Hi all,
I received a report this morning, from the Professor that I saw recently. It says my MRA showed some some vessel disease. I have no idea what this means other than there is another problem in my brain.
Anyone else had this on their scans after having coiling?
Eve
Hi Eve...Did they tell you if this is causing your recent health issues...I haven't been told this to date...so not much help to you...I am sorry...~ Gotcha in my Thoughts ~ Colleen
Hi Colleen,
How are you? Sorry, my post should have said small vessel disease! I have no idea if it is connected to my aneurysm or my coiling. The letter does not give any detail. Why do consultants do this? Unless someone has a medical background they will not understand the report and it just causes concern. x
Hi Eve, They found FIBROMUSCULAR DYSPLASIA when having angioplasty and coiling on me. It is a Vascular Disease. I also have it in Both Carotid, and Renal Arteries. My RENAL arteries have been ballooned. FMDSA IS A SUPPORT WEBSITE I ALSO FOLLOW. ASK YOU DOCTOR IF THIS IS WHAT YOUR DIAGNOSES IS CALLED. PRAYING for you. Robin
Hi Robin and thanks. I have an appointment with the neurosurgeon on Tuesday so will ask him if this is what I have. I am due to go into Hospital for a synacthen test next Thursday, but with this being detected on my scans I'm not sure if it will go ahead. It's a steroid injection,cortisol.
Eve x
Please bring this to their attention before having injection. If it is FMD I was told no steroids or Decongestants. But, this is mainly because of my blood pressure. You can research this a little and get some info. Please keep us posted. :)
Hi Eve
Its unlikely that this was a result of the coiling. You need to get your neurosurgeon to explain what it means and how it could affect you. (In non medical terms).
Jennifer x
Thanks Robin, will keep you posted x
Hi Jennifer,
Thanks. I did have an ischemic stroke many years ago, which I was unaware of, because I had been misdiagnosed. Last February, when I was diagnosed with an aneurysm and a tumor, they said after checking my previous scans, that it was an old stroke and nothing to be concerned about! My blood pressure is low as is my cholesterol and I was told as long as those were monitored, I didnt have anything to worry about. It's awful receiving a report without knowing what it means but hopefully I will have answers on Tuesday.
How have you been feeling this week, any better since taking the aspirin?
Eve x
Ah I am going to read up on this disease...I learn much from all of you Eve...I must say...so much of my record have been hard to read and understand...if it is my neurologist he explains as I ask him questions...but my Interventionalist and Neurosurgeon ... only explain in medical terms...that are so hard for me to understand...Do you know what type of Doctor you see for this disease? I am thinking Vascular...~? ~ Colleen
I have a team of Doctors at UVA MEDICAL. 2 are Interventional Radiologist. One treats from the neck up...the other is from the neck down. I also have FMD IN MY Stomach/Celiac artery. I see a stroke Doctor and a Cardiologist. The stroke Doctor manages meds for headaches and Cardiologist manages blood pressure meds. It is a complicated disease.
Hi Eve
Yes I have been better again since taking the aspirin and just generally feeling reassured that the headaches and head pains are normal life for me now and not something sinister. I may be being blissfully ignorant but it works for me so it will do for now.
I have a 9 day break from work now so hoping to get all Christmas stuff sorted and get some rest to keep my battery charged!
Hope you get your answers next week.
Jennifer x
Hi Jennifer,
I am glad you feel better. I am going to ask the neurosurgeon why I haven't been prescribed aspirin. One doctor told me it I was not to take it because it would cause my aneurysm to bleed. I have noticed that lot's on the forum are taking it following surgery.
I have my Christmas decorations up! They have never been up so early, but lot's of my neighbours have decorated and I didn't want to appear Bah humbug. so the tree is in the window lol.
Enjoy your 9 day break.
Eve x
Hi Robin,
Yes, I will chat to the neurosurgeon on Tuesday and check it's ok to have the short synacthen test. I am sure there must be an alternative. I am going to ask also, why I haven't been prescribed aspirin, especially after having an ischemic stroke (unknown to me until recently)
Eve x
Hi Colleen,
I will be going to my appointment on Tuesday with a list of written questions for my neurosurgeon! I am really forgetful and I sometimes can't remember what I want to say. Either that or I know what I want to say, but the words won't flow out of my mouth. My balance is terrible. I can't see myself ever driving but that's ok, as long as everything is fine with my coiling procedure and they can sort out this new small vessel disease I will be happy. I don't know what consultant I will have to see but possibly a vascular. There is a history of heart and vascular in my family.
Eve x
Hi all,
I saw my neurosurgeon this morning. He said my MRA (without contrast) showed everything was fine with my coils and that the radiologist was happy and I would receive an appointment for a follow up scan in two years! I would have liked to have been seen sooner but maybe thats how it is here in the UK. I asked about the small vessel disease in my brain that the was found, he said it was just due to the ageing process!!
I would have liked my private MRI scan (when I had my initial diagnosis) to have been compared against my November MRA, to check if there were changes to my brain since my surgery. I asked about the stroke I had many years ago, which had only been discovered around the time of my diagnosis and asked if I should take aspirin. He said I would have to have my GP refer me to a stroke specialist or wait until I have my follow up in 4 months with the professor of neurology. He told me it was unlikely I had an an aneurysm in my neck, this had crossed my mind with these odd turns I have been having. I still feel there is something not quite right and would like to have an MRI on my neck. This I will have to pay for it seems.
The neurosurgeon is a lovely man but today's appointment did feel rushed. I feel from his point of view, his part in my treatment is over. I don't feel reassured like I wanted and don't know where I go from here.
Eve, I have small vessel disease. You can look it up, Microvascular Disease. It causes small TIAs or Mild Strokes in the brain. I had 30 last year but this year it looks pretty good in my brain. I also have Coronary Microvascular Dysfunction. I hope this helps. Please let me know if you have any questions about it.
God Bless,
~ Carol
Hi Carol,
Thanks for posting. How are you feeling now? I am sure I have had a few TIA's too, with the symptoms I have had since my coiling. They were really frightening experiences. I just feel I am being fobbed off being told it's due to the ageing process! I am not that old! I was really young when I had an ischemic stroke, but because my scans were misread, I didn't discover I had had a stroke until just before last Christmas. I was told at the time, I had experienced a migraine without a headache, despite never having suffered from migraine.
How were you diagnosed and should I see a vascular surgeon? I don't know if I should start taking aspirin. I am getting circulation problems since having my coiling, both in my right arm and leg. This is the same side as the artery I had coiled, although the stroke like symptoms I suffered, were on my left side.
I didn't have stroke like symptoms or visual disturbances like I am experiencing now, before my surgery, yet I am constantly being told it is nothing to do with the coiling of my aneurysm. I am thinking of paying for a neck MRA/MRI. To be honest I don't know what to do. I know that something is wrong when I have these attacks. Tonight,the left side of my face was affected. This can't just be because I am getting older.
Eve x
I think I shall start taking a 75mg soluble aspirin tomorrow.
Hi Eve
So sorry to hear you don't feel reassured. I know how that feels! I had thought if you were private you would get more answers and just come away knowing what you were dealing with. I have given up expecting answers and I am just dealing with things as they occur. Having read many postings on the forum I think its what most people are doing as either the doctors don't have the answers for us or just think we are neurotic. Don't think they "get it" that not being listened to and taken seriously is what makes us neurotic. If doctors don't know and don't have answers I just wish they would say so.
I am currently what I consider as fairly well. My memory seems to be getting worse. My word recall is appalling- I want to say a particular thing but can't think of the word I want to use or I choose an inappropriate word. People who don't know me very well won't even notice but this has led to me losing confidence and dropping my salary by £17k in order to do a job that is less demanding of me mentally. I have a small amount of double vision. Get tired easily. All of this I can live with but the thing that concerns me is the head pains. Intermittent sharp pain in area where the aneurysm is located. Nagging ache and woolly head that is fairly constant and then the migraines and thumping headaches that are infrequent but stop me doing anything. I find it hard to accept that these are not a sign that something is wrong. I ignored headaches for years and put them down to stress whilst my aneurysm was growing to a massive 26mm so of course it worries me now. Why can't doctors appreciate that. I don't want to spend my life back and forth to appointments and then come away still feeling unsure. I am a qualified nurse of over 30 years and I think my next step will be to request a copy of my medical records so that I can look at them myself and find my own answers. I only want to know what has and is happening to me and then I can decide if I am worrying unnecessarily and when I need to take action over my symptoms. If that doesn't work I think I need counselling to accept this.
I was prescribed Clopidogrel for 3 months after the stenting procedure and Aspirin 75mg for a year. I have been put back on the aspirin by my GP who decided it was a sensible precaution. Most people in UK who have history of stroke or TIA are prescribed Aspirin 75mg to take daily. It would probably be wise for you to check with your GP if its ok for you to take Eve but I would take it in your position too.
Hope you start to feel better very soon. xxx