Misread my scans!

[Guest Scarlett]

Hi Scarlett, I've been following your thread. Welcome to BTG. Sorry you are going through this horrible time.

I hope you don't mind me asking - why did you refuse the lumbar puncture? I've never had one but I understand that it can show whether or not there has been a bleed.

Sandi K.

It was in my local Hospital which is the MRSA capitol! I was also worried about the procedure because many years back,a neurologist wanted me to have a lumbar puncture. The nurse who was present during my examination made a face that said it wasn't a good thing to have done x

[Guest Scarlett]

Hi Scarlett, you are not going to like this but in my honest opinion you are being your own worst enemy. Yes I know that your scans were misread and you had another in London which showed up the aneurysms but you now have several agencies working against each other which could be delaying treatment.

Plus, why turn down the lumbar puncture, the csf that is drawn off can show traces of blood if you have had a bleed that was undetectable on the scan. It does happen.

And, the stress you are putting yourself under will be making you feel extremely ill and raising your blood pressure which is no good whatsoever for you. Please try and calm down and look at things logically. Many people have these aneurysms and they know nothing about them, they live life without them ever bursting.

There are many things that can be in our body that we don't know about, the saying "ignorance is bliss" is very true.

Yes I can understand why you are extremely worried, a natural reaction, but you need to try and tamp it down a little, do other things to try and take your mind off it somewhat. It has taken over your whole life, don't let it.

Please do not take this as a slight against you, it isn't, it is just how I see it.

I myself live under the threat of sudden death, do I let it worry me, no. I have accepted that it could happen at any time so I live life to the full and enjoy it. I often travel abroad on my own and think "what will be will be".

Yes Penny it has taken over my life. I go to bed worrying I won't wake up and it's on my mind constantly throughout the day. I know what you say is true but I just can't relax. I am seeing the Doctor tomorrow. I worry about my son and who will take care of him because my husband wouldn't give up his lifestyle to look after him x

[Guest Scarlett]

Hi Scarlett

I've been reading through this thread and can understand why your anxiety levels are quite high. My bleed was diagnosed by lumbar puncture and like Lin, I didn't find it that bad at all. I'd heard all sorts of horror stories over the years about this procedure but it really wasn't all that bad. They do give you a local anaesthetic so you don't feel any pain, the thought of it was far worse than the actual procedure. It's also over and done with much quicker than an angiogram.

Does your GP realise how anxious and stressed you are? Can't he suggest any ways for you to reduce this? I only ask beause I work in Psyhcological Services and this is a website we pass on to clients. http://www.ntw.nhs.uk/pic/selfhelp

There is a booklet on stress towards the bottom of the list. You can either download and print off the booklet or dowload it onto an MP3 player. There are relaxation excersises in it. There is also a booklet on Anxiety. I hope you don't mind me butting in but I just thought maybe this might help whilst you wait for your angiogram.

Take care.

Thank you so much for the link. I have been in an almost constant state of worry and panic this past month. I am glad to hear that the lumbar punctures are not too bad. I didn't know they could detect a bleed that way and thought they just wanted to rule out other things that may have been causing my headache.

I also worried that the procedure could have caused pressure in my brain. He was also a junior Doctor and it was at my local Hospital, which isn't a good place to be! x

[Guest Scarlett]

Hi Scarlett. Penny offers some good home truths there. You need to try and turn this situation around rather than have it rule you. You are lucky that they know about the aneurism and they will do something about it , i know it doesnt feel lucky but the facts speak for themselves; it is actually very rarely that they do they burst. There's others in the same boat as you on here who have had to wait for surgery and it's very hard on you.

For those of us where those odds have happened and they burst without warning I think we would all trade places to be forewarned and able to approach surgery in a calm and considered way. You have been given a gift in a way.

An angiogram in an emergency situation is NOT ideal, a radiographer will always try and avoid that plus there is no way that they would proceed to an angio from A&E without the confirmed presence of blood in the CSF. The only way they confirm the resence of blood is with a lumber puncture. If you suspect that the anni is bleeding then you need a lumber puncture. If its your only way of being certain then you say yes.

I have had three LP now and like Lin Lin says they are totally manageable, an epidural was harder.

I am not being callous here, I totally understand your worry , i have a anni that isnt coiled and that they monitor with angios and MRIs so i get it but you have to keep it together and focus on the postive outcome here.

I understand what you are saying but it is very hard especially with my son ill. I will feel better when I get a date for the angiogram and the surgery. With it being an 8m aneurism, my worry is I won't have the surgery in time. x

[Guest Scarlett]

Hi Scarlett,

Been reading this thread as well. I hope you get your angio soon. I have never had a lumbar but have heard good and bad things. They wanted to give me one on December but I refused because I was having brain zaps that I knew were due to anti-d withdrawal. They later confirnmed that. CT showed negative.

I do know that a lumbar puncture can detect a bleed that a CT scan may miss. If the lumbar is clear you can be 99% sure that all is ok. You may want to do that for your own peace of mind. But certainly go on with the angio as well.

But with what Penny said, please try and relax because getting all worked up can increase BP and is not good regardless of circumstance. I know it is hard but try and relax, be positive and have your doctor get you some pain or anxiety meds that reduce your current stress level. I hope it works out for the best.

David

It's been just over a month since I was diagnosed and it feels like a year. I just want everything to be speeded up so I have the Hospital dates. I am seeing my Doctor tomorrow. I bought these herbal tablets called Kalms at the chemist, hoping they would help me get to sleep but they did nothing.

The Doctor told me to avoid tea, coffee and chocolate because it can push up blood pressure temporarily. Didn't say anything about not drinking wine so maybe a few glasses before I go to sleep? x

[Lin-lin]

I was going to suggest counselling to you the last time we 'chatted' but when I went back online, I saw that others had done so.

Perhaps asking your doctor for some pre surgery counselling might be helpful to assist you developing a healthier mindset.

I had junior doctors perform some of my lumbar punctures. I don't think the medical profession consider them to be difficult procedures and so it is something that younger doctors do. I would go as far to say, that some of the more junior doctors performed my better, if not the best, lumbar punctures. I don't know why this would be, but they did seem very anxious about the thought that they may hurt me and were very careful. Maybe twenty years in the job diminishes this caution..I don't know!

I think that some sort of counselling would benefit you because your anxiety levels are high. Maybe your lack of support at home is creating an environment where you can't talk things through... Fearing for your disabled son is a genuine worry and you need to tell your doctor so that practical solutions can be offered.

Also statements such as your local hospital 'not being a good place to be' will raise your anxiety levels. You will convince yourself that you are having substandard care. Truly, if I were in a hospital bed next to you in the Heath, I would think that I was in the best place. These different mindsets would undoubtedly frame our different attitudes to our experience of the hospital.

I am pleased that you are seeing your doctor tomorrow and I wish you well.

[SarahLou]

Hi Scarlett,

I wish that we could take away some of your worries and stress.

When you see your doctor tomorrow please be open and honest with him about how you're feeling.

I needed a lumber puncture about a week or so after surgery. I was out of HDU and back on a neuro ward. To be honest they said it needed doing so I let them do their job. I didn't have any pain or discomfort just couldn't stand laying flat and still for so long afterwards! I remember pleading... 'Please nurse, can I move now?'... 'No, Sarah dear, not yet' then I'd ask again ten minutes later, must have driven the nurses mad!

My anni burst and I needed emergency clipping, I've no idea how long I was walking around with that in my head. I saw neuro consultant last December, when I commented to him that I'd had a ct scan in April 2010, my SAH was August 2010, so I'd always thought it happened between those times, he told me that was unlikely and that the ct probably didn't pick up the anni. I was surprised to hear that, threw my theory right out the window! He also told me that 5 people out of 100 walk around without knowing they have it, and that 4 out of those 5 people will die of completely un related reasons, nothing to do with an SAH.

I know it's really tough, I was also told then they would scan me in a few years to check no further aneurysms are present, something that hasn't been mentioned in previous appointments.

I can honesty say that I don't worry about it, what will be will be.

I hope that you can find a little bit of peace and understanding soon.

Take care,

SarahLou Xx

[Guest Scarlett]

Sorry you didn't get the option you were hoping for, but everything will work out for you and pretty soon you will be helping other people get through what you are going through. They sure do things a little differently over there, as my neurosurgeon did the catheter placement on my angiogram. Keep us posted

Harry

I do hope so.The neurosurgeon I saw a few weeks back said I needed to be operated on within two months. It's been almost five weeks and I haven't even had my angiogram yet!

Here, the neurosurgeon only has to be present while the radiologist performs the angiogram and coiling. You wouldn't think it would differ so much across the pond for the same procedure would you?

I also read online there is another procedure where they glue the aneurysm but that hasn't been mentioned to me just the coiling and clipping x

[Guest Scarlett]

Hello Scarlett,

I've been following your story, most of the posts I've had to read a few times because I can't quite believe what I've been reading.

Wow, you've had such a battle on your hands and its honestly shocked me to the core and bought me to tears.

I hope now that this is a turning point for you and that things will now start to move forward for you.

As for your husbands reactions... Errr... Now, I shall not comment because my Mama always taught me if I can't say anything nice then to not say anything at all!!

I really do wish that you had a better support network around you, however, all our strength shall become your strength.

I wish you well and send you big hugs.

Take care and keep smiling,

SarahLou Xx

Thanks. I really wish I had some support off my husband but I don't get any regarding my sons care. My friends text and phone but my husband doesn't even ask how I am! Things haven't been right for some time between us and now I have an aneurism it's made me realise that I am totally on my own.

I am hoping I will come through my surgery ok to be able to continue caring for my son x

[Guest Scarlett]

Hi Scarlett hope you are ok my surgeon is mr Goetz but i saw a lot of the registrar cant remember his name but he was excellant . keep us informed take care x

Thanks Cath, I don't know if I would be able to ask to be referred to your surgeon or Lin-lins but it would make me feel a lot better if it were possible. I haven't thought too much about the surgery. I'm just worried long it will be before I will be able to return to caring for my son 24/7.

Is there a set time for a full recovery or will it vary? x

[Super Mario]

Scarlett, the recovery time is different for everyone. Who will look after your son whilst you are having the procedure done and the ensuing time in hospital? That will vary as well.

Have you thought of contacting Social Services and arranging for him to have respite care whilst you are in recovery?

Surely, as he is disabled he already has a care manager.

On another note, everything we do in daily life carries a risk. Your refusal of being treated where the docs want to treat you is totally irrational.

I know I sound hard but I am a great believer in calling a spade a spade.

I hope that your GP will be able to alleviate your concerns and counselling is a very good suggestion.

[MaryB]

Scarlett, I am just going to add that you have not had a BLEED right? And you can get this taken care of prior so your recovery is and may never be as hard as some of us that had a bleed and than had to recover. I know with my brain tumor I was really stuck on getting it removed and having to do THIS all over again but it won't be THIS it will be easier than this.

Just my thoughts. Also what will happen to your son if you wait too long and end up an in bad shape from all this worrying and walk into traffic? This is something you can control. You must realize that. You must realize we all can be hit by a car tomorrow and live for today. We all have to have a long term plan for our children and others in our lives we are reasonable for. It part of life, we can control our actions but not certain things. We need to knwo what we can do and cannot do. You can get this taken care of.

Good lUck Maryb

[Bluescat1]

I do hope so.The neurosurgeon I saw a few weeks back said I needed to be operated on within two months. It's been almost five weeks and I haven't even had my angiogram yet!

Here, the neurosurgeon only has to be present while the radiologist performs the angiogram and coiling. You wouldn't think it would differ so much across the pond for the same procedure would you?

I also read online there is another procedure where they glue the aneurysm but that hasn't been mentioned to me just the coiling and clipping x

My neurosurgeon and his team were the ones that developed the glue procedure as well as new coils being used in Europe. I didn't realize how lucky I was to live 10 miles from a world class facility. http://www.capitalhealth.org/medical-services/brain-spine/centers-programs/stroke-cerebrovascular-center

[goldfish.girl]

Hi Scarlett,

Just thought I'd pop on and say that as my own son also has disabilities, he has a Social Worker who was already in touch with us before my SAH. You have the time just now to speak to social services and explain your situation with your son & your need for recovery time after your op. It's not a nice situation to be in for you, but perhaps 'lucky' in that you know surgery is coming up so you can start to organise things now. It would be so much harder to do this if you had had an SAH & were then trying to organise help for him. My son's social worker was fantastic after she was informed I'd had the SAH. Transport was arranged to take my son to school & in the holidays a care worker came and took him out every day to places of interest to a child. They also helped to take him to appointments & there was other help offered which I didn't need to take up as my ex-husband was helping us out at home (he even moved back in with us for a short time - I must've been ill to have put up with that!!! But the help was needed & appreciated at the time.)

Clearly your own sons needs may be more significant and I would urge you to make arrangements now for help to be put in place. Hopefully, starting this as a short term project might also take your mind off worrying for at least some of the time.

As someone has already said, it's the recovery from the actual bleed that is so hard. Any brain surgery is going to need recovery time, but without a bleed having caused damage elsewhere in your brain, it will be easier than recovering from an SAH. I hope that helps a little.

Michelle

Edited March 15, 2013 by goldfish.girl

[Guest Scarlett]

Scarlett, the recovery time is different for everyone. Who will look after your son whilst you are having the procedure done and the ensuing time in hospital? That will vary as well.

Have you thought of contacting Social Services and arranging for him to have respite care whilst you are in recovery?

Surely, as he is disabled he already has a care manager.

On another note, everything we do in daily life carries a risk. Your refusal of being treated where the docs want to treat you is totally irrational.

I know I sound hard but I am a great believer in calling a spade a spade.

I hope that your GP will be able to alleviate your concerns and counselling is a very good suggestion.

I have a list of registered carers that I had from the social services when my son first became ill, just incase I would require their help at some point due to illness. All that is all in place. I wouldn't refuse treatment it was just the lumbar puncture.

The Hospital are phoning me with a date tomorrow for my angiogram. x

[Guest Scarlett]

Scarlett, I am just going to add that you have not had a BLEED right? And you can get this taken care of prior so your recovery is and may never be as hard as some of us that had a bleed and than had to recover. I know with my brain tumor I was really stuck on getting it removed and having to do THIS all over again but it won't be THIS it will be easier than this.

Just my thoughts. Also what will happen to your son if you wait too long and end up an in bad shape from all this worrying and walk into traffic? This is something you can control. You must realize that. You must realize we all can be hit by a car tomorrow and live for today. We all have to have a long term plan for our children and others in our lives we are reasonable for. It part of life, we can control our actions but not certain things. We need to knwo what we can do and cannot do. You can get this taken care of.

Good lUck Maryb

I would never walk in to traffic Mary! I will have a date tomorrow for my angiogram and feel so much better knowing things are moving. Hopefully it will be next week. They said I will not have any sedation for this because they would not be able to communicate with me during the procedure. x

[Guest Scarlett]

I was going to suggest counselling to you the last time we 'chatted' but when I went back online, I saw that others had done so.

Perhaps asking your doctor for some pre surgery counselling might be helpful to assist you developing a healthier mindset.

I had junior doctors perform some of my lumbar punctures. I don't think the medical profession consider them to be difficult procedures and so it is something that younger doctors do. I would go as far to say, that some of the more junior doctors performed my better, if not the best, lumbar punctures. I don't know why this would be, but they did seem very anxious about the thought that they may hurt me and were very careful. Maybe twenty years in the job diminishes this caution..I don't know!

I think that some sort of counselling would benefit you because your anxiety levels are high. Maybe your lack of support at home is creating an environment where you can't talk things through... Fearing for your disabled son is a genuine worry and you need to tell your doctor so that practical solutions can be offered.

Also statements such as your local hospital 'not being a good place to be' will raise your anxiety levels. You will convince yourself that you are having substandard care. Truly, if I were in a hospital bed next to you in the Heath, I would think that I was in the best place. These different mindsets would undoubtedly frame our different attitudes to our experience of the hospital.

I am pleased that you are seeing your doctor tomorrow and I wish you well.

I feel much better now because I will have a date tomorrow for my angiogram and will know for sure what surgery lies ahead. I did discuss my worries with my Doctor and he said it was understandable but that I should try to relax a little. I have registered carers in place for my son but if I have the coiling procedure the surgeon said I will only be feeling unwell for around three days. She said I could then continue as normal, so fingers crossed it will be this procedure.

When I referred to my local Hospital in my last post, I did not mean Cardiff. I have been referred there but when I rang again today, they said they still haven't received any referral. x

[Lin-lin]

I am so pleased to hear from you as you have been on my mind.

I am glad that you are feeling better. Do let us know when your aniogram is so that we can offer you support.

Catch up soon,

L xx

[Guest Scarlett]

My neurosurgeon and his team were the ones that developed the glue procedure as well as new coils being used in Europe. I didn't realize how lucky I was to live 10 miles from a world class facility. http://www.capitalhealth.org/medical-services/brain-spine/centers-programs/stroke-cerebrovascular-center

Thats amazing Harry. I'm hoping to have the coiling done. How did you feel after the surgery? They told me today that I would be rough for the first three days after the surgery but then I'd be ok. if I had the clipping it would take a lot longer they said.

I'm very tired been up since 5am. I went to a to to consultation this morning x

[Super Mario]

So pleased that things are progressing for you and you will have a date in the very near future.

One thing that has struck me is the fact that you seem less stressed about it and the panic that you were in seems to have subsided a little. May I wish you all the best for your treatment.

Please keep us updated on your progress.

[Louise]

And all the best from me too. Take care

[Bluescat1]

Thats amazing Harry. I'm hoping to have the coiling done. How did you feel after the surgery? They told me today that I would be rough for the first three days after the surgery but then I'd be ok. if I had the clipping it would take a lot longer they said.

I'm very tired been up since 5am. I went to a to to consultation this morning x

I am glad things are coming together for you, I had clipping and was home on day 2. I had a headache but that was all. I can't believe they don't sedate you for the angiogram, they put me out. My neurosurgeon was the one that performed it on me. I guess things are a little different over here.I was not a candidate for coiling because my aneurysm was a trifurcation and it was at the junction of several arteries, that is why I required 3 clips. Enough about me I want to wish you good luck and I will say a prayer for you .

Harry

Edited March 22, 2013 by Bluescat1

[Guest Scarlett]

I am so pleased to hear from you as you have been on my mind.

I am glad that you are feeling better. Do let us know when your aniogram is so that we can offer you support.

Catch up soon,

L xx

I'm having my angiogram on Tuesday. I have been told to prepare for a general anesthetic and if it's not complicated they said I can have the surgery the same day. They can't give me an accurate price until after the angiogram incase I will need stents, so it's all down to what will be needed and the price!

I have still heard nothing from Cardiff. I'm not even on the waiting list yet. I was told it takes about three weeks to get onto the system. x

[Guest Scarlett]

And all the best from me too. Take care

Thanks. I hope Tuesday it will all go ahead. I asked if I needed to take steroids beforehand because of my Asthma and the dye used during the angiogram,but was told no! This has confused me because when I saw the cardiologist and we talked of me having an angiogram, he insisted I would have to take steroids the night before and on the morning of the procedure.x

[Guest Scarlett]

I am glad things are coming together for you, I had clipping and was home on day 2. I had a headache but that was all. I can't believe they don't sedate you for the angiogram, they put me out. My neurosurgeon was the one that performed it on me. I guess things are a little different over here.I was not a candidate for coiling because my aneurysm was a trifurcation and it was at the junction of several arteries, that is why I required 3 clips. Enough about me I want to wish you good luck and I will say a prayer for you .

Harry

Thanks Harry.I will know Tuesday if my aneurysm can be coiled and I'm hoping it can be and I won't require stents because this will push the price up and I will have to wait on the NHS. I am not even on the waiting list yet! I rang and was told there is a 26 week wait just for the consultation. I have been having strange pains in my head and just want the surgery before the aneurysm bursts.x