As the title suggests I will explain what I have endured from NHS Ayrshire & Arran and Greater Glasgow & Clyde. My three year anniversary or suffering is more applicable, has been and gone and I'm still in limbo. There has been no urgency to investigate and find a diagnosis.
The first thing that is apparent to me is cost cutting, it took 7 consultations with GP's before I was eventually offered and referred to an ENT consultant at the hospital, at this stage nearly 5 months had passed. I moved to a new GP practice because a doctor said they would no longer investigate my symptoms and to accept that I had some sort of soft tissue damage. At my new and still current GP Practice I was refused a referral to a Neurologist as the new doctor seen no need to refer me based on a previous normal scan. I was forced to go private therefore saving them their budget.
Secondly I have found that doctors including ENT Consultants do not have any knowledge of pulsatile tinnitus nor have they taken my combined symptoms including headache seriously. Many doctors tried to separate my symptoms even though I repeatedly told them everything happened around the same time. Not one doctor has connected my pulsatile tinnitus, headache, neck and ear pain.
Thirdly not one doctor has gone out their way to try and make investigations on what could be causing my symptoms. I have done all the investigating myself by arranging a private MRA scan and sending them to New York. When I provided doctors with a diagnosis none of them were quick to act, I had to constantly chase my neurologist up with constant emails and calling my GP practice. I gave doctor's print outs of my symptoms to make it easier for them so that they had a list in front of them. My neurologist made several mistakes and he is yet to admit them, not sending me letters of results, mixing me up with another patient, sending me for a scan questioning a carotid dissection instead of vertebral dissection.
I should also mention the lack of notes that GP's have recorded about my symptoms, it is very concerning that GP's do not note everything that you state to them and in my case many did not type or note anything until I was leaving the room. On another small issue, I have found Doctors very evasive when I have asked questions so much so I believe they must be sitting in the same classrooms as high class lawyers. Not one doctor will give me a clear answer on what is showing on my scans. It ranges from "nothing" "movement in the scanner" "no abnormality found" "the artery is normal and patent" "unsure of the abnormalities within your scan"
Going forward after presenting Dr Shapiro's report from New York, doctors never properly acted on it. Dr Shapiro's preferred method was an angiogram and also a balloon occlusion test which would confirm the diagnosis and also allow time to fix the artery at the same time. My neurologist decided on a CT Angiogram and not the conventional Cerebral Angiogram which is gold standard in cases such as mine. Of course doctors were then free to report my CT Angiogram as normal. They were never going to own up that my MRA and CTA had shown the double lumen all along and that they had missed it. Except it does show a clear double barrel lumen at the atlas loop of the vertebral (V3) When I questioned Dr Tyagi he said he had to go on what the neuroradiologist reported.
When my husband and I met with Dr T in May he said that normal variants were not openly reported on. I asked if a normal variant or fenestration could be causing my symptoms he said that there was nothing showing and my artery was completely normal.
After finally receiving my CTA in July and carefully viewing it I could see that the artery was not normal and within the report it stated a Carotid Dissection was being questioned. I sent two emails to Dr T asking why he had questioned the wrong artery but he has never responded to that question. I then obtained my GP notes and Dr T wrote to my GP stating my Carotid was fine with no evidence of dissection. Now what really alarms me on this is that my GP had the report from Dr Shapiro and it only ever mentions the Vertebral Artery throughout the report. Why did my GP not pick up on this?
Thanks for reading
Whirring Wanderer
Thursday, 29 October 2015
Monday, 19 October 2015
NHS do not investigate symptoms! October 2015
On the 12th October I telephoned my GP surgery due to five weeks having passed since my hospital stay and scan. The receptionist stated there were no results from the scan but a letter had arrived on the 7th October for my GP and she wasn't at liberty to tell me what was written in the letter however I could speak with the doctor. I said I would contact Dr Tyagi myself.
I emailed Dr T later that day and asked if there were any results of my scan and could he update about my referral to London . I got a basic reply stating he had already written to my GP with a discharge summary and my scan was normal, he also said he would check the progress of the funding request. Yet again I never received a letter from Dr T informing me of my results, I had to call my GP surgery and then email him myself. How incompetent that a Neurologist will not communicate with a patient, all I'm looking for is to be copied in on the letters he is sending to my GP about my care. The basic lack of communication from him is awful not forgetting the mistakes he's made with mixing me up with another patient, sending me for a CT Angio to query a Carotid Artery Dissection instead of concentrating on the Vertebral Artery. He has been so evasive and not answered my question on two occasions on how he questioned the wrong artery.
I am becoming extremely bitter in the last few months with life in general. I honestly don't see a future for myself going forward with these debilitating symptoms. No one believes my symptoms, no one is interested in my symptoms and no one wants to investigate my symptoms. It is coming up to three years in the next few days since I decorated my living room, a living room I have not had the chance to relax and enjoy due to the on going headache and sound in my head. I am mentally exhausted trying to fight for a diagnosis and treatment. I need to be free from these symptoms. I feel so stupid I don't want to go back to my GP surgery. I am made to feel that I am wrong about what is going on within my own body. I do have something going on in my head, the headache,Pulsatile Tinnitus and neck pain are symptoms of an underlying cause. I do not have a mental health issue and I do not suffer from anxiety but I feel as if I am being judged that way.
Whirring Wanderer
I emailed Dr T later that day and asked if there were any results of my scan and could he update about my referral to London . I got a basic reply stating he had already written to my GP with a discharge summary and my scan was normal, he also said he would check the progress of the funding request. Yet again I never received a letter from Dr T informing me of my results, I had to call my GP surgery and then email him myself. How incompetent that a Neurologist will not communicate with a patient, all I'm looking for is to be copied in on the letters he is sending to my GP about my care. The basic lack of communication from him is awful not forgetting the mistakes he's made with mixing me up with another patient, sending me for a CT Angio to query a Carotid Artery Dissection instead of concentrating on the Vertebral Artery. He has been so evasive and not answered my question on two occasions on how he questioned the wrong artery.
I am becoming extremely bitter in the last few months with life in general. I honestly don't see a future for myself going forward with these debilitating symptoms. No one believes my symptoms, no one is interested in my symptoms and no one wants to investigate my symptoms. It is coming up to three years in the next few days since I decorated my living room, a living room I have not had the chance to relax and enjoy due to the on going headache and sound in my head. I am mentally exhausted trying to fight for a diagnosis and treatment. I need to be free from these symptoms. I feel so stupid I don't want to go back to my GP surgery. I am made to feel that I am wrong about what is going on within my own body. I do have something going on in my head, the headache,Pulsatile Tinnitus and neck pain are symptoms of an underlying cause. I do not have a mental health issue and I do not suffer from anxiety but I feel as if I am being judged that way.
Whirring Wanderer
Tuesday, 22 September 2015
September 2015 update
For those of you who are still following and have not keeled over yet....................................................
I still don't have any positive news. I went into hospital on the 31st August to the 4th September and had the Dihydroergotamine infusion over four days. I didn't tolerate the first two infusions very well and felt weak with no energy and the pressure in my head heightened as did the headache, I also developed a heavy feeling in the middle of my chest, overall I felt awful. I eventually told a nurse that I was having pins and needles over the left of my head which I have experienced on many occasions but this was far worse therefore it was decided that I have the infusion over three hours instead of the usual one hour. I explained to the nurse I was slightly concerned as I had obtained an opinion outwith the Nhs and a Vertebral Artery Dissection had been put forward as a possible cause of my on going symptoms and I felt that the drug infusion was constricting the artery hence more intense pins and needles. The nurse went away and came back stating it was in my notes that I definitely did not have a dissection at any point as Professor Keith Muir had a note in my file that he had read my MRA scan and there was no evidence of dissection. (I wonder what he thought the strange bulge in my vertebral artery is) My immediate thought is that he was asked to look for a carotid abnormality or dissection.
On day three I spoke with my neurologist Dr Tyagi who still hasn't answered my question on why he questioned the carotid artery being dissected instead of the vertebral. He suggested that he could apply for funding and send me to the National Hospital for Neurology & Neurosurgery in London to which I agreed. He also requested another ECG because of the heavy feeling in my chest.
On day four I had a visit from a Dr George Gorrie a neurologist who Dr Tyagi had asked to come and speak with me regarding my symptoms. He let me explain my symptoms and asked a few questions. He said he had seen my scans and that they were normal. He questioned the doctor I had sent my scans to and said he wasn't just aware at how widely available these internet doctors were, who take money from people, I stopped him at that point to tell him it was a reputable doctor I sent my scans to that I paid a minimal fee and the reasons I sought answers was because I had suffered for nearly three years and no one was interested in helping me find a cause for my symptoms, he went on to say that our Nhs is a reputable free service that don't take money from people. I explained that the two other doctors I had opinions from did not charge me any money yet came up with the same diagnosis as Dr Shapiro in NY, his response was to say "interesting" and placed his hands on top of his head looking slightly bewildered. He had no notes with him and didn't take any he also hadn't read Dr Shapiro's report. He asked a few questions about family history and I explained my maternal line only live to mid 60's and its arterial issues they died from including brain haemorrhage and heart attack. He said my maternal grandmother probably fried her food!!! He asked me to lie flat until he had finished his ward round. On his return he came back with Dr Tyagi and two nurses, one of which was taking notes. Dr Gorrie asked how did I feel and I explained the headache was the same but the pressure deep within my neck was worse because my neck was slightly extended being flat on the bed so he decided to sit me up. Dr Tyagi suggested having another Mri scan but this time with contrast as they wanted to check the lining of my brain to rule out a condition and to rule out small tumours like a paraganglioma. Dr Gorrie then decided what hit the nail on the head for him that I did not have a carotid artery dissection was because the area in question of where my headache was is not consistent with a carotid tear. I honestly could not believe I was hearing the Carotid word again!!! I gave a nervous laugh and firmly said that's because its a vertebral dissection. He stared and said "oh ok". I could see Dr Tyagi slightly shifting from side to side and nodding to what I said but gave no corrections to Dr Gorrie. Dr Tyagi said he would arrange the scan and they then left the room and chatted outside in the corridor.
Later in the afternoon around 4pm Dr Tracey Baird visited me, a very pleasant woman. I explained my symptoms on how and when they started and I also gave a bit more of the background on how I came to be given the diagnosis by Dr Shapiro as she was taking notes where as Dr Gorrie didn't. I told her all about the sound in my head and how I'd related it to Pulsatile Tinnitus by searching the internet, I gave her a website to look at. I explained how I was able to find out Dr Shapiro's details to send my scans to. Dr Baird's response was that "any doctor can have a glossy website and take all your money and we need to be aware of these sort of things that's why we have the Nhs" I explained Dr Shapiro didn't just have a glossy website but was also a very well known Neurointerventionalist in New York and was from the Langone medical centre http://www.med.nyu.edu/ Dr Baird went on to say that my question of whether I had suffered a dissection or not could never be answered. I explained that Dr Shapiro could tell by doing a cerebral angiogram and a balloon test occlusion on the artery, it would show the false side of the lumen and if the pulsing noise stopped with the balloon test then it would confirm the diagnosis and the artery could be fixed at the same time eliminating the pulsatile tinnitus hopefully reducing my headaches and other symptoms. Dr Baird however told me that under no circumstances would that be carried out here in Scotland and not to trust the other doctor as what he was proposing to do I was at high risk of death. I said it was highly unlikely considering Dr Shapiro carried out these operations every day and that as the Nhs were not helping me I might have no choice but to go America and have the treatment there as no one can read my scans properly. Dr Baird continued to say she too had read my scans and that all arteries were normal. I asked her which artery and she looked puzzled, I said I had a question were you asked to look at my scans in regards to a Carotid dissection and she said YES! OH MY FLUFFING GOODNESS SAKES I couldn't believe it, yet again the wrong artery! I asked that she correct what was written on my notes because I believed Dr Tyagi had made a mistake and had yet to correct it within my file and clearly he was asking his colleagues to look at the wrong artery. Dr Baird wrote down the information I was telling her and I asked had she read Dr Shapiro's report to which she looked through the file she had on her knee which contained a few sheets of A4 paper and then said no she hadn't read it or seen it!!! At this point I wanted to say fuck off get out my room I'm going home, I trust none of you fuckers! Of course I never and instead I got my phone out and showed Dr Baird images from my MRA & CTA and asked if she thought my images were normal but she wouldn't answer, only repeating that she would need to go back and re-look them and if anything it would be another artery or vein sitting on top of one another showing on my images. When I pointed out a marked image sent by Dr Shapiro and asked what she thought the double lumen was she said to her it looked as if another artery was in the way and was sitting on top or crossing over it, I said it was showing on numerous images and showing both on my MRA & CTA, two scans can not be wrong on what its showing, again she said she would re-look my scans but wouldn't admit my images were abnormal, she maintained they were normal. I asked a few further questions on why I wasn't able to exercise due to the headache and sound becoming louder in my head yet I never got a constructive answer, I put it to Dr Baird that if I had nothing wrong then I could go ahead and do overhead painting again and she said "well no I wouldn't do that when you have an on going condition" she went on to say its like when anyone has a health condition they need to adapt for example people diagnosed with diabetes have to take steps to adapt to their health. The issue I have with that statement is that I don't have a diagnosed condition, I have a huge list of symptoms that no one is interested in investigating and getting to the bottom of them. Pulsatile Tinnitus is not a condition it is an underlying symptom of a vascular condition and needs a full on medical work up to see what is causing it. Dr Baird left and I sat for an hour going through my scans on my phone, there was no other artery or vein crossing over my vertebral from any angle!
On Friday 4th September before I left the hospital I was taken for an MRI with contrast, as of today 22nd Sept I am still waiting on the results and/or a follow up appointment to discuss the next steps.
Thanks for reading
Whirring Wanderer
I still don't have any positive news. I went into hospital on the 31st August to the 4th September and had the Dihydroergotamine infusion over four days. I didn't tolerate the first two infusions very well and felt weak with no energy and the pressure in my head heightened as did the headache, I also developed a heavy feeling in the middle of my chest, overall I felt awful. I eventually told a nurse that I was having pins and needles over the left of my head which I have experienced on many occasions but this was far worse therefore it was decided that I have the infusion over three hours instead of the usual one hour. I explained to the nurse I was slightly concerned as I had obtained an opinion outwith the Nhs and a Vertebral Artery Dissection had been put forward as a possible cause of my on going symptoms and I felt that the drug infusion was constricting the artery hence more intense pins and needles. The nurse went away and came back stating it was in my notes that I definitely did not have a dissection at any point as Professor Keith Muir had a note in my file that he had read my MRA scan and there was no evidence of dissection. (I wonder what he thought the strange bulge in my vertebral artery is) My immediate thought is that he was asked to look for a carotid abnormality or dissection.
On day three I spoke with my neurologist Dr Tyagi who still hasn't answered my question on why he questioned the carotid artery being dissected instead of the vertebral. He suggested that he could apply for funding and send me to the National Hospital for Neurology & Neurosurgery in London to which I agreed. He also requested another ECG because of the heavy feeling in my chest.
On day four I had a visit from a Dr George Gorrie a neurologist who Dr Tyagi had asked to come and speak with me regarding my symptoms. He let me explain my symptoms and asked a few questions. He said he had seen my scans and that they were normal. He questioned the doctor I had sent my scans to and said he wasn't just aware at how widely available these internet doctors were, who take money from people, I stopped him at that point to tell him it was a reputable doctor I sent my scans to that I paid a minimal fee and the reasons I sought answers was because I had suffered for nearly three years and no one was interested in helping me find a cause for my symptoms, he went on to say that our Nhs is a reputable free service that don't take money from people. I explained that the two other doctors I had opinions from did not charge me any money yet came up with the same diagnosis as Dr Shapiro in NY, his response was to say "interesting" and placed his hands on top of his head looking slightly bewildered. He had no notes with him and didn't take any he also hadn't read Dr Shapiro's report. He asked a few questions about family history and I explained my maternal line only live to mid 60's and its arterial issues they died from including brain haemorrhage and heart attack. He said my maternal grandmother probably fried her food!!! He asked me to lie flat until he had finished his ward round. On his return he came back with Dr Tyagi and two nurses, one of which was taking notes. Dr Gorrie asked how did I feel and I explained the headache was the same but the pressure deep within my neck was worse because my neck was slightly extended being flat on the bed so he decided to sit me up. Dr Tyagi suggested having another Mri scan but this time with contrast as they wanted to check the lining of my brain to rule out a condition and to rule out small tumours like a paraganglioma. Dr Gorrie then decided what hit the nail on the head for him that I did not have a carotid artery dissection was because the area in question of where my headache was is not consistent with a carotid tear. I honestly could not believe I was hearing the Carotid word again!!! I gave a nervous laugh and firmly said that's because its a vertebral dissection. He stared and said "oh ok". I could see Dr Tyagi slightly shifting from side to side and nodding to what I said but gave no corrections to Dr Gorrie. Dr Tyagi said he would arrange the scan and they then left the room and chatted outside in the corridor.
Later in the afternoon around 4pm Dr Tracey Baird visited me, a very pleasant woman. I explained my symptoms on how and when they started and I also gave a bit more of the background on how I came to be given the diagnosis by Dr Shapiro as she was taking notes where as Dr Gorrie didn't. I told her all about the sound in my head and how I'd related it to Pulsatile Tinnitus by searching the internet, I gave her a website to look at. I explained how I was able to find out Dr Shapiro's details to send my scans to. Dr Baird's response was that "any doctor can have a glossy website and take all your money and we need to be aware of these sort of things that's why we have the Nhs" I explained Dr Shapiro didn't just have a glossy website but was also a very well known Neurointerventionalist in New York and was from the Langone medical centre http://www.med.nyu.edu/ Dr Baird went on to say that my question of whether I had suffered a dissection or not could never be answered. I explained that Dr Shapiro could tell by doing a cerebral angiogram and a balloon test occlusion on the artery, it would show the false side of the lumen and if the pulsing noise stopped with the balloon test then it would confirm the diagnosis and the artery could be fixed at the same time eliminating the pulsatile tinnitus hopefully reducing my headaches and other symptoms. Dr Baird however told me that under no circumstances would that be carried out here in Scotland and not to trust the other doctor as what he was proposing to do I was at high risk of death. I said it was highly unlikely considering Dr Shapiro carried out these operations every day and that as the Nhs were not helping me I might have no choice but to go America and have the treatment there as no one can read my scans properly. Dr Baird continued to say she too had read my scans and that all arteries were normal. I asked her which artery and she looked puzzled, I said I had a question were you asked to look at my scans in regards to a Carotid dissection and she said YES! OH MY FLUFFING GOODNESS SAKES I couldn't believe it, yet again the wrong artery! I asked that she correct what was written on my notes because I believed Dr Tyagi had made a mistake and had yet to correct it within my file and clearly he was asking his colleagues to look at the wrong artery. Dr Baird wrote down the information I was telling her and I asked had she read Dr Shapiro's report to which she looked through the file she had on her knee which contained a few sheets of A4 paper and then said no she hadn't read it or seen it!!! At this point I wanted to say fuck off get out my room I'm going home, I trust none of you fuckers! Of course I never and instead I got my phone out and showed Dr Baird images from my MRA & CTA and asked if she thought my images were normal but she wouldn't answer, only repeating that she would need to go back and re-look them and if anything it would be another artery or vein sitting on top of one another showing on my images. When I pointed out a marked image sent by Dr Shapiro and asked what she thought the double lumen was she said to her it looked as if another artery was in the way and was sitting on top or crossing over it, I said it was showing on numerous images and showing both on my MRA & CTA, two scans can not be wrong on what its showing, again she said she would re-look my scans but wouldn't admit my images were abnormal, she maintained they were normal. I asked a few further questions on why I wasn't able to exercise due to the headache and sound becoming louder in my head yet I never got a constructive answer, I put it to Dr Baird that if I had nothing wrong then I could go ahead and do overhead painting again and she said "well no I wouldn't do that when you have an on going condition" she went on to say its like when anyone has a health condition they need to adapt for example people diagnosed with diabetes have to take steps to adapt to their health. The issue I have with that statement is that I don't have a diagnosed condition, I have a huge list of symptoms that no one is interested in investigating and getting to the bottom of them. Pulsatile Tinnitus is not a condition it is an underlying symptom of a vascular condition and needs a full on medical work up to see what is causing it. Dr Baird left and I sat for an hour going through my scans on my phone, there was no other artery or vein crossing over my vertebral from any angle!
On Friday 4th September before I left the hospital I was taken for an MRI with contrast, as of today 22nd Sept I am still waiting on the results and/or a follow up appointment to discuss the next steps.
Thanks for reading
Whirring Wanderer
Saturday, 29 August 2015
August 2015
I decided to email my neurologist Dr Tyagi on 27th July explaining that my CTA is showing an abnormality within my vertebral and that the Neuroradiologist has not read it properly. I also questioned why the Carotid was mentioned in the report and not the Vertebral. I explained my main concern is that of the drug infusion to be carried out on 31st August because it constricts the blood vessels and I am unsure about it considering I can see a double lumen within the artery. Dr T ignored my questions regarding the scans showing an abnormality and never answered why he questioned a Carotid dissection. He responded on the 3rd August stating the drug infusion is for the headache only and he would seek a further opinion from a colleague of his who has an interest in stroke. My response wasn't too pleasant and I asked that he get back to me soon so that I could make an informed decision on whether to go ahead with the drug infusion. As of today just three days before my hospital stay he has failed to respond to my questions. I have decided to go ahead on Monday 31st August with my hospital stay and have the drug infusion.
Whirring Wanderer
Whirring Wanderer
Monday, 27 July 2015
CTA showing double lumen
This image taken from my CT Angiogram shows two channels of the left vertebral artery. In the medical world it is very rare for a doctor to come across this finding. The red arrow points to the left vertebral artery where two bump like images with a separation line between them is seen. It is known as a double barrel lumen, double lumen or false lumen. If you compare to the opposite side which is actually the right vertebral you can see this artery is patent and normal with no separation of the artery.
Whirring Wanderer
Friday, 24 July 2015
July 2015 Update
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
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
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!
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