Not quite a perinatologist - high risk neuro-pregnancy speciality?
December 4, 2013 9:51 PM Subscribe
I want a second opinion on getting pregnant, but don't know who to ask as my diagnosis came from a rheumatologist and gynaecologist team, while my neurologist had previously said somewhat differently, that I could not risk another pregnancy. I don't know whether to look for another team diagnosis or if there is a specialist for my particular case.
My current diagnosis is frequent mild trans-ischemic strokes, with no known cause, although I am considered seronegative antiphospholipid syndrome, having had a dracula's worth of blood tests done. I have had epilepsy etc, and cardiological causes ruled out, although I have a mild mitral valve prolapse. I am on plavix and aspirin (I had TIAs on aspirin alone, and once on the combined dose).
I have a history of repeated early miscarriages, and had one pregnancy with heparin and aspirin, although due to a separate trauma, she was delivered at 30 weeks, which in hindsight (the TIAs went undiagnosed for a long time, until I had one and fell while carrying the baby in my arms, and got worried enough to go to the ER) probably saved both our lives as the pregnancy was increasingly complex.
I can't risk going on birth control or having my tubes ligated (no elective operations), and my husband is willing to have a vasectomy. When a doctor tells you that you have a 50% risk of death with another pregnancy, you think twice. The current advice is that if I accidentally got pregnant, I should very strongly consider an immediate abortion.
Still, before we make a final and permanent decision, we would like to get a second opinion, as for the past two years we have been told to go ahead and try for another baby.
I have a rheumatologist, a cardiologist, a neurologist, a vascular surgeon, and a gynaecologist. They all work at the same hospital. I would like to go to another hospital for a second opinion, but I have no idea what specialist to look for, and I don't want to ask my current doctors for a recommendation because I find this very emotionally tough and have gotten a lot better care by working hard to be the calm and reasonable patient, not a baby-crazy hysterically sobbing patient.
So who do I look for? I need like a neurologist-gynacologist, does such a unicorn exist?
This is a sockpuppet account, so please memail if needed.
My current diagnosis is frequent mild trans-ischemic strokes, with no known cause, although I am considered seronegative antiphospholipid syndrome, having had a dracula's worth of blood tests done. I have had epilepsy etc, and cardiological causes ruled out, although I have a mild mitral valve prolapse. I am on plavix and aspirin (I had TIAs on aspirin alone, and once on the combined dose).
I have a history of repeated early miscarriages, and had one pregnancy with heparin and aspirin, although due to a separate trauma, she was delivered at 30 weeks, which in hindsight (the TIAs went undiagnosed for a long time, until I had one and fell while carrying the baby in my arms, and got worried enough to go to the ER) probably saved both our lives as the pregnancy was increasingly complex.
I can't risk going on birth control or having my tubes ligated (no elective operations), and my husband is willing to have a vasectomy. When a doctor tells you that you have a 50% risk of death with another pregnancy, you think twice. The current advice is that if I accidentally got pregnant, I should very strongly consider an immediate abortion.
Still, before we make a final and permanent decision, we would like to get a second opinion, as for the past two years we have been told to go ahead and try for another baby.
I have a rheumatologist, a cardiologist, a neurologist, a vascular surgeon, and a gynaecologist. They all work at the same hospital. I would like to go to another hospital for a second opinion, but I have no idea what specialist to look for, and I don't want to ask my current doctors for a recommendation because I find this very emotionally tough and have gotten a lot better care by working hard to be the calm and reasonable patient, not a baby-crazy hysterically sobbing patient.
So who do I look for? I need like a neurologist-gynacologist, does such a unicorn exist?
This is a sockpuppet account, so please memail if needed.
Do you live near a research institution (a medical school?) If so, there may be people who do OB and neuro, although it's a rare combination to find--I don't think there are any neuro-OB fellowships. I would look for a team that has anesthesia, OB, neuro, heme, an general surgery. Regardless, because of your use of blood-thinners and history of TIA, if you choose to try for pregnancy, you should definitely get care at a hospital with a good high-risk OB team and good perinatology.
posted by stillmoving at 10:59 PM on December 4, 2013 [1 favorite]
posted by stillmoving at 10:59 PM on December 4, 2013 [1 favorite]
What both above have said is super important: find someone at your local research institution or medical school. Also, your insurance provider should have registered nurse case managers, they can be surprisingly helpful in helping you finding a specialist whose concentrations fit your needs.
posted by thebestsophist at 1:46 AM on December 5, 2013
posted by thebestsophist at 1:46 AM on December 5, 2013
Best answer: You might be looking for a Maternal-Fetal Medicine Specialist. At least here, they tend to be the go-to people for the VERY high risk pregnancies (not the, gestational diabetes/one manageable problem kind of 'high risk' pregnancies). Otherwise, if you are connected with any of the online groups for people with similar conditions, you may have some luck seeing who other people have dealt with for pregnancy related concerns.
My experience, although yours may be vastly different, was that Doctors are very scared of very rare pregnancy affecting serious medical conditions. I was told: If you get pregnant, it will likely kill you...and another doctor said: I'm not worried about getting you pregnant, I'm worried about keeping you alive. I have a three year old daughter. What made the difference for me was breaking down the risks objectively, deciding on a plan for treating them, having a plan for delivery and in case of pre-term labour, and living in a city 1000km from home for the last 6 weeks of my pregnancy. And of course, a fantastic high risk team.
Please know that while for some people pregnancy is indeed a very bad idea, for many of us, it's a matter of finding doctors who actually know about our conditions, and are willing to work proactively instead of reacting from fear and out dated journal articles.
If you want to discuss my experience more, which is not totally dissimilar to yours, feel free to memail me.
Whatever your choices, and experiences, good luck along the way!
posted by Northbysomewhatcrazy at 3:21 AM on December 5, 2013 [1 favorite]
My experience, although yours may be vastly different, was that Doctors are very scared of very rare pregnancy affecting serious medical conditions. I was told: If you get pregnant, it will likely kill you...and another doctor said: I'm not worried about getting you pregnant, I'm worried about keeping you alive. I have a three year old daughter. What made the difference for me was breaking down the risks objectively, deciding on a plan for treating them, having a plan for delivery and in case of pre-term labour, and living in a city 1000km from home for the last 6 weeks of my pregnancy. And of course, a fantastic high risk team.
Please know that while for some people pregnancy is indeed a very bad idea, for many of us, it's a matter of finding doctors who actually know about our conditions, and are willing to work proactively instead of reacting from fear and out dated journal articles.
If you want to discuss my experience more, which is not totally dissimilar to yours, feel free to memail me.
Whatever your choices, and experiences, good luck along the way!
posted by Northbysomewhatcrazy at 3:21 AM on December 5, 2013 [1 favorite]
Best answer: I was just coming in to suggest a Maternal-Fetal Medicine practice. They are trained to work with a host of unicorn issues related to pregnancy and generally work in consultation with other specialties to address those issues.
posted by goggie at 4:00 AM on December 5, 2013
posted by goggie at 4:00 AM on December 5, 2013
Best answer: When I needed a determination made for whether pregnancy was indicated for me I saw a Maternal Fetal Medicine specialist. If nothing else they can coordinate the list of other specialists you should be talking to besides them to help you make an informed decision.
posted by lydhre at 4:15 AM on December 5, 2013
posted by lydhre at 4:15 AM on December 5, 2013
Best answer: N-thing an MFM specialist... a friend of mine does MFM, and she has traditionally handled only the highest of high-risk pregnancies (I think I once described it as "delivering breech twins to a mother with hypertension and heart failure... through a transdimensional portal"). While normal doctors are all about minimizing risk, MFMs' entire CAREERS are dealing with high-risk situations. I think talking with one might be a huge comfort.
posted by julthumbscrew at 6:30 AM on December 5, 2013
posted by julthumbscrew at 6:30 AM on December 5, 2013
MFM is what you want. If you're in Michigan or Ohio, memail me and I can give you specific recommendations.
posted by dpx.mfx at 8:10 AM on December 5, 2013
posted by dpx.mfx at 8:10 AM on December 5, 2013
If you are by chance in Boston, or hell, anywhere in New England, I see a neurologist who specializes in managing neurological conditions during pregnancy. She works out of the Maternal Fetal Medicine clinic at Brigham & Women's. I would be more than happy to get you info about the practice, feel free to MeMail me.
posted by sonika at 10:16 AM on December 5, 2013
posted by sonika at 10:16 AM on December 5, 2013
Response by poster: Thank you to everyone who answered! We got a referral to the Maternal-fetal medical specialist who turned out to be one of the team who worked with me on my successful pregnancy and I saw him yesterday. We had seen another specialist (haematologist) in-between who had also been surprised by the diagnosis but could not make a recommendation because it's not their field.
He reviewed all the files and was taken aback by the diagnosis given and essentially in doctor-speak said that it was whack, and likely wrong and given for the particular doctor's personal views about risk, me as a patient with children and so on. That doctor recently left the hospital, a fortunate coincidence for me (and my husband who was urged to get an immediate vasectomy and can now wait a couple of years!)
He has had post-stroke patients, patients with strokes during pregnancies, and is comfortable accepting me as a closely-monitored patient if I am on medication and living very healthily etc, and I have no significant TIAs for now. I only have 2-3 years to try before I feel that age would raise the risks further too.
It is a huge relief to not worry that I would have to die each month if my period was late, and to be able to choose if I want to try or not to try. Infertility treatment is out of the window because of the risk of hormones, but I no longer feel like a ticking time-bomb.
Thank you so much for the advice, and I hope anyone who finds this question in the future does the same and gets a second opinion from a maternal-fetal specialist, not a ob-gyn.
posted by kittypaw at 6:49 PM on February 7, 2014
He reviewed all the files and was taken aback by the diagnosis given and essentially in doctor-speak said that it was whack, and likely wrong and given for the particular doctor's personal views about risk, me as a patient with children and so on. That doctor recently left the hospital, a fortunate coincidence for me (and my husband who was urged to get an immediate vasectomy and can now wait a couple of years!)
He has had post-stroke patients, patients with strokes during pregnancies, and is comfortable accepting me as a closely-monitored patient if I am on medication and living very healthily etc, and I have no significant TIAs for now. I only have 2-3 years to try before I feel that age would raise the risks further too.
It is a huge relief to not worry that I would have to die each month if my period was late, and to be able to choose if I want to try or not to try. Infertility treatment is out of the window because of the risk of hormones, but I no longer feel like a ticking time-bomb.
Thank you so much for the advice, and I hope anyone who finds this question in the future does the same and gets a second opinion from a maternal-fetal specialist, not a ob-gyn.
posted by kittypaw at 6:49 PM on February 7, 2014
Response by poster: Pregnant again :-) Back on heparin and fingers crossed.
posted by kittypaw at 6:55 PM on July 18, 2014 [2 favorites]
posted by kittypaw at 6:55 PM on July 18, 2014 [2 favorites]
This thread is closed to new comments.
Second idea: now, I'm biased bc I was born at this hospital, but Magee Women's Hospital in Pittsburgh is a well-renowned women's specialty & teaching hospital. They have a General Neurology department described thusly: Maybe hit them up and see if you can get a referral to a specialist in your state? (Or if it's not too far, perhaps they could evaluate you?) As the daughter of a mother with multiple life-threatening health conditions, I feel for you and your family. Best of luck to you!!
posted by cardinality at 10:51 PM on December 4, 2013 [3 favorites]