This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello,

I am new to this forum having discovered it after researching CCSVI. I was wondering if anyone knows of any research linking MS with previous radiotherapy or surgery to the head and neck or chest area. I wonder about this association because of my own personal experience (which I will describle below and because an association seems plausable with this new research on CCSVI.

I am theorizing that radiotherapy or surgery in the appropriate area can cause scarring and adhesions of tissue and subsequent venous outflow obstruction.

Here is my story. I am a 45 yo male. Diagnosed in about 2000. Present EDSS of 2.5. Symptoms have included optic neuritis, numbness and weakness of lower extremities. Initial MRI in 2000 revealed lesion at c2 but nothing in the brain. Since then several lesions have been documented in my brain.

At the age of 17 in 1981, I was diagnosed with a type of cancer called mediastinal seminoma. I had a tumor in my chest and at T12 compressing my spinal cord, causing weakness and numbness. To make the diagnosis they perfomed surgery, an open chest biopsy. I then had radiotherapy to the spinal tumor and then to the chest tumor. There was a small area of overlap of the of the radiotherapy at T4 where the result was a double dose of radiation.

About 3- 4 years after the radiation I developped a band of numbness at the T4 level on the right side of my chest. I suspect this may have been my first episode of MS.

I was wondering if any other members developped MS following either chest/neck surgery or following radiation therapy to the same areas?

Thank you,

North52

Hi North, and welcome!

Speaking only for myself, I've never had any kind of chest or neck surgery, and ditto any radiation therapy.

I've hurt my neck badly a few times though and did wonder if it was a coincidence that my symptoms rocketed afterwards.

Mark.

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Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

North,

Yes I suspected this myself. I had bad C5-C6 disc prolapse in 1997 for which I had frontal diskectomy with fusion and a plate inserted in my neck.

Following surgery I developed DVT in left leg and both lungs and luckily survived that.

Then I started getting arm and leg weakness & numbness symptoms, eventually RRMS dx in 2002.

The difficulty is making the medical case of cause and effect. The link may be there but how do we prove it. Even if we prove it, what can be done about it? That's what the vascular surgeons are going to ask.

Cheers
..Adolfo

My goodness North, I am so sorry you have had such a medical history.

But forgive my intense interest and curiosity because I have speculated that there had to be post surgical persons who developed MS if CCSVI is the cause of MS.

The reason is that it is not uncommon if a person has cancer in the neck or throat to have the jugulars removed as part of radical neck dissection, this is done only in severe malignancies so such persons frequently do not live long.

Length of life post surgery matters because our best estimate of how long this pathology would take to allow lesions to develop is some years, as it does in venous insufficiency of the legs. Therefore the fact that jugulars are removved in such persons and they are not diagnosed with MS in a year is not unexpected.

But I have assumed that there had to be people out there with other kinds of neck issues or people who defied the odds and lived many years after such a surgery that later developed MS. I assumed that since it takes so long even if it was happening people would not make the association. I wonder if you are that person? I can't help but be very intrigued....

Even if you do not like the idea of getting treatment, I would encourage you to consider seeing/contacting Dr Dake or Dr Haacke and really explaining your medical history, I would suspect one of them would be keenly interested in imaging your neck carefully because of the implications.

If it can be shown that persons who had no "genetic" reason to have MS but who had damage to the neck veins then developed MS, this is very weighty evidence that the cause of MS is the stenosis or occluded venous drainage, not the other way around.

Is it possible you had an MRI of your brain pre surgery and can show that you were MS lesion free pre surgery? There may be such an old MRI record.

Welcome and I will be interested in what your workup shows. Thank you so much for sharing your story. Wow...........

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
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Hi North52,

I would just like to commiserate regarding your struggles, too. We rarely realize how lucky we are to have only the problems that we have. I have been thinking of those with Lupus, ALS, MD, and such, and tempering my own joy at a possible solution for us. What about them?

I'll never forget the day I was diagnosed with MS - I went home on the bus, and when I got off, I saw a fellow jerking down the sidewalk. I presume he had Cerebral Palsy, or such. He had a cigarette in his mouth, and a lighter in his hand, and he would stop every few yards to try and light his cigarette, but was jerking too much. At first I wondered at why he was smoking, but then asked him if I could help. I got his smoke going for him, and he expressed his gratitude iwith a strangled "S-t-han-k Oowh". Even though I has floored by what I had just heard at the neurologist, I thought "There are others worse off than I, and at least I can still help".

I'm afraid that, never having had surgery, I can't comment on the surgery/radiation angle, but it makes sense

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My name is not really Johnson. MSed up since 1993

North,

Man have you been thru the ringer.... Sorry! I think we all have our list of battle wounds for sure.

You got me thinking about stress... Initially when I was first DX, the doc. advised me to try to minimize stress.. I kinda laughed, thinking it was basically next to impossible to do... You know, job, kids, bills, relationships etc... Life, generally speaking... what was I to do, lock myself in the house?

SO IN STRESS:

•Your heart speeds up

•Blood flow to your brain and muscles increases up to 400 percent

•Your digestion stops (so it doesn't use up energy that's needed elsewhere)

•Your muscle tension increases

•You breathe faster, to bring more oxygen to your muscles


Typical fight or flight response right?...

Well, you see a bunch of evidence of stressful events bringing about MS attacks.. It follows along very closley with the potential ccsvi (vascular) component. I can't tell you from experience, buy having cancer (or any potentiallly life threating event/surgery - esp. at your young age) has to top the STRESS charts...

Assuming CCSVI is a birth defect: STRESS increases pressure/bloodflow to an already poor venus system...mucsle tension constricts the venus system even further... backup pressure (reflux) allows blood / iron and maybe potentially damaging hormones released during a stress response and breaches the BBB..

This may just all of our problem..

Just a thought anyway !!

Wow...great thread.

On the day I was diagnosed as "probable MS" the neuro, perhaps seeing I was dumbfounded at the news, asked if I wanted to look at my MRI's. I knew nothing about MS at the time and was completely shocked to hear the words come out of his mouth.

So he showed me the MRI's and pointed to a lesion high in my spinal cord that he thought was causing my difficulties. I'd have to look at my notes for the exact locations, but I think the lesion was at C2-3, and very close to a very visable "narrowing" of my spinal cord at I think C3-4. I clearly remember asking him (for lack of any other reasonable questions), if the "narrowing" could have caused the lesion. His response was, "No, it's too far away."

But now...hmmm...I wonder. I've been blessed with a very benign disease course so far. I've only had one full on relapse since the first "episode" which lead to my dx (April 2003). I've only ever had two MRI's and I think the first one showed 3-4 brain lesions plus the spinal lesion, the second one showed 5-6 brain lesions along with a widening of the initial troublesome spinal lesion.

As an aside, I've always secretly (okay, maybe not so secretly) hoped that I really don't have MS. I had dismissed the inital "did the narrowing cause the lesion" question as I have never found anything in any literature that would support that hypothesis. Now, I wonder???

Further, last year though, the resident neuro requested a Vitamin B12 test along with the usual yearly blood tests as my RB cells appears "slightly enlarged" during the the previous years bloodwork. Turns out that my B12 level was 211. Neither my neuro or GP were concerned, both saying it was "low-normal." I did some research and think that they are both misinformed and/or using out-dated info, and that 211 is very low, especially for someone who has a great love of all kinds of cheese and meats. I've been taking B12 since but haven't been re-tested.

I would really like to be tested. To me the CCSVI tests could possibly provide me with an answer. Stenosis or no stenosis?

Anyway, I'm finding all of this investigation into CCSVI very interesting. I've been following since February and I will continue to keep myself educated, thanks in large part to the participants here at TIMS.

You guys are awesome!
Cheers,
Hope

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Dx March 2003
Avonex

Dear North 52,

I had a procedure called pelvic embolization for pelvic congestion done in 10/05. Inverventional Radiologists accessed my pelvic area using the right jugular vein to tie off varicosities in the pelvic area. I thought the procedure was a success, but developed MS by 12/06, with symptoms of numbness starting in 3/06 and a final dx in 12/06 -1/07. I am just starting to make the connection, since hearing of CCSVI.

I have sent my paperwork to Buffalo, and I hope to have the Doppler MRI and other testing if they contact me. I have also emailed Dr. Haacke in Detroit. The interventional radiologist in Detroit says that that it is not uncommon for the jugular vein to narrow after puncture of the jugular vein.

I did a lot of talking at my neuro's office to get the application faxed, which happened today.

Ursa Minor

North 52

Ursa Minor here - I forgot to mention that at the time of dx I was 60 years old (female). Kind of late for MS isn't it? I am waiting for that response from Buffalo, and I hope they don't exclude me because of my age. I also really don't know what I'd do if the procedure was offered to me. I guess I would give the procedure some serious thought.

I've talked to two in my circle of influence so far. Glad Dr. Haacke is keeping an eye towards all these factors as he tallies up the SWI's.

Weight like a ton of bricks if it all adds up.

Mark.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Thank you for all your responses.
Adolfo, I find your story quite interesting. I agree with you that “the difficulty is making the medical case of cause and effect” and it would be impossible to do in this forum setting. I guess I was just curious. If a strong association can be proven between surgery and/or radiotherapy, it would lend support to the CCSVI hypothesis. I did some quick google searches on the issue and came up with some interesting findings that I did not yet have time to look into much and cannot testify to how good the studies are. One study done in Sweden found a positive correlation between radiation exposure and MS. There are a few case reports of MS following splenectomy for ITP. There also a few studies looking at an association of MS with Hodgkin’s lymphoma which is usually a tumor of the chest requiring radiotherapy. The study did not however conclude cause and effect. I plan on doing more searches on the topic and will keep you informed.

As for “what can be done about it”. I think if we can prove this association, it could be useful clinically. Perhaps venous narrowing caused by surgery or radiotherapy may be respond differently to treatments ie they may be more or less amenable to angio/ stenting, etc. Perhaps surgical causes may be more amenable to surgical treatments such as lysis of adhesion as is done with certain cases of bowel obstruction.
mrhodes40, you suggest communicating with Dr Dake, but is he really possible to reach at present, with all this interest in CCSVI? I suspect that it will worsen in the near future.

Hope, I am not sure what to think of your spinal cord narrowing. It does seem a bit bizarre. Perhaps you should get more details about what this is. Was is extrinsic compression? Do you have the MRI report?
North