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Posts (84)

Thu, Jan 24 1:38pm · Possible S3 nerve damage in Chronic Pain

@annette50 I have recently been diagnosed with symptomatic Tarlov sacral cysts. They are a type of spinal cyst. Specifically, These are also sometimes called perineural cysts or sacral nerve root cysts They are dilations of the nerve root sheaths and are abnormal sacs filled with cerebrospinal fluid that can cause a progressively painful radiculopathy (nerve pain). They are located most prevalently at the S2, S3 level of the sacrum. The sacrum is a fused triangle-shaped bone comprised of the five sacral vertebrae forming the base of the spine. The five lumbar vertebrae are located just above the sacrum, and the four coccygeal vertebrae are just below the sacrum forming the coccyx or tailbone.

If you do not already have a copy of your MRI reading — I would obtain that. See if it mentions Tarlov or perineural cyst. They are often underreported and poorly understood by much of the medical community. If there is no mention on the reading — you can ask your radiologist to re-review the MRI and specifically ask if there are any Tarlov cysts present. Many radiologists were taught that a Tarlov cyst is a clinically insignificant finding. For many people that is the case. About 5% of the population do have asymptomatic cysts of this type. Only 1% of us have symptomatic Tarlov cysts. An excellent source of information to learn more about symptoms is: https://www.tarlovcystfoundation.org/faqs/

Dec 6, 2018 · YAG Laser Iridotomy Complications in Eye Conditions

@wantingtoknow I'm guessing the reason that he wants to do the iridotomy is because your angles are becoming more narrow? I do know have glaucoma but I do have narrow angles. Two years ago, mine suddenly got worse over a 4 month period and so he strongly suggested peripheral iridotomy. It is my understanding that if you have complete closure of the angles, you have a very short window of time to get treatment before you face the risk of losing your vision. Because I live 2 hours away from the ophthalmologist, I opted to go ahead with the procedure, one eye at a time. If you decide to pursue this, my one caution would be to do your homework on the position of the iridotomy. My first one was at the 12 o'clock position and it left me with a dysphotopsia. The second was done at a temporal position. See my above posts for more detailed info about that.

Sep 27, 2018 · High Heart Rate / Slight fainting type of symptoms in Heart Rhythm Conditions

Just to clarify — it can include a component of anxiety.

Sep 27, 2018 · High Heart Rate / Slight fainting type of symptoms in Heart Rhythm Conditions

Has your cardiologist ever considered POTS (postural orthostatic tachycardia syndrome)? With that, your heart rate increases by at least 30 beats from lying down position to standing. Also associated with it can be an increase in adrenaline. Sometimes get labeled with just anxiety — when there could be more to it.

Sep 24, 2018 · Reveal LINQ Insertable Cardiac Monitor in Heart Rhythm Conditions

Hi — I think a lot of your questions can be answered with this info: CareLink Patient Services at 1 (800) 929-4043. They are available to answer your questions from 7 am – 7 pm CT, Monday – Friday – and asking these questions.

Your questions:
1) I don't think it is a problem to change doctors as long as you notify CareLink.
2) If something comes up on my report, my physician contacts me usually via MyChart notification message. Also if you don't have your Patient Assistant with you but have some symptoms, you can just note the time and the symptoms and then send a message or call your doctor with that information. Or even when I do mark with the PA — I still send a note explaining why I marked at that time.
3) Yeah, it would be great to get access to what the doctor has access to. Darn.
4) My parameters were not initially discussed with me too much. But because I started having some specific problems that we were trying to catch — I talked with my doc about adjusting the parameters. They were set at ridiculous parameters initially, in my opinion – at least for me. Nothing recorded unless less than 40 bpm or higher than 150. We changed this to 50 and 120.
5) Regarding the battery — talk to the CareLink folks about that. I'm not sure.

I suppose it depends on the cardio office that you deal with but mine is very responsive. Whenever they get a report that is concerning, they are on it and checking it.

My biggest disappointment is that the Reveal LINQ does not record my palpitations. It wasn't explained well to me before I got it. But it has been a handy little tool inside of me in the past few months when I've had trouble with my adrenaline levels and high heart rates. I hope it proves to be a very helpful tool in your case.


Aug 5, 2018 · Reveal LINQ Insertable Cardiac Monitor in Heart Rhythm Conditions

I've also had mine for two years. If it had been better explained to me how it works and the limitations — I probably would not have gotten it inserted. I too have had pain in my chest where it is inserted. I was told this would last up to the first year allowing for the nerves to heal — but it still bothers me from time to time and I also get that tearing feeling and it can be quite painful and uncomfortable. I don't lift weights but if I am doing lifting around the house or certain activities — it seems to irritate the area. I'm sorry to hear that the events that you hoped to have recorded — were not picked up. In March of this year, I had my parameters adjusted. Previously, it was not picking up anything unless my heart rate was below 45 or over 145 (I think) — anyway, I got the upper limit put down to 120. I was under the impression when I got this thing that I would essentially have a 3-year, 24/7 heart monitor that would pick up all of my arrhythmias. Not true. I was told at my 2nd year appointment that it doesn't pick up on PVCs, PACs, and the like. It can detect atrial fibrillation. Darn — if I had understood this, I would have foregone the procedure — as it was quite expensive. Just a couple of weeks ago, I was having racing of my heart at night. I did contact my cardio office and it was all caught — but had the parameters not been adjusted, it would not have been.

May 18, 2018 · Med detective needed, award given - adrenaline spikes in Diabetes/Endocrine System

Good thoughts, mentors and folks. Thank you for the exchange. It is a balancing act between respecting your doctor, understanding and knowing your own body, legitimate research of your own and communication.