Improvement of severe ME/CFS following surgical treatment of cervical spinal stenosis

pattismith

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I agree with @Gingergrrl and @rel8ted, one neurologist I saw in an hospital was my worst experience.
I would advise to see a neurosurgeon, they are specifically dealing with spinal stenosis.
I plan to see one next month.
If you see one, you will have to pay attention to insist on the myelopathy signs you have.
 

rel8ted

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If you see one, you will have to pay attention to insist on the myelopathy signs you have
It is not something they normally look for and only want to rule out LEMS, MG, MS, etc. I have seen 4 and none of them was willing to even put forth the effort of referring to a neurosurgeon. Maybe you will have better luck. I had to self refer to my neurosurgeon and ask my PCP to send office notes and a letter.
 

starlily88

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I am assuming that he meant a neurologist who works in a University setting in academic medicine (but I could be wrong). Can you ask him what he meant and if he has any potential referrals? My worst doctor experience of all time was with a Neuro in academic medicine but of course every doctor is different. I also saw two other Neuros shortly after that who were not in academic medicine and they were (almost) as bad.
Gingergrrl - Yes you are 100% correct. I was shocked he did not know anyone to refer me to - since I went to him due to his reputation of finding many other diseases causing feet, hip problems. He meant a "Hopkins" dr. When you live here - you avoid Hopkins drs unless you are facing death or in my case loss of vision in one eye (I love my NeuroOpthamologist at Hopkins).
But I asked him at least 4/5 times "don't you have any Neurologists you refer people to?" Nope........... Ben Carson (yep that one) - talked to me about my Trigeminal Neuralgia - and sent me to a Neurologist. Besides hitting my knee, and watching it jump, and putting me on Baclofen - it was an awful visit, and did not help.

I have a Neurologist - who only does Migraines and Sleep disorders. She rarely knows any other neurologists.
I just see this as a dead end - My worst experiences ever have been with Neurologists and Urologists.
Thanks Starlily88
 

starlily88

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I would be less inclined to care about the “academic” part & more inclined to look for a specialist in cervical stenosis.
2 important points here
1. A podiatrist told you that you have stenosis. Unless he has a working relationship with someone he is referring to, that is likely to be called poo-poo
2. He make be wanting you to see the wrong specialty. It happens. Neurology normally deals with nerve disorders. Neurosurgery, physical therapy, or possible an orthopedic surgeon with spine expertise seems more viable.
Just my 2 cents. Like @Gingergrrl, I’ve had more than my share of awful neuro visits.
Yes I feel the same - we all see podiatrists as not drs, but this guy wrote a book I skimmed, and is very bright. I do indeed have Notolgia Paresthetica and Thoracic Radiculopathy, Autoimmune nerve disorder, have had bad problems in my neck, and I can't feel my left hand pretty much anymore. I have been to my Orthopedic surgeon, and he said all my problems are neurological - he operated on my left thumb, replaced joint, and put plates in my left arm after severe break - plate had to be removed, and I was left with nerve problems.
My Physiatrist has tested my left hand/arm, spine - over many visits, and documented that my nerves are pretty compressed by my spine...............
I think PT would be the 1st step I would do, but have to get a referral - and that means a neurologist.
Thanks for your input Starlily88
 

starlily88

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I had to self refer to my neurosurgeon and ask my PCP to send office notes and a letter.
Thanks rel8ted - my problem is I have no Internist for referral (21 years with one Internist, and he dropped 1/3 of his patients April 2018). So I have no one to refer me. I have called every hospital, every internist - no one taking new patients.................but will try anyway Starlily88
 

pattismith

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Thanks Pattismith - neurosurgeon sounds good. I know zero about myelopathy but will learn, starlily88
Neurosurgeon are looking for symptoms specifically related to radiculopathy (compressed nerve) and myelopathy (compressed cord). So when you will see one, you will have to focus on the sign that will get interest for him.
Loss of skin sensitivity is one if the sign they are looking for.

I recommend Dr Nabila Ebraheim who published a lot of videos for educational purpose

 

Gingergrrl

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It is not something they normally look for and only want to rule out LEMS, MG, MS, etc.
And sometimes it can take a miracle for them to even want to rule out those conditions :confused:

Gingergrrl - Yes you are 100% correct. I was shocked he did not know anyone to refer me to - since I went to him due to his reputation of finding many other diseases causing feet, hip problems.
How strange (and annoying!) that he would mention seeing a Neuro in academic medicine and then not having anyone to refer you to!

I think PT would be the 1st step I would do, but have to get a referral - and that means a neurologist.
I was going to ask if your PCP could refer you to PT (vs. a Neuro) but then I read below that you don't have a PCP right now. I think any kind of doctor can refer you to PT though (not sure about a podiatrist though o_O)
 

starlily88

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How strange (and annoying!) that he would mention seeing a Neuro in academic medicine and then not having anyone to refer you to!
Yep it's like seeing your Dentist, needing a Root Canal, and he has no Endodondist to refer you to, how utterly dumb! I just got a new Cardiologist, new Urogynecologist, new Hematologist/Oncologist, and have my Breast cancer surgeon - but good luck is I have 2 appointments in a month with 2 Internists, but I just can't ask them for referral upon meeting them. So will wait for my Endocrinologist in October for a Referral (been with him 25 years).
 

starlily88

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Neurosurgeon are looking for symptoms specifically related to radiculopathy (compressed nerve) and myelopathy (compressed cord). So when you will see one, you will have to focus on the sign that will get interest for him.
Loss of skin sensitivity is one if the sign they are looking for.

I recommend Dr Nabila Ebraheim who published a lot of videos for educational purpose
Thanks so much Patti for the recommendation and video. I do have big problem with my balance, people run to help me all the time - but not sure my gait is off. I have lost most "skin" feeling on my left thigh 5 months ago, it just has no feeling - like my skin nerves are gone. How do I focus on signs that will interest him? Thanks starlily
 

pattismith

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I misunderstood - somehow I thought you were seeing neurosurgeon at Hopkins. This Dr. Ebraheim is an Orthopedic surgeon in Toledo Ohio? Thanks but am confused. I can't travel, too sick, but thanks Starlily
sorry, I wasn't clear, I just recommmend you to have a look at his videos on cervical myelopathy/radiculopathy (C3 to T1), because they are very educationnal. In these videos, you will understand what signs the neurosurgeons are looking for.
Of course I do not recommend you to consult with him, as he is an orthosurgeon, not a neurosurgeon.
 

Gingergrrl

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Yep it's like seeing your Dentist, needing a Root Canal, and he has no Endodondist to refer you to, how utterly dumb!
I agree that is weird!

I just got a new Cardiologist, new Urogynecologist, new Hematologist/Oncologist, and have my Breast cancer surgeon - but good luck is I have 2 appointments in a month with 2 Internists, but I just can't ask them for referral upon meeting them. So will wait for my Endocrinologist in October for a Referral (been with him 25 years).
Good luck w/all of your new doctors! If you end up liking one of the new internists where you think you will stay with that person, I would think it is okay to ask about the referral? But I understand waiting to see your Endo who knows you for 25 years. Is it possible to contact your Endo prior to Oct to inquire about a neurosurgery referral or PT?
 

starlily88

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If you end up liking one of the new internists where you think you will stay with that person, I would think it is okay to ask about the referral? But I understand waiting to see your Endo who knows you for 25 years. Is it possible to contact your Endo prior to Oct to inquire about a neurosurgery referral or PT
Thanks good idea- I will ask one of them. It's just that they won't have my records..........but will still ask. And great idea - I can write to my Endo - to get referral. Monday see my Breast Cancer surgeon - he will know the best Neurosurgeon in town, get all my referrals from him..............hmmm, he could refer, he is a surgeon:thumbsup::angel::hug:
 

starlily88

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I agree that is weird!
Good luck w/all of your new doctors! If you end up liking one of the new internists where you think you will stay with that person, I would think it is okay to ask about the referral? But I understand waiting to see your Endo who knows you for 25 years. Is it possible to contact your Endo prior to Oct to inquire about a neurosurgery referral or PT?
Monday had appt with Breast cancer surgeon. Been to him 3/4 years. He does not know my medical history. He is not aware of how sick I am with ME/CFS, etc - just not relevant. He wasn't surgeon that did my breast cancer surgery - and been with my other surgeon for last 20 years.
He has office in Hospital. Most hospitals have installed EPIC - shared medical information

So this new breast surgeon who is very bright, has been all smiles when he sees me, greets me warmly, acts very different today. Barely greeted me, didn't smile, or shake my hand. Ran out to see other patient for 15 minutes - then announces "see you've been pretty busy seeing other doctors"
Can't recall exact words because it was shocking to me until I recalled the new EPIC system.

I became defensive, and started to defend myself, but stopped it, as I realized he was pissed at me probably because he likes everyone to do mammogram that day across hall, and I returned to my cancer radiologist of 30 years - once I saw his radiologist made huge mistakes on last year's mammogram.
I did not email him about this, until this year - to ask him if he minded that I go to my Radiologist - who happens to be the best breast cancer radiologist in the State. He told me "this could have been "fixed" if you had emailed me last year' - which I found negative - I would never bother him with a dumb radiologist - they are just techs, in this case, a very bad one...................

Why do drs seem to turn on me when I have to do the right thing to save getting cancer again?
Starlily88