Should I go for 2nd opinion?

[Youmi111]

I had a recent MRA done and it shows I have a partial clot in my transverse sinus vein and a small one in my sagittal sinus. These are from an old clot that I had in 2018. They never fully dissolved. My hemo says they are fine and not to worry. Well I’m worried. What if I develops another one, they may become completely blocked. So my question is should I see another hemo for a 2nd opinion to see if I can’t get these further dissolved.

[KellyInTexas Administrator]

Hello Youmi.

You’ve had a tough time the past few years.

Where are you located?

Do you have an APS specialist hematologist, and does that hematologist communicate with your neurologist?

Have you ever been on high intensity LMWH every 12 hours with clopidogrel and a statin? If so, did you clot through?

Are you on hydroxychloroquine?

This is just a starting point for a conversation.

[Youmi111 in reply to KellyInTexas]

I have a Hemotologist but no neurologist. I am on warfarin and plaquenil. No I’ve only done lovenox when I had the clot. Nothing else.

[KellyInTexas Administrator in reply to Youmi111]

So you are in the USA? Which state?

[Youmi111 in reply to KellyInTexas]

Upstate NY

[KellyInTexas Administrator in reply to Youmi111]

Beautiful. We used to spend a lot of time in Ithaca. I miss it there. ( daughter did undergrad 2010-2014 at Cornell. She was starting to get sick- now we understand why... lupus, etc... we bought a home there and we were there often.)

There is a great hematologist who understands APS in the NYC. I’ll dig tomorrow for her name. ( if you feel you need a second opinion.)

Where is your inr set now? When it drops below what number do you bridge?

[Youmi111 in reply to KellyInTexas]

When it falls below the 2.5 she will go up 1/2. If it goes over 3.5 she brings it down 1/2 mg. My son lived in Ithaca for a bit too and it is nice there. My grandchildren live 20 minutes from Ithaca. I live in Ogdensburg NY. Canada is right across the river. We have a bridge that connects to Canada, so we are way North.

-also I’d love the name of the Hemotologist from NYC. Thank you

[KellyInTexas Administrator in reply to Youmi111]

google.com/search?q=dr+crom...

It will be a quite a ways for you to get to the city.

Your inr is set too low in my opinion, and in the opinion of the EULAR 2019 guidelines for the management of APS .

I would think ( depends on other factors like previous bleed risks, platelet history) you might need to bridge at closer to 3.0. You can always bright with a lower amount of LMWH with a 3 , and a smidge more at 2.5 inr.

I would definitely seek a second opinion after reading what you have told me. It is my belief you are undercoagulated.

I also have a very labile inr and I appreciate the concern that many hematologists who do not work on a regular basis with APS patients have with increasing the inr. ( fear of it jumping up.)

This is why you need Dr Cromwell.

[Youmi111 in reply to KellyInTexas]

Thank you. You are much more educated than I am as I didn’t know there were guidelines. We live in a little city and I’m probably the only one with APS here. But I will go to NYC if I can’t get into Burlington,VT. I’m calling on Monday as I want to ck this out soon. So is Dr Cromwell from NYC? Any info u can give me I will greatly appreciate it. Thank you!

[KellyInTexas Administrator in reply to Youmi111]

ard.bmj.com/content/78/10/1296

This is the EULAR guidelines. For management of APS.

I did put a link to Dr Cromwell I one of our threads. I’m not sure of her personal background, sorry.

You could do a google search for her CV if you were interested. The link I sent might give you some background.

[Youmi111 in reply to KellyInTexas]

Thank you again!

[Nanny23 in reply to Youmi111]

My sister Debbie went to Dr. Cromwell in NYC. She is an excellent dr. With expertise in APS.

[Youmi111 in reply to Nanny23]

Thank you. Do you have an address or tele no? I woke up with head pain and pain on the top of my neck/skull and these are the areas of the clots. I’m thinking they are bee, not old. I just don’t know and am so confused.

[Nanny23 in reply to Youmi111]

I will see if my sister still has her number. She doesn’t use her anymore because she’s in Manhattan. She’s handicapped lost part of her leg due to a blood clot. I met Dr. Cromwell as I took her to Manhattan.

[Youmi111 in reply to Nanny23]

Thank you.

[Bloodredroses in reply to Youmi111]

She is a lot more educated than most of us Re APS. Haha 😆 I went to be . I have never asked my Haematologist for the 6 monthly blood levels . I willNow . She may not be in they job forever . I just listen to her evaluation . It’s the only thing I have not become my own expert on lol. The APS link will

Be so Interesting. It is just not they common . I had no tested reason to develop it , she advised my G P could have been Hep C which o am cured of totally in 1 month with the nuclear ☢️

Anti viral used to eradicate it from the liver . I have read it can be the Hep C OR the anti viral used to cure it . No

Wonder I am seating bullets 1 week after Pfizer 1 and 2 , took

4 weeks to stop after Pfizer 1 .

Is anybody else out there , with APS on Rivaroxaban having fairly strong reaction to Pfizer ? I feel

Great in between . Have a fluid filled lump In my neck which I found 2 days after jab. Ultrasound and G P examined

Said not cancer . It’s like a lipoid , a non infected fluid lump in the fat of neck . They take weeks to shrink , tried ice . If not get smaller in a couple of weeks maybe G P might refer for an mri . Thr ultrasound shows no mass .

I think it’s my thyroid reacting to Pfizer 2 . Plus the drench sweats . No diabetic no heart problems . Plus jab 1 also at time of sweats herpes both ends . Haven’t had that in years . Got Aclovir herpes tablets from g p helps , more st the end of the 4 weeks . The first week , of sweats can only use ice packs , head forehead eyes chest neck of neck . only Stops the sweat cycle until next time, cold tepid showers . ice water no ginger no hot coffee no garlic pepper , sad ☹️ As I love all those .

I feel Pretty good actually . My friend with long Covid exhaustion said she feels a bit better after vacc?

Immune msgs ??

Not many more tests they can do. When I tell any g p or specialists ( vacc me ) they I have these reactions and have APS . On Rivaroxaban . They look Blanc. APS UNCOMMON. After Pfizer 1 sweats came 21 days after : 4 weeks before faded .

I have started same cycle 3 days after Pfizer 2 . No temp no B P

good oxygen .

I myself think Pfizer mRna messenger Vaccine has a message for my immune . I’m going to give you a bloody good kicking . So hang on . You will be Covid immune but there’s a price to be paid . If you thought jab one a kicker now watch me on jab 2 . Hahaha 💉💉💉💉💉💉💉💉💉 boot 🥾 🦠

The Dr Vaccinator at the hospital vacc said mostly Pfizer jab 2 more reaction than jab 1 , she said “you would expect that “ I said “ Oh would I ? oh well whatever , thanks for jab “

I DONT CARE , I had mind set , even if it half killed me . I wanted this Pfizer . Thr Jab 1 Vaccinator was a Surgeon , said , tell everyone “whatever reaction they get from the Vacc, IT IS NOTHING , you understand ? NOTHING COMPARED TO SEVERE COVID !!! I said yeeeess Dr , and skipped out of there .

Has anybody had any of these same Reactions , French sweats head, arms chest , herpes . Fluid Lumps on neck in thyroid maybe . I feel as those visited by Alien from Mars , things happening only to me , no Dr or Specialist can diagnose . Allergy symptoms itchy hot around eyes . I put numbing ointment on there . Oh and rotate clean towels on bed pillows as sheets , change bra . Twice daily . Lot of washing . CBD Jellys to keep calm . 😊

Still happy though 💉 🥾 🦠

[GillyA]

Hi Youmi, I was diagnosed with CSVT in my lateral and sigmoid sinuses last year. At the 6 month point there was no visible change on the MRI, although the changes to my eyes had improved a little. Both neurologist and haematologist said that it may never resolve, but as long as I am properly anticoagulated there was no problem.

Waiting for the results of latest round of scans. All the research I’ve done seems to suggest that recurrence of cvst is very unusual. If a second opinion would reassure then go for it, but it seems we have had similar advice.

I know the diagnosis of CSVT and then with APS was hugely shocking and disruptive, I’ve mostly got through it, but having the tests and waiting for the results has brought a lot back to the surface

[GillyA in reply to GillyA]

So got the MRI results last week. The clot is apparently stable. I asked if I was likely to have it for the rest of my life and the answer was ‘ask me again in a couple of years’. Another round of scans in 6 months.....

[HollyHeski Administrator]

Hi, I understand the worry of having clots remaining and not dissolving. Its totally understandable.My clot is in my subclavian, been there since 2004! My concern was it dislodging and going up to my brain and causing another stroke. They tried by angioplasty to remove but no luck, I went for 2nd opinion and had further angioplasty which opened up the artery but unable to remove. I felt like I was a ticking bomb but all I got was its fine, just like you.

I do have periodically checked by MRAs and angiogram, which gives me reassurance and weirdly have learnt to live with it.

So your doctor is probably right but like me you need further reassurance then do seek out for it.

[MaryF Administrator in reply to HollyHeski]

What a worry, it appears stable? I am glad the regular checks go on. I agree with you about the further reassurance never any harm in a decent second opinion and the input of others, I think quite a few on this forum have this situation, not one I have myself, but I can imagine i would want extra clarification if I did. MaryF x

[Raw57 in reply to HollyHeski]

Do you have Thoracic Outlet Syndrome?

[Youmi111 in reply to Raw57]

Idk what that is.

[HollyHeski Administrator in reply to Raw57]

Neurogenic-arterial TOS yes, without first rib complications.

The blood clot inside my subclavian also causes subclavian steel where blood flow to my brain goes wrong way esp when my blood is too thick.

[Raw57 in reply to HollyHeski]

So first rib resection would not alleviate the compression on the subclavian vein? Or your thoracic outlet? I understand the difference with blood thinners and not with chronic clots in my subclavian vein and external jugular. Before I would feel like my chest and or head would explode. I do not feel that now. I have had my first and second rib removed and all scalenes

[Ignacio182]

My recommendation is (if possible):

- Do daily exercise (walking or Elliptical)

- Drink plenty of water daily

- Keep your INR in range (test at home)

That trifecta enhances blood flow and will protect you from further clots.

Best

Ignacio

[Youmi111 in reply to Ignacio182]

I do test at home once a week. What is the trifecta?

[Ignacio182 in reply to Youmi111]

What is the variation of your INR week to week?I self test every other day and adjust my warfarin doses as per my body historical response to increases/decreases of mg.

Keeping track of this data helps me accurately adjust the med.

My INR is stable, but given certain circumstances it slightly increases.

Anyway, doing daily exercise has tremendous

Long-term benefits and will surely improve our quality of life.

[Youmi111 in reply to Ignacio182]

Ty g he and you!

[GinaD]

Ditto re drinking plenty of water. The hematologist who diagnosed me explained that our thirst kicks in only after our bodies become mildly dehydrated. So, he told me to " drink by the clock."

[Youmi111]

I just looked at all my MRAs and CTs. I’m really confused. On 1/15/19 they found a clot in my transverse and sagittal veins. I went on lovenox shots. Redid MRA on 1/24/19 and said no filling defect found in transverse vein. Did another MRA on 10/30/19 and states unremarkable MRA of the brain. States no aneurysms or occlusion disease. On 1/27/21 had a CT as I fell and started with headaches and pressure. This states unremarkable CT scan of the brain. So headaches and pressure not going away but easing up a little. So just did MRA on 3/22/21 and now it shows the partial and small clots (which I wrote about above). So is it actually old clots or new ones? I’m thinking new. What do you think?

[KellyInTexas Administrator in reply to Youmi111]

I think you need a neurologist to compare and interpret these images.

I have been and remain appalled that you do not have a neurologist as part of your care team.

This explanation from Dr Hughes helped me understand APS :

APS is unique to other autoimmune diseases in that it is a actually a hybrid autoimmune disease.

It is a hybrid of Rheumatology and hematology, and more and more we are seeing to a large extent neurology. More often than not all three specialists must be brought into the patients care.

Additionally, an advantage of seeing Dr Cromwell is she will be able to get you in with a neurologist of her choice that she works well with.

[Youmi111 in reply to KellyInTexas]

I’m agreeing with you. I’m calling Monday to have someone else review my records and to tell me if these are old clots or new ones. I’m hoping I can get in soon. If Burlington can’t I’m going to try Syracuse for now. Eventually I’d like to see Dr crumwell. I cannot thank you enough for your thoughts,help, and advice! Thank you!

[Raw57]

Hi I know it is not the same but I have chronic DVTs in my subclavian veins on both sides and jugular on the right. I have grown collaterals so I get enough blood to have a pulse on both wrist usually. I have a vascular surgeon who treats it and a hrmstologist. No one is excited about chronic clots. I take Xarelto daily. I do not respond to warfarin. 😕

I would pursue your worries with a specialist until you are content with the answers.

BTW, I have Thoracic Outlet Syndrome and I am in a group for TOS. Many of us have chronic DVTs. So while the upper extremity DVTs are unusual, it seems chronic DVTs are not.