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Gilly new member - Infundibulum


Gilly
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Hi, my name is GILLY and I had a sah on 26-10-14. I spent 2 weeks in Kings had 2 angios ct and mri. There was a suspicious finding near my basiliar tip but after taking advice they decided it was an infundibulum and I was discharged. Have felt very lonely and worried since then.

 

This site has been my only understanding friend, if you know what I mean. I have had a lumbar puncture this week as had symptoms of another bleed but it was negative. Does anybody think that this infundibulum should be checked. Do you know if it can turn into or hide an aneurysm? I would be grateful of any knowledge.

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Hi Gilly :)

 

A very warm welcome to BTG, glad you found us.

You will find lots of helpful information and friendly support here.

 

If you are worried go back to see your Consultant and get them to explain things to you so you can have peace of mind.

Let us know how you get on.

 

Feel free to join in the daily banter in the Green Room :)

Look forward to hearing more from you.

Take care

Tina xx

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Hi Gilly,

 

Welcome to BTG.

 

I've had a lumbar puncture. I'm five years out from my SAH.  My pituitary gland was damaged when they coiled me.  I would talk this over with your doctor.  We can't give medical advice because we are not doctors.

 

As I understand it, an infundibulum is a conical shaped tube that comes down from the  base or lobe of the pituitary gland. As it is tiny,it may be that this has the appearance of an aneurysm but isn't one, which sounds like what they have said to you ie normal.

 

Like I said, I'm no doctor and I can't say I'm right.  I only know the term because it was mentioned to me when I was undergoing treatment.

 

So, you're asking the wrong people here. I think it is something that is natural and is in everyone but just as we all look different on the outside, so our bits look different on the inside.

 

Don't sit there fretting. Go back to your doctor and talk it over with him/her.  Don't let your imagination run away with you because that is what will cause panic to set in.

 

Like Tina says above, go and get it checked.  The sooner you meet it head on the sooner you will set your mind at rest.

 

Best wishes

 

Macca

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Hi Gilly

 

Warm welcome to BTG glad you have posted as you obviously need answers. I can only ditto what Macca and Tina have said, the only people who can answer your questions are the medics. Is there a Nurse Specialist at Kings you could speak to?I know it has been said that Neuro surgeons are quite unapproachable. At Wessex where I was treated there is a wonderful Nurse Specialist who is happy to answer any questions even though I have now been discharged.

 

How have things been for you since your SAH? Are you back at work or is life very different now? I have decided that my life is a bit different now, things that used to worry me don't now. I do worry about having another SAH even though the chances of it happening are very slim but I thank my lucky stars that I am still here.

 

Let us know how you get on asking those questions!

 

Take care

 

Clare xx

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Thank you for taking time to respond. It is very much appreciated. I do not as far as I remember have any contact person at Kings but was not really with it when I left. My doctor doesn't really seem to know a lot about sah.

 

Every time I see him he asks me how my anuerysm is. I tell him every time that unless he knows something I don't I didn't have one. I asked him if he has another patient that has had a sah so I could talk to them. He told me only one other and they sadly died. I wish he had lied and told me they had moved away!

 

I was told after my lumbar puncture that I have to go on a waiting list to see a neurologist. So hope that doesn't take too long.

 

I work as a self employed cleaner. I cannot work anywhere near as many hours as I did as I get exhausted. Cobwebs are now my pet hate as looking up makes me very dizzy.

 

I am starting to ramble now but would just like to add that all you lovely people have been the only source of information and comfort. You are all very wonderful positive people even though I know you have all had and still have so much to contend with. Thank you x

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I've got an infundibulum on the opposite side to the original aneursym that bled  ....  I'm alive and kicking 10 years on ... I believe that its funnel shaped...  I'm still being monitored, brain wise and haven't had any significant changes. 

 

Ask your Consultant or ask your GP to contact them. xx

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Hi Gilly,

So am I getting it right that you had a SAH and all the scans, but they didn't find an aneurysm? There definitely are people who come to the site who have had NASAH, so hopefully they can lend you some insight and support. I definitely agree you need to see a neurologist and hope you get in soon. Also hope it is one with decent " bed side manner". We really don't want to hear about the ones who didn't make it!

 

I'm in the U.S. and the medical system is different, but I also find my GP doesn't seem to know much about the SAH. Basically she just refers me to the specialists ( referrals required by insurance) and I generally do the background info to figure out who I want the referral to. I've been fortunate to have excellent neurological care, and they have helped me immensely. I hope you too can get the help you need.

 

I also find folks on this site so willing to give of themselves. The beauty is that whenever someone is having a down day, there always is someone who is more "up" and ready with an encouraging word. So keep coming back, and maybe at least you'll find some comfort here.

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Gilly feel free to ramble away here anytime  ;)

Glad you are on a waiting list to see a Neurologist and  also hope you don't have to wait too long.

 

My GP also knew nothing of SAH as I was the first that he had come across that had survived. He said he is learning from me. I have to say he has been very supportive and always listens to me. He originally misdiagnosed me as having a sick bug.

I have had lumbar punctures, not pleasant are they, bless you.

 

Well done for getting back to work. I think for most of us now, we just have to pace ourselves and listen to our bodies.

So be kind to yourself as Karen ( the amazing lady that created BTG ) once said to me, and it is so true. If you push too hard, your body will let you know !

 

Glad you are finding some comfort here :) and as Colleen has said, keep coming back.

Take care xx

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My discharge note refers to it as NASAH. I remember the neurosurgeon telling me that because of the amount of blood that they were surprised to not find an aneurysm. I was cooking dinner on the dreaded day and first my hearing went, my friend was talking to me but I could only see her mouth moving. Then an unbelievable pain in the right side back of head. I thought I had been shot, don't know why.

 

My problem at the moment is my head feels like someone is squeezing it in the exact same spot and my hand goes numb. Then I have a panic attack.

 

The morphine in the hospital didn't agree with me. I thought they were trying to kill me. It's hard to understand why people take drugs for pleasure.
Do any of you have panic attacks and how do you deal with them.

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Hi Gilly

 

warm welcome, glad you found the site...

 

Another one here who's GP knew nothing (unless your GP has done a stint in neuro I think most are the same)

 

Yes your body will let you know when its tired and you really have to heed that and rest up.

 

if you are worried go to the GP and ask to be reffered back to the neuro team if nothing else it will put your mind at rest..

 

Deep breaths

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Hi Gilly, Welcome to BTG.

 

You will find this site a great help during your recovery, as the others have said

speak to your GP they should be able to put your mind at rest.

 

Like Louise said you must listen to your body as it will let you know when you have

done to much.

 

Hope you soon start feeling better, this site will help to lift your spirits we are all

here for the same reason, being able to talk to people who understand what you  

are going through is a huge help.

 

I wish you good luck on your recovery journey

 

Love

Michelle x

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Gilly. Hey. Sorry you had so little help, that's awful but yes go back and ask them to help you understand what has happened. Search the site here a bit, lots of links to some useful videos or information also Headway and the Brain and Spine foundation have some good booklets you can download.

Panic attacks , I have had the odd one since and did find myself anxious after all the events linked with my SAH and subsequent surgeries . My best advice to you when it happens is sit down. Feet firmly on floor, try to breathe slower and louder, into a paper bag if that helps, count them in and out and just observe and watch the sensations. If they pass away or move to somewhere else In my body then i figure it's nothing to worry about.

 

If however a pain gets worse or your symptoms are getting worse then it's time to do something and seek help. When it's passed drink a large glass of water ( nothing else ;) ) ,maybe suck a mint and then get on slowly.

Be kind to yourself my lovely. Early days for you and cleaning is a hard effort so take it easy as much as is possible for you.

Ps. Morphine. Hmm. Yep didn't find much fun in the hallucination dreams but at the time I did thank the relief it brough me to be honest.

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Hi Gilly,

 

Welcome to BTG. I had an NASAH in January this year either during or just after heart surgery. I don't remember much for about 3 weeks afterwards due to the bleed and hydrocephalus I got as a result of it.

 

Like you my neurosurgeon was surprised that it was not caused by an aneurysm as I had such a big bleed. They have found an aneurysm in my brain, but it was not that which ruptured. I had a follow up MRI at six months and from that they confirmed that it definitely was not caused by an aneurysm. As it was such a big bleed my neuro-surgeon wants some further tests doing so I have been referred for this to see if they can get to the bottom of it.

 

As others on here have said it might be worth trying to get your GP to speed up the waiting time for you to see a neuro-surgeon and hopefully they can try and get to the bottom of it.

 

Good luck and take care.

Gemma x

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Welcome Gilly sounds like you have had a tough time. I think many GP's lack knowledge around Bleeds in brain, whether as result of aneurysm or unknown source. My hospital had a support group running each month not sure if your hospital does, that is where I was able to get some questions answered.

 

It is very early days and having this is life changing as it does take away that belief we are invincible, I do hope that the neurologist can help you, take a written list of questions and don't be afraid to give them to the neurologist to answer, this prevents you from forgetting.

 

Please give yourself time and I doubt they would not be having you in more quickly if they felt you were at massive risks, share your fears with GP to see if they can find out any further info to help you.
Take care x

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The best thing about panic attacks, this sounds flippant but I don't mean it to Ready Gilly?  is  never let them beat you.

 

I have had a few since my SAH and I find a place inside of me to push them down, it is hard but my Daughter also gets them.

 

You take water with you and peppermints to stop dry mouth and say to yourself I am in control as they can take a grip on you if you let them, they cannot harm you, as you are in control.  Remember to stay calm think happy thoughts even sing.

 

Or tell whoever you are with you feel nervy and panicky and they will see you right, horrid things but try not let them control you.

 

Say to yourself I am in command here and you are not beating me,  when I get one I try singing got some weird looks but who cares .

 

Good luck and try and be happy xx

 

Love

Winb143  xxxx

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Thank you all for taking the time to help. I am having trouble with sleeping at the moment. I cannot get my head comfortable as it just feels like a giant bruise. I keep being woken up by extreme pressure feeling and dizzyness. I end up going down to the sofa and putting the telly on low to try and distract me and stop it turning into panic. Is this normal?

 

I feel in limbo because my doctor is kind of the opinion that the lumbar puncture has proved I am not bleeding again so I just need to be patient until I get my appointment with the neurologist. Does this happen to anyone else.

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I used to have difficulty getting comfortable in bed, I bought a memory foam pillow and it worked a treat. Gave me that extra bit of support.

 

With regard to the pressure feeling you really need to speak to someone and get reassurance whether it is normal or not. Everyone is different after a SAH. I still get weird feelings in my head and neck now. It's early days for you, not even a month yet so keep strong, plenty of rest and LOTs of water, it does help.

 

Clare xx

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Gilly, try sleeping in a more upright position, rather than laying too flat. I still use a V pillow to sleep with, as I sometimes still experience head pressure and dizziness and laying flat seems to exacerbate it .... but that's just my experience.

 

If you're worried about the pressure feeling and dizziness, go and get yourself checked out, as it will give you peace of mind.

xx

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The v shaped pillow has helped me get more comfortable. Thank you. I have had a letter today from the neurology department that states that because my ct scan and lumbar puncture were negative that I do not need to see them. They have diagnosed me with migraine without even seeing me! I do not know what to do next. Any advice please. I feel like they see me as a time waster. X

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