Bit of Advice

Hi everyone

I'm new here and stumbled across the forum after doing a bit of online research and just wanted to know if anybody has ever experienced anything similar!!

I've suffered with a constant dull headache since November 2009 and in August 2010 I was admitted to hospital with suspected meningitis (no fever/rash) but stiff neck, general body malaise and extreme headache, I had a lumbar puncture which confirmed that it wasn't meningitis and after being discharged they carried out an MRI a few weeks later. The MRI report stated that the T1 and FLAIR images showed a 9mm area of high signal in the left superior vermis (left cerebellum) which was difficult to identify on T2 imaging which may reflect a small area of calcification or a blood containing lesion such as an angioma (aneurysm). They requested a CT scan both with and without contrast dye to distinguish between the two. The CT was done in October 2010 however I have recently realised after doing my homework that it wasn't done with contrast, only without. It was a different healthboard that carried out the CT as I moved from England to Wales in September 2010 and it came back that they thought it was an incidental finding of a lipoma in my quadreminal cistern no futher follow up required.

In May 2011 I started to experience minor numbness, pins and needles and sharp pains in my hands and feet mainly rightsided for example one finger or toe would go numb, the worst was when on my right side my face, hand and foot all went numb at the same time, I was also experiencing brief sharp pains almost like a complete circle in the same area on the left side of my head at the back, these would last for a few seconds at a time. I was also having conginitive issues with concentration and memory. I saw a neurologist in August 2011, long story short he wouldn't rescan me and just put it down to unexplained neurological symptoms he did however order a nerve conduction test which came back normal meaning there was no peripheral nerve damage. Since then I've had on off numbness which comes for seconds, minutes, hours then goes again up until recently when I had an onset of new symptoms. In January I had onset of blurred vision mainly difficulty with focusing, then followed by recently over the last 4 weeks prickling sensations down my spine and my whole left side, drunk like feelings of dizziness, feeling of pulsating in the base left side of head and my headaches have been not wonderful again for the last 4 days.

I have just had another MRI scan and am currently awaiting the results.

I know aneurysms are generally asympomatic until rupture and reading through some of your topics I admire how you all deal with everything you have. My worry is that they have misdiagnosed what they potentially first thought was an aneurysm as a lipoma and I'm just wondering if any of you had anything similar before diagnosis or if any of you live with these symptoms?

Many Thanks xx

Hi Clara,

Are you a heavy computer user?

Carole

Something definitely doesn't seem right...that is my opinion...

See what your MRI scan shows...and keep us posted...

I live with headache, neck pain on the right side, and numbness on the right side of my head...also an eye that droops on the right when headaches are bad...I go for my follow~up angio in June and an appt with Neurologist ... however, I don't expect any answers...

I do hope someone finds what is wrong with you and gets you relief...Prayers your way ~ Colleen

Hi Carole and Colleen

Thanks for your responses. I'm not a heavy computer user, I do use a computer for work however not 100% of the time as my role is mainly client facing.

Colleen - Good luck for June hope everything is ok with your follow up, have you had surgery to repair an aneurysm?

Did any of you have any symptoms before diagnosis?

Many Thanks

Clara xx

Hi Everyone

Sorry to post again but have been doing some thinking and digging out my old letters from when I was admitted to hospital in Aug 2010. I had just flown back from the south of France and had started to feel unwell on the Saturday evening when we went out for food which was the last night of our holiday just kept getting awful headaches and feeling dizzy. It as on the Tuesday that my neck became stiff which is when I was admitted due to pounding headache, extremely stiff neck and general body malaise I struggled to stay awake for longer than 20 minutes even when I had a visitor which they suspected to be meningitis. The first lumbar puncture was done on the evening I was admitted however I remember them saying they couldn't get any spinal fluid they just kept drawing blood, they then repeated the lumbar puncture the following day and the same happened again... on the third attempt they sent me down to theatre for an anaesthetist to do it and at that stage as far as I know they managed to draw spinal fluid rather than blood.

They did not do a MRI or CT whilst I was in hospital, funnily enough I remember the consultant saying to me 'have you had your MRI yet' to which I replied 'what MRI' as I didn't know anything about it, and that was the last that was said... this is the same consultant that told me on the Wednesday after the first failed lumbar puncture that he was going to do it again at 11.30am and then asked him what was happing at 2.30pm and he said 'oh I had forgotton all about that' and eventually did it at 4pm. All they did whilst I was in was dose me up on Codeine I was discharged on the Friday with what they said must have been some sort of viral infection.

I had an outpatient appointment 2 weeks after I was discharged with the same consultant and as I was still experiencing headaches and fatigue he then referred me for an MRI which was done approx 3-4 weeks after I was discharged. I got the MRI results about a month later which stated as I've written above and the CT was then done without contrast at the end of the October.

The numbness and other issues then started May of the following year but the headaches have been constant.

Sorry for the long post, this morning when I started going through my old letters/MRI report I started remembering certain things about when I was in hospital in 2010 like the issues with the lumbar punctures and its starting do alarm me a bit.

Just wanted to share that specific experience and get others thoughts on it if possible please?

Thanks so much

Clara xxxx

Hi Clara,

Thanks be to God that you are able to tell all of this after what you've been through.

May I suggest that you not dwell on what is past but to get as good information as you can about what's going on now and your treatment options once you get your MRI results. Try to get the absolute best neurosurgeon available to evaluate you and go to the highest quality medical facility that's available to you. Please have your documentation from your prior treatment available to share with them.

I, too, was misdiagnosed when when my annie ruptured. I was told that they could not find anything wrong with me and to take two aspirin for my headache. Two weeks later it re-ruptured, surgery was performed successfully and I had a miraculous recovery.

May you have a very successful treatment, if required and may God be with you always.

Carole

Clara; welcome and prayers for your MRI results and lots of feedback here.

I hope you will draw from those who were diagnosed and put on the monitoring system before treatment. They defintiely had symptoms to somehow have been diagnosed; there have been only a few who said another testing (whatever) ended up with diagnosis of an aneurysm; some of them quite small; i.e. 2mm.

Yes, my symptoms of headache began after two MVAs in short time frame; and, memory lapses, on to balance issues; i.e.feeling dizzy afer being on the treadmill, etc. As is typecal, I was considered menopausal...

Prayers for your MRI results and keeping us posted...

Pat

i would say neurological cause i had those symptoms after my rupture, defecits i guess but it can be anxiety also.

Hi all

Hope you don’t mind me posting.

Well after having a good think I decided to get an MRA scan done in June which came back negative!!

With continuing headaches and pulsatile tinnitus and now them saying that my left pupil isn’t reacting to light equally but they don’t know why I over this weekend got a second opinion report on both my MRI/MRV from 2010 and also the MRA report!! It has said that there is a subtle 0.2cm fusiform dilation of a distal branch of my left aica and that follow up is recommended!!

I haven’t got a clue what it means any ideas anyone??

Many thanks xxx

Hi Clara...Glad you are writing on the boards and following up with all of us...we learn from each other...I am happy you had an MRA...told this is the best for finding aneurysm's besides and angiogram...have Doctors recommended an angiogram...??? ~ It is also good they are following up...someone at BAF will be able to answer your fusiform question, because I have seen this before by other's...~ Cyber~thoughts your way ~ Colleen

Hi Coleen

Thanks for you message!!

I had the MRA done in June and they said that it was normal but because I’ve lost trust in the health service over here in the uk and continuing symptoms I decided to get a second opinion this weekend by a Neuroradiologist in America who reviewed my scans and noted that there was a fusiform dilation in my left aica and recommended follow up!! My original MRI/MRV report stated they thought there was an aneurysm in 2010 but the follow up ct which was supposed to be done with contrast wasn’t it was only done without and then they said it wasn’t an aneurysm just a lipoma but looks like they may have got it wrong.

I’ve booked an appointment with my GP for this afternoon to question what it means and what they are going to do, just so fed up with it all as it seems my consultants over here have made mistakes really don’t know what to do!! I don’t know if it means an aneurysm it just says fusiform dilation!!

Thanks again xxx

Hi Clara,

I understand your frustrations but please don’t be discouraged. My small aneurysms don’t show up in a CT scan performed without contrast, either.

The gold standard for determining if you have an annie is still the angiogram.

Take care.

Carole

hi Clara! i had a sah so i have no medical history or advice but i'll keep you in my thoughts & prayers for the results and symptoms! take care~~

Hi all thanks for your messages!!

I have seen my gp this evening and she’s confirmed that the meaning of what is stated on the report is a fusiform aneurysm of my left aica!!

Don’t know how I feel to be honest, anger that the should have picked it up two years ago, followed by upset followed by absolute terror!!

She has told me to ring my neuro in the morning to find out when my appointment is (I saw him in September and he said he would see me again in 3 months) and then it’s a case of going from there!

Any ideas or advice anyone?? Xxxxx

Hi Clara,

My advice is to try not be anxious about this and to put your trust in God. If you do so, he will lead you to the right decision and at the right time. It’s really good to read that you GP is now involved. Perhaps she will help you to navigate your way through this.

May God be with you throughout your annie journey.

Take care.

Carole