Reaching out for my wife - MS?

[AshB]

Good morning everyone,

                                  In April my wife had an aneurysm and it was coiled. Since then she has experienced some sight issues in her left eye that shows up as a grainy area towards the nose side when she closes her right eye but this has become a side issue to what the scan showed up on Tuesday.

 

Anyway..........some 7 weeks ago she had an MRI scan to see if all was okay with the coiling and last Tuesday she got an appointment with the neurologist at Walsgrave Hospital in Coventry which is where the operation took place to discuss the scan. The neurologist was there who we had spoken to before plus another who was sitting in on the meeting.

 

After discussing the scan which showed the coiling to be intact they pointed out about five small white dots on the other side of the brain. They seemed to talk between themselves as though we were'nt in the room and one said I don't think it's signs of MS and the other shook his head but they said that it's a little early for these spots to show up.

 

They asked her age (54) and if she has ever smoked. She said she hasn't but her family has a history of Cardio Vascular disease and her father died from a heart attack in his mid 40's. She is now on blood pressure tablets as of two months ago and her cholesterol levels were found to be borderline high when checked around the same time. She eats healthily and is not over weight. 

 

Now the neurologist has decided that another MRI scan should be done in 6 months instead of the 18 months initially discussed and that he is going to refer her to someone more specialised in this area. 

 

We are now thinking is six months too long to wait? Are the white spots vascular disesse realated, is it MS or a direct result of the aneurysm? I just wish MS hadn't been mentioned in front of us. 

 

He gave us the mortality statistics for the outcome of an aneurysm and basically said be thankful you're alive and with such little side effects. At the end of the meeting he just said have a nice Christmas as if his part of the job was done and now we're handing you over to someone else. 

 

We are very very grateteful for the surgery of course but this last meeting and the word MS has left my wife basically in a deep depression.  

 

My wife found this great forum in the first place and I have signed her up but she hasn't been ready to tell her story just yet. We have however both found the comments on here extremely helpful. 

 

We were elated after the surgery considering the possible outcome but things have now gone in a different direction. 

 

Thank you for reading this

 

Ashley

 

 

[Louise]

Hi Ashley

 

warm welcome to the  site, so glad that you found us.

 

As well as leaving hospital with normally little info they the doctors that do wonderful things in repairing us, all have to hone their skills in communication I feel, I've had that too, don't worry, get on with life etc, but it's not as easy as that is it, and they chat amongst themselves forgetting your sitting there, taking 'everything thing in'

 

Can't give medical advice out here, but maybe make an apt with your GP see if they can help in any way maybe just your wife having a chat will help...

 

Hope you find the site useful..

 

take care

[janey]

Hi Ashley,

 

Welcome to BTG - it's a great site isn't it and it sounds as if you've been reading the posts on here which hopefully will have given you and Kim some information and reassurance on the recovery from an SAH. It sounds as if Kim is doing really well which is fantastic. I can understand how worried you must be about the possible reasons for the white spots on Kim's MRI.

 

Louise is right when she says that doctors need to be more considerate sometimes when discussing things with us. But on the other side of the coin, the doctors are the ones who've saved our lives so we can't be too hard on them! I think they develop a tough skin to be able to cope with all the stresses of their job and sometimes forget that we don't have that, especially after an SAH.

 

My view would be that you really need to push the medics to give you a clear explanation for the white spots, otherwise you'll drive yourselves mad with worry when probably there's nothing to worry about. Go back and see your GP and maybe by now she has had a letter from the consultant about the scan and will be able to give you more detail and reassurance. I think if it were me, I'd ask for another appointment with the consultant to discuss the scan, or maybe consider getting a second opinion if you're still not happy.

 

Best wishes to you both and do let us know how you get on.

 

Jane x

[Tina]

Hi Ashley & Kim

 

A very warm welcome to BTG !

 

I agree with Louise & Jane....I would definitely make an appointment with your GP and also one with your Consultant to get some answers and some peace of mind.

Don't wait 6 months and drive yourselves mad with worry.

 

Kim wishing you well with your recovery. Ashley take care too.

Keep in touch and let us know how you both get on.

Take care

Tina xx

[Winb143]

Hi Kim and Ashley,

 

My surgeon said No Stress. easier said than done !! but I do my best and tell the family when they are getting on my nerves. lol.

 

I had Ventriculitus, Sepsis and other things after my SAH and I have found this site a blessing to rant and moan about my worries.

 

I also had hydrocephalus which needed a shunt to move the water to my tum via my brain.  People always called me a pee head and I never believed them. ha xx Seriously it made me so much better, that's when I woke up from dreamlike state.

 

Wife will be okay keep her happy and singing helps, not mine though !!  No stress,  I really find stress is so bad for us.

 

Hence I mention it twice in 1 post  so sing be happy and make wife smile, good luck to you both and I'll sing a song when needed.

 

Regards

WinB143  xx  passes earplugs  xx

[subzero]

Hello Ashley and Kim,

 

So glad Kim has been using BTG to get support already.

 

Well done Ashley for getting in touch about your concerns. We look forward to hearing more about your (I mean both of you) SAH experience when the time is ready. I say `both` Ashley because, like you, I am experiencing life post my wife`s SAH May 2011,  and I am sure you will agree that it is a life that is different for all the family.

 

The comments you have received above are very well put. You don`t want to have unnecessary pressure by waiting for six months when another chat with your GP would help allay your concerns.

 

Looking forward to hearing more about your progress.

 

 

Subs

[SarahLou]

Hello Ashley and Kim,

A warm welcome to BTG.

As others have advised I think it would be a good idea to make an appointment with your GP when they have the results from the consultant.

Also do you have a Neuro Nurse Specialist? They are always a fantastic first point of contact but I know that sadly not many hospitals have them.

I'm very lucky to have one, who over 5 years on I know I can still contact at any time.

I hope that you get some of the answers that you're looking for.

Wishing you well in your recovery Kim.

Take care,

SL Xx

[Daffodil]

Hi Ashley. I imagine that both you and your wife are feeling a little shell shocked after that meeting. Neuro surgeons are a different breed entirely I am pretty sure, I think they probably have to be to do what they do but I have yet to meet one that considers any emotional impact of what they say. They deal in fact and the art of surgical possibilities but that's just my view and I digress from the point.

If there was any immediate cause for concern I really feel they would be doing something and testing further, I think the reality is they probably don't know what it is, and are speculating aloud, ( not helpful ) and I have personaly been on the receiving end of a 'special meeting of the neuro consultants' to decide if I have another anneurism or not. Thankfully I wasn't included in that chat but even being told afterwards was pretty hard going and For now for me they have agreed, not unanimously , that It may be so I get checked annually and that first wait for my first follow up MRI scan was an anxious one but as time has gone by I have made peace with it.

Maybe they will use this as a baseline scan and then determine if there is any change. I agree with the others though, call and ask if you can chat it through.

Sorry your wife is feeling it so much, I can recommend the Brain and Spine Foundation who have a helpline staffed by neuro nurses if she feels up to talking, they may be able to offer you some more medical advice and talk things through, you can call them also, my hubby did a few times when he was worried about me in the early days and wanted an indepependant view from the team treating mehttp://www.brainandspine.org.uk

Take care both of you, try to take each day as it comes, don't dwell if you can on the 'what ifs' and try and get some answers soon so you can feel a bit more confident about the future.

[AshB]

Hello everyone,

Thank you very much for your support and comments. Now that the dust has settled a little since last Tuesday I think it best to see Christmas through and hopefully we will get an appointment with the specialist relatively soon.

I guess the good thing to come out if this if you can put a positive spin on things is that Kim would be none the wiser and things could potentially get worse without her knowing anything. I'm hoping it's something that can be treated in the long term and she can move on to a more positive state of mind.

I/we will post updates as soon as possible.

Thank you all

Have a great Christmas

Ashley

[Colleen]

Hello Kim and Ashley, and welcome to BTG. This is such a great site for those of us who have lived through an SAH. I believe y'all will find it a fantastic source of information, encouragement, and comfort.

I always find it somewhat distressing when I read about experiences like the one you had with your wife's medical professionals. I admit that I have been blessed and spoiled with some of the best neurosurgical doctors and now my neurologist. They've always been great about explaining what happened, showed my husband and me the images, explained where the resulting damage is and functions that were affected. When we've asked questions we've gotten answers in terms we could understand.

Quite frankly, I haven't had that level of information from my GP; she just isn't on that same level. I hope you can get the answers you need from the neurologist and an explanation of what he is seeing that concerns him. The blood from the SAH itself can cause areas of cell death that look different because Once brain cells die, they can't regenerate. I know it's easy to say don't worry until your wife's recheck, but six months is a long time to have that unanswered question in the back of your brain.

I agree with your plan to chill and enjoy Christmas, but i do believe you need to put your concerns to rest after the holidays.

Best wishes, Colleen

[Chelle C]

Hi Ashley & Kim,

Welcome to BTG, you will find a wealth of information on this site, it`s a wonderful place to come to.

 

It`s lovely to have somewhere to turn and be able to talk with people who have been through the

same situation as you. I would agree with the others about having a chat with GP about results when

they have them, it will put your mind at rest,

 

I wish you both well on your recovery journey. 

 

Have a lovely Christmas,

 

Best wishes

Michelle x

[debbiephome]

Hi Ashley, I too had a aneurysm coiled in April, I just had another Cerebral Angiogram to follow up, which looked good, there was 5% that was not coiled in the back where my doctor could not see. but over all it went well and I have to have a follow up Angio in 1 year.

 

I had an MRA before my coiling and my doctor also read that I had some white spots but said that they were very mild mini strokes! they said nothing else about them nor did they refer me out to someone else which makes since, I do see a neurologist and would think if there was something to worry about he would have said something. maybe my aneurysm takes the top spot as needs go. ( next visit something to discuss)

 

I know we are not to give medical advise on here, so I was just telling my story about my "white spots" and maybe it will give you some information to take to your GP or Neuro in hope to help you.

 

I have had no vision problems except for the usual aging ones! ") I have gone throught some depression, if you read some others statements it seems to be common, I find this website to be so helpful, for me it helped me realize I was not alone and reading others situations I am blessed and confindent of my recovery. I have a great doctor and support from family and I have BTG the best find since my diagnosis! I am moving forward in life and learning to live with my aneuysms.....Hang in there Ashely. God Bless!