1: Sun Sep 05, 2010 5:04pm tomcat
I am new to this forum, I was diagnosed last month with a right CA on my temporal lobe. I dont now that much about what to expect, I know I have had a bleed, maybe more than one, it took forever to get a diagnosis (+/- 10months before I had an MRI) and I was symptomatic all this time. My question is, I have booked an around the world trip for a year with my friends prior to getting the diagnosis, we are due to leave early next year. I am now unsure about going following this diagnosis, I just dont know what to expect. I have been looking forward to travelling forEVER, and now I am just so upset that I might not be able to go.
What do guys advise I do? What would you do in my situation?
My neurosurgeon advised that I continue living my life as normal, however he seemed to know very little about CA's, I didnt discuss travelling with him and I am due back to see him in Feb 2011.
Lately I have been feeling tingling on my left side, tiredness and of course headaches (which my neurosurgeon believes are not a direct result of the CA?)
I just dont know, Im so confused.
Any advice would be greatly appreciated.
2: Sun Sep 05, 2010 5:52pm PattiG
Hello tomcat and welcome!
You didn't mention any surgery date, so am assuming your ns is going to watch, wait and see, yet you're having symptoms for all this time?
You said your ns "seemed to know very little about CM's." Have you considered getting another opinion from another neurosurgeon who does specialize in the treatment of cavernous malformations?? I would strongly encourage you to get another opinion.
From my personal experience, I've had to go outside my geographical area multiple times for proper care and treatment. I think a lot of us do.
Take care and I wish you all the best,
For more info on my CM background: please visit:http://www.aans.org/Patient....ap.aspxhttp://www.youtube.com/watch?v=5VkyiRfbAOU&feature=relatedhttp://www.youtube.com/watch?v=2QhE4sAWuhc&feature=related
3: Sun Sep 05, 2010 8:02pm libby
First, I would like to know what symptoms you had then and have now.
Secondly, you don't have to go to a neurosurgeon unless you are positive you want it out. I go to a neurologist. Lots of us do. Then if they think there is reason to have it removed, they send you to a neurosurgeon. A neurologist familiar with CAs might be able to help you know about the trip. Do you only have one? it only bled once? We ask lots of questions here!
4: Mon Sep 06, 2010 3:06pm tomcat
Thanks so much for replying, I really appreciate it
So to try and answer your questions..
Yes I have one CA, measuring 1.5cms x .8mms on my right temporal lobe. I dont really know how many bleeds I have had, there were a few critical incidents that I kept a log of at the time.. It all started following a particularly stressful time at work and I was just home from a backpacking trip- I experienced a sudden onset of shaking inside my head (?i dont know if this was a seizure?), followed by confusion-(i was driving at the time, taking the wrong direction etc), headaches, dizziness, a collapse at work- I felt numbness on my face and dizziness like I was going to faint, followed by hospitalisation (they said I had most likely contracted a viral illness while travelling, no MRI), an internal tremor that worsens when I am tired, headaches that feel like pressure headaches (my GP sent me for a CT of my sinuses to rule that out..)
This has been going on for 10 months. I have seen a neurosurgeon once, for approximately 15minutes to get the diagnosis. There was no mention of the possibility of seeing a neurologist. My symptoms now include a deadness in my left arm and tingling on this side too, as well as all the above. I am in full time employment and I get tired alot. Im good in the mornings and I get progressively worse as the day goes on.
I know all this will impact on my energy levels if I go travelling, however I am aware of this and plan on napping!! I am scared about over-doing it though and having an episode in some remote place, and I am also afraid of long distance flying.
What do you reckon?
5: Mon Sep 06, 2010 3:44pm libby
What do I reckon? I reckon that your life is way more exciting then mine!
Ok, so am I to understand that you don't have seizures?
Ah, the headaches. Yeah, they checked my sinuses to before they did an MRI. They were fine. They sent me home and said it must be stress. One week later my brain bled. They did the MRI and said OH.
Alot of us find that our original symptoms come back or worsen when we are cognitively fatigued.
You do know that you can not take blood thinners (aspirin, antiinflammatories, etc). Flying is not on the list of things we can't do (roller coasters are if that is an issue)
Tom, I see a neurologist because they deal with brain and nerve issues if you are not having them removed. I think the best advice I can give you is to make an appointment with a good neurologist, hopefully one that knows ccms, and explain all that you have told us to him. Ask what he would do. That is what he is there for.
6: Mon Sep 06, 2010 6:23pm tomcat
Thanks so much for the swift reply! I will follow your advice, I live in Ireland so Im not sure who I will see, or if there are specialists in this country, but Ive already received some useful contact details from AAUK..
Also, Im only 24 years old, and I have been breezing through life like an invincible, up until now, thats why Im finding it a bit difficult to have to re-think my plans, and those that my peers take for granted. Its just all new I guess.
I dont think I have had any seizures, however when I experienced that feeling initially followed by confusion, I remember saying to my GP and parents that it felt like a seizure when I had no clue what was happening to me... My GP told me it was most likely a panic attack?!-Even though this made NO sense at the time!! Hence followed the normal sinus CT, and similarily I was sent home and told it was stress related..
Im just so frustrated with it all. I dont think I have many options geographically to see a specialist neurologist, but I'll keep my ear to the ground. If anyone out there knows of any specialist neuro's in Ireland, please get in touch!!
Thanks & keep well,
7: Mon Sep 06, 2010 6:29pm PattiG
Hello again tomcat,
As Libby suggested, a good idea to also find a neurologist for follow-ups and since you may or may not be having seizures, he or she will hopefully run an EEG? and discuss anticonvulsants.
It's been my experience (in almost 23 yrs) that neurologists don't seem to stay current on proper treatment for 'us,' so continue asking away here, but if there is a stroke support group where you live (often in hospitals, or rehab units) you can check with them and possibly get an idea of which neurologists may be best for you.
Hang in there!
8: Tue Sep 07, 2010 12:30pm libby
One of the hardest transitions in life is the one when in your mind you go from really healthy to having to consider yourself a person with possibly a nasty health problem.
Tom, I am old enough to be your mother. Last night I started thinking of what you had written. I fear you are like one of my sons that told me what I really needed to know, but as little as possible. You had your first problem after backpacking. You are going on a year long trip around the world, but you didn't say how you were going (except for the plane.) Are you backpacking and hiking? Will there be times when you are deep in the country? Will you be going through India and China?
I do think you should go talk to someone who is a neurologist (UKAA is great. They should be able to help.) And you tell him everything (even if it involves climbing).
This will be a trip of a lifetime and after I talked to a doctor and he didn't say I would die, I personally would go. HOWEVER after you talk to someone, you HAVE to explain it to the people who are going with you. I believe it would also be a good idea to have someone talk to them about what to do if you have a seizure. It is doable, but they have to know what to do and they have to know it is a possibility. If they don't and you have a seizure, you will scare them to death. It's not fair and someone could get hurt. Also, do you have enough money to fly home at a moments notice if things go bad?
Tom, I hope the doctor says no worries. But if he doesn't, the above would be the accommodations I would make. I know it will be hard for you to admit, but you have to tell them, or at least a couple of them.
I hope all goes great and you have a wonderful trip.
9: Tue Sep 07, 2010 12:53pm tomcat
Thanks Libby & Patti, you both have been brilliant. I really appreciate the practical advice you have given me, as well as the time and support.
You have reassured me and helped me to put a plan into place. Who knows what my journey is going to be from here onwards (literally!), one thing is for sure that it will happen for me, it just might look a bit different than what I had planned.
I'll contact a neurologist, make a plan, organise the troops and book the flights
Go to the Angioma Alliance Community Hub
Go to the Angioma Alliance Forum
Go to the Angioma Alliance website