Surgery and MS- have you had any?

[Lulu54]

Drsdonthelp asked a question about surgery and MS relapses.  It makes me wonder what experiences you have with surgery that you can share here?

Have you had emergency surgery, like an appendetomy?  Have you had planned surgery, perhaps a hysterectomy?  Have you had elective surgery, such as cosmetic surgery?  

How did your body react to the surgery and did you suffer any relapse effects?

I know many of you out there have been under the knife recently and we would like know more about your experiences.

And no, I am not contemplating any nips, tucks or implants!  Just looking for some data from real life patients and not  some test subjects!

best, Lulu

[kwarendorf]

Hi MM & QB -

This is a very old thread and most of the participants no linger visit the forum. I just didn't want you to think you were being ignored :-)

Kyle

[Qbell1977]

Same here... worst headache of my life.  I think it was due to intubation as I have jaw spasticity, neck/shoulder spasticity and trigeminal neuralgia.  Mine lasted for 2 weeks!  I'll never be intubated again unless I absolutely have to.

[mistimouse]

Sorry .... new here. Meant for comment to go to you. My apologies

[mistimouse]

I had a total abdominal hysterectomy on March 4, 2015 to hopefully improve quality of life and rid pain. Now I'm noticing MS symptoms. I'm having disoriented thinking, numbness in legs, and equilibrium issues. This is why I searched for this site. I have RRMS. Hot flashes and night sweats probably don't help my MS either. I was diagnosed in '07 through MRI, cat scans, and spinal taps. I'll keep all of you in my prayers that your surgeries and answers go through successfully without any MS "hitches". Love to all!

[lilly060780]

I've been diagnosed with MS for 14 years now and since I've had a biopsy and my gallbladder removed with now complications.  At the end of this year I plan on having elective surgery.  My body may decide to have a relapse just because its Tuesday so my motto is.....   RIDE IT TILL THE WHEELS FALL OFF!!!

[Lulu54]

WAF, have you talked to the doctors about this weakness and the other symptoms?  I hope so.... it sounds like it is significantly impacting your quality of life.  Please don't try to just tough this out.  -Lu

[drsdonthelp]

I have done alittle more research on this very subject and have seen some articles or (whatever you call it) can't think of the word right now, about how the trauma from a major surgery can cause an ms flare and how some Dr's will be very cautious with a patient with ms because of this.

Of course i have no idea since I am not dx with ms, however; my GP was very concerned with all of my surgeries and how they affect me afterwards. It is definately a thought that is out there.

Thanks WAF for responding,  HUGS, Pamela

[MsWobbles]

Actually, another postsurgical reaction comes to mind now:  I had the worst headache of my life at the base of the back of my head about 4 days after surgery. A very strange, stroke-like headache.

WAF

[MsWobbles]

I wasn't going to respond here because I don't have a diagnosis yet, but I do have something that appears to be a neuro condition and since Lulu was sorry that not enough people responded to her thread, here goes.

I recently had minor surgery - a muscle biopsy involving MAC and a fairly deep incision. Since the surgery, I have had a UTI and, though on antibiotic already for several days, recently had a "sudden suprise" while at Walmart - a mini-flood - which was a first for me.  Maybe it was just caused by the urinary tract infection.  Made me think of Quix.

My worst increased symptoms since surgery have been my greatly increased muscle tone, mainly in my lower legs - calves and feet.  Lots of cramping. One time I knelt down and my nonsurgical leg went ballistic cramping.  Some mornings since the surgery, my nonsurgical leg has contorted up when I first get out of bed so that I couldn't even get my foot flat on the floor to walk.  After a couple of minutes it would settle down and then I could walk.  

The next thing I've noticed since surgery is my increased klutziness - I am often a little off now when I reach for something.  For the past 2 mornings, I have knocked the ceramic bowel I use to wash my CPAP mask first thing in the morning into the sink - making a loud clattering noise that helps me wake up.

The only other symptom I feel now is greater weakness - so I have been using a cane indoors.  My feeling of weakness is so bad now, I'd swear I had leukemia!!

That's it for my postsurgical symptoms.

WAF

[drsdonthelp]

I cant agree more!!
No date yet, I will keep you informed, thanks, Pam

[Lulu54]

Pamela,
That really does ****. It sounds like this is not optional at all, so how about we approach this from a different angle - think positive that this will work, will not complicate your symptoms and will be successful in halting your eye disease progression.

Do you have a date set?  Be sure and keep us informed.

Lu

[drsdonthelp]

Thanks for finding the posts regarding surgeries and ms, I wish this surgery was for cosmetic reasons , because then I would not do it. My surgeries have been to prevent going blind in the right eye and optic nerve compression to both eyes, I needed to have eyelid retraction to lower my lids so my eyes wouldn't end up with corneal abrasions, and eye muscle surgery to correct the double vision, my last surgery is to reset my eyes because they have sunken in too far and the surgeon now thinks that because the orbital decompression to set them back in and my sinus problems is why they are sinking. It ***** but with graves eye disease you have multiple surgeries. and thats why i am so concerned with all of this.

I appreciate everyones input , thanks Pamela

[Wobbly]

Mary.. thanks for the input.. and yes it could be an increase of problems, she did mention that.  I'm seeing her again in a few months, she does have me on the list for surgery, but she wants me to talk to my GP and think about it first.  

I talked to my GP and he feels surgery would probably be the best option. So, I will talk with her in a few months and decide..
thanks
wobbly

[twopack]

For me, the decision to cut or not would depend on what the surgery was and what expectation I had for it to improve my life or perception of myself and the recommendation of my doctors.  The lines between cosmetic, elective, and necessary surgeries aren't always clear cut.  Can you tell I am not fond of absulutes (other than the kind found behind bars) and would have trouble coming to a quick decision about anything important?

Wobby, maybe you need to find out more specifics about why the surgeon doesn't feel comfortable about doing this surgery.  Maybe it has more to do with present deficits than with worry about future symptom increases.  There are problems that could increase anesthesia risks (respiratory, for example) or become unmanageable (urinary, for example) after surgery that are less desireable than any benefit of proposed surgery.

I can only guess but I assume the surgeon believes some risk outweights the benefit.  If you don't understand after he explains, I'd ask your neuro to help educate him (or you) or ask him to refer you for a second opinion.

Mary

[essdipity]

Assuming I were in the market for cosmetic surgery, which I'm not, I'd decide against it, especially anything major, in view of MS.

I'd certainly go through with any necessary surgery, because the benefits would outweigh the risks for me. But vanity isn't reason enough for me to risk a major flare.

ess

[Wobbly]

Hi everyone, I'm Dx with progressive MS, no relapses... I need some major surgery and the surgeon doesn't want to do it because of my MS??

I don't understand it, I don't get relapses, so why are they having a hard time with approving the surgery.. they want me to try other options without the surgery?  

any thoughts on Surgery when you have Progressive MS...?

thanks
wobbly

[Lulu54]

DDH - I did a quick search here for the topic and found the following links that might be of interest to you and others contemplating cosmetic surgery ... you could write directly to those members who responded that they had surgery and ask about their experiences......... The key point seems to be that you need to discuss this thoroughly with your neurologist.

http://www.medhelp.org/posts/Multiple-Sclerosis/Cosmetic-Surgery-and-MS/show/312367

http://www.medhelp.org/posts/Multiple-Sclerosis/elective-surgery--cosmetic-procedures--and-MS/show/725800

http://www.medhelp.org/posts/Neurology/MS-and-Plastic-Surgery/show/1008481

[Lulu54]

DDH - I was hoping even more people with recent surgery experience  would respond to help you out - it sounds like the ones here who took the time to write had little to no problems connected to their surgery.  

[Sailorsong]

I don't know how I forgot about there other 2 surgeries I have had.

The first was in 1995 and was an angioplasty after my first heart attack. I was very run down after that one, but I did end up with significant blood loss during that one..So I guess that could be expected and I don't think it was MS related.

The second one was a 3x bypass in 2005 after my second heart attack. This one I had no problems with either.

Dennis

[sllowe]

I don't know how long I had MS before dx in 07, but my procedures the couple yrs prior involved lithotrypsies for stones, a botched failed extraction, as well as a stint placement, etc. I had no MS like symptoms, just general post procedure nightmares.

This is a great discussion with questions that have been brought up over and over through the years. I hope more voice their concerns and experiences.

-Shell

[ashleyPT]

I'm sure I see more of the not so good stories since they only end up coming to me if something bad happens.  

I had two patients in the last 2 years that had an MS diagnosis and went in for knee replacement surgery. One had a horrible relapse of weakness in the non-surgical leg and then a string of smaller relapses for about 3 months after the surgery.  She had not had any surgical complications such as an infection.

The other stated a minor relapse, but it was not affecting something that was PT related so I'm not sure of the actual details.

I tore a ligament in Feb, and my orthopedic surgeon said he would not do surgery on it at this time just because of my neuro symptoms. I was surprised that he was so skittish.

[twopack]

I've only been diagnosed with MS for less than a year but lesions are clearly visible on an MRI from 1990 when I had my first symptoms.  I have to assume it's been MS causing various nysterious symptoms all these years.

I've had several surgeries during that time.  Two were major in every sense.  My right knee was replaced in 2003 after spinal anesthesia and some wonderful twilight sleep.  The replacement was replaced in 2008 as I rested under general anesthesia.

None of the surgeries caused any measurable increase in MS type symptoms.  I think I have taken longer than some people to recover strength and heal completely.  I think therapy was sometimes harder or more painful for me because of spasticity and muscle loss (I originally thought that was from dis-use of the leg but it has never built back up and I now think it is MS related).

I did have increased fatigue after these surgeries but I was also anemic from blood loss and on some powerful pain medications.  I also stopped taking my regualr Provigil dose during much of the recovery period.

For what it's worth, I wouldn't let my MS diagnosis stop me from having future surgery.
Mary

[drsdonthelp]

Thank you for following up with this. It looks as though my symptoms are because its me not ms related LOL I must not be lucky enough to have a surgery and my recovery go good. I just dont get it.

[Sarahsmom46]

I had an acute gallbladder attack last May while in the hospital recovering from a relapse. The surgery  was scheduled the next day and fortunately I had no problems during the surgery or post-operative.  My recovery was pretty straightforward with no complications.  

Also, I had just been on a 5 day course of IV solumedrol before the surgery (for the same relapse) and that didn't cause any additional concerns either except that I was given a steroid booster steroid during the surgery.  

In my case I was not sent home to recover so I am not sure if the stress of surgery and then going home afterwards might be an issue as well as whether the surgery is major versus minor.  I'd be interested to see what others have to say about their experiences.

Julie