Jump to content

2nd opinions or further testing?


Recommended Posts

I'm curious if anyone has ever had second and third opinions on their bleed if it was non-aneurysm and no malformations.  If the doctors told you it was a vein that burst and bled for no rhyme or reason, has anyone actually gone elsewhere to see if there were underlying causes?  Anyone have any further testing, maybe genetically to see if there was something underlying?  Thanks

Link to post
Share on other sites

I have not and have no plans to...Where I was treated in the US is a top level  Neuro hospital and I was treated by a team of Drs...It left me feeling all stones were turned over and looked at..I also have no rhyme or reason for what happened to me...I think if you are left feeling that your did not get the feeling every avenue was explored you owe it to yourself to get another opinion...I can't imagine having the feeling that something was missed..

Link to post
Share on other sites

I did have some genetic tests for collagen related diseases such as Ehlers Danlos but they only did that because my Rheumatologist noticed hypermobility with my exam.  Meaning some my limbs and bendy parts are super flexible.

 

I believe I was also tested for vasculitis as it relates to my Rheumatoid Arthritis.  All were thankfully negative.  I live in CT in the USA and had a team of specialists on my case and even afterwards I followed up with an array of doctors, Rheumatologist, hematologist, cardiologist and Primary doctor.

 

 I still don't have the "why" answered.  So I wondering if others are just ok with the fact that the doctors have said that it's a rare fluky thing and it's a very low chance of it happening again or if anyone has actually exhausted all avenues on trying to get an answer on "why" the bleed happened.  Thank you for your responses.  It really helps me so much. 

Link to post
Share on other sites

The 'Why' question is the greatest unanswered mystery. Nobody knows why for sure.  Not enough research has been done, but common theories include alcohol/tobacco abuse, too much stress, poor diet, high blood pressure and hereditary factors. 

 

However, nobody has actually proved any of these, it seems, although there is plenty of good old common sense, and a few limited studies, to make an argument for any or all of them or any combination.   Could it be drug side effects?  Or how they interact with each other, if you take multiple prescriptions?  I haven't the faintest idea, I'm just blessed to still be here, and long may it continue!

 

It may just be a weakness that we are unlucky to have had, but then we have had the counter-balancing luck that allowed us to be treated and survive.

 

Amen to that, I say!  It may take a lot more money and research to come up with the answers to your question, but at least they can treat it if they get to you quickly enough!

 

My consultant compared it to getting a puncture on a bike.  One minute you're ok and the next you get a burst tyre, maybe by going over something sharp or because of a weakness in the inner tube, it's the luck of the draw!  If it's good enough for him, a brilliant man, it's good enough for me!  If anyone knows any better, I'll hold my hands up!

 

Good luck,

 

Macca

  • Like 3
Link to post
Share on other sites

Thank you Macca!  I don't drink, smoke, do drugs.... I don't have high blood pressure and have been off meds for my RA and anxiety for years prior to my incident.  I do have an autoimmune disease which makes me feel like if I have this I may have something else that someone's missing.  However, I do know that in the almost 2 years prior that I was under tremendous stress.

 

Knowing the "why" is scarier than the answer of "I just happened to be in the 1% that this happens to."  It's easier I guess to not know why then to find out that something is actually wrong with you and that your chances of having it again have increased.  It's just hard to let go and live.  A piece of me will always want to search for answers and I honestly hope that nothing is ever found to be wrong.  It's an easier answer to digest.

  • Thanks 1
Link to post
Share on other sites

 

To add another dimension..... this site has been in existence for over ten years, and there are a number of members who have survived their bleed and the scans post bleed have discovered other aneurysms of varying sizes.   These are now being monitored or treated as advised by the consultants.  Those members are moving on with their lives in the knowledge that these checks are in place and thankful that they have been discovered in time.

 

There are very few members who have suffered a second bleed.

 

 

Subs

 

 

  • Like 2
Link to post
Share on other sites

I know and of course I zero right in on the stories of the people who have had the 2nd incidences!  Scares me so much!  I definitely do feel a lot better after reading how everyone is moving on with their lives and how they can relate to still having issues long after their episode.  I was just wondering if anyone went above and beyond to find out the "why" if it was just a vein that randomly burst and bled like mine.  

Link to post
Share on other sites

The thing is I don’t think there is an answer to that question. Otherwise there would not be the term ‘of unknown etiology. ‘ 

 

My bleed was the same as yours and yes I would love to have answers as to what and why it happened but I’m just not going to get them. 

 

I just rest assured that I have had a large MRI scan, that not many people have, that has shown I don’t have any unruptured aneurysms. So at least I have the reassurance that for me it’s highly unlikely to recur. 

 

Just something we NASH’ers have to live with and hopefully learn to accept. 

 

Clare xx

  • Like 2
Link to post
Share on other sites

My husbands bleed happened when we were in Cyprus and the neurologist who treated him said that in the 20years he’d treated people for these if they survived the initial event he’d had nobody return with another bleed.  That was good enough for my hubby but we did have an appointment with a neurologist when we returned to the UK who did another MRI scan ( he had about 6 scans in Cyprus) and it was all clear.  So he told my husband just to go and enjoy his life which we are trying to do.  We are just thankful that my husband survived

  • Like 3
Link to post
Share on other sites

Hey Kris, 

 

I think with any sudden, especially unpleasant event that happens there is natural reaction of ‘why’’how could this happen?’ And I for one have become very curious to learn more about how the brain works for instance and how it heals but I do think with NA SAH and SAH is they Just don’t know what is cause or reason for the bleed. 

Maybe in our lifetime, as more people survive what they didn’t previously then we will learn more.

 

i found this Mesdcape article https://www.medscape.com/viewarticle/559142_1 quite useful as it offers one explaination and cites studies for the difference between non aneurysmal SAH and SAH and why treatment is sometimes different, differing lengths and why one prognosis can be more hopeful more often than not. 

 

I realise its worrying to think your brain bled and there is no indication why or where from but I guess sometimes it is possible that can spontaneously happen in other parts of the body right , maybe like a nose bleed, so why not the brain as well? Blood pressure raises maybe, finds a weak point...like any plumbing we will fail on a weak point.   The answer is just not known..yet ...but if you want to help medicine and research get there faster then offer to Be part of a study maybe? You might enjoy that purpose?

 

I don’t know why I had a burst aneurism, I just know I did  and As Macca says we then learn to live with that uncertainty for a bleed and realisation of the extent of things we can’t control. I for example have a shunt which to put it crudely is like a toilet overflow device for my brain and also have a coiled annurism with a neck and another teeny one lurking ., but here’s the thing, I can only influence the things within my control of that...and for those three things in my brain that is precisely nothing.

 

So I take care of myself as best I can,  eat and sleep well, live life and try to let go of my worries so I can better deal with the actualities as they arise. It serves me better. 

 

So im not belittling your interest in ‘why’ and natural anxiety that it could happen again but try instead to give yourself permission to have that worry and then try to move to a level of acceptance that it did bleed and you survived and it is highly unlikely it could again and instead notice all that is good and improving for you. 

 

Take care Kris. 

  • Like 3
Link to post
Share on other sites

Before I came on BTG I used to think oh well guess that's it !!

 

Far from it I saw people laughing and getting on with life, but before this site I was scared !!

 

Guess when we have something like a Bleed on brain it scares us witless.

 

Now I do not give it a 2nd thought thanks to this site.  

 

Now when on a downer think of times you had a laugh until you cried. I sing but it doesn't go down to well with hubby  ha ha  xxx  

 

Cheer up when possible  xxxx In your own time though 

  • Like 2
Link to post
Share on other sites

Well done Krislwal.  Keep looking for answers by all means, but live your life, don't get hung up on the past or what may happen if you are very, very unlucky.  Keep looking forwards when you can, and only look back to learn lessons from what you have been through.  You are a survivor, like the rest of us, so make the most of that second chance. 

 

That's the best way to pay back those that treated you and then supported you in your recovery.  Bless them all!

 

Good luck to you, lady!

 

Macca

  • Like 1
Link to post
Share on other sites

Hi Krislwal,

 

I have not posted on here in ages, but your thread caught my attention. Since returning to work as a teacher I find general existence takes up all my energy as have not found the time to post!

 

I had what was originally thought to be a NASAH in Jan 2015 when I was 27. This was a large bleed and was classified as a grade 4/5. I had this during heart surgery for a congenital heart defect and was left with some ongoing issues (hydrocephalus with the VP shunt, arachnoiditis on the spine and arachnoid cysts on my spine).

 

Due to the size of my bleed and the fact I have a congenital heart defect and got the issues with my spine I was sent for a range of tests to find the cause of my bleed. I have had the full range of MRIs and also two angiograms. All have found no AVM or aneurysm. I was sent to a genetic specialist and also a rheumatoid specialist to rule out all genetic conditions and any connective tissue disorders (also Ehlers-Danlos). I have seen a second neurologist to gain their opinion as well (sent by my normal neurologist) and they could not find a cause but were of the opinion that my bleed was not an SAH but a intraventricular bleed i.e. all in the ventricles. 

 

The upshot of all these appointments and tests was that I was born with a congenital heart defect which was not picked up into adulthood. This caused high blood pressure which has weakened my blood vessels. During my surgery one of these burst and as I was taking a load of blood thinners this did not clot and led to a huge bleed. It was just a chain of unfortunate events.

 

I did not seek or ask for any of these tests (to be honest I was too out of it in the year following the bleed anyway) but it was pursued by my medical team due to the size of my bleed and my other conditions. I do think my team looked at everything possible though and still did not find a clear, concrete cause. 

 

It is hard not getting a reason as to why this happened but over time it does get easier to live with. I find I still get asked about the bleed quite a lot but that is because I was left with physical disabilities as well (use a wheelchair and walking stick) so it comes up often as I am quite young and people are curious. I have managed to get back to a good existence - back in work (part time) and doing some of the things I did before. 

 

Everyone who has said the chance of a second bleed is very low is correct. It is just difficult when you have had it happen for the first time, seemingly without any cause. I guess I generally try to not dwell on it too much, take my blood pressure meds and try to live as healthily as possible. 

 

Hope this has helped somewhat. I know I have been tested a lot after my bleed compared to many so thought I'd add my comment. 

 

Gemma     

  • Like 5
Link to post
Share on other sites

 

Hello Gemma....many thanks for adding your valuable contribution to this thread.

 

Great to see you have progressed well in your own recovery.... hope you can share this some time in the future.

 

Take care...

 

 

Subs.

  • Like 1
Link to post
Share on other sites

The sharing and empathy on this site...well...it actually takes my breath away...so many kind souls who have been through so much and are willing to share how they manage to move on in life.. Sooo very happy I found this site....it makes a difference for me...thank you all...

  • Like 8
Link to post
Share on other sites
7 hours ago, Krislwal said:

Thank you very much for sharing your story.  I hope I get to a place of acceptance one day very soon.

Kris, you will but it’s  a gradual evolution and some days harder than others.

 

Gemma, so lovely of you to share that update, you had such a barrage of tests and I’m glad you are doing ok. I know what you mean about the ‘general existence takes all my energy’ but I have suddenly found after plateauing for a while and now nearing 6yrs on that I seem to have a tiny bit  more energy in my bank so again I think our cognitive stamina continues to improve, slowly gradually, unseen but it’s there in tiny increments, 

 

take care all. Kris, we walk this path together x

  • Like 2
Link to post
Share on other sites

The support from this site is so overwhelming and I'm so grateful that you guys have reached out and shared your personal stories so that another can find some sort of peace to what has happened.  

 

I'm truly grateful for each and everyone of you.  I've said it before and I'll say it again, the answers and support I get from this site far surpasses the comfort I feel from my actual doctors.  

 

The majority of the time they treat the issues and never have to experience the actual event thankfully for them.  They can only tell you what they've learned and know from patients they've treated but it's the mental and emotional fight after that they cannot empathize with to a certain degree.  

 

I'm thankful for my doctors.  I do feel they were very thorough with me and I've been to an array of follow ups so I'm pretty sure every path has been exhausted.  It's the unknown that's so scary and I guess that my own battle to fight.  

 

I'm glad I have you guys to help me though.  Thank you for sharing your stories.  I appreciate it so very much!  

 

I can't promise that I'm not going to keep posting a million more questions just to feel the care and support from you all!  Too bad we're all over the world because an in person support group,would be awesome!!!

 

At this point I'm afraid to travel even out of my hometown though!

  • Like 2
Link to post
Share on other sites

Go ahead, travel & do whatever you can! I just feel I’ve been given a second chance & I’m just grateful to wake up every morning ? I had an nasah nearly 2 years ago when I was 46, had ct & mri & a small bleed was found. Rushed up to Kings College Hospital in London & nothing showed up on the angiogram. I was just told I have no more chance than anyone else of it happening again. Yes, it’s scary. I think about when it happened a lot & what if? Every little twinge of pain I think it might happen again. I still get very tired, don’t sleep properly & have tinnitus. But I’m more or less back to my ‘normal ‘ self.  Every one on this site is so supportive & it’s good to know others are going through the same thing. Take care all of you ??

  • Like 6
Link to post
Share on other sites

Kris, sometimes you can’t find answer for the why. Wether you believe in past actions or the action of God, it happened but you survived and you are here now.

 

I have a patient who has multiple sclerosis and she says God gave it to her because She can handle it better.

I have lost patients before sometimes I don’t know the reason.

 

I lost a young, promising medical student a few years ago. She had surgery at a very prestigious place and got a blood clot in the lung. She was being transferred to a different floor and the order for blood thinner shot was missed. It was not fair.There are many things we can’t explain.

 

I would suggest not thinking too much. Live your life to the fullest, travel if doctors allow it, keep looking forward. 

I would suggest a book called loving kindness.

 

I m a worry wart and it always relaxes me and make me thankful. I m in Maryland and I do sit for meditation at a place called IMC USA whenever I can. 

 

There is also a UK branch. So far no one had been harmed by meditation. The key is knowing the breath, keeping it still at a focus point and not letting the mind wonders.

 

Whenever the mind is calm and clear, there is no hate, greed, anger, fear etc and when the mind is calm, the body is affected in a good way too. 

Good luck to you.

 

  • Like 2
Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...