Need input please about surgery and development of new lesions and/or worsening of MS symptoms

[Csativa]

A few posts ago, I mentioned that I would need surgery to remove some neurofibromas from L5 and possibly S1, and that neurosurgeons specializing in such surgery are hard to find.  Well, I finally found a superb neurosurgeon who specializes in spinal neurofibromas and degenerative disk disease at Massachusetts General.  

Another piece of good news is that because there are no such surgeons in my insurance network, my  medical care will be covered in full, minus a $35.00 Co-pay.  I'm gathering all the information and will be able to see him for a consult in about two months.

Anyway, I have heard and read about how surgical procedures can possibly result in the development of new lesions and/or increase in the severity of MS symptoms.  I need to stress the word “possibly” because it's crucial I maintain a positive frame of mind, so-to-speak.   At this point, the fact that I have MS is irrelevant in making a decision as to whether or not I choose to have surgery.    

While I obviously have a choice, the fact is that without the surgery, my dysfunction will steadily worsen and I will definitely end up in a wheelchair – permanently!  

While I certainly have plenty of information available to me, I really would like to know what people's experiences have been, if of course, you have had surgery.  I realize that everyone reacts differently and there is no way to determine how I might react based on what people say.  

It's probably not going to matter one way or another in terms of my making a decision.  I am not quite sure how to articulate what I am feeling or what I am looking for.  Well, I do know that I am feeling a great degree of insecurity.  What I want to know is fairly obvious as well as impossible.  I want to know that my MS symptoms will not be negatively affected nor will I develop any new symptoms.  I know you are all to ethical to bullsh_ _ me, so I guess I'll leave it at than and shut the heck up.  LOL  Thanks all.

Frank

[Audrey_M]

Frank:

"I want to know that my MS symptoms will not be negatively affected nor will I develop any new symptoms."

From reading the responses, it appears that surgery will not negatively affect your MS symptoms.

With the back surgery, you may find that you have relief from a lot of sx that are due to neurofibromas and that will be a blessing. If the surgery goes as planned, you should regain a better quality of life from relief to pressure on your spinal cord.

As for the second part of your concern, you have been diagnosed with MS and it is a progressive disease. That being said, part of MS is accepting that it is progressive and with it comes the likelihood of new symptoms. I'm not trying to be a downer on this one,  just trying to be realistic about what MS is. At this time, it is hard for anyone to know which sx are attributable to your back problems vs. MS.

Like you, I am facing the possibility of back surgery. Neuro is concerned about the extent of DDD in the C spine and I am now experiencing severe pain in the lumbar spine as well (where problems were previously noted, without any spinal cord involvement).

Until I have the evaluation, I won't be in the same position as you, where you recognize that you will end up in a wheelchair without the surgery. Right now, I am more concerned about weighing the benefits of surgery against the risks. Until I have that consultation, I don't have anything to go by.

Glad to hear that you have found an excellent surgeon AND that insurance is going to pick up the bulk of the tab.

Good luck with the surgery and sending best wishes your way for a speedy recovery.

Audrey

[twopack]

I'm sure your neuro and neurosurgeon will be able to combine their special expertise to give you more specific risks for your situation.  In general there doesn't seem to be any clear connection between have surgery and increasing MS symptoms or lesions.

Are you extra concerned because this is spinal surgery?  Do you already know you have MS lesions of the spinal cord?  I don't know of any indication that spinal lesions are more likely because of surgical trauma close by.  If that's what has you worried, I'd certainly ask the direct question when you have your appointment.  In fact, use the time you have to try and clarify your greatest worry so you can make the most of your consult time.

As you say, even without guarantees about surgery results or the effects of this on your MS, it's hard to choose against the one treatment that can keep you out of a wheelchair.  It's hard enough to deal with one disease.  Even harder to start juggling with multiple balls in the air.  For me, I'd have to look at the worst outcomes and see how I thought I'd be able to handle them (knowing it's always different than what we imagine).  I'd make my decision based on what potential outcomes I think I could tolerate.  And then, of course, expect and live toward the best.

In case it's the anesthesia that worries you, Lulu posted comments from the MS society about anesthesia risks related to MSers in this topic.
http://www.medhelp.org/posts/Multiple-Sclerosis/Anesthesia-and-MS/show/1162279

As far as the piano.......L5/S1 + oops shouldn't pose a threat unless you use a lot of pedal.  Please excuse the dark humor.  You sounded like you could handle it along with the no BS.

Please keep us updated on your progress.  And, btw, excellent work in advocating for yourself to find the best surgeon for you and getting the insurance on board too.  It convinces me you will make the best choices for yourself once you get all the info gathered.

Mary

[COBOB]

I guess part of this is "cause and effect."  There will always be some folks that have a relapse right after surgery that were going to have a relapse if they didn't have surgery.  I looked in the literature for some studies, and most are "retrospective," not "designed."  What the retrospective studies say is that "Trauma and Injury do not have a statistically causal relationship with exacerbations."  That being said, there are also studies that show that the stress associated with life events have been statistically associated with exacerbations.  So, while the surgery may not cause a relapse, the stress related to worrying about it might.

Shell has the right idea.  Think happy thoughts!

Bob

[sllowe]

Don't worry Csativa! I've got his stones covered (three of them to be exact)!

I'll keep them for him until after your surgery!!!!!!

Happy thoughts, happy thoughts, happy thoughts, lol

-shell

[drsdonthelp]

I just recently asked this same type of question, surgery and MS relapse.. My problem has been after each major Eye surgery, 3-4 months later, I had a neuro. problem occur.
Slurred speech for two weeks one year apart and if you read my other posts its all there.

I see you are from syracuse,, that is where I go for all of my surgerys and eye specialists,, I did have my first neuro from there, but he dx me with a TIA at 36 years old and when I went back to him with my other problems, and I told him that I was beginning to feel that feeling in my face that I was going to start to slur, he didnt send me to the hospital for further investigation, nooooooo , I was sent home 45 minutes away and was told to drink more water for my lightheadedness......  I do not see  him anymore.

take care, Pamela

[Csativa]

Thank you so much.  It's difficult to articulate, but the information and the compassion mean so much to me in more ways than one.  A “journey” into surgery is difficult to all who have to deal with it.  

OK, OK, OK, enough of the sweet, syrupy, drizzle – from me that is.  I mean is not like I'm having brain surgery.   I just need to maintain a positive frame of mind and keep the following scenario out of mind:

Scalpel in hand, the neurosurgeon is focused on making the last cut to excise the tumor.  And then suddenly, he is hit with the unbearable pain of a kidney stone.  Then most hated words in neurosurgery lexicon are uttered ----OOOPS!! There goes 10 years of piano lessons.

Seriously though,  Thanks again!!

Frank

[HVAC]

I had my gallbladder out last May. I know that was nothing in comparison. The hospital and surgeon took extra precautions but I healed up quickly with no complications. I did not even see the surgeon for a follow up.

Good luck and I hope will be sending positive energy your way.

Alex

[essdipity]

Just some anecdotes here---- I have had two surgeries since MS, and neither caused any complications or flares. Obviously that's just me.

What Q said about cause and effect is very important, to my mind. Every single relapse is preceded by *something*, because stuff keeps happening in life, whether good or bad. But it's virtually impossible to say that that something caused the relapse. We do know that infections are involved way more than chance would allow for, so that's at least a little information.

The relapses I've had (and I'm fortunate that they've been mild compared to much of what I read here), I can't associate with any particular event or circumstance, with one exception, and still, that could be coincidental.

I know you want reassurance, yet you so obviously realize there really isn't any. So I'll just wish you luck in whatever lies ahead. One thing we can be sure of is that this forum will be here to bolster you and cheer you.

ess

[Quixotic1]

I have looked this up and the analysis of surgery in MS patients shows repeatedly that surgery itself is not a risk factor for MS.  I know that some members have seen relapses or the first presentation of the disease itself in the months following surgery, but a good case can be made for "something" preceding every relapse.

Now, if that surgery becomes very complicated with great stress following it or, especially an infection, you can see an exacerbation.

I asked my MS neuro about surgery on my foot, because I already have sympathetic damage to that foot, plus the weakness and spasticity because I was worried about triggering a severe pain syndrome called Complex Regional Pain Syndrome or (priorly) Reflex Sympathetic Dystrophy.  He stated there should be NO problem in getting the foot fixed to normalize my gait.

Now, guarantees???  Silly rabbit.  I just offer that statistically and per my neuro there is no great danger.  However, this was in reference to me only, and I know he feels that my MS is following a very indolent course.  Sometimes, though I would like him to be up with me at night mopping the floor and still tell me it is mild.  The difference is that, while I do have some significant symptoms, the course itself has been pretty slow.

That's about all I can offer.

Quix