Quantcast

AVM Survivors Network

Advice on avm


#1

Hi my name is wahid and I’m a 46 year old male, here goes hope its not too much to read. In may 2016 I had a seizure and a facial droop on the left side of my face and was taken to hospital and after a ct scan and a MRI I was diagnosed with 3.2x2.4cm avm on the right posterior frontal motor cortex after my hospital stay I was referred to Leeds lgi under the care of dr Stuart Ross. Dr Ross told me that the best thing we can do is to refer you Sheffield for gamma knife which he did, In November of 2016 I had gamma knife radio surgery at Sheffield royal hospital for an avm that I have in my brain every person I met at the hospital from reception till my last minute there were absolutely brilliant. My after care and future 6 monthly appointments were at st Luke’s hospital with a neurologist consultant. I was supposed to have my appointment in May which didn’t happen because they were 2 months behind on appointments, so when I did get my appointment in August I made a list of all the pains I was feeling along with the questions I wanted to ask the consultant. Upon arrival I was greeted very nicely by the reception staff and asked to wait in the purple area, the staff in that area were very nice, so I waited patiently. The consultant saw me for no more than 7-10 mins, they asked some quick questions I.e have my headaches got less after the radio surgery and who was my consultant at Sheffield hospital, so I looked through my phone and gave the name of the consultant who carried out the radio surgery. I explained I get more headaches than before and that my left arm and leg have started to go numb, I also told the consultant that I was feeling very tired, that I get a sudden urge to vomit by which time the consultant didn’t seem one little bit interested in what else I had to say and simply said I’m going to send you for a mri and when I get the results back I will call you for another appointment, I tried to ask the questions on my list but was simply told we will discuss everything after the scan, so I got up and walked away feeling very upset that here I have a life threatening illness and this person didn’t even give me the time to discuss anything. I have an appointment for a MRI on 24/9/17. I’m really not sure how to change consultant. Any advice on my symptoms would greatly be appreciated.
Many thanks…


#2

Wahid,

Welcome to the site! It’s great to have you join us and I hope some of us can help you along the way.

It’s disappointing that the doctor you saw recently didn’t stop to listen to you as much as you wanted but I think it is a positive thing that he wanted to do a scan. I’m a fairly charitable chap, so I might interpret his actions as being that he agreed with you that there are symptoms that need looking into and the first step he wants to take to understand exactly what is going on is not for you to list the various issues but to have a look directly at the evidence in your head.

So, whilst his bedside manner was brusque, not as you would want, I think he may be wanting to get down to the nuts and bolts quickly.

When I went to see my GP when I first thought I had an AVM, I described to her the symptoms I had. She asked very few questions, perhaps not more than 4 or 5 questions and concluded she was referring me to hospital. I feel that she had got enough evidence from those few questions that I did need to go to a specialist and that was all that was needed as a GP. Very quick. Perhaps 5 minutes. I, too, was surprised, perhaps a bit disappointed that I didn’t get much conversation with her but if the doctor has reached a conclusion that further detailed investigation is what’s in order, then no need to delay. Refer you to radiology and make a path forwards from there.

Let us know how you get on. We can be with you each step along the way.

Very best wishes,

Richard


#3

I assume that the radiation was successful. my treatment was over 10 years ago. My radiation caused more problem. Please let us know how you are doing and what treatment is planned.


#4

It would definately be beneficial to get a second opinion considering the fact you dont feel satisified with the approach, which is important i agree 100%… in our cases we expect ppl dealing with us to be understanding etc but however sometimes they dont have the best bed manner, but may have great skill at dealing with things medically.

The option of getting a second opinion somewhere else is more for peace of mind and try not to let the lack of service upset you too much as it is a job to them at the end of the day and they would deal with so many ppl like us all the time… God bless!


#5

Thanks guys for all your help and advice I really appreciate it.

My gamma knife was successful, but I get nasty headaches along with numbness in my left arm and leg which doesn’t last for too long, I also get very tired. My gamma knife was done in November last year. From reading the posts on here most people don’t have these symptoms for as long as I have had them. I have had another mri a few weeks ago and I’m waiting for the results to get to my consultant so that he can call me in to discuss the results. Hope it’s nothing to worry about… I take 1000 mg levitericitam and 30 mg of nortryptaline. The nortryptaline has helped with the headaches I now only get them probably 2/3 times a week.
Thanks again for listening.


#6

Well, I think you’re doing very well to be patient, waiting so long gone for your results to come through. Mine took ages and I’m not sure I was very patient.

If the scan gives you an “all clear” maybe that’s a good thing but if it finds a little something that needs doing, that might be a good thing too, if it means you can get it zapped and lose more of your headaches.

Hope you get some clarity soon!

Richard


#7

Hi Wahid, I’m at Sheffield Hallam, and had one gamma knife, 3 weeks ago and got the second in 2weeks time, I still have a pain on the right hand side of my head. Hope you get your answers soon and feeling a bit better. Take care
Sarah


#9

Hi
Just to give you another update as to what’s happening with my avm.
I had a mri scan September 2017. Wasn’t getting any info from my consultant, so decided to go private and pay a consultant in Leeds, had a chat with him regards the issues I was having and my mri results from September. He told me he would get hold of the scans and be in touch with me by phone by end of the week to explain the outcome, I was very pleased with that response as it was now November and I still had heard nothing from my normal consultant.
Surely enough I get a call from the private consultant and was told that. The size of my avm has NOT shrunk and there is abit of swelling on the brain and that is the reason for getting numbness on my left side but not to worry as this sometimes happens from gamma knife.
So I thanked him for getting back in touch so quick.

Not sure exactly but I think it was a week later that I received a letter from my normal consultant who had written that there was a very small improvement on the size of the avm and that he would now see me in a years time.
I took letters from both consultants to my gp and he himself was left confused he sent me for a second opinion with another consultant which I will have on the 10th of this month so in about 9days.
I am so fed up with these consultants and appointments that I don’t even feel like going and let nature take its course…
Thanks for taking the time to listen to me rabbitting on…


#10

Wahid

WE ARE ALL WITH YOU.

I have decided to decide that I am well until someone tells me otherwise. You just can’t go through life waiting for the answer, so I’ve decided I must be ok until someone tells me otherwise, or it becomes screamingly obvious.

Good luck! We are all in the same soup.

Richard