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Have you ever asked for a second opinion?
Difficult surgery for DS coming up - want to make right decision


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21 replies to this topic

#1 cactus

Posted 25 January 2013 - 08:45 AM

Morning.

After banging on about my son to the consultant for 2 years, we had a CT scan last week, and it shows he has a mass in a difficult place (ie near nerves/tiny area to work in).... I feel that I was pretty much dismissed as a worrier, but my own experiences of a very similar issue mean I knew what I was worrying about.

So, I have no qualms about their surgical skills, but I'm feeling a little more nervous than I would be already (ie out of my freaking mind).

I have knowledge of this medical area so immediately knew who to ask for a second opinion.

BUT there are pros and cons

Pros to our current surgeon:
Familiarity
V close to our home
Great anaesthetist
Very good reputation - esp. Paediatric

Cons
I no longer feel safe
The other surgeon has many years more experience - international reputation etc etc..


This all started in a private  hospital, and it will all break the bank anyway, so am beyond looking at the money side of it - I suspect the other surgeon is even more expensive, but we can borrow the money if necessary.

So, I knwo alot of this is about my own childhood experiences, and not feeling listened to. I know that keeping it local/familiar is in my son's interests, but wwyd?

Many thanks

Hates having to make life-changing-decisions-for-my-babies-Cactus

#2 Maple Leaf

Posted 25 January 2013 - 09:07 AM

Sure! I would ask for a second opinion definitely.

It will put your mind at ease to know that you have looked at every possible option and even if you remain with surgeon 1, you will know in your heart that you went with that decision with every single bit of knowledge available and have made a fully informed decision.

Knowledge is power, get a second opinion. original.gif

I don't put much stock in 'keeping it local', I much prefer going for the best outcome regardless of geography.

My mom went to another country to have surgery with the surgeon who actually invented the procedure she was having.
Geography means nothing in the grand scheme of medical care (in my opinion). original.gif


#3 CafeCat

Posted 25 January 2013 - 09:42 AM

On several occasions I have asked for a second and third opinion. In three very specific instances it has been vital. Listen to your intuition!

#4 Therese

Posted 25 January 2013 - 09:45 AM

I think if you have any concerns it is worth getting a second opinion.

#5 sad small umbrella

Posted 25 January 2013 - 10:58 AM

Second opinion.  And good luck!

#6 PinkSurvivor

Posted 25 January 2013 - 11:04 AM

Different situation but yes I got a second and third opinion. I got told twice I didn't have cancer thank god I listened to my gut and went to a third doctor seven months later or I don't think I'd still be around.
It never hurts to get a second or third opinion to ease anxiety, find out different treatment options or just to see which doctor you prefer.
Best of luck OP. it's normal to feel anxious at a time like this hhugs.gif

#7 YodaTheWrinkledOne

Posted 25 January 2013 - 11:59 AM

I'd get a 2nd opinion.  If in doubt, go the 2nd opinion.

QUOTE (Maple Leaf @ 25/01/2013, 09:07 AM) <{POST_SNAPBACK}>
I don't put much stock in 'keeping it local', I much prefer going for the best outcome regardless of geography.

agree with this. Your child is better off getting the best possible treatment, where that happens is a secondary consideration (not to be ignored, because of the cost/logistics, but it's not the primary criteria for making the decision IYKWIM)

#8 Guest_Dinah_Harris_*

Posted 25 January 2013 - 12:06 PM

Yes, I would absolutely without a doubt get a second opinion.  


#9 Feral-as-Meggs

Posted 25 January 2013 - 12:14 PM

So you are going through this.

I agree with PPs, and talk to the new doctor.   It may be that the new doctor has exactly the same recommendations, and expresses every confidence in your old doctor and you decide to stay with him anyway.

#10 mmuc83

Posted 25 January 2013 - 12:18 PM

Definitely seek second, third, fourth opinions if necessary....

My dad went to 4 specialists, where one stated that he had mental problems, before he was found to have bladder cancer!

Go with your gut - but try and put your fears aside to get the best possible objective decision for you child.. hard i know... but it's worth having that extra piece of mind.

#11 IsolaBella

Posted 25 January 2013 - 12:23 PM

I went with a 2nd opinion on DS2s hearing.... All that did was confirm 1st opinion, but the I was not second guessing myself. I stayed with the original ENT.



#12 Jax12

Posted 25 January 2013 - 12:27 PM

Your pros and cons list seems to be more about if you actually went with the other surgeon.  Are there any cons for just seeking the second opinion?  It doesn't mean you have to go with them for the actual surgery - you can make that decision after the consultation...I would absolutely do it.

#13 notorico

Posted 25 January 2013 - 01:02 PM

Sorry to hear that OP.

Four years ago we found ourselves in a similar situation. We spent two years looking for answers while DS condition deteriorated. He finally had an MRI (pretty much to shut me up because specialists thought I was neurotic) and it showed a lesion in his brain stem. On the day of the MRI DS was a day or two away from brain death. The tumour itself was inoperable but he required other surgery to deal with pressure.

We ended up staying with the same hospital we were dealing with, and a whole team of experts joined the neurologist that was treating DS. We did however drop our paediatrician, because we felt she was more to blame. Whilst we felt let down by the neurologist we felt that now we knew what we were dealing with the team at our hospital provided the best care.

Having said that we have seen the best neurosurgeons around the country to confirm our treatment plan was the best option. Last year we changed surgeons, due to lack of confidence.

Getting a second opinion does not mean you have to change. We see our neurosurgeon regularly but we have also seen a world renowned brain tumour surgeon who we will consult again when the time is right and he is happy for us to keep seeing our own surgeon as well.

PM if you want to chat or if you think I can help in any way.

#14 cactus

Posted 25 January 2013 - 03:41 PM

Thank you so much everyone, I haven't been able to get back to the board til now..but did see some of the comments earlier...and have been having copies of info sent to the second surgeon for an appt on Tuesday.

Am still a little unnerved by the idea, but we'll see how it goes.

Just fyi, I wasn't talking about close to home being an imperative for me, just that for my son it was worth considering that he would be on familiar territory.

thanks again,

Cactus

#15 cactus

Posted 25 January 2013 - 03:45 PM

Sorry, did not see the second page  ohmy.gif

I hadn't thought about it purely in terms of "wwanothersurgeond?"..of course that's a worthwhile purpose in itself.

I guess I'm realy worried about offending the original doctor, but not so much that it's more important that my son's quality of life!

Last poster - I'm very sorry for your experience, must have been very harrowing, but I feel very reassured to know you (and others) have used extra opinions so much.

Cheers, and thanks again

Cactus

#16 Z-girls rock

Posted 25 January 2013 - 03:54 PM

yes.

I had one of the top neurosurgens in Sydney. But I thought he was not diagnosing me correctly and fobbing off my concerns and telling me I HAD to have symptoms that I didnt have but that I just HAD NOT NOTICED them Myself.... sure... sure.

this went on for about 3 years from when I was 15 until finally at 18 years old I asked for a second oppinion.

the second neurosurgen listened to me and diagnosed me correctly. She was brilliant.

I was young and it was hard to be assertive but so glad I did. Sometimes even the smartest person is not so great - not if they are not prepared to listen to their patients.

#17 capper

Posted 25 January 2013 - 03:55 PM

My son had major surgery in a small difficult place and around nerves.  I gotnansecond opinion and the doctor wanted to do a massive op, that the first doctor thought was unessecary and would cause lifelong issues.  So, we went back to the first.  Nice t have that option though.



#18 *cough*

Posted 25 January 2013 - 04:01 PM

Absolutely. I have a cyst in my brain and got a second opinion. I now feel very comfortable about my decision.

#19 cactus

Posted 25 January 2013 - 04:07 PM

The information you are all sharing is so useful, thank you so much.

It is so hard to get past how ANGRY I am, and tbh, I suddenly understand the urge to sue, just so that they GET what they've done/left us with. Not that I would, but I judge less.

Keep'em coming - all helpful!

Much-happier-than-this-morning-Cactus

#20 niggles

Posted 25 January 2013 - 04:08 PM

Yes. We got a second opinon after our daughter's surgeon changed his mind about operating on her hip. I didn't want to wait another year only to find it would suddenly become necessary again so needed another opinion to be sure.

#21 ani1

Posted 25 January 2013 - 04:13 PM

QUOTE
I'd get a 2nd opinion. If in doubt, go the 2nd opinion.


This, go for one if you are not confident and have doubts.

#22 Feral Madam Mim

Posted 26 January 2013 - 03:29 AM

QUOTE (Therese @ 25/01/2013, 07:45 AM) <{POST_SNAPBACK}>
I think if you have any concerns it is worth getting a second opinion.

This.

I have gotten 2nd opinions many times when I was not comfortable, even if just to put my mind at rest it was worth it.




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