I saw Dr. Hackman for my ES consult yesterday. It started with his resident whose name was Dr. Lamm if I’m not mistaken, he was very pleasant and thorough with his questions. I got a chuckle when halfway through his intake he asked me if I work in medicine I utilized a lot of complex medical terminology and he literally said not a lot of people know the word “synkenesis”. I told him unfortunately my knowledge of cranioservical disorders isn’t voluntary and I had to educate myself due to not receiving any help from healthcare professionals. He was pleasantly surprised with me having a list of my symptoms printed out as well as a CD with my CT scan from 2 years ago and a flash drive with my 3D renderings available for them to copy and review.
Dr. Lamm and the girl who transcribed the appointment left to look at imaging and report to Dr. Hackman. When they came back there was someone with them dressed as a pink unicorn from head to toe. It was Dr. Hackman What a wonderful, kind and compassionate man, and not an ounce of arrogance like some of the other specialists of his level that I have encountered before. He actually listened to me, answered my numerous questions and when I did break down in tears at some point he was very compassionate and understanding. He ordered some lab work to test for Sjorgen’s syndrome due to some of the symptoms I mentioned on the intake form. Apparently this syndrome can cause weird neurological symptoms as well. He also agreed with my suggestion of ordering a new CT since the one I had was from 2 years ago. This time it was with contrast and they even worked me in the same day which I was so grateful for.
He told me that he obviously can’t guarantee anything with the surgery since he has had patients with extremely long styloids and no symptoms which shows they are not always the cause. If I’m not mistaken he said 80% of his ES patients experience relief from symptoms to varying degrees and 20% experience no difference in symptoms post op. He does remove to skull base but leaves a few mm back due to proximity to cranial nerves, which I personally still consider as complete removal to skull base.
I have a follow up with Dr. Hackman in 2 weeks over the phone, he wanted to spare me from driving since it does make my symptoms worse.
Overall I had a wonderful first impression of him as a doctor and as a person. His staff was great as well. I’m happy to answer any questions.
So pleased that you had such a helpful appt- just wondering why Dr Hackman was dressed as a unicorn though? He sounds like a very compassionate doctor, and good that you could have a CT done as well…I hope that he feels he can help you, & thank you for the info about success rates etc. that he does help you when you have your phone appt
PS there is a Ben’s Friends group for Sjogrens Syndrome if you want to have a look? Sjogren’s Syndrome Support - Support Community for Sjogren’s Syndrome (sjogrenssyndromesupport.org)
Thank you, I appreciate the link to the Sjorgen’s group. Halloween was celebrated yesterday so it wasn’t just him dressed up but some other employees throughout the hospital. It was a pretty funny sight though, and quite interesting to have a serious discussion with a Unicorn I must say it didn’t affect the quality and efficacy of the care provided at all. I’ll post more updates as I get more information on my case.
Thank you I did have the thought of taking a picture with him but it came to me after he already left and I didn’t want to bother him knowing how busy his schedule is. But yes it would have been great Maybe if I end up having a surgery with him I’ll ask him to dress as a unicorn for it and then get the picture taken
Did he seem to think ES & Sjogren’s could be related? My blood test is negative, but zero tear or saliva production plus other stuff, so they say Sjogren’s… they didn’t know about ES until a few weeks ago, I’ve still yet to see a surgeon.
@Brisbanite - a lip biopsy is the standard “tell all” in diagnosing Sjogren’s Disease. There is a Sjogren’s forum under the Ben’s Friends umbrella if you want to do some reading there. You don’t have to join to read posts.
I’m sorry your appointment w/ Dr. C has been delayed. Did you also try making an appt. w/ Dr. Annino or Dr. Hackman?
Nobody local was interested in doing a lip biopsy - go figure. I’d suspected Sjogren’s for quite a while, but it wasn’t until I went to Mass Eye & Ear for an eye exam that that doctor said there was a problem, I was creating no tears (no kidding)… I was then sent to a cornea specialist to try to save mine. The neck CT was pretty clear the glands that produce saliva were also calcified. So I’ve no idea, MEEI says Sjogren’s due to the eyes. I have no end of chronic inflammation at a massive level and my bones are crumbling beneath me, literally. None of it makes sense at all.
I do have an appointment with Annino, but I’ve not had great luck in any part of medicine including surgery for AVN in the Boston region, too great a risk to their statistics MGH ortho said & BWH just followed their lead. So I’m willing to see him, just not really counting on him (or rather the hospital system), and after everything I’ve been through here, not sure I would trust or believe him.
My ortho for AVN who was in NYC but is now elsewhere knows Dr. Constantino and highly recommended him, so I made an appointment with him, something seems to be going on. Now I’m looking at Hackman potentially… it’s ridiculous how far rare patients have to travel for almost everything.
Is Constantino still with Northwell Health? If so, in my ortho surgeons case, they made his office supremely difficult to deal with, it played a role in his leaving. My surgeon is world renowned & had little he could do or say in order to rectify what was going on in the office (as in none). I don’t know if Constantino has the same pressures or not, if so, I’ve seen it up close as the patient who complained directly to Northwell & their Mgmt director, so who knows, I’m willing to give grace.
Your situation is sooo sad, & I wish I could offer you better encouragement. I think you’re you’re amazing! You’ve been through so much, & you’re still fighting for improvement rather than giving up. That shows great strength of character & determination. I hope you have good family/friend support to help you along this path.
Has anyone looked at your parathyroid, @Brisbanite? We have had a few members who had calcification issues (different from yours but issues nonetheless) that were caused by a dysfunctional parathyroid. It’s one of the systems that controls calcium levels in the blood which can affect calcium elsewhere in the body.
I just Googled Dr. Costantino, & it appears he’s still part of the Northwell Health system. Peter David Costantino, MD | Northwell Health I’m sorry for what your orthopedist had to deal w/ & that it ultimately caused him to move elsewhere. Very frustrating for you. It’s also kind of you to extend grace to Dr. Costantino whatever his situation is. I’ll be praying for him & his office staff and hoping for a good outcome for all involved.
Please let us know how your appt. w/ Dr. Annino goes. I hope it’s encouraging.
Hi Isaiah_40_31 Thank you… I learned early, we had two roads we could go down, and the second one looked less appealing! I wish my support system was existent at all, as you can imagine, it wanes after a while.
I’ve never even heard of the Parathyroid, but my Calcium numbers are all around 9.5, 10 being the max of normal?
Welp, if it’s anything like what I saw, it could be the politics at work, I guess that’s best case scenario for Dr. C. I hope it’s nothing worse, like his health, that would be dreadful… Agreed, hope for the very best outcome. We don’t know what’s going on, maybe that’s for the best, albeit frustrating.
I will definitely report back, I’m not expecting much, so if anything I may be delightfully surprised, or not… If not, we have to find me an alternative!!! Perhaps Hackman.
Hi Brisbanite, Dr. Hackman didn’t specifically said ES and Sjorgen’s are related. I did note on my intake form dry mouth and dry eyes but I forgot to specify that dry mouth is mainly at night due to mouth breathing and dry eyes are mainly to headaches and the burning feeling they create, they’re not that dry per se and of course nothing like what you got going on, so sorry you’re suffering from extreme symptoms. Dr. Hackman mentioned that he has had patients with Sjorgen’s who presented with neurological symptoms like numbness, tingling, nerve pain and I do have those. Plus having another autoimmune (I have Vitiligo) predisposes you to having more. I don’t honestly think I have Sjorgen’s but I wasn’t opposed to having it ruled in or out. I hope you get help you need and I do recommend Dr. Hackman if you ever consider him as an option. I’m also open to any questions, will be glad to help as much as I can
Thank you @Elena, I definitely have some neurological symptoms going on, and I’ve already had 1 ischemic stroke (that was fun - said nobody ever)… I just want a surgeon I can trust like I trust my ortho. Anything less I would be shorting myself. I know what I deserve. Dr. Hackman is definitely on my radar, I was to see Dr Constantino, but that seems murky at best right now, although I really wish him well. I’m definitely not opposed to traveling to NC, where did you travel from if I may ask? What sorts of tests did you have before seeing him? I’ve only had a CT without contrast…
@vdm No, much before that, I just looked it up, the first time they checked my inflammation rate was Oct 20018 and it was 4 times normal, by February 2019 it was 7 times normal, I started with my AVN surgeries in June 2019 not realizing that chronic inflammation was a problem (thus I didn’t tell my surgeon), let me just say the first 3 surgeries went poorly afterwards. It all started together in the summer of 2018 that I know of, perhaps much longer than that, I had struggled to get anyone to take me seriously for a very long time.
I was lucky I didn’t have to travel too far as my husband has a traveling job and got transferred to NC right before my appointment. It’s a little over an hour drive from where we’re staying. My next appointment will be by phone since Dr. Hackman wanted to save me the drive due do driving affecting my symptoms. Prior to seeing him I only had a CT without contrast done 2 years ago. Up of my suggestion he ordered a new CT with contrast that I had done the same day while I was in Chapel Hill. They were very nice to work me in the same day schedule so I don’t have to come back another day. I had to go to the imaging center but it’s only an 8 minute drive from the hospital .
That’s good to hear, what did the CT w/contrast tell you above what the old CT indicated? I went through my scans, I had a scan in 2021, and the styloid process was missed, I’d had an ischemic stroke at the time, so I think they were looking for one thing and didn’t recognize anything else. Would have been nice to know… That scan was without contrast as well. I honestly can’t read them (beyond seeing the styloid now that I know where it is and basically what it looks like), they don’t look like what I see that has been posted where everything is so clear… What is your next appointment for? Will Dr. Hackman be considering surgery?
Usually a regular radiologist won’t pay any attention to styloids that’s why it’s important for this to be specifically noted on the order. I actually asked my primary to order it and radiologist did mention then but didn’t measure so I requested measurements and got an addendum to the report. The difference about having contrast is that it will show vascular structures like veins or arteries whereas CT without contrast will only show bones. Usually contrast isn’t needed unless you have serious vascular symptoms. Either way a regular CT of soft tissue neck without contrast is usually enough for an experienced ES specialist to diagnose combined with symptom history.
You can then convert your scans into 3D using a free program you can download online called Radiant. It’ll help you visualize the styloids better. My next f/u appointment is to discuss results of bloodwork and the new CT and decide how to proceed, and yes surgery was mentioned but we haven’t talked about any details yet, he wanted to test for Sjorgen’s first.
I’m very sorry to hear you couldn’t get any real help for so long… On some other forums/groups quite a few people noticed their symptoms started in 2020-22, and there was some speculation that they might have been triggered by the pandemic related causes, either the virus or the vaccine. So I just wanted to check with you about that one too.
Really sorry to hear that you had a stroke. I hope your recovery was complete. It’s hard to understand why doctors, checking for stroke, didn’t pay any attention to the styloid processes. Various scientists/neuro specialists talk about the elongated styloid processes possibly causing arterial dissections leading to strokes…