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.
Hi, I can just share with you I have seen Dr Karthikeyan Arcot, several virtual appts, and he did my angiogram/angioplasty he is great! I live out of state, so I think you are lucky to have him as a doctor. I need revision decompression surgery, and had a visit with dr Costantino, and having difficulty scheduling a surgery with him. So yesterday dr Arcot also mentioned we may proceed with dr Perske. Dr Arcot wants me to follow up with his office next week. I have seen so many of these drs and you just don’t see this kind of follow up he provides.
To elaborate more on my visit with dr Arcot yesterday, I was mentioning issues with dr C office so he started texting him during our visit and funny dr C office called me today three months later after last talk and they have not proceeded with anything, again they want me to call and get ins approval which I have done previously and they were not happy with it, I just don’t see a plan of being scheduled there, I understand dr C is great, but I have lost confidence in the organization. So Arcot mentioned if this does not go thru Hepworth or Persky. I don’t know much about him but I do trust dr Arcots opinion, Persky is also from NYU hospital, so Dr Arcot must be quite familiar with him. I’m trying to even get back in with dr Nakaji, I have never seen him post surgery! And new update dr Fargen office called, 3 1/2 years after referral!!! So I was planning on seeing him the end of month visit and lumbar puncture. I bought airfare. Dr Arcot said you don’t need that, it is moving backwards. Opinion? I guess I want somebody else to review scans and see if I really need revision. I am at a loss right now how to proceed. A long journey indeed.
I would agree w/ Dr. Arcot. Since both he & Dr. Costantino have confirmed you still have bilateral IJV compression & need a revision surgery, seeing Dr. Fargen for a lumbar puncture is really unnecessary. The lumbar puncture is most likely looking for intracranial hypertension &/or a CSF leak, but lumbar punctures are notorious for leaving patients w/ CSF leaks post procedure. It’s pretty much a given that since you still have bilateral IJV compression, you also have ICH thus that test really isn’t ideal or necessary plus it could leave you with a new problem to deal with.
We have a significant number of members who’ve been to Dr. Costantino for surgery & most w/o scheduling issues. I’m so sorry you’ve been “put through the mill” & are still fighting for a surgery date after so long. Your loss of confidence in his ofc/organization is understandable, & perhaps this negative experience is a sign you need to go elsewhere for your surgery, so onward to Dr. Perske, at least for a consult.
You should also consider seeing Dr. Liu in NJ. @EagleinSEA - just posted this information:
So frustrating for you after waiting so long to now have these doctors’ offices called! I agree with @Isaiah_40_31 , there are risks with lumbar punctures so I wouldn’t want that done unless strictly necessary…
If you still want to get another opinion to reassure yourself, then maybe Dr Lui would be a good bet- sounds like his office is very efficient & he sounds very caring!
Well you both helped me , I guess after almost 4 year wait I overreacted getting a call from Fargen, that was going to be the beginning of Journey. So after call immediately got airfare. The only thing I do have questions about they mentioned a shunt might be an option because the med methazolamide helped with my IIH. I became allergic to that medication. I’m seeing my Neuro today, and hope she can give some insight. Revision surgery concerns me weighing only 100 lbs now, dr Arcot thought might be due to vagus nerve. So not a strong person going into surgery. I started at 125 and down to 100 in 2 months, i do think i agree not to see Fargen.. I will update after Neuro appt, she is very familiar with all of these providers. Thank you
If you’re Intracranial Hypertension has no cause, then a shunt might be the way forward, but firstly if it is IJV compression still causing it, then it would be sensible to remove the source of the compression… and secondly the shunts aren’t an easy fix, there can be quite a few issues with these. One of our Mod Support team , Merl @Mod_support has much more knowledge about this than we do, here’s a link to some info:
Hi, I would love to know more info regarding Dr Persky, does he do his surgeries out of NYU langone winthrop same as Dr Arcot? I am familiar with Dr Arcot. My surgery would be a revision, I was reading your post op issues and I have to say there was so many ups and downs thru my whole recovery. And now unfortunately after all the recovery, still severe compression. I hope you feel better soon.
So I just got back from my Neuro appt, she also looked at the post op CTV again thoroughly with me. Also very large arachnoid granulation bilateral, that has never been mentioned, so i have had the condition quite a while which makes sense. She said I should go see Dr Fargen, “he is the most knowledgeable in the field.” But she does not recommend a shunt the only way she would even consider it, if it was removable. so I am considering flying out for the office visit, but not performing the LP. It seems I may have a CSF leak now, I dont want to take more risks. So hopefully they will still see me for just an appt, I will call on monday. Update on Dr C, now they sent me the CPT codes and I am supposed to call my insurance for approval. Crazy! Member services is not going to do approval to the patient. I have heard from two providers that their office is very short staffed, and busy! and people come from all over the country. So if there is any type of hiccup with your insurance they just move on to the next person. So i just dont think it will be an option for me. I have contacted my insurance 3 mos ago, gave me a reference number and said it should all be ok, just have Dr C office contact them. They would not even take that reference number. So for now increase muscle relaxers for the pain.
@birdie1 seems like from your other post you have a plan in place? Or do you still want to know more about Dr. Perskey? If so, I would suggest having a consultation with him since everyone is different.
No plan in place. I need revision surgery, and Dr Fargen doesnt do revision, unless I find out something different. Im really going there to get more information, and new eyes on my images. I wish I would have got several opinions the first time around. And they are predicting I still may need stents after revision. I feel the Dr Costantino surgery will not happen. So I will need a new surgeon. Dr Arcot mentioned if Dr C falls thru we will proceed with Dr Hepworth or Persky.
Have you asked Dr. Arcot about Dr. Liu? It would be worthwhile getting his opinion about him, too since we have an increasing number of members seeing him for surgery, & so far, having good outcomes. I’m sure Dr. Persky is a fine choice as well since we’ve heard good things about him, too.
I definitely will ask him, I am supposed to contact Dr Arcots office next week. I mentioned Dr Liu to my Neurologist today, she is also familiar with him. I think she just felt Dr Persky and Dr Arcot both work within NYU health langone, so might be better fit.? But I have waited so long, now Im willing to see who I can to make an informed decision. Just the flights get expensive, but I do prefer face to face visits. thank you
I’m really glad that your Neuro was helpful and feel that a visit with Dr Fargen is worth doing, good to have that recommendation! I guess the arachnoid granulations are a factor too in this… So frustrating with Dr C’s office!
. I will update after Neuro appt, she is very familiar with all of these providers. Thank you