just writing this to give a brief update. I've been suffering with bad PT since 2019 and it's impacted every part of my life. Sorry for the length but I think it's important to be detailed as not everyone has the same symptoms.
I've had to give up self-employment despite putting my life savings into setting up a career in running my own business and despite applying for jobs since it's been very hard - concentration and brain fog affect me greatly and I know that if even if I do manage to get a job I'm going to struggle to do any work and work full time. Like others with T and PT my sleep is vastly affected and the only way I've managed to cope is watching programmes on a tablet late at night until I fall asleep but even then PT wakes me up and is often hellish for hours. I'm a light sleeper so playing any sound as a mask tends to only keep me awake and I've not found any sound that comes close to the tone on my PT.
I managed to see Dr Axon at Cambridge Addenbrookes Hospital yesterday for the results of a CT scan I had approx 4 months ago. I did see his colleague prior to that initially and I think I only managed to see Dr Axon as I requested to see him in a letter I sent to him along with a PT survey they sent me - I basically detailed everything, including current and past symptoms in case anything helped - although I'm sure they only bases treatments on scan results.
This is the 3rd hospital I've been to. My local hospital in Lincoln clearly didn't know about PT and I said it was in time with my heart beat and nothing was said. After a standard MRI showed nothing and a hearing test came up normal they just said the usual 'live with it'. I tried to just put up with it, not concentrate on the noise and hoped my brain would get used to the sound and it would reduce but that never happened.
After a year I requested to see a different hospital (I found out about Dr Axon online and asked to be referred to Cambridge Addenbrookes) but instead was sent to Sheffield who were very thorough and did a hearing test (which showed near perfect hearing), MRIs with contrast didn't show anything, ultrasound doppler on my neck didn't show anything, x-rayed my teeth and recommended I get a tooth extracted which I eventually did but again no change.
After trying to put up with it I again requested to be referred to Dr Axon through the NHS via my GP after contacting his NHS secretary prior and got referred.
I had the CT scan with contrast at Cambridge, mainly because I mentioned to one of Dr Axon's team members that I have bad brain fog and pressure in my ears occasionally. When I had the scan I didn't feel any pressure in my head or ears at that time and Dr Axon confirmed scan didn't show any pressure. Annoyingly my symptoms seem to change and I can never work out why - sometimes pressure, pain in and near the ear (above and below), vibrations felt in the ear or outer lobe, ear being sore and feeling full, on very rare occasions it had temporarily stopped for a short amount of time before returning - although this had been even less common the last year or so. Certain sounds seem to set it off or make it louder including lawn movers, planes, propane bird scarers. It's worse (louder) at night, lying down, waking up with it in the morning. Music sometimes helps but sometimes it's still audible and I can feel the vibrations of PT still. It has been worse with exercise in the past. I used to be able to stop it briefly by pressing on my neck but haven't been able to do this for a while. It's details like this where mine now differs from other people.
Also pretty much every time I'm at the hospital I can't hear the PT despite it being badly present the morning and evening before - I think this is mainly due to the road noise when travelling longish distances and background noise at hospitals, including air-con and MRI machines being loud etc. It normally takes a few minutes to then hear the PT. When using my laptop the sound of it and the additional fan keeping it cool helps make the PT less obvious.
The one constant is that the sound is low and in time with my heart beat. However, mine does not sound like a whoosh. There is a international facebook group called whooshers unite (which I suggest people join) and I've never understood why people describe it as a whoosh - Dr Axon demonstrated it vocally and if drawn as a sound wave it would have a raise, crest and drop off, but it's not what I hear - mine has almost no drop-off. It's more like a deep drone (which can be louder at times). (see pic - I'm no expert in sound waves but it's the only way I can think of describing it).
***The results were sent to me months prior to the appointment and suggested narrowing on the right internal jugular vein and the left side is narrow with further narrowing towards the skull base. Dominance of blood flow is one sided (my right & PT side) - most people have a dominant side so this is normal. I was hoping treatment would just be a stent (despite stents being stopped currently as they are under review) or something more minor since due to the narrowing, however that is not the case.
***The main important thing the CT Scans show is bone thinning (Sigmoid Sinus Dehiscence), also my vein is larger at some point - this may explain why my hearing organs can hear the sound of my heart beat. Suggested treatment is surgery to remove some bone where my skull is thicker to resurface the dehiscence (add bone to the thinner bone) to help block the sound. I said I was prepared to try anything. As usual the waiting list under NHS will be a long time (no idea how long) but at least it's something to look forward to. He said it may not work but it may reduce the sound, also it may be worse for a bit straight after and there is risk of having bleeds.
He did say they don't know why the bone is thinner and whether or not it has always been this way.
It feels good to finally have a diagnosis and shows that unfortunately you do have to keep asking for referrals despite the long wait times to get an answer. Hopefully this will be of use to someone.
PT Whoosh versus my deep droning sound:
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Destructor
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Hi Destructor, it sounds like you're getting somewhere at long last! In my experience (as a patient, not a medic) Mr Axon is an excellent surgeon. Again in my experience, when there is narrowing of an internal jugular vein (IJV) it can result in some very weird head symptoms, including droning tinnitus, especially if trauma aggravates the condition.
I found it interesting that Mr Axon said that a contrasted CT scan didn't show pressure. My understanding, from experience as a patient and not medical training (I don't have any), is that intracranial pressure requires a catheter venoplasty with pressure meter to measure levels rather than a CT scan. It's an invasive procedure. Perhaps Mr Axon was assessing a different kind of pressure, but brain fog combined with a sense of pressure around the ears can point to idiopathic intracranial hypertension (IIH). Blocked IJVs definitely point to IIH. I would think it odd if this hasn't been mentioned to you, if indeed it was not. If it was not, it might be worth asking Mr Axon specifically about the likelihood of IIH, especially if you have an unusually runny nose.
In case you have not been advised yet, I am happy to share with you some information that I have concerning IJV stents. I discovered that an IJV stent (not the same as a cardiac arterial stent) significantly and permanently restricts access to MRI scans to about 15 minutes max. This can affect any future and unrelated investigation that might be necessary e.g. a cardiac scan. An IJV stent can result in the need for medication with anti-coagulants for a lengthy period of time, perhaps permanently if the stent begins to close up. Stents have a tendency to re-stenosis (close up owing to scar tissue) requiring revision surgery and, unlike arterial stents, an IJV placement can sometimes generate localized discomfort.
Certain types of ENT/skull surgery through the neck can result in long-term neck/shoulder muscle weakness (wasting) and/or chronic pain. As long as key nerves are not damaged, pain can be mitigated by targeted exercise. I think muscle wastage is more serious and means that a key nerve has been seriously compromised. This kind of surgery is difficult and delicate, but I think Mr Axon is probably the no.1 choice to undertake it.
When faced with intolerable symptoms, we sometimes have to weigh risks and make difficult decisions, preferably on the basis of sound and fully comprehensive information. Good luck with the outcome of whatever decision you make!
Thanks bridgeit, I know others on the whooshers facebook page have said that there is currently a review taking place on both stents and catheter venoplasty (CVs). At the moment I don't feel any pressure in the ear and I suppose it's been a while since I had it and the dizziness. For some reason the PT has been less aggravating the past 2 days than usual. I'm hoping that Dr Axon will go into a bit more detail about the surgery either nearer the time or when he writes to me - he said during my visit that he'd write to me so that I didn't need to take notes. Someone on facebook had the surgery recently and said they didn't realise it was going to be such an ordeal with recovery a month on still having issues, I was told 2 weeks was usual recovery time, I'm not sure if they had exactly the same symptoms as me though. I know some people have total gaps/holes in the skull as opposed to just thinning.
I do also have shoulder injuries at the moment and fibromyalgia chronic pains elsewhere so it's good to be aware of any further possible chronic pain issues that may result from the procedure so thanks for that info.
I mentioned on a previous post how after swimming in the sea the pressure in my ears and PT was relieved - after this my nose was running non-stop for a bit. I guessed at the time it had the same effect of nasal sprays so this pressure could well have been different to that found with IIH.
Can I ask if you had this type surgery and did you suffer from IIH - I think I'll write to him to double check about the pressure like you suggest.
Hi Destructor. The surgery I had was chiefly a styloidectomy (resecting of the styloid process) to free up a crushed internal jugular vein. Prior to that, I had a range of peculiar symptoms, droning tinnitus included. I was eventually diagnosed with IIH and a nasal CSF leak, the latter providing a strong indication that trauma combined with a squashed IJV were responsible for raising cranial pressures and causing a nasal leak as a kind of release valve reaction when they got too high. When fluid leaked from my nose the symptoms seemed to ease, which was another clue pointing towards IIH. Most of my symptoms were positional, i.e., worse when upright, especially seated.
Mr Axon did an excellent styloidectomy/resection. The cranial outflow investigations that prompted it along with the stent were carried out by an interventional neuroradiologist who works closely with Mr Axon.
The procedures reduced intracranial pressure as well as stopping the CSF leak (eventually), but they brought their own problems as per the caveats I received beforehand, by way of chronic neck discomfort and some re-stenosis which has yet to be fully assessed. I have some residual pre-surgery symptoms as well, including droning tinnitus that flares when the fancy takes it.
My experience suggests to me that surgery to fix symptoms thought to be associated with cranial outflow and/or resonance issues might work. Equally, it might not and, if it does not work or is only partially successful, there may be significant additional symptoms to deal with as well as those unresolved. It is difficult prior to surgery to imagine the full impact of additional symptoms, or how we might feel about that outcome 2- or 3-years post-surgery.
My thinking is that thorough investigation, careful assessment and full disclosure of all risks must take place before any decision about surgery is made by the patient. Elective surgery of this type really does require extensive consideration of all pros and cons in a calm frame of mind rather than while frantic with worry about what's gone wrong with our system and desperate for any fix, however left field it might seem. When surgeons say a procedure might not work as hoped for, they really do mean it. My advice is to obtain answers to all questions you can think of.
I hope this is informative rather than being totally off-putting!
Finally, as a result of this particular experience, I have formed the opinion that the last thing anybody needs to hear from a consultant is that their case is "interesting". 🤔
Thanks bridgeit that actually helps a lot, especially since I some people on the fb group have mentioned problems after surgery. I've received a letter from Dr Axon basically updating my GP with what he discussed at the appointment. I'm quite glad that the wait will be a long time so I can ask the necessary questions and fully assess the risks.
The letter states:
CT venography demonstrates major right venous outflow with a prominent posterior condylar vein and some minor narrowing of the internal jugular vein over the transverse process of the C1 vertebrae. There is also sigmoid sinus dehiscence into a well aerated temporal bone.
He has states it's possible it's somatosensory pulsatile tinnitus, but he think it's venous pulsatile tinnitus.
We've discussed cortical mastoidectomy, sigmoid sinus resurfacing to cover the sigmoid sinus dehiscence. In my experience good outcome is high but there is a risk of persistent hearing loss and high frequency tinnitus which might not help his pulsatile tinnitus.
I don't remember him stating about permanent hearing loss, I thought he said some hearing loss. That is worrying somewhat especially since my hearing is pretty much perfect at the moment.
The following article is quite interesting: (not that it's what will necessarily be happening with me) but it will give me some idea what to ask about the surgery as well as possible after effects.
You're very welcome Destructor. It is interesting that a significant risk, persistent hearing loss, is not something you recall being raised at the discussion you had with Mr Axon. I suspect that surgeons who are very familiar with complex procedures and the very many risks therein sometimes, and inadvertently, assume a level of understanding from the patient that isn't present, so important messages are sometimes omitted in discussion, resulting in a risk of decisions being made on partial rather than full information.
I'm hoping you discussed the risks and outcome of damage to nerves that are situated in the area of the mastoid process, for example, facial nerve paralysis, a (permanent) change in taste and a different kind of tinnitus emerging?
You are very wise to give this kind of surgery serious consideration prior to making any decision. I think you should take as much time as you need to consider as much evidence as you can procure from whatever source (I thought the study you referenced was interesting). Keep asking questions until you think you've gotten the full picture. Explaining risk to a patient should never be a 'tick in the box' exercise for any surgeon. It should be a fully interactive and on-going process until the patient has signed an agreement to lay down on the operating table. My advice is not to do that until you're absolutely certain that you understand and are comfortable with the most realistic outcome.
Interesting post. I'm a 5 year PT sufferer. After reading the post I can't help but think that pinpointing the cause of PT is not that easy. I've more or less accepted mine but I wish that it would disappear.
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