I am getting no where fast. I am entirely exhausted by the battle in trying to obtain a diagnosis, I want to be headache free, noise in my head free, have no pressure in my head and neck when I stand. Just today standing in the supermarket, my eyes filled up, I couldn't stop them and inside I was crying and thinking when is this ever going to end. Why was I standing in a supermarket queue feeling exhausted when all I had done was walk there to collect a few pieces for dinner? My body is struggling with the constant headache and noises in my head. I want to be able to carry out a full shop of being able to go round the supermarket with a trolley and get everything I need without my headache becoming intense and the pulsing noise becoming louder not forgetting the relentless pressure in my neck and ear.
Unfortunately I am still being messed around with their lame mistakes. I honestly don't think Dr Tyagi knows who I am or has read sufficient notes on my case. On the 25th June 2015 I received yet another letter regarding having an MRI scan this time the appointment had been arranged for four days from the date of the letter. I wondered if my CTA had been reviewed and they had seen the abnormality within my vertebral artery. I emailed Dr T explaining I was yet again confused as earlier in June I had received similar to arrange a new scan. Dr T responded by saying his recollection from our May appointment was that I had requested a further MRA scan to question dissection. I honestly could not believe what I was reading in his email and he obviously has no recollection of the previous emails between us earlier in June when I received the previous letter regarding a scan. I responded and told him the whole situation was becoming ridiculous and that I would be seeking advice to make a complaint.
I received a copy of the CTA scan that was carried out in March and I managed to view it on the 16th July. I can see the abnormality on the CTA of the vertebral artery at V3 level/atlas loop. I can see evidence of a dissection due to the double lumen showing, it does not look like a fenestration. Now what concerns me is that I asked Dr T at May's appointment if my vertebral artery showed the double lumen as it was showing on my Mra and he said no. I then asked him if it showed a natural fenestration of the artery and he said no it was patent and normal. I managed to read the report on the disc (bearing in mind I never received a letter or report about my CTA) The report reads:
>[Report Summary]
<BR>Clinical History :
<BR>? Left carotid dissection on MR angiography.
<BR>[CT Angio aortic arch and carotid Both]
<BR>CT Angio aortic arch and carotid Both :
<BR>CT angiography obtained from aortic arch to vertex
<BR>Normal appearances of the aortic arch and the origins of the
<BR>great vessels.
<BR>Normal appearances of the common carotid and both internal
<BR>carotid arteries from origin to termination.
<BR>Intracranial circulation appears unremarkable.
<BR>Vertebro-basilar system is patent. The basilar artery and
<BR>its branches are normal.
<BR>Imaged soft tissues and bones are within normal limits.
<BR>Imaged lung parenchyma appears unremarkable.
<BR>Conclusion: Normal appearances of the neck vessels.
If you managed to grasp any of it you will have noticed Dr Tyagi my Neurologist has questioned a CAROTID ARTERY DISSECTION and not the VERTEBRAL ARTERY DISSECTION. The Carotid has been looked at and reported on, nothing mentioned about the left vertebral. Not that it matters as the double lumen can still be seen on the scan, even for me who has no medical training its not hard to notice it. I am at a complete loss at the amount of times doctors have failed to listen to me. There is no excuse, I have given them the report from Dr Shapiro in New York and it states Vertebral, the emails that have gone backwards and forwards between Dr T and myself all state Vertebral. At my appointment in May all the talk was about how my Vertebral was normal.
I decided not to email Dr T but instead start the complaint process by visiting Citizens Advice on the 21st July. I can't keep giving these doctors any more chances, they are putting me at risk, I have two children to care for who need me. I could be at risk of having another dissection in any of my arteries because no one has investigated to say otherwise. What if I didn't know any better and done some overhead painting again, there is nothing to say it won't happen again and my research shows it does frequently happen specially if people have any sort of connective tissue disorders.
Today, 24th July I received a letter from hospital to state my drug infusion has been brought forward to the end of August which is better than November. I am very unsure about this drug considering it constricts the blood vessels and I am very apprehensive about going into hospital where it is clear that sub standard practices take place. None of the imbeciles I have dealt with can read a scan properly.
All for now
Your still Whooshing & Whirring Friend
Showing posts with label vertebral artery dissection. Show all posts
Showing posts with label vertebral artery dissection. Show all posts
Friday, 24 July 2015
Tuesday, 23 June 2015
June 2015 Update
I have nothing positive to update as yet. I received my appointment through for the drug infusion for November 2015, it also states MRI scan & Review. It looks like they are planning to do a scan whilst I am in hospital in November. I find it entirely unacceptable I have been begging for help since November 2012 and now I need to wait over three years for treatment.
On Wednesday 3rd June I received a letter from a hospital in Glasgow called New Victoria Hospital stating they could not contact me by telephone to arrange my MRA and could I telephone them within one week or my appointment for the scan would be cancelled. I thought it strange as Dr Tyagi did say at my previous appointment that one of the three options was that he could arrange for all my scans to be repeated but he would see no need, I had chosen option one which was the drug infusion. Now I was thinking Dr T was on my side and he had gone out his way to arrange another scan. I telephoned the New Victoria Hospital over the following days and never got a response it was a constant answer phone, I left two voice mails with my telephone number, CHI number & date of birth. To be honest I was totally confused as I did not have any missed calls on any of my telephones from the standard 0800 6783393 Nhs number. I have given my telephone numbers to numerous medical staff who have asked for it over the last 2 and a half years so this baffled me. On the third day after not receiving a response from New Victoria Hosp I emailed Dr Tyagi to let him know I had received such letter and that I was confused. I also reminded him I had requested a copy of my CTA on three previous occasions and had yet to receive it. His response was "I am confused as well because I received an email from the neuro-radiologists questioning why I was asking for an MRI scan when a CT angiogram had been normal (I have written to you in this regard). Let me make enquiries and I will revert to you"
It gets more confusing, later that day the post arrived and I did indeed have a letter from Dr T stating that my request for MRA had been refused due to having a normal CTA. I never requested an MRA in the first place and does Dr T actually know what he is doing, he is the only one who is able to request scans. I still had no answer to what had gone wrong with the letters and his promised "let me make enquiries and revert to you" has never happened. He never does what he states he will do. Yesterday on the 22nd June I sent another email stating I wish to make a subject access request and this was now my 5th time requesting a copy of my CTA scan that was carried out on the 19th March and had been requested on five occasions since 8th April. Dr T responded "I have requested for the CT angiogram images on a cd again this afternoon." Now this is the first time he has ever acknowledged that he has requested my scan, in previous emails he said he would do it for me and then nothing or he would disregard it in the other emails and only answer part of my queries. I also asked twice at my previous appointment with him on the 20th May if he could please get a copy of the CTA to me and he said he would.
I am getting closer to the end of a very long rope. What do I have to do to get doctor's to listen to me.
I HAVE A SOUND IN MY HEAD THAT SOUNDS LIKE A BABY'S ULTRASOUND, I HAVE A CONSTANT LEFT SIDED HEADACHE, I HAVE CONSTANT LEFT SIDE NECK AND EAR PRESSURE, I HAVE A BLUR IN MY LEFT EYE, I HAVE BALANCE ISSUES WHERE I GET PULLED TO THE LEFT SIDE, I AM EXHAUSTED BY LATE AFTERNOON, MY HEAD BECOMES EXTREMELY HEAVY, EVERYTHING I DO NEEDS TO BE DONE AT A SNAILS PACE.
Maybe I have severe psychological issues, maybe my mind is not as sound as I think it is, is my brain sending false signals, maybe I don't have a sound in my head, maybe I'm imagining it all? And maybe Elvis Presley is still alive and maybe all doctors who are covering each others backsides need to take responsibility for their failings in treating me fairly!
On Wednesday 3rd June I received a letter from a hospital in Glasgow called New Victoria Hospital stating they could not contact me by telephone to arrange my MRA and could I telephone them within one week or my appointment for the scan would be cancelled. I thought it strange as Dr Tyagi did say at my previous appointment that one of the three options was that he could arrange for all my scans to be repeated but he would see no need, I had chosen option one which was the drug infusion. Now I was thinking Dr T was on my side and he had gone out his way to arrange another scan. I telephoned the New Victoria Hospital over the following days and never got a response it was a constant answer phone, I left two voice mails with my telephone number, CHI number & date of birth. To be honest I was totally confused as I did not have any missed calls on any of my telephones from the standard 0800 6783393 Nhs number. I have given my telephone numbers to numerous medical staff who have asked for it over the last 2 and a half years so this baffled me. On the third day after not receiving a response from New Victoria Hosp I emailed Dr Tyagi to let him know I had received such letter and that I was confused. I also reminded him I had requested a copy of my CTA on three previous occasions and had yet to receive it. His response was "I am confused as well because I received an email from the neuro-radiologists questioning why I was asking for an MRI scan when a CT angiogram had been normal (I have written to you in this regard). Let me make enquiries and I will revert to you"
It gets more confusing, later that day the post arrived and I did indeed have a letter from Dr T stating that my request for MRA had been refused due to having a normal CTA. I never requested an MRA in the first place and does Dr T actually know what he is doing, he is the only one who is able to request scans. I still had no answer to what had gone wrong with the letters and his promised "let me make enquiries and revert to you" has never happened. He never does what he states he will do. Yesterday on the 22nd June I sent another email stating I wish to make a subject access request and this was now my 5th time requesting a copy of my CTA scan that was carried out on the 19th March and had been requested on five occasions since 8th April. Dr T responded "I have requested for the CT angiogram images on a cd again this afternoon." Now this is the first time he has ever acknowledged that he has requested my scan, in previous emails he said he would do it for me and then nothing or he would disregard it in the other emails and only answer part of my queries. I also asked twice at my previous appointment with him on the 20th May if he could please get a copy of the CTA to me and he said he would.
I am getting closer to the end of a very long rope. What do I have to do to get doctor's to listen to me.
I HAVE A SOUND IN MY HEAD THAT SOUNDS LIKE A BABY'S ULTRASOUND, I HAVE A CONSTANT LEFT SIDED HEADACHE, I HAVE CONSTANT LEFT SIDE NECK AND EAR PRESSURE, I HAVE A BLUR IN MY LEFT EYE, I HAVE BALANCE ISSUES WHERE I GET PULLED TO THE LEFT SIDE, I AM EXHAUSTED BY LATE AFTERNOON, MY HEAD BECOMES EXTREMELY HEAVY, EVERYTHING I DO NEEDS TO BE DONE AT A SNAILS PACE.
Maybe I have severe psychological issues, maybe my mind is not as sound as I think it is, is my brain sending false signals, maybe I don't have a sound in my head, maybe I'm imagining it all? And maybe Elvis Presley is still alive and maybe all doctors who are covering each others backsides need to take responsibility for their failings in treating me fairly!
Thursday, 29 January 2015
January 2015 It is not all in my head!!!
Still suffering and still searching for answers. I found a Neurointerventialist in New York by googling and reading reviews. The Whooshers.com website that I have visited often also had good things to say about him and many patients in New York and beyond have reached out to him and been treated successfully. Whooshers website is an interesting read, I found the web site by typing in wooshing and headache. I made contact with Dr Shapiro of Langone Medical Centre in December and sent my Mra/Mrv on disc by post on the 2nd January.
7th January I was expected to be at a Pain Clinic appointment for another Occipital Nerve injection but I forgot about it and I'm ashamed to say I forgot to cancel it. Dr Meiklejohn will think I am extremely rude. The truth is I am extremely exhausted and can't function properly and do not want to keep going to numerous appointments when doctors have no interest in helping me. I have lost all trust in them, I feel like I'm a burden to them and a hypochondriac.
On the 19th January my doctor surgery called to state a prescription had been written for me by the doctor and is waiting to be collected. I have yet to collect it as I am unsure about taking it when I still don't know what is wrong with me. I have waited since the 12th December for the new prescription and I'm sure I can wait a bit longer until the Neurointerventionalist has had a look at my scans, then if nothing is found I will take the new prescription.
TUESDAY 27TH JAN 2015 DIAGNOSIS
I emailed the Neurointerventionalist Dr Shapiro in New York for a timescale of when he is able to view my scans. In the evening he called, I wasn't going to answer the phone as it was showing "outside area" and normally it's marketing calls. Dr Shapiro had emailed me a few images and asked that I switch on my computer to talk through the images. The phone call lasted 45 minutes. Diagnosis; A possible fenestration of the vertebral artery or a Vertebral Artery Dissection (VAD) that has healed separating the artery into two separate channels. The fenestration would cause no clinical symptoms however a vertebral artery dissection would cause all of my symptoms. This all makes sense when I read the symptoms of a VAD and then compare to my own suffering. I believe when my wooshing baby ultrasound noise changed to a whirr is when the artery was healing to form the two channels. I was actually hearing turbulent blood flow!!! I knew there was something wrong, there had to be, I am not imagining all these symptoms. Dr Shapiro suggests a cerebral angiogram to confirm his diagnosis and a balloon occlusion test which would close off the artery to see if it stopped the sound in my head and if so a stent could be placed to help with my symptoms.
WEDNESDAY 28TH JANUARY
I walked and partly staggered 2.2miles to my GP surgery to see Dr Stevenson. I explained I had sent my scans to New York and showed him the images I had been sent from the Neurointerventionalist. The doctor showed a little uneasiness in his seat and stated he wasn't an expert on these type of things and to move forward he would need a report so that it could be sent back to the radiographer at the private hospital where I had the scan carried out. I explained I would not be paying for any treatment or appointments under private care but the doctor explained it had to be referred back there for another opinion. It was very much a pass the buck attitude. Dr St. gave me the GP surgeries email address to forward the report. I emailed the Neurointerventionalist and asked if he would kindly write a report of his findings for my doctor so they could act on it. Thankfully just two hours later he did and I forwarded it my doctor and to the Neurologist Dr Tyagi.
THURSDAY 29TH JANUARY 3.40pm
My GP surgery called to say the doctor had read the report and that an urgent referral had been arranged to Neurology. I asked if I would be contacted by letter or telephone which was confirmed that I would receive an appointment by letter.
It looks like my journey on the NHS roller-coaster is not over just yet.
All for now
Whooshing Wanderer
7th January I was expected to be at a Pain Clinic appointment for another Occipital Nerve injection but I forgot about it and I'm ashamed to say I forgot to cancel it. Dr Meiklejohn will think I am extremely rude. The truth is I am extremely exhausted and can't function properly and do not want to keep going to numerous appointments when doctors have no interest in helping me. I have lost all trust in them, I feel like I'm a burden to them and a hypochondriac.
On the 19th January my doctor surgery called to state a prescription had been written for me by the doctor and is waiting to be collected. I have yet to collect it as I am unsure about taking it when I still don't know what is wrong with me. I have waited since the 12th December for the new prescription and I'm sure I can wait a bit longer until the Neurointerventionalist has had a look at my scans, then if nothing is found I will take the new prescription.
TUESDAY 27TH JAN 2015 DIAGNOSIS
I emailed the Neurointerventionalist Dr Shapiro in New York for a timescale of when he is able to view my scans. In the evening he called, I wasn't going to answer the phone as it was showing "outside area" and normally it's marketing calls. Dr Shapiro had emailed me a few images and asked that I switch on my computer to talk through the images. The phone call lasted 45 minutes. Diagnosis; A possible fenestration of the vertebral artery or a Vertebral Artery Dissection (VAD) that has healed separating the artery into two separate channels. The fenestration would cause no clinical symptoms however a vertebral artery dissection would cause all of my symptoms. This all makes sense when I read the symptoms of a VAD and then compare to my own suffering. I believe when my wooshing baby ultrasound noise changed to a whirr is when the artery was healing to form the two channels. I was actually hearing turbulent blood flow!!! I knew there was something wrong, there had to be, I am not imagining all these symptoms. Dr Shapiro suggests a cerebral angiogram to confirm his diagnosis and a balloon occlusion test which would close off the artery to see if it stopped the sound in my head and if so a stent could be placed to help with my symptoms.
WEDNESDAY 28TH JANUARY
I walked and partly staggered 2.2miles to my GP surgery to see Dr Stevenson. I explained I had sent my scans to New York and showed him the images I had been sent from the Neurointerventionalist. The doctor showed a little uneasiness in his seat and stated he wasn't an expert on these type of things and to move forward he would need a report so that it could be sent back to the radiographer at the private hospital where I had the scan carried out. I explained I would not be paying for any treatment or appointments under private care but the doctor explained it had to be referred back there for another opinion. It was very much a pass the buck attitude. Dr St. gave me the GP surgeries email address to forward the report. I emailed the Neurointerventionalist and asked if he would kindly write a report of his findings for my doctor so they could act on it. Thankfully just two hours later he did and I forwarded it my doctor and to the Neurologist Dr Tyagi.
THURSDAY 29TH JANUARY 3.40pm
My GP surgery called to say the doctor had read the report and that an urgent referral had been arranged to Neurology. I asked if I would be contacted by letter or telephone which was confirmed that I would receive an appointment by letter.
It looks like my journey on the NHS roller-coaster is not over just yet.
All for now
Whooshing Wanderer
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