My name is Alex. Male (34) years old. I am new to the forum and this community but was recently diagnosed with compressed jugular veins on both sides and need to get both styloid bones removed and my C1 vertebra shaved down.
My situation was very complicated as I have had Lyme disease since I was (13) years old now I’m (34) and the Lyme symptoms mimic eagle or jugular vein compression. Constant fatigue, muscle pains, neuropathy, cognitive issues, GI issues, ear pain, headaches…etc.
I was referred to Dr. Karthikeyan Arcot MD / 2200 Northern Blvd #207, Greenvale, NY 11548
He was able to sit down with with me, go through my symptoms, and we did several tests to find out that I have severe compression on both jugular veins and need to have both styloid bones removed along with a C1 shaving.
The tests I did were a CT scan with contrast, spinal tap and then a venogram this ensure my doctor got a good sense of how severe the compression was.
I now have an appointment setup with Michael J. Persky, MD / 160 E 34th St 9th Floor, New York, NY 10016 in May (which was the soonest appointment available) as Dr. Arcot who is my neurologist doesn’t perform the surgery needed.
Does anyone have any experience working Dr. Arcot (neurologist) and Michael J Perskey (head and neck surgeon)?
Also can anyone else share relatable symptoms that I’m experiencing right now?
Neuropathy (pins and needles throughout my entire body,
severe headaches,
lack of sleep/hard time staying a sleep and getting to sleep,
Fatigue
Not feeling social
Depression / Mood Swings
night sweats
brain fog
memory issues (especially short term memory),
hard time focusing at work
Thank you all in advance and would appreciate any input given the above!
Hi!
I’m sorry that you’re feeling rough as well as Lyme symptoms…I don’t recall any mentions of the doctors that you mention on here, so if anyone has seen them or had surgery then they’ve not posted. It’s always good to get more than one opinion so I would suggest that you also see Dr Costantino in NY or Dr Lo, as they’re both experienced with IJV compression and C1 shaves if that’s needed:
Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056 http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .
Does do online or phone consults we believe.
Dr. Larry Lo, 850 Northern Bl, Floor 1, Great Neck, NY, (516) 773-7737, Sheng-fu Larry Lo, MD | Northwell Health
Dr. Taka Higashimori - Does C1 shaves. Used to work w/ Dr. Cogniglio who retired. Takamasa Higashimori, MD | Rochester Regional Health
Re symptoms, neuropathy all over is unusual but some members have had unusual symptoms, ES is a strange thing!
Headaches are common with IJV compression- might be worth trying to sleep propped up as that can help with the head pressure. Lack of sleep and fatigue are very common, as are brain fog, memory issues, concentration- if you do have IJV compression, that can increase the pressure in your head (Intracranial hypertension) which does have cognitive effects.
Some members have also had night sweats I think- the vagus nerve can also be compressed which can cause all sorts of nervous system abnormalities; palpitations, BP spikes, anxiety & digestive issues can also be common.
Dizziness, an off-balance/ rocking boat sensation are also common with IJV compression, as well as head & ear pressure, ear fullness and pulsatile tinnitus. I had those with bilateral IJV compression and they resolved with surgery…
There’s info about common symptoms here: ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And info about surgery here, questions to ask your doctor are included too which might be helpful: ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Welcome to our forum @Atc91 . I’m sorry for the reason you’re here & that your symptoms are so severe. IJV compression does produce a variety of nasty symptoms but you’re in good company here as we have many members with that diagnosis & similar symptoms to yours which means there are a lot of discussions & information about it on our forum.
I hope you’re able to get an appointment with Dr. Costantino, too. A second opinion is important for cases like yours as @Jules wisely advised.