Follow up

[Krislwal]

What does your follow ups look like?  Mine is said to be a CAT scan 1 year out.  Is this enough?  I had 3 angiograms, 1 the morning after, 1 a week later and the last about 1 1/2 out.  I've had to have 2 CAT scans in October due to a pain in my head that wouldn't go away, 1 with contrast the other without.  I see a lot of people getting MRI or MRA.  should I request this at my 1 year mark?  Seems more thorough.  Is a CAT scan enough?  I'm 8 months out from my NASAH.  Thanks!

[subzero]

Hello....you are right to consider what follow-up there should be post SAH.

 

However, due to the unique nature of each SAH, the follow-up is invariably down to what your consultant advises given the medical facts about what happened before, during and after your brain trauma.

 

If you feel unclear or uncertain don`t hesitate to make contact with your consultant to ease your mind. 

 

 

Subs

[ClareM]

Hi I too had a NASAH. I had 2 angiograms in hospitals, one on admission and one 2 weeks later before discharge.  My bleed was original detected by CT scan.

 

I was followed up by MRI scan approx 3 months after my discharge, this showed all was ok and I was discharged.  I get the impression that this is a fairly standard follow up procedure in the UK after a non-aneurysmal bleed. I am not sure how things work in the States you really need to speak to the hospital that treated you.

 

Good luck, keep us posted.

 

Clare xx

[Susan]

Hi 

 

I too had an NASAH (probably perimesencephalic - blood was only seen in this area, though my initial CT scan was a bit late, not until the 4th day after my bleed). I then had a CTA and angiogram in hospital and another angiogram 3 weeks later.

 

I think it is quite common, in the UK at least, not to have any follow up scans after the early scans have ruled out an aneurysm or other source.

 

The amount of scans during hospital stay does seem to vary, presumably due to the standard procedure of the hospital, individual consultant's preferences and clinical suspicion based on bleed size/ pattern etc. For example some with perimesencephalic bleeds may only get one angiogram - I got 2 due to a vasospasm on the first angiogram.

 

I have had MRAs since but that has been to scan a tiny incidental unruptured aneurysm detected during my first angiogram - if it were not for that I would have been discharged at my 2 month follow up appointment.

 

One thing I am curious about is that I have read that some NASAH patients have a full MRA/MRI of the spine after negative angiograms to rule out any spinal source for the bleed. I meant to ask about this at my appointments but always managed to forget that question (despite having a list!)

 

Best wishes

Susie xx

 

[Swishy]

I am in the USA...I am 8 months out from a SAH followed 4 days later with a severe vasospasm. 

 

I was sent home after 3 day hospital stay for the SAH and readmitted emergency for 8 days in ICU and 2 weeks in rehab when I had my vasospasm..

 

I am thinking I won't have any retesting at the 1 year mark.  I was having a lot of pains in my head, amitriptyline has helped greatly with. 

 

I do have some slight cognitive loss and can be wobbly especially when fatigued...I also experienced sensory loss on both sides which I am told is from my RCVS....

 

So while I am a bit frustrated in understanding it all especially why I have sensory loss on both sides of my body I am getting the feeling I am to the end of any further investigation by my health care providers...

 

.I am getting the the go live your life message from them...and I am to the best of my ability.. I am 65 years old...if I were younger I think I may be looking at this in a different light...don't get me wrong I am active, still work, traveling but for me the age does make a difference..

[Krislwal]

Thanks.... I had 2 CAT Sscans upon entering the hospital where they detected my bleed.  

They actually originally thought there was an aneurysm but discovered during my angiogram that there were no aneurysms at all.  

 

Apparently a vein had looped around making it look like an aneurysm.  They obviously confirmed that with the other 2 angiograms.  

 

I was just curious about the 1 year follow up exam what others had done for tests to make sure all was good.  

 

It seems to me in the hospital I went to that they do CT Scans first.  If there is any concern with that then they would go further and do an MRI.  

 

I know that my doctor said he would scan me at 1 year out so I'm curious what others have had done for testing over the years.   

[Krislwal]

Susan... they did do an MRI of my back while I was in the hospital.  They found 2 hemangiomas a disc issue but nothing about bleeding.  

So in general, in the U.K. Is the overall consensus that after your bleed if it was NASAH, there's not really any yearly follow up?  I think my doctor said I would get scans yearly, then every 2 years, then 5 years.

 

There was a pattern of follow ups which I am happy about.  The not knowing why or how and having an underlying autoimmune disorder has me freaked out all the time.  Plus at 8 months out, I still have headaches all the time and I can't stand noise or commotion.  I don't feel normal and I'm not sure if I ever will.  I'm just going to be grateful to be alive and well and try to move on.... but a huge part of me wants to keep digging for answers.

[Swishy]

Krislwal..I don't kow my reason either and I hear you when you say your  freaked out not knowing the why or how...I always think to myself "something caused this" ...My doctor told me "you were just unlucky"...I guess that doesn't do it for me...as I still wonder and yes worry, but less as time goes on..I want to understand what happened to me...I think that is normal...day by day Krislwal is how I proceed...but I still am educating myself about the whole thing..this site is helpful..

[Macca]

Hi Swishy and Krislwal,

 

I think it is important to write down your feelings and what has happened (at the time it occurs) to make you feel that way and discuss them with your doctors when you come into contact.

 

One thing that tends to often happen after SAH is that you tend to blame everything that happens afterwards on the SAH and it isn't always the case.

 

The two things need to be separated since if you blame things on the SAH all the time, you may get an unintended consequence - mis-diagnosis and treatment.  Correct diagnosis is the key to correct treatment, so discuss what is happening with your doctor and ask them for their professional opinion as to whether it is the SAH or not - is it a side effect of any medication you are on, for instance? Can you check that by reading the information leaflets that come with any drugs you are prescribed?

 

I found that I was looking for things that weren't there, and confusing myself in the process.  I also think that we look for explanations that satisfy the 'why me?' question even when we are not consciously doing so.

 

I now have the que sera, sera attitude to life.   There are some things they just can't explain, despite today's technology - just goes to show how complex the human body - and in particular, the brain, is!

 

Hope this helps you both, you find the answers you seek, and I wish you well.

[Swishy]

Thanks Macca,

 

I am getting there...I am better at month 8 than I was at month 5....I have written down and quizzed my doctors...and there is no explanation. and my current state is stable, not likely to happen again....Initially I just wanted to educate myself about what happened as I didn't know anything about SAH or vasospasm.... now I guess I am looking for some support from others who experienced what I did, reason I am on this site...but day to day I am just happy to have the life I have..

 

I wish you well also and again thank you for taking the time to write..

[frmertd]

I had the exact studies and follow up as the original poster. I think it is pretty standard what the doctors order in this situation. They know what they are doing. For neurointerventionalists they only take care of this one problem, 365 days a year. So they know what to order.

[Krislwal]

I've had an array of follow ups, cardiologist, hemotologist, my Rheumatologist, my Primary Care Doctor, lots of blood work and I'm happy to say that I'm only on Tylenol for headaches as needed and an anxiety med as needed.  

 

Nothing unusual or that I hope haven't taken for years now.  

 

They even went as far as genetic testing for me for hypermobility and Ehlers Danlos syndrome in which I tested negative for.  When is enough, enough though and you just let it go and live life.  

 

It's so hard because I worry so much that there's something more that's underlying that could make it happen again but they've literally tested me for everything at this point.  

 

I keep searching though.  It's hard to let go especially since I have an autoimmune disease to deal with daily.  They claim my RA had nothing to do with it but I still wonder.

 

 My acupuncturist thinks it was a result of one of the drugs I was on for RA for a long period of time.  I even went to a psychic and she said that stress manifested into something physical unfortunately and that's why it happened.  

 

 My neurologist said it was a freak thing and very rare to happened again.  Some many theories.  Thanks for all your support and advice.