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A Bumpy Road


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Hello to all of you.

 

Wanted to share the latest regarding my sah and what is coming in my future.  Allow me a quick history just as reminder before I get into new stuff:  

SAH 6/3/14.  Rupture.  1 coil.  Craniotomy for 2 clips.  Shunt.  Coma for month.  In hospital for 6-1/2 weeks.  I don't remember anything but last week and a half.  Meanwhile the neurologist is still messing with my anti-seizure medication and I still have headaches, ear noise, dizziness, you know...all of that.  It's been very rough for my family and myself these past 8 months but, as my first post sah angiogram came back okay we were feeling a little more optimistic and we were working on how to live with all the changes my sah brought about.  

So...I had my second post sah angiogram last week and saw my neurosurgeon yesterday for results.  I could tell something was wrong almost instantly...just felt it.  He began to show the latest pictures of my brain to us and, lo and behold, there is a new "bump" brewing in the same area as the other three.  It seems the arterial highway has a fast lane that heads right to that area and hits it pretty hard and it is a very weak area.  

 

The options are 1) ignore it and hope it doesn't rupture..just get constant angiograms to follow it.  

2)  Try a brand new technique that just received FDA (Federal Drug Administration) approval in the very recent past.  I would be the 8th person to ever had procedure at our pretty good neuro hospital.  It involves a "pipe" that is kind of a bendable tube.  Sheathed and run up from groin then placed right below aneurysm mess to divert main flow of blood around it.  My surgeon very excited about it and thinks it will do the trick...at least for this bit.  It's so new the company that created the pipe sends a proctor to each of these surgeries to control them and record results.  

 

So...all of this is being set up to determine if I'm a good candidate.  In the meantime I'm pretty depressed and scared about it.  I love my surgeon and he held me as I cried in his office.  I have to trust him.  

 

Just wanted to share latest and maybe pass on a little info about new "pipe" procedure.

Take care all.  Be well and, if you haven't tried it yet, sing along with Win.  It works!

Carolynusa

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Hi Carolyn,

 

Well you surprised me this morning!  I hope you feel ok.  This does sound new and exciting, and you are at the pioneering end of this treatment.

 

I know you feel scared, but think about Orville and Wilbur Wright when they wanted to fly, or Neil Armstrong, Collins and Aldrin when they went to the moon.  All pioneers and all successful!

 

Man explores new things everyday and although this sounds new, it seems seven have already gone before you, so it seems there is a success rate already!  If your surgeon is excited and he gets instruction from those who have already done this procedure, then there is every reason to be optimistic.

 

This is an opportunity denied to those even five years ago - yes an opportunity - it's a parachute out of a potentially more dangerous situation, but only you can decide whether you should jump out of the aeroplane.  

 

If you have confidence in your surgeon then there is every reason to listen to him, but if you have doubt, then walk away or at least defer your decision until you are sure what you want to do.

 

I wish you well whatever you decide.

 

Best wishes Macca - keep us posted!

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Hi Carolyn-

 

Just to let you know that we are thinking about you and praying for you as you face more uncertainty.

 

The first year after your SAH is a great emotional and physical struggle and strain on you and those close to you -- and now you have much more to think about.

 

It sounds as if you are in good hands with your neurosurgeon and you already have great trust in him.

 

Take the time you need and advice you can get from those around you as you come to terms with any decision you eventually make.

 

Good to have your extended BTG family around too.!

 

Sincere best wishes to you and your family

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Thought you'd been quiet Carolyn xx never worry on your own, some others on here had another one.

 

Don't know if it was the same as yours Pal xx 

You are worried I know this but ask the surgeon would he have it done if it was his Wife.

 

You eat spinach !! so half way there pop eye xx 

 

It is natural to worry as my tum went over when I read your post. But you have been there done it, so you be strong and I'll worry for you.

Now rant all you like and we'll forget the singing for a while. (Like heck will I) lol xx

 

You will be fine now sing a happy song to hubby and boys/men.    Passes Carolyn a box of chocs, take top layer then !!   Glares Win and mutters greedy Carolyn.  x

We are all here when you need to talk xx

Love

Win xx xx You'll be okay says Doc Win xx

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I totally understand you being upset and worried. When I needed to have my gall bladder removed I was told Johns Hopkins was doing an experimental procedure to remove it laperscoply (sorry for the bad spelling- it is a result of my SAH) and I met the requirements. I was nervous and went for it. Now it is common practice to do it laperscoply. 

I know this is in no way a comparison to your brain surgery.

 

Is there any way you could email or talk to some of the others that had this surgery? I know that is a long shot- but if you could would that help you?

 

Talking to your family will help you decide.

I will pray for you and that you come to the right decision for you.

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Thanks for all of your support.  I really appreciate it.  I have researched the device - a little tiny thing that looks like the spring inside of a pen.  Fun side note:  It was developed at Stanford University in Calif where Steve Jobs and all of his hooligan friends began the development of the computer.  So...they have a good track record - maybe! :)

 

I am all for it as opposed to having one of those annoying and uncomfortable angiograms every month or two.  That doesn't seem to make much sense.  I totally trust Dr. Wang.  I look upon him as a neuro genius who actually cares.  He got me this far against a lot of odds.  He held my hands and looked me in the eye to say...Carolyn, I am more than happy to help you if I, as a human, am able to...and I know, if situations were reversed, you would do the same for me.  Phew!

 

Anyway, I feel I will be fine with it although will always worry as that's my style.  I so appreciate all of you and the fact that the site is here to help all of us.  

 

Macca, I don't know what you did before sah but it's not too late to make writing a new career for you.  You are amazing as I have said before.  

 

Thanks all of you again

Carolynusa

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Hi Carolyn.

What a shock and an unpleasant one at that.

I love that you have retained some sense of humour and fun as well despite the new worry. Dr Wang sounds like a good guy, someone worth placing trust in. I imagine that this procedure is going to become more common place in treating SAH and aneurism in the future but you are at the start of that curve , going off piste if you like and carving out the route that one day will be familiar to others. A trailblazer that makes the path a little easier for others to follow. That is a courageous but generous thing to do.

Whatever you decide it will be right for you and we will help you whenever And however we can.

Keep smiling and singing.

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Hi Carolyn,

Wow, what to say? I will tell you I will pray for you daily and I know in the most difficult of times you will not be alone. I believe God has a plan and it is up to us to be patient.

Trust is so important and if you trust your doctor then your decision is made.

Please keep us updated as well all care so much.

Iola

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Thank you all!  I love every one of you (Win is my favorite - lol) but I love you all.  I am waiting for approval from Pipeline creators and will let you know when that comes through.  They might say I'm too old and my eyebrows are too white - so...no way.  lol

 

Much love

Carolyn Pipeline 

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Good luck with whatever you decide to do Carolyn you have a fantastic sense of humour and that is what is going to get you through this.

 

 Also your neuro sounds fab and I would trust him.

 

So not only are you a trailblazer you're a trailblazer with white eyebrows!! lol its a wonderful image!

 

Love and hugs,

 

momo 

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Hugs Carolyn ... I also participated in research with a coil that may have gel in it - HydroCoil/versus normal coiling .... I still don't know which one I have (which was part of what I signed up for)....normal or gel one...but agreed to take part in the trials and to be honest, if it has good results and makes a difference to the next person that follows me....then that's good for me. I've got another scan this year.

 

HydroCoil info - http://newsroom.heart.org/news/new-device-improves-healing-of-some-ruptured-aneurysms

 

I can see the relevance of using a pipe like device and it kind of makes perfect sense to me..... you can only do what's good for you lovely.

 

Weigh up what you personally need to do .... nobody else can ever make that decision for you and you need to feel happy with your own decision. xx

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Carolyn,

 

Take all the advice and time you need to make your decision.  We're with you whatever you decide, but once made embrace it positively. Once you are comfortable with your decision in your own skin, that will be the best time because your belief will be at its maximum and will give you the best chance of positive results.

 

Good luck, and keep us posted!

 

NB:  Carolyn, I used to design, develop and deliver training products!  Sounds boring but it never was!

 

Macca

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Carolyn 

 

You don't have to be a rock at every moment. This is a huge decision and you will make the right one. You'll question it, but ultimately it sounds like you are in great hands! A doctor who cares is so important!

 

The device sounds fascinating. Is there any way to hear about the prognosis of the other recipients? Imagine if this could just waylay all of your worries...wouldn't that be a wonderful thing? 

 

I will keep you in my prayers.

 

Macca--doesn't sound boring at all. I love teaching and also love creating curriculum. I never used "canned" because I always feel I know my students better than someone somewhere else. 

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  • 1 month later...

Hi Carolyn

 

Will be thinking of you as you enter a challenging week ahead. Thoughts and prayers are with you.

 

If your procedure is still scheduled for Tuesday take care and you have done so well so far.

 

I am sure Winnie will have another uplifting song for you when you come back to us with your progress

 

Best regards

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