Hi all - newly diagnosed this week. Back in early November I started having pulsatile tinnitus in my left ear out of the blue one Monday afternoon. I few days later I went to see an ENT. He did a hearing test and exam and didn’t find anything. He said next step was to get a MRA but says usually people usually wait a few months of having the pulsatile tinnitus symptoms for a few months before getting the MRA - which I thought was really weird. But I said I would wait a few weeks and if the symptoms persisted I would get the scan done. Well I called to schedule the appointment early December and they told me the first opening was early January. The MRA scan was on Tuesday. The ENT called me first thing Wednesday morning and said the radiologist found something. He said I had a pseudoaneurysm in my left carotid artery - there was a dissection in the petrous section. He referred me to a specialist but that specialist can’t see me until this upcoming Wednesday. Which means a week long of getting a diagnosis but knowing anything! I don’t know how big. How dangerous. Am I in jeopardy? Things I should avoid? Ugh. I was pretty destroyed the first two days but this weekend I started to feel more at peace. Has anyone else been diagnosed with something like this? I am adopted so don’t know family history. I’ve had no head traumas, so no idea how this developed. Thanks for any help.
Hey JB,
Welcome to Ben’s Friends.
A weeks wait?? That’s pretty good, some people have had to wait months before obtaining a neuro appointment, even then many of us told to take a ‘wait and watch’ approach by the specialist neuro. There are always a few variables with pseudo annies and each neuro would need to make an individual assessment. Exact location can play a large role. What is the likelihood of rupture? Is it accessible? What are the surrounding structures?
Some people can go their whole lives having these things with very little in the way of symptoms and not even know it or they be found incidentally, often due to being seen on dental scans. This is often why ‘wait and watch’ is a good idea, if there is no change over time, if symptoms are tolerable and it all seems stable, surgery may not be required or recommended.
If you can at all avoid neurosurgery I’d highly recommend it. I’ve required a few a none have been what you’d ever call ‘Fun’ and the final outcome has been less than desired.
Your stresses are normal. Initially I was an absolute mess, I had all those same questions (and more). I call them the ‘What if’s…???’ “What if ‘this’ happens?.. …What if that happens?.. …What if… …What if…?” The reality is no one really knows and that waiting for the appointment can be nothing short of a torment.
But, you need to get a confirmed diagnosis and a confirmed plan from a qualified neurosurgeon. Those “what if’s” are normal, write them down, then when you go to your appointment you can ask someone who is educated, who does know. Neuro appointments can be a little overwhelming to say the least and we often leave the appointments and then think 'Ohh I should have asked him about ‘X’", make a list of questions.
And finally, try to relax HAA HAA. I say ‘HAA HAA’ because relaxed was the very last thing I was, my poor wife had to put up with me as a ball of stress (NOT pretty). (I can say this now but…) stressing about something we have no control over is a waste of time and energy. We have to hand all of that control over to the medicos and for a control freak like me… …That ain’t easy. But the reality of it all is, it’s all up to the dr’s.
Just know we are here if you ever need to chat.
Merl from the Moderator Support Team
Welcome Tweeter! I hope you have a great adopted family. I looked at your profile and you might have a chance of the adoption agency having taken a family medical history. It’s much more common now. But it wouldn’t hurt to contact them, if you’re able. The agency I worked at as a Social Worker called them Life Books. If the birth parents were able/willing to help, they would be full of information. Foster Care and Adoptions put them together, sometimes we in CPS could also add some information. Our agency had been doing them for about 30 years or so.
I’m guessing you’ve done some research on Pseudoaneurysms already. But for our members, I’m going to post this Pseudoaneurysm: Symptoms, Causes, Diagnosis, Treatment
We don’t have many members that have had these. But I agree with Merl, a one week wait is like winning the lottery, that’s fantastic! I would also strongly urge you to write down questions. You will have more questions as you learn more. Ask family and friends to join you in the questions list. A few off the top of my head would be can I still take NSAIDs if so, how many a week. NSAIDs are in the aspirin category making them blood thinners. Weight limits (how much you can pick up) hydration and blood pressure are also things I would cover. Many of us here have a 40 lb limit. We also need to keep hydrated as it helps our brain and body tremendously. We need to keep our BP under control so as not to put too much stress on the artery. Exercise would be another thing to cover as in how much and what type. Being sedentary isn’t a good thing but you probably don’t want to be overdoing it either.
I’m guessing Michigan has seen some snow already, don’t be shoveling it until the specialist gives you an ok. Walking is great if you can stay warm enough.
I’m glad you aren’t as stressed as you were, that’s great news. Do you know how to do some relaxation breathing? There’s all kinds of tips on line and on YouTube. Give that a try and practice all the time. The way you breathe is one thing that is definitely under your control.
Keep in touch and let us know how the appointment goes. Don’t be surprised if the specialist wants more scans. Be patient waiting for other members to chime in, we are a world wide support group!
All the best,
Moltroub
Welcome JB. Sorry to hear of the stress that you are now under. I am sure that you now know that stress and high blood pressure are not good friends with aneurysms. So please try to calm yourself with some meditation and think good positive thoughts until this waiting is over. The other risk factors are familial and smoking. So if there is not a history of this in your family and you don’t smoke, your risk may be less. Again think good thoughts. If that is not the case and you do smoke, maybe now is a good time to quit!
I am very intrigued by your case as I was telling someone else. I had a rupture two years ago and have since developed an irritating case of tinnitus. I went to the ENT and was told that there isn’t really anything that can be done for that. Had I read your post prior to my ENT visit, I would have asked more questions. In fact, I may still get back with them. But I intend to follow up with my neurologist. I have had an MRA, but that was really to see if the devise that was inserted to divert the blood from the aneurysm was working effectively. They also look for other problems, but the tinnitus was not really present at that time as I recall.
Anyway, good luck with your upcoming appointment. Stay safe and God Bless.
Thanks for all the responses. I saw the specialist today, an interventional neuroradiologist. He confirmed diagnosis and said that was extremely rare to have a dissection in this part of the carotid artery (petrous section) because the artery is encased around a bony structure at the base of the skull. He asked if I had any known trauma and I said no - nothing that I can remember. He said he wanted to run more test — a MRI (I only had an MRA previously) and then he wants to do a cerebral arteriogram (which sounds scary!). He said that he doesn’t think this is something we can do nothing about. He said after those two tests he will be able to determine possible course of treatment but he thinks it will be to insert flow diverting stent. I also saw he wrote in my chart notes that he not ruling out Fibromuscular dysplasia. He started me on aspirin and said that I’m at a significant increase for stroke in near term (ugh!!). I was also able to get an appointment, through a friend connection with the head of vascular neurosurgery at U of M hospital. That way I can get a second opinion. That appointment is in 2 weeks. Does anyone have any more feedback on any of this??? Thank you!!
Hi Brian - yes, what I have is pulsatile tinnitus which sounds like your heart is beating in your ear. It differs from regular tinnitus. But yes, if you have a history with aneurysm, I would definitely push your doctor on this.
I am a former smoking. I smoked for 18 years (started when I was 13!!), but I quit 16 years ago so I’ve been smoke free for that long.
I’m adopted so don’t know my family history.
The doctor seemed pretty surprised that I didn’t have a trauma with this particular type and location of dissection, but did say that “sometimes” they spontaneously occur - so who knows?!?
Tweeter_20, I have been wondering at what age you were adopted and if you know the reasons for the adoption. As a retired CPS Social Worker, I unfortunately had to respond to many infants with head injuries. You don’t need to answer, I know how personal this can be. However, if you can find out, it may help. I had a head injury at 13 months of age and was in hospital for a week. I had pulsatile tinnitus until I ruptured, I thought it was normal and was quite comforted by it. I must’ve had it for over 50 years, as I ruptured at 53. It started back up a few months before the stent was put in last month and now it’s gone again.
I had a similar situation, but with hearing loss. Another symptom was a light head ache every morning, I attributed to need of caffeine soon. These symptoms lasted more than 5 years, until the lack of hearing prompted me to visit an ENT. ENT’s probably diagnostic was an Acoustic Neuroma behind the ears labyrinth. Made appointment for MRI right away, unfortunately at the time of going inside the tube, I panicked and had to be rescheduled for another week. ENT prescribed Xanax to have MRI. All these took 2 weeks or less. December 4 was ENT appointment and I was diagnosed oh December 12, 2019. Aneurysm was located in the Carotid area, 7 mm.
Same day of diagnosis I was referred to a wonderful team of Neurosurgery group in Georgetown UH. First appointment was in December 17, 2019 with the cranial Neurosurgeon to find out my aneurysm had to be fix trough a major artery. On December 19, 2019 had appointment with the the Interventional Radiologist, another Neurosurgeon that uses new non invasive technology for brain surgery.
Exploratory angiogram was in January 13, 2020. It was determined aneurysm’s size, shape and location. A Pipe Line was the wat to fix it. Then in February 12, 2020 had the procedure. Plavix and aspirin 325 mgs. was prescribe pre-op.
Procedure was almost painless and I was sent to IC for 24 hrs. Was sent home next day and had to be on compliance to take low dose aspirin for the rest of my life, and Plavix for 3 months afterwards. All these fortunate before pandemic.
Pandemic helped me recover at a good pace because I was able to work from home for 6 months, just on time to have 2nd angiogram. After COVID test, I had angiogram on September 13, 2020. Pipe line has grafted to the artery and is part of my body now and there none aneurysms.
I bruce easily and has taken almost a year for all physical symptoms to recede. Memory lapses or lagoons have completely disappeared. Most of all, I am able to multitask and recuperate physical activity.
I was in very good physical shape before procedure, and doctors attribute excellent recovery after procedure. I was given the go ahead to continue swimming and jogging.
As long this casual finding you will be ok.
I would have never known if I had not loose my hearing.
God bless you,
Maggie
Thanks for sharing Tweeter. My husband has been having pulsatile tinnitis which I wasn’t taking as seriously, I am going to take it very seriously now. Moltroub, (this is for you), what kind of doctor should we start with? We have appt. with ENT.
I think since you have the appt with the ENT it’s an excellent place to start. They should be able to determine what it is. They can order different types of imaging to see if it’s coming from the arteries and why.
Make sure you stress pulsatile tinnitus and not just tinnitus as they may tell you there’s nothing you can do for tinnitus. When I started having the ringing in the ears type, my PCP said to use a table top fan and not a ceiling fan which helped tremendously.
Is your ENT affiliated with UC? They have an interdisciplinary team. I just looked them up. Found this https://www.araoent.com/tinnitus
Please let us know how it goes. I’m hoping the best for you and your husband as always!
Moltroub
Okay, so now I am thoroughly confused! I got a second opinion from a better hospital and a neurosurgeon versus an interventional neuroradiologist and the information was completely opposite, which was quite unsettling. The new doctor said this wasn’t that big of a deal, thought we could just watch it, wasn’t really at a risk for increase stroke especially since I was on aspirin. He suggested getting a CTA and a MRI and follow up in 3 months. The first doctors said we HAD to do something about it, it was pretty serious, increase for stroke, recommended angiogram and then he could confirm treatment, which he thought would be a flow diverting stent. Ugh. While I like the positive nature of the 2nd diagnosis, I’m just not sure which one is the “right” one. Also the new doctor said twice that he did not think that the pulsatile tinnitus was related to the aneurysm - which is also inconsistent with everything I’ve read (knowing that I’m not an expert, but still!). I might seek a third opinion and split the difference!!
Hey JB,
I’m sorry to say it like this BUT, getting conflicting answers is NOT unusual. As I stated earlier the ‘Wait’n’watch’ scenario is really common and for good reason too because if you can avoid neurosurgery at all I would STRONGLY recommend it. I was of the understanding that my first neurosurgery was to be my only neurosurgery. And the first operation did deal with the desired issue but what it also did was unleash a heap of other issues which, in turn has lead to another 5 further neurosurgeries. Each one has hit me harder and harder. The ongoing issues have been more impactful than my initial concerns.
My advice:- Get the scans done. See what the reports say.
As for dealing with the conflicting advice…Hmmm…This can be a problem. Firstly, can you SAFELY put up with/manage your symptoms? By ‘safely’ I mean both mentally and physically. Mentally this can be a huge burden to carry, don’t be dismissing the mental impacts. If you are having physical symptoms and you think they’re not too bad, then OK, If the answer is yes and you think you can manage, then wait the 3 months, but if you are symptomatic get it seen too. It is rare that symptoms diminish without intervention, in fact it’s more common for symptoms to progress/get worse.
Personally, I think your idea of getting a 3rd opinion is a good one, especially with such a conflict between 2 opinions but like you we’re just patients too, not dr’s.
Merl from the Moderator Support Team
Good Morning @Tweeter_20! Having ruptured, I didn’t have any choices. Having had four repairs to the aneurysm, the multiple angiograms and the many imaging tests that have gone along with that little bugger can be quite daunting. I had to look up some of what your first doctor found and I can certainly understand why that professional wants to do an angiogram and perhaps fix it, I can also understand the watch and wait avenue, which is very common to the members who haven’t ruptured. I think your first doctor is concerned about an ischemic stroke, but I’m not sure.
Angiograms are the best of all for a specialist to see what is truly going on. I was very surprised that my last images were such that Dr. Stacey Wolfe didn’t need an angiogram and fixed it with a new type of stent. Over a month out and I’m doing better than after any other procedure.
I wouldn’t discount specialists that are not practicing in a university setting. Whilst specialists in a university setting get more patients in their specialty so they have more experience with some issues, there are specialists who have a great background and continuously read the latest journals.
I agree with Merl, if avoiding is possible, it’s a good route. If symptoms effect your way of life then it needs to be repaired if possible. You can send your images to other specialists for another opinion and you don’t have to go. I know my neurosurgeon does that quite a bit from what I’ve been told. Perhaps other members from Michigan can suggest some specialists. I doubt you would want to come all the way to NC, but if you want my surgeon’s name, I can certainly provide that to you.
All the best,
Moltroub