question re surgery

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question re surgery

Postby Catundra » Wed Apr 09, 2008 10:32 am

Hello, my sister has MS and I visit your site from time to time. I am not very computer techno savy so plse bear with me if I have sent this to the wrong place. My sister was diagnosed 2 years ago and has had a pretty challenging time with her MS. She suffers from a variety of symptoms and manages but not without some difficulty at times--- as I am sure you can all appreciate. Recently (this week) she was diagnosed with Adenocarcinoma, a type of Uterine Cancer. She is ony 49. I am heartbroken. She has accepted the diagnosis and is now ready to fight this additional battle. My question is to you or any members who might know. She will be having a Radical Hysterectomy and we worry about how such a major surgery will impact on her MS. Her gynecologist said it was not an issue.....but if I have learned anything it is that many medical professionals who do not deal with MS directly are not really that up on it in a real way. Does anyone know anyone who has experienced major surgery with MS (or even a RH) and how things went. My sister has experienced optic neuritis numbness, unable to walk long distances, (unable to run at all), neuropathic pain and some minor bladder weakness such as urgency. She did have a major relapse 2 years ago where she was bedridden - unable to walk for weeks - until steroids kicked in. It was after this that she lost her ability to run and developed her weakness when walking. Any info would help as you can imagine. I love her to pieces and would like to be able to ease some of her anxiety with as much info as I can find. Perhaps there is someone out there who has experienced a hysterectomy for whatever reason or major surgery and can share their experience. I guess I am looking for some reassurance which I suppose is really a lot to ask considering how unpredictable MS is - I do not know why I am losing trust in medical professionals. It just seemed she was too quick to say it was not an issue. Thanks for indulging me. all the best to all of you. C.
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Postby gwa » Wed Apr 09, 2008 10:41 am

She may have some MS flare ups, but whatever they are it beats being dead from uterine cancer.

If I were in her shoes, the surgery would be the least of my concerns. If she has a flare up, it will probably pass as most of them do.

I have not had any major surgery since being diagnosed and have no medical license, I am just telling you what my response would be to this diagnosis.

Having a caring sister is a positive for her right now. Good luck to both of you.

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Postby ssmme » Wed Apr 09, 2008 10:47 am

I did not know that I had ms during the delivery of my children (triplets) but I had a c-section and an emergency hysterectomy at that time. Afterwards I had about a year of declining motor control in my left leg and arm. Right after childbirth you are more susceptible to flare ups. That is when I got the ms dx and haven't had any additional exacerbations that I know of. I think the stress of a cancer dx might cause an exacerbation even more so than the actual surgery which might allow your sister some mental relief knowing it's been taken out of her body. Her immediate health is of more importance than the long term almost chronic condition of ms. She should let her neuro know what's going on so that she can get treatment asap if a flare up occurs post surgery.

Good luck and my heart goes out to her.

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Postby Loriyas » Wed Apr 09, 2008 11:01 am

I had a the same surgery as your sister (but not for the same reason). I actually had 3 surgeries that year. It was 2 years ago. At first I thought my MS "behaved" itself during that time. But I soon realized that I had started to have vision issues-focus, nystagmus, some double vision. I started steroids and the problems resolved somewhat but not completely. I had to do 2 courses of oral steroids to resolve the problems. I think if I had realized what was happening sooner I could have started the steroids sooner and maybe not have had as long a period before resolution. I would suggest she pay close attention to see if anything occurs, MS wise. She can then act upon it sooner. Does her MS doc know or was it the gynecologist who said "no problem"? If it was the gynecologist, she should let her MS doc know what type of surgery she is having and if there is anything the doc wants her to do. Best of luck to her and it is great for her that you are such a caring sister.
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Postby Catundra » Wed Apr 09, 2008 1:12 pm

Thank you for your caring responses. Yes, her priority now is fighting this cancer and in that effort the surgery is a definate given. She has put a call in to her MS specialist to let him know of the situation. We will be careful to pay attention to anything MS wise and act on it right away. The gynecologist believes (although we will not know for certain till after surgery) from the the mass that was tested that there is a good likelihood that she is at a very early stage. According to her it has characteristics that lean towards a more favorable prognosis. Here's hoping. Once again thank you very much and all the best.
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Postby AllyB » Wed Apr 09, 2008 1:23 pm

Hi there

Your sister is fortunate to have you supporting her through this very difficult time.

I had a diagnosis of bladder cancer 10 yrs ago, had a major resection of the bladder to remove it (as it had already infiltrated the muscle wall - I was 32yrs old) and 6 months of chemo - and was diagnosed with ms some 18 months later.
Since then, I have had many anaesthetics - some for minor procedures, a couple for bigger ops, and I cannot say that for me there was any direct correlation between ms relapses or exacerbations and any of the ops.

Having said that, it is important that her neuro is aware of what is happening and can give her whatever support she may need - the diagnosis itself and the anxiety and stress that goes with it may contribute to a (?temporary) worsening of her symptoms in any case.

One worry would be post-op infection as many here have had experience of the link between getting an infection and having a relapse.

Also, you don't mention what stage they think her cancer is at, but if she needs chemo, discuss with the neuro as well as the oncologist - chemo is immuno-suppressive, which can be beneficial to ms!

Last piece of 'opinion' - please get her to see a medical and/or radiation oncologist asap (if she has so far only seen a gynae) - just to be sure she is having the correct follow-up treatment - in my country, sometimes surgeons think they have removed all the cancer (and they most likely have), but to be safe and careful, an oncologist should be involved as they are the only docs qualified to decide on any follow-up treatment post-surgery.
Also, radiation or chemo is sometimes used prior to surgery...

I hope I am not being an alarmist, I just want your sister to get the best holistic care possible, and for cancer, this means onco and surgeon (gynae) working together.
It is a scary time, but with you and a great medical team working with her, she will get the best treatment possible.
I agree with Gwa - the cancer is the immediate threat, ms is more chronic and any further relapses can be dealt with IF they happen - the main thing is to get her through this new and horribly difficult challenge.

I wish your sister all the best (and you too!).
Al
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Postby DIM » Wed Apr 09, 2008 9:33 pm

Catundra I don't want to draw you away but if you search LDN works for both cancer and MS so have a search regarding it's use: www.lowdosenaltrexone.org etc
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