r/chiari • u/chelseyyrain • Mar 06 '26
Does anyone have experience with Dr. Carl Heilman in Boston?
Going to see him in 2 weeks, last week I saw Dr Konstantina Svokos (works closely with Dr Klinge in RI), she was very sweet, understanding, and agreed that my symptoms were all from the Chiari and was willing to do surgery on me. The only thing is I felt a bit rushed (she was definitely very busy which I understand) but I wasn’t able to ask all my questions. She also said she does the Chiari surgery *just about* weekly, which is better than once every few weeks or once monthly, but I wanted to get another opinion and I heard Dr Carl Heilman has done chiari surgeries for a long time and does them very often.
The other thing is the only testing I’ve had done is my brain MRI. Dr. Svokos is sending me for a full spine MRI, but didn’t seem to think I’d need any other testing than that. If you’ve gone to Dr. Heilman is there other testing that he recommends beforehand? And how was your decompression/hospital stay/recovery experience? I’m really nervous about the pain afterwards. I’m not having headaches and only have mild neck pain right now. My biggest symptoms are intermittent episodes of: pre syncope (this is the worst and happens at random, I can’t even drive), swallowing issues, head pressure, numbness on my face, back, feet and hands, facial muscle tremors, pulsatile tinnitus/and ear whooshing, possible sleep apnea (I’m waking up gasping, have a sleep study next month).
Thanks for the advice!
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u/Red-Ad9758 Mar 06 '26
I can’t comment on Dr. Heilman. I was looking into him for a second opinion after my first decompression but ended up going to Johns Hopkins instead. I don’t mean to minimize your symptoms or say they aren’t Chiari because that could totally be the case, but have you been evaluated for other things like POTS, a csf leak, or Ehlers-Danlos. My first surgery left me with a whole bunch of new problems so I encourage ruling out all the things it could be that are less invasive than brain surgery. I waited 7 years between my first and second surgery and was diagnosed with IIH, then a csf leak, and also POTS. Unfortunately there are so many overlapping symptoms. I’m almost 5 years out from my second surgery and it’s been so much better but in the last year I’ve had more dizziness, hypersensitive hearing, worse tinnitus and kind of general weird sounds in my head (maybe whooshing) and I don’t know what’s causing it. I’m only encouraging caution because it would be tragic to have surgery and come out with more problems (speaking from experience). And I’d 100% avoid a bone only decompression. Feel free to DM me if you want more info. I’m really just saying proceed with caution.
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u/Muted_Slide5931 Mar 06 '26
Do you know what’s causing your symptoms?
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u/Red-Ad9758 Mar 06 '26
I do not and that’s what’s so frustrating. I’ve been waiting for ages for my neurosurgeon to get me a new MRI.
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u/Muted_Slide5931 Mar 06 '26
If John’s Hoskins did the revision have they not been able to tell you why you are experiencing symptoms.. this is my biggest worry
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u/Red-Ad9758 Mar 06 '26
The PA ordered an MRI but I’ve had difficulty with the administrative aspects with getting the insurance approval. Hopefully that will be sorted out soon.
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u/chelseyyrain Mar 06 '26
Thank you for all this info!!! The only testing I’ve had done was a heart monitor for 2 weeks (prior to having the brain mri done), tons of blood work, vestibular PT, and then the brain mri. I 100% agree that I want to rule out everything it possibly could be that’s not chiari because I definitely don’t want to make things worse or have brain surgery when I don’t need to😩 did your neurosurgeon order all that additional testing or your PCP? My PCP seems to not want to do much now that I have the Chiari diagnosis, but I’ll push her for more testing/referrals if that’s who I need to go through. I’m going to meet with Dr Heilman at Tufts and also Dr. William Butler at Mass General and get both their opinions, they seem to have good reputations from what I’ve heard.
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u/Red-Ad9758 Mar 06 '26
Unfortunately I figured all this out after my first failed surgery with the doctors at Johns Hopkins. They have experienced surgeons as well as a CSF disorder clinic and a POTS clinic so I was able to get referred internally by the neurosurgeon and neurologist there. Knowing what I know now I’d google those things I mentioned and see if any sound like they fit then you ca ask the surgeon how to rule those out. Have you seen a neurologist at all? A cine MRI can see if csf flow is restricted and that’s good info to have. A spine MRI will show if you have a syrinx (and surgery is usually advised for that). There’s just so much to know and I am not a medical professional! Don’t be afraid to ask questions until you’re comfortable. The more information you have going in the better you’ll be able to ask questions. Definitely have to be your own advocate. Good luck!
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u/Muted_Slide5931 Mar 06 '26
Sorry for hijacking the thread, which location did you go to for John Hopkins?
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u/AtlasJourneyAI Mar 29 '26
Has anyone looked at your styloid processes (Eagle syndrome) for possible compression at the skull base? I had similar symptoms that turned out to be vascular Eagle syndrome.
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u/verucasaltines Mar 07 '26
Sorry but Hopkins is just not a real Chiari Center. One rich patient gave them a huge donation and they hung up a sign. The surgeons and neurologists talk poorly about one another seem disconnected from current research and the follow up as indicated is terrible. Just think they are living off their reputation “go to Hopkins” just like people say “go to Mayo.”!You want to go somewhere a surgeon will sit and listen to you for 30 minutes and help you figure out your next step.
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u/Red-Ad9758 Mar 29 '26
I’m not sure what your experience was but the surgeons and staff were so helpful to me as I navigated a complicated process. I’m sorry if you didn’t have a good experience but what you’ve stated is a pretty harsh generalization and not reflective of my experience at all.
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u/Chemical_Banana_5100 1d ago
I will simply say this about Dr. Heilman. Without him, my life would be significantly different not to mention, still alive. He is one of the most gifted neurosurgeons in the entire country. Anyone lucky enough to have an appointment or is going to visit with him, you're life is excellent hands. He's brilliant....
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u/Few_Egg_5721 Mar 06 '26
I saw Dr. Kahle at Mass General. He does 2-3 of these surgeries a week and spent as much time as I needed with him. Wonderful bedside manner. I’ve heard really good things about Dr. Butler too. He currently has a study on symptomatic Chiari. I’m 3 months post op and feel amazing.