Documenting my journey

General
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I hear you, and I believe you. You body is telling you something. I know what it’s like to not be heard. It’s inhumane. Even Dr. McGregor (whom is wonderful) didn’t believe me. I recall 18 months ago being in his office at 102 lbs, in a wheelchair, with a feeding tube, holding my emesis bag…and him saying, “honey, your neurological status is stable, there’s nothing more i can do for you”. I was devistated. Fast forward 18 months…and now I’m 160 lbs, feeding tube removed, and am upright living life. The good Lord blessed me with finding the needle in the haystack. And by a miracle, I’m much better. Ironically, I emailed Dr. McMgregor a few weeks ago about my improvement and he actually responded. He was stunned at what all had transpired and was so pleased of my recovery.

So, my message is this…no matter how grim things feel, don’t give up. Let us help you sort through things, ventilate to us when you need to. And keep searching for answers. Your body is trying to tell you something isn’t right.

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Thank you so much!

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I feel for you @Bowser , it’s really hard dealing with one condition as you say, let alone several, and in reality not that long after surgery too…how long do the doctors think it will take for the HPylori infection to go? It does sound as if there’s some malabsorption going on if your blood tests show low protein intake, presuming that you are eating some? Would protein shakes help, although many of them have sweeteners in & I know that sets off mild gastritis for me…Or maybe some build up shakes for the elderly? I don’t know what does or doesn’t aggravate your stomach…
Praying that you’re able to find answers soon :pray:

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My protein intake had indeed been very low when I took the test, but I have been able to increase it with bland boiled chicken and fish. But I have to be so incredibly careful as if I eat a little too much or eat the wrong thing, things go backwards rapidly.

The H. Pylori antibiotic treatment regimen only has something like an 80% success rate. Even after eradication, you can’t retest for it until months after treatment.

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Make sure to take probiotic & prebiotic supplements (if you can) while on the antibiotic for H. pylori, @Bowser. All you need is to add C. diff to the mix & that can result from the antibiotic killing off too much of your good intestinal bacteria as it kills the bad (H. pylori).

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Yes I am eating plenty of low fat yogurt, boiled vegetables and a probiotic supplement (VSL#3)

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@Bowser - I’m glad you’re on top of taking care of your good gut bacteria! :blush:

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I found one case in the literature similar to @1speechpick !

@KoolDude @Jules @Isaiah_40_31

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Thanks for that!

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Very interesting, @Bowser. Do you think this could apply in your case except just CN X is involved? I hope you can get imaging to check out the situation with your vagus nerve!

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@1speechpick Did you have headache and facial pain exclusively on the right side of the face, where the surgery was done? Or did you have “crossover pain” on the left side as well?

Most of my facial pain is on the left but I do get it on the right too. From a diagnostic perspective, will mentioning crossover pain make me less likely to be diagnosed with TN?

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Hi Bowser: I did not have crossover pain on the left side. I had fairly “typical” right sided trigeminal pain pattern. My guess is left sided crossover pain could possibly fall into the “atypical” TN pain pattern. I can only speak from my personal experience. But Dr. McGregor spent extensive time interviewing me about my symptoms. He said my symptoms sounded suspect for “typical TN”, which prompted him to do a fiesta brain MRI. This confirmed TN as well as multiple other compressions. From my layman’s knowledge, atypical TN is generally regarded as a medical management issue (medication), not a surgical one. Also, as a side note, most neurosurgeons will not operate unless the MRI shows evidence of trigeminal nerve compression.

So, basically you NEED the fiesta MRI for anything to rule TN in or out. Sometimes I think when discussing symptoms, simple is best and less is more. Hit the highlights and the main points. Basically the office visit is to determine wether there is a need to look deeper, and sometimes too many details can be unnecessary and confusing. And it’s the fiesta MRI that will determine if there are compressions that need addressed.

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Great advice @1speechpick, thanks :hugs:

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I have been angling to get a consultation with Dr. McGregor, who via the Destination Medicine person initially recommended consulting with another doctor such as Dr. Old who would be better equipped to assess my Eagle syndrome.

I sent back a message that I was specifically trying to investigate trigeminal neuralgia and vagoglossopharyngeal neuralgia and so would like Dr. McGregor himself to look at my 3D CISS BRAIN MRI. I haven’t gotten back a reply yet.

There was a week in the middle when I was doing decently well, not eating tooo poorly, sleeping well, and felt I could hold on until a solution could be found. Unfortunately I got a new problem (lower back pain and leg pain) because I foolishly did some jump rope while knowing I have a herniated disc in my lower back. The disc has never bothered me too much but I have had to use custom orthotics to walk for longer distances for quite a while. A few sessions of jump rope made the pain worse than it has been in ages. I hope it gets better soon and that my disc didn’t get permanently worse or anything.

The lower back issue also seems to have worsened my gastric symptoms! I get huge buildup of gas in the bowels now, when previously I didn’t have bowel problems and the problem was exclusively in the stomach.

I’ve sent another message to Dr. Kamran imploring him to look at the brain MRI again. I hope he takes another look. I sent him the study about vagoglossopharyngeal neuralgia.

One symptom that’s been tremendously difficult to communicate to others is how out of control my anxiety and mood problems are and how involuntary they are. We know that they stimulate the left vagus nerve for depression. In the same way I feel like my personality has changed in ways that are out of my control due to how the left vagus nerve has been affected. I generally felt that I was a resilient person and I feel like I could deal with this situation if I could hold on to who I am. If I didn’t have anxiety and could sleep well. If I could find joy in the small things. In some ways I miss myself and who I used to be.

I have never been an anxious person. The anxiety and insomnia has been strange and alien and out of my control.

Playing video games and reading novels were some of my biggest sources of joy but my worsened photophobia has made playing video games impossible and I don’t have the energy fo focus on a novel a significant portion of the time. I miss the little things.

It’s all a little bit too much. How can things deteriorate this quickly? It feels like cosmic injustice. I wish I had been more careful and not added the lower back issue on top of everything else. That has to get better.

Still, the only reason I’m making this post is to seek support. And that means there is still hope left. I can’t give up now.

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@Bowser - You know we are always here for you! I’m very sorry about your back. I have a similar problem (L5-S1 disc bulge), & the pain in my glute, hamstring, calves & feet got so bad I finally saw a physiatrist who recommended cortisone shots in that area of my back. It was done under a fluoroscope so he could precisely place the medication in my back, w/ one injection on each side of my spine. This was done in July 2023 & has helped me very much ever since. I’m starting to feel some pain coming back now, but that’s a good long time for that medication to have helped. I must say I did reduce the intensity of my exercise & the distance I hike since I had those injections, & I think that helped, too.

I think you may be on to something as you search for an answer about trigeminal neuralgia at the ophthalmic branch of the trigeminal nerve is the one that causes light sensitivity. Clearly the vagus could be the basis of your anxiety which would play into your insomnia. I think your situation is extra difficult because you do get little breaks where you feel good & that gives you hope that your body is healing & returning to normal but then a little thing sets it back into pain & dysfunction & that’s terribly discouraging! I am glad you get those “rest periods” where the symptoms calm down even if they don’t last.

@1speechpick mentioned that Dr. McGregor retired so I don’t know if you’ll be able to work with him or if you’ll be referred to someone else. Some doctors retire only nominally but continue to work on cases of interest to them sort of behind the scenes. Let’s hope/pray that’s what Dr. McGregor is doing, & that he will take your case as it does seem complex.

I hope you hear something back next week. Keep checking in w/ your Destination Medicine person. Dr. Old has a good reputation, too, & might be a good doctor to start with if you can’t get an appointment with Dr. McGregor.

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I’m so sorry for everything you’re going through!!

I’m unsure if a 3D CISS Brain MRI is the same thing as a fiesta MRI, or if one provides more detail than the other. Can anyone in the group comment on this please?

I’ve found communication with OSU to be very difficult. Each physician is highly specialized and only does certain things, which means your case ends up getting tossed around to different people until they actually figure out what’s wrong.

Dr. McGregor used to be the primary TN and shunt surgeon at OSU. I have both TN and a VP shunt and he was my neurosurgeon. But he retired from this capacity in approximately June of 2023. It’s my understanding that he took a few months off then came back part-time to OSU in a different capacity but I’m not sure exactly what capacity. In other words, I don’t think he’s doing TN, MVD, shunt specialty anymore. From what I’ve heard, Dr. Old is one of the OSU surgeons that does address Eagle’s Syndrome.

One thing that helped me tremendously with communication at Ohio State is having a neurologist within the Ohio State system, Dr. Kevin Weber. He has been my internal (inside the medical system) advocate. He’s technically a headache specialist, but for me he’s been the generalist that helps tease out symptoms then place appropriate referrals when needed. He’s the one that referred me to Dr. McGregor and has communicated with other doctors within the system on my behalf many times. If you’re having headaches, maybe you could start there, and then work your way inward with referrals? In my personal experience, I couldn’t replace having a voice/advocate from within the system. I’m just hoping that Dr. McGregor does look at your case/scans and gives advice. He’s such a kind man. But again, I’d be surprised if he’s still doing TN and shunt referrals, because if so, he would still be my neurosurgeon.

I love Dr. McGregor. He’s surgically one of the best and one he’s of the kindest people you’ll ever meet, but he’s human and not perfect. And with him, you do have to be willing to be the squeaky wheel. I initially had an LP shunt that was placed by him. He looked the other way when I was having low brain pressure symptoms and CT brain scans showing low pressure. His explanation was I was still adjusting to the LP shunt. I was bedridden and declining but he said there was nothing more he could do. Finally I had an osu hospitalization with an MRI ordered by Dr. Weber that showed evidence of possible leak. Even then, Dr. McGregor said he didn’t think there was any way I could have a leak from a shunt he had placed. I forwarded my MRI scans myself to Duke and I emailed Dr. Gray myself. And by the grace of God Dr. Gray looked at my scans, emailed me back because she saw my leak on the MRI immediately, and had me in to the Duke CSF clinic within a week (normally a 6 month wait). During CT myelography at Duke Dr. Gray found one of the largest lumbar CSF leaks she’s ever seen, right along the insertion line of my lumbar shunt catheter. Dr. Gray tried twice to patch the leak but was unsuccessful. I was then sent back to OSU for surgical repair of the leak. Dr. McGregor gave me a choice of re-attempting a patch at OSU or having surgical leak repair with another OSU physician. I chose the surgical repair. Good thing I did. My new neurosurgeon said the leak was so large that patching would have never worked. It took 2 surgeries and vp shunt placement but the leak was repaired.

Please understand, I don’t fault Dr. McGregor for the leak, it’s simply a risk of the surgeries I had. I fault him for looking the other way when I complained of low pressure symptoms and had radiological evidence of low brain pressure. But also, in fairness to Dr. McGregor, at that time we didn’t know about the medication toxicity situation I was having. But at the end of the day, OSU isn’t really equipped to diagnose CSF leaks, so I had to go outside of the system for help in diagnosis. Medicine has become SO SPECIALIZED!!! Dr. McGregor did a BEAUTIFUL job with my TN surgery and I’ll always be grateful for that!

Bowser, what is “Destination Medicine”? That’s a new one for me!

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That’s the department by which international patients can seek care in the US!

And yes a 3D CISS MRI is the same as a FIESTA-C MRI.

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Thank you, Bowser! I didn’t know that CSS and FIESTA MRIs were the same thing! Thank you for clarifying that for me! And now I know what Destination Medicine is! What country are you located in?

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I’m sorry that things have gone downhill for you, and that even the small things are becoming difficult…like you say, it’s really hard to cope too when you’re so tired. I’m sorry, I can’t remember which medications you’ve been on & tried? I take amitriptyline for nerve pain, and it does help with sleep as well, if you haven’t tried that maybe it’s worth a go?
I hope that the back pain settles down soon; have you had physiotherapy for that before? Exercises to do which help? If not then maybe that’s something you could get help for locally…
With the photophobia, tinted glasses might help? You can get glasses specially made to suit you, for example rose tinted ones can help cut out some wavelengths of light- this study mentions about them & how the Trigeminal nerve is often involved with photophobia:
Photophobia: Looking for Causes and Solutions - American Academy of Ophthalmology
So frustrating that you’ve been able to get the MRI showing which nerves are affected, but that you can’t get the treatment for it! Sending you & hug, & praying that things improve for you :hugs: :pray:

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