur neck? Wat test did they do? Because i think it has spread to my neck also. Wat symptoms do u have and did u hve probs w ur arms and shoulders as well?

NVRTHGTTHS

HopeNicole,

Sorry this response hase taken so long; I have been having flare ups so sitting at a computer doesn't help. MRI's with and without contrast is what showed progression in my cervical spine. I have A LOT of what i call lightening pain, very sharp and does bracnh out to my extremeties. There is also a constant pain that stays all the time in my neck and upper shoulders. Pain is the main symptom i have had but sometimes i will have numbness and tingling in my arms and legs. I would suggest getting a MRI to see what's going on with you; this can be very serious if it has progressed there because the inflammation can cause permanent damage.
Best of luck to you

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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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