Hi im wondering what sort of things i should be bringing up with my dr at my first neuro appointment.
I have a diagnosis from my mri but i dont know what i need to talk about. I know i need to be referred on to the specialists south in england and need to try and go through a list of my symptoms. tho im now struggling to pin point them all, as its been going on so long im forgetting whats not normal. Is there anything that neuro can do for me in the mean time to help whilst i wait to be seen elsewhere.
It doesnt help that the medical ptsd is kicking in and im scared they are going to dismiss me as a migraine again. So im struggling to think straight without panic.
Iām sorry that your doctors have left you feeling so alone. For me, I kept my symptom list focused on the ones discussed most in the literature such as brain fog, headache, dizziness, tinnitus. I also printed out a few of the research articles that spoke to vascular Eagleās, the symptoms and treatment options. I also wrote a timeline of symptom evolution and a list of all of the treatments that I had already tried that had not worked. Best of luck.
Iām so sorry that youāve been left with symptoms for so long- the NHS waits are crazy right now
I agree with @Chrickychricky ; keep symptoms brief but focus on the well known ones. If itās the vascular symptoms which are affecting you most, I would mention things like head pressure, dizziness or off-balance feelings, headache, pulsatile tinnitus, visual disturbancesā¦If you have the more āclassicā/ well known ES symptoms like the feeling of something stuck in your throat, pain when swallowing or turning your head, you could mention this too as theyāre the symptoms doctors might have heard of the most. I would write these down if you donāt usually do this, to help you focus & not forget anything.
Mr Higgins & Mr Axon at Addenbrooks have published a paper about IJV compression, that might be a good one to print out and take with you; hopefully your Neuro will take seriously research by UK specialists. Hereās a link: Dr. Higgins & Dr. Axon : Spontaneous Intracranial Hypotension Complicated by Subdural Effusions Treated by Surgical Relief of Cranial Venous Outflow Obstruction - General / Research Papers - Living with Eagle
There are lots of other research papers about vascular ES in the research papers category, if you have time you could have a read & if any mention symptoms similar to yours maybe print off another one or twoā¦
Who were you hoping to be referred to? It might be a good idea to have a think about that before your appt so you could ask there and then. Maybe your Neuro might know someone in Scotland who does the surgery, unfortunately I think Mr Currie who is on our list was maybe promoted & doesnāt do surgery any more. A head and neck vascular surgeon might be able to help otherwise if your doctor is reluctant to send you down to England?
Have you got a partner, relative or a friend who could come with you to support you if you get anxious? Thereās also a section about advocating for yourself if you think you might be dismissed.
In the meantime anti-coagulant medications can help with vascular symptoms, you could ask about that. And if you have nerve pain symptoms the neuro could prescribe medications which help with that, like Amitriptyline or Gabapentin.
I hope that your appointment goes well, let us know how you get on
Thank you both. Ive written a few pages of notes in my note book for the appointment. Ill be going on my own to the appointment which is fine. Ill ask to record it. Im going to ask about refferal to dr hughes as ive already noticed mr currie only does private now. Which means theres no longer a specialist in scotland.
Iām sorry you donāt have more options closer to home, @Soph. I hope youāre able to easily get a referral to Mr. Hughes. Please do send a follow up post to let us know how your appointment goes.
I forgot to update on how the appointment went at the time. The general neurology appointment was basically wanting a list of my symptoms and wanted to take it to the neurology imaging team. Cos they hadnt even heard of eagles i gave them the list of uk specialists and asked for a referral etc. i knew i wouldnt hear back from them till september and thought they would give me a follow up appointment.
But im so frustrated. I got a letter in the post today and they have discharged me. Im fuming, Ive called their secretary to ask to been seen and for an explaination. Because the letter makes no sense. Image of the letter below.
Thatās crazy, to say thereās evidence of ES & jugular compression, stenosis around the C1 area, but they donāt understand how it relates to your symptoms! Especially when youāve been waiting a year! Iām so sorry that theyāve just discharged you without looking into it properly, just because they canāt see signs of IH on your MRI imagesā¦the fact that the report mentions collateral veins is also significant; if theyāre enlarged itās often a sign that theyāre having to take extra blood which isnāt getting through the jugular veins, we know from other membersā experiences that these can help for a while but then stop helping keep the blood flow enough, and also that they can be painful!
Iām not sure what the next step is for you, obviously depending on what the secretary comes back with, whether you can make an official complaint, and request to be referred to someone in England who does understand ES & jugular compression?
Hereās a link to the complaints process: Complain about an NHS service - mygov.scot
Is your GP at all helpful? Or the doctor youāre under at the Neuromuscular Clinic, have you been seeing him long, might he be supportive?
Sending you a hug, itās just rubbish
I completely concur with what @Jules said though I donāt know how the NHS works because Iām in the US, Iām glad thereās a way to file a complaint for inadequate medical care. At the very least, they could have referred you as you requested but it seems they forgot about that. I hope youāre able to get the referral you need ASAP so your care can progress, @Soph!
So sorry you are going through this @Soph and unfortunately itās not uncommon. They are correct in saying that the connection between the radiological findings and the symptoms are unclear. According to the research there are a majority of people who have IJVS at C1 but donāt have any symptoms for whatever reason. Thatās why itās important to have an IR angiogram with manometry. It appears that people who have IJVS and high pressure gradients across the stenosis are the ones who get symptom relief after decompression surgery. A doppler ultrasound using the proper protocol may prove the same thing but Iāve never had one of those so I canāt speak to it. Their understanding of the connection between IJVS (if indeed that is causing you to have elevated intracranial venous pressures) is flawed. I wish I could point you to the specific study Iām thinking of but it was an excellent discussion of the inconsistency of CSF pressures for people with intracranial venous congestion. Due to the nature of the illness CSF leaks can occur and then stop so if you did a LP you may get a high reading, a normal reading or a low reading at any given time and the symptom profile is not traditional. Itās very frustrating to have to teach the professionals about these thing. I donāt think they can make a statement about whether or not your CSF pressures are elevated without a LP or a IR angiogram with manometry (roughly speaking, if venous pressures are elevated then CSF pressures are elevated at least due to it being a closed system). Finally, I agree with their statement about the C1 compression not being suited for vascular intervention by which I assume they mean stenting. I believe the current understanding by those doctors who understand IJVS is that you canāt stent that area unless it has first been decompressed via surgery. I can really feel for your frustration as you are turning to these doctors in hopes for some help to feel better. It makes me think of the letter Dr. Nakaji wrote in support of my appeal with my insurance company where he stated that there are only a handful of doctors in North American who have the skill set to not only perform the decompression surgery but to accurately diagnose the problem in the first place. I hope you will find the strength to continue to advocate for yourself. There is more and more research in this area and I have found it helpful to bring appropriate articles to my appointments to help educated the doctors on what knowledge is emerging. Perhaps you can send some research articles along with your complaint? Dr. Higgins and Dr. Axon have published some excellent work that would support your request. Best of luck to you.
@Soph - If you havenāt watched this webinar, you should. It will provide you with some great information & perhaps some ammunition for a future doctors visit or your complaint/appeal.
I have a question about this issue. I had a neurovascular surgeon order a CTA with 3d reconstruction. One of the things it came back with is
āRight styloid process does exert mass effect on the right internal jugular vein with severe narrowing between the transverse process of
C1ā
Is this the same thing you are speaking about? Before the report the surgeon sent me to ENT but in my first appointment earlier in the year that ENT office said that Eagle Syndrome canāt cause strokes or problems with the jugular or carotid. I already knew this was patently false so I have no use for that ENT office. I am just trying to figure out what my next step is since I think that neurovascular surgeon is not going to be able to help me. I am thankful I donāt have to deal with the UK system. US system is hard enough.
@JugularEagle The IR angiogram with manometry would be the next step after CT venogram identifies stenosis. Everyone I consulted with wanted to see the angiogram results to assess whether or not the decompression surgery would be beneficial for me. But before you put yourself through that you might want to identify the neurosurgeon you hope to work with and see what they require. If you watch the webinar posted above, there is consensus among those doctors that the manometry be done without any sedation so itās no picnic. The surgeons I consulted with all seemed to believe that unless there is a significant pressure gradient across the stenosis the surgery wouldnāt help the symptoms. I think they are trying to sort out what are the criteria that make someone a good surgical candidate. Maybe you can get the same data with a Doppler ultrasound by someone who knows what they are doing but I canāt speak to that. I had my IR angiogram with Dr. Amans at UCSF, he is on that webinar Hope that helps.
@JugularEagle - Weāve had a few members whoāve had both IJV & ICA compression. It sounds like you might be in that category with the symptoms & scan results you have.
The angio/venogram is done w/ contrast but I believe itās iodine based. I had both a US to check blood flow velocities, & angio/venogram w/ manometry, but my angio/venogram was done while I was asleep. I asked Dr. Yakes specifically if he felt the results were different if done awake, & he said no. Heās done over 1000 of those procedures so I took that to be ābased on his experienceā which is substantial. Thus I assume there still isnāt a medical consensus re: doing them awake or asleep. Additionally, it was Dr. Hepworth who sent me to that particular vascular surgeon. Both the US & angio/venogram definitively showed IJV compression between styloid & C1 on the left but not on the right though my MRV showed it distinctly as being bilateral. My guess is that my right IJV is being compressed by soft tissue which is flexible enough that itās not creating the high pressure/restricted blood flow occurring on the left.
This research by Dr. Fargen discusses the awake versus sedated issue as does this one:
file:///C:/Users/chric/Downloads/Intracranial_Venous_Pressures_Manometry_for_Patien.pdf
It seems that you can catch elevated pressures while sedated but you might also miss them due to sedation. Itās a heck of a test to go through while awake but you have to weigh out the possibility of a false negative if you are sedated.
Thank you for the link @Chrickychricky. That one may have come on here before, but it was awhile ago. Iāll check our research papers list to see & if itās not there, @Jules can add it.
So ive spoken to the neuology secretary yesterday and got a call back this morning after they have spoken to the consultant.
They have agreed to do the referral to dr hughes at UCLH, it might take a while for the refferal the nhs england to be approved by the nhs scotland healthboard. But at least that gets the ball rolling. I dont know what the london waiting list length is like but i imagine ill be waiting a while.
The consultant will call me on thursday or friday to discuss what can be done for pain relief in the mean time and to speak about the fact i think CCI might be worsening things and that its something we need to investigate.
Is there any info on pain relief for vascular eagles?
Good theyāll look at referring you, I hope that goes wellā¦
Re pain relief for vascular symptoms, sleeping with your head propped up (so with a wedge pillow or lots of pillows) can help with head pressure, & I found a V-shaped orthopaedic/ nuring pillow helped take the pressure off the sides of my neck. Heat or ice can sometimes help, and some members have found that taking an ani-coagulant helps, like Brilinta - there have been some discussions about this sort of medication you could have a read up on using the search function. Nerve pain is often an issue- there are medications which are good for this like Gabapentin or Amitriptyline for example (theyāre anti-depressants or anti-convulsants which work well for nerve pain), if youāve not tried anything like that then the Neurologist should be able to help you with that.
One of our members @Lemontree , has had surgery with Thomas Milner in Scotland, although not sure where he is. It was intra-oral robotic surgery, sheās mentioned it in this discussion: A year post op - new symptoms - General - Living with Eagle
You could send her a private message by clicking on her avatar if you want to find out moreā¦
Thats all stuff im already doing/meds im already on ill need to spend some time tomorrow reading so more research papers to see if anything else is suggested like more localised injections etc. im sure Iāve read about that somewhere altho maybe that was more in relation to CCI rather than eagles.
I have read the post and messaged the person who had interoral surgery. A referral for ent had been refused last year and they said the mri i had done the showed the vascular eagles on both sides was normal. I presume they did the one surgery and decided never to touch another eagles patient. it sounds like they where very unsure about what they were doing when i read the posts on here. I wouldnt want to do the interoral route anyway from what ive read.
Fair enoughā¦some members have had lignocaine/ steroid injections for ES into the tonsil region, it can help with pain relief & easing inflammation, but it doesnāt always work. It should be done by an ENT, & can be done guided by an ultrasound, that could be something worth asking for?
Others have had prolotherapy injections for ES/ CCI, that might be what you were thinking of? Itās not particularly successful for ES thoughā¦
