Services in Glasgow?

[Celtic0560]

Hi

Has anyone had experience of the queen Elizabeth University Hospital Glasgow for brain aneurysm treatment? It seems that I have 4mm aneurysm on the pericallosal artery, although my GP has been informed that this will not be confirmed until the neurosurgeon has seen the images from CT scan. I have been waiting for 6 weeks now for an appointment, after the local hospital failed to forward the referral. Thankfully the surgeon's secretary managed to locate the referral on computer system and put it forward to be processed. I have been told that the surgeon had put a note on my file "urgent see in 3-4 weeks. It has now been 4 weeks, but have been told to expect some communication next week in order to arrange appointment. I do not know what treatment (if any) will be available. I would be really interested to hear of anyone else's experience of Glasgow services/ neurosurgeons.

Many thanks

Cat

I

[sajenki69]

Dear Celtic0560

You are unlikely to require any treatment for such a small aneurysm. A 4mm pericallosal aneurysm carries a tiny risk of bleeding. You should be offered the chance to have surveilllance imaging - with MRI usually. If you smoke, you should stop, and you should make sure that you have a normal blood pressure. Stress reducing activities such as eating a healthy diet and regular exercise are also good ideas. Avoid binge drinking too.

Most brain aneurysms are now treated by Interventional Neuroradiologists rather than by neurosurgeons. Good luck with getting an appointment and I hope you are seen soon.

Have you thought about posting on careopinion.org.uk/info/car.... It is a good way to get your feedback about the delays in being seen heard by the patient experience team who can feedback to the relevant services. This can help you and others in the future by improving services with constructive feedback.

[Celtic0560 in reply to sajenki69]

Hi

Thank you for your reply. I have an appointment on Thursday with neurosurgeon. I have not smoked for several years and was exercising regularly before this happened. In fact, I was weight training with a personal trainer when am had thunderclap headache, which I thought was an exertion headache and did not seek help until 3days later, when I became dizzy and my left arm went numb. Was admitted to local hospital for 5 days, discharged with same symptoms then readmitted. I would say I am still symptomatic, with hangover symptoms every morning (with no alcohol), constant headache and extreme fatigue. I searched internet and found that some research papers refer to the pericallosal artery as the anterior communicating artery, which, according to these papers, is quite risky in terms of rupture, even with small aneurysms. It is all very worrying and debilitating, so hopefully things will be clarified for me this week. Can I ask if you are in the Glasgow area?

Many thanks and kind regards

Cath

[sajenki69 in reply to Celtic0560]

I used to work in the Glasgow unit. Did you have a lumbar puncture when you were admitted? Your neurosurgeon will take a thirough history and may want to discuss your case at the multi-disciplinary team meeting with the Interventional Neuroradiologists.

I hope you feel reassured after your appointment.

[Celtic0560 in reply to sajenki69]

Hi I thought I had replied, but can't see that on here. Not very good with technology. I had lumbar puncture 4days after onset of headache. Have been told that discussion has taken place with neurosurgeon, but not sure if that was in MDT. Should hopefully be clearer after Thursday. Everything I have read indicates that I should not be having symptoms, but I am, so really not sure about it all

[Celtic0560 in reply to sajenki69]

Sorry should have said, CSF was clear when tested

[sajenki69 in reply to Celtic0560]

That all sounds reassuring. Possible your headaches are completely unrelated. We increasingly find small aneurysms when using high quality imaging. I hope you get to the bottom of your headaches soon.

[Celtic0560 in reply to sajenki69]

Hi

I had appointment today, but only spoke with consultant for a very short period of time as he was running an hour and half late (he was busy in ward at 9am, so I think there must have been an emergency). He also said that my aneurysm is very small and highly unlikely to rupture. To have MRI scan due to my having the sudden sharp headache etc and continuing headache above and behind my eye. I had prepared a list of questions, but due to time constraints, was unable to ask, so not sure if the aneurysm would be monitored regularly like others who have posted on this site. Unfortunately, my anxiety hasn't really been alleviated and still a bit scared to do very much. He did say I could do light exercise, cardiovascular, but not to lift heavy weights, but I am apprehensive about that as I feel pressure in my head when I lift a heavy shopping bag, or with any fairly light exertion, such as walking at what was my normal pace. Hopefully MRI will be arranged soon and provide some answers

[sajenki69]

There is a clinical nurse specialist for Interventional Neuroradiology who could help you. Call your neurosurgeon’s secretary and ask if you can speak to her. She is based in the Neuroradiology department. Ask for a telephone consultation.

If headaches are an issue, go back to your GP, as a small unruptured aneurysm does not explain your headaches. There is a semi-urgent headache clinic they could access for you too.

And post your experience on careopinion . Feedback like yours is invaluable for services like this that are a bit disjointed at times!

[Celtic0560]

Hi

At the start of all this, my GP called the secretary to ask if there was a nurse I could speak to whilst awaiting appointment and was told there was no service like that. I also don't know if I will be seeing the same consultant, or revert back to the original person I was referred to. He said a discussion will take place at MDT and that in his view, it would be 'watch and wait', but I didn't get the chance to ask what that means. Will hopefully have more time for discussion when results of MRI are available. I got a text re MRI and called back yesterday and was told an appointment would be in post. They asked if I would be available any time in the next 6 weeks and I said I would. I work from an NHS base and have a previous nursing background, so am aware of the difficulties in terms of resources. It is such a shame what is happening at the moment. Luckily, in my present post, my line manager is very understanding and I have colleagues who could stand in for me to allow me to attend for MRI. I just want to have my life back - I know exercise is a must and want to get back to that, with amendments obviously! When I know what I have to do, I will do it. In terms of care opinion, I had thought of that, but didn't want to put any more pressure on staff. Thank you so much for the information you are providing. You no longer working there must be a great loss to the unit!

[sajenki69]

That is very kind. I miss the work and patient interactions. Care Opinion is good for the staff too as it can lead to improvements, that can take pressure off the staff. Patient feedback is very powerful! I would encourage you to give it a try; if you phrase it constructively it is so helpful. Often there are small changes that can be made as a result that can make big differences for patients.

[Celtic0560 in reply to sajenki69]

Hi

I called the nurse today and she was very helpful, taking me through the next stages in the process. She couldn't really advise on the exercise side of things, aside from not lifting heavy weights, which I will not do now anyway. She said BP needs to be within reasonable range, so will have one of my colleagues do that regularly, although there have never been any concerns with that. I had thought of joining curves gym, as that plan uses resistance machines as opposed to lifting weights, whilst providing cardiovascular exercise, but will need to find out what maximum heart rate should be now that I know about the aneurysm. Hopefully will hear about MRI soon, which will then enable discussion at MDT to take place. Have been trying not to stress about it over weekend and have not really had headache. Could very possibly be tension which caused the headaches as I was very scared. Still am, but trying to be positive in terms of recognition that it has been found unruptured, which is the least of two evils and that I can take steps to take care of myself. It must have been strange for you at first when you left work. Think I would be the same in relation to missing colleagues and involvement with patients, although the latter are not always keen on my involvement!

[sajenki69]

Have you ever tried yoga? Good for stress and building core strength in a more gentle way?

[Celtic0560 in reply to sajenki69]

Yes I did yoga previously and liked it. Also liked Pilates. More recently I have become a wee bit obsessed with the personal training, as that really pushed me and I was so pleased with what I was able to do. I also found that to be stress busting, particularly the boxercise, no actual fighting, just throwing punches at the pads. I will look around for a yoga class locally, but really missing the cardiovascular and body weight stuff at the moment and don't want my fitness level to drop too much while I wait for MRI etc. Your replies have been so helpful to me and I thank you so much for taking the time, it is very much appreciated

[Celtic0560 in reply to sajenki69]

Hi

I have just come home to find a letter from NHS, which I thought would be notification of MRI scan, but am extremely distressed to find that it is my next appointment with neurosurgeon - in December! I am so disappointed as I thought I would have an appointment fairly soon after MRI, when there would have been an opportunity to discuss my fears more fully, as opposed to the rushed 10 minute consultation which took place last week. This is all so very distressing and frightening. Totally devestating that this decision could have been made before I have even been given an appointment for MRI. I really don't understand how this can happen

[sajenki69 in reply to Celtic0560]

Unfortunately the system is not terribly patient centred. Please consider giving feedback via Care opinion Scotland, as this may help you get the answers you need, and help others coming after you. Big hugs

[Celtic0560 in reply to sajenki69]

Hi

thanks for replying. Unfortunately, I have to agree with you re not being patient centred. I fully intend to post on care opinion following this, but am not really in a fit state to do that at the moment - I have already done a chronology of events, which he did not wish to see last week, so will add to that and get it posted tomorrow. It just seems to me that the eight to ten minutes spent by the neurosurgeon is not enough time to discuss these matters, given the implications and risks, both physically and psychologically to the individual concerned. Again, may thanks!

[sajenki69 in reply to Celtic0560]

I wish I could be of more help. Try to stay positive .

[jojo23pink]

Hi a 4mm aneurysm is small and only has a small percent chance of rupturing. They told me they wouldnt do anythin with mine unless it got to 7mm. So aslong as its growin they will treat it lol i told them im not gonna watch it grow and wait for it to get to 7mm b4 they do owt but i have done more research and honestly something as small as 4mm there wunt be any point in doing anything with surgery if they used the coil they could accidentally burst it themselves cos its too small. The surgery has more risks than the anuerysm rupting without doing anything to it. I know ur worried i was flappin like a bird when they told me lol but honestly something so small wont do anything unless it grows so big and ruptures.. like a balloon more u blow it more chance it has of rupturing if u blow it up to a certain size and it remains the same then it wont burst..just make sure they keep an eye on it with atleast yearly mri mra scans etc etc...control ur high blood pressure if u have any and u should be fine...small aneuryms are very common amongst the general public many have them but dnt no about them cos they dnt cause symptoms or problems many of these are found at autopsy and a lot of these people live a normal life grow old fracefully and die of another cause so dnt worry unless it grows my uncles was the size of a grape and he only knew about it when he got his worst headache of his life and collapsed on floor rushed to hospital tried to stop the bleed and it started bleeding and because of the bleeding he was on life support. It was eventually turned off and had he survived he would have been in a vegative state!! Live ur life dnt worry about it unless it grows and keep with ur scans!! Mine is 2.3mm by the way and no change since found in 2014 x

[Hidden]

Hi I attend the Queen Elizabeth hospital neurosurgery and nuerology. I have 5 aneurysms which were not all found together. In 2013 I was cleaning in my home and suddenly felt as though I had been hit over the. back of my head with numbness down my left side. After resting an hour with no change called my gp and she said I would need to go to hospital in a blue light ambulance. After being in hospital for ten days they eventually found two small aneurysms and I was then referred to neurosurgeon team. I was seen and told the aneurysms were 3mm and 2mm no treatment needed and I was just to have mri after 6months and monitoring. After 1 year I was told that one of the aneurysms had increased to 6mm and because it was at the back of my head they would like to put a coil into the aneurysm. I was also told I had another 2 aneurysms which were very small. I was totally terrified and so stressed worrying about the future. It’s a very long story as my first attempt at coiling was unsuccessful. Because of everything that happened and a letter of complaint about my treatment I was assigned a new surgeon who was amazing. I’m not going to say the interventional surgery was easy because it wasn’t I was in theatre almost 7 hours but finally the operation was successful. After spending almost 2days in intensive care I went back to the ward and was there another 2 days. I am waiting for a follow up appointment after my 2year mri back in July but still haven’t had an appointment. I’ve been to see my gp Who isn’t happy and has written to the hospital. I’ve been experiencing chronic headaches and migraines and seen the neurologist who has tried me on numerous medications without success as I am unable to tolerate them. The only thing left is to have Botox but I have decided not to have it as I’m afraid of having side effects. Over the past ten days I’ve had one of the worst migraines with my right arm going totally numb and also the lower part of my leg below the knee going numb. It comes and goes but is very scary. My gp thinks I now have Hemiplegic migraine which mimic stroke symptoms. I’m hoping I get an appointment ASAP.