Finally Something to Go On

So far this year already I have had 8 PT visits, a chest x-ray, a new cervical x-ray, a follow-up EMG, and finally a shoulder MRI yesterday. The EMG came back within normal range which meant the Cubital & Carpal Tunnel surgery I had back in August worked to relieve the nerve compression I was dealing with (yet I still have nerve symptoms). In a nutshell the shoulder MRI found an incomplete rotator cuff tear and moderately severe AC joint degenerative arthritis.

I was really bummed the EMG was "normal" and started wondering if I was going slightly crazy - it really messed up my mental health for a few days because after over two years they aren't giving me a good diagnosis and I'm so exhausted over all this. So when I read the MRI report this morning and saw that there is actually something to see made me feel a bit more validated.

Other good news is that I got accepted as a patient at the Mayo Clinic and will be able to get an appointment. I still believe there is other stuff going on and really need a second opinion from a team that works together across different specialties all in one place. It is so hard for me to have different specialists in different networks; I'm constantly having to get records and images sent to various medical systems. It's like a part-time job keeping track of all of it.

That is good news! I am intrigued by the Mayo acceptance--I have been dealing with similar issues for a year now with knee and lung issues, with multiple abnormal xrays and MRI's but no one willing to put it all together. Please keep us posted--I am so glad you have been able to get at least one answer and make progress--it is completely exhausting and you do start to feel very gas-lit (lighted? whatever).

Sioux, glad you have answers. Looking forward to what happens with Mayo.

Getting into the Mayo Clinic was a bit of a process: I had made the call last November and they start an account for you with a special case number. Then you have to send all your medical records and imaging to your account and then it goes under review by the appropriate team. So it me a little over two months to hear back. The compiling of of the medical records was a bit of a process, as I have been seen in several different systems by several different specialists,

My chief complaint is not that I feel like I've been gaslighted per say; rather it is the narrow mindedness of medical specialties now. I have had to take matters into my own hands at times to get the necessary referrals. And of course in New Mexico, everything takes SO LONG. So much waiting. And waiting, and waiting some more.

I forgot to add that on my latest cervical x-ray, they finally (!) confirmed that I have extra cervical ribs that may (or may not) be contributing to some of my symptoms. I have told that to just about every doctor I've seen lately and mostly they go hmmmm, and move on. I was told 25 years ago back in Michigan that I had these and also that I was diagnosed with Thoracic Outlet Syndrome. I declined the surgery to remove them at that time because it seemed that the outcomes were not that good. But the neurologist I just saw last week for the EMG said TOS was kind of a bullshit diagnosis, so maybe that was a bit of gaslighting on his part. What do I know, I'm only a 62 year old woman...

So glad to hear things are progressing for you, SiouzQ! Here's hoping that there will be continued positive outcomes with the Mayo Clinic!

Turns out the torn rotator cuff and AC joint arthritis is somewhat of a nothing-burger, according to my orthopedic guy. Nothing he would do surgery for, at any rate, so it's back to square one. At least Dr. B doesn't dismiss me and my concerns, and is glad that I have that Mayo Clinic appointment in April. I will have a follow up with him after that.

I have a follow-up appointment with my other ortho doctor tomorrow in Albuquerque (the one who did my surgery last August). I am going to give her the paperwork from the law firm who is filing my Disability Claim for me.

To say the least, I have kind of had a mental and emotional breakdown in the last week because I really wanted to pin all the problems I've been having with this left arm to having a torn rotator cuff and get the surgery and be done with it. It's also hard not working, but I have so little energy and gumption right now due to depression I'm not sure I could work right now. I rarely get super-depressed but I am now. I am seeing a doctor about it next week.

Siouzq, i am here wishing you well. That is all that I and we here can do. I am glad you are writing here and keeping us up-to-date.

I so hear you! I have been trying all year to get rid of pain and follow multiple conditions and scans and MRI's, and it is so stressful dealing with these things and fighting to get some answers. I really think you are on right track with Mayo, so there is definitely light at end of tunnel.

My doctor prescribed Celebrex last week and it is the first thing that has touched the pain and it has given me more range of motion--I have bone on bone arthritis but other things like meniscal tears and lesions. I was astonished and kind of mad no one suggested it a year ago.

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Originally Posted by Tybee

I so hear you! I have been trying all year to get rid of pain and follow multiple conditions and scans and MRI's, and it is so stressful dealing with these things and fighting to get some answers. I really think you are on right track with Mayo, so there is definitely light at end of tunnel.

My doctor prescribed Celebrex last week and it is the first thing that has touched the pain and it has given me more range of motion--I have bone on bone arthritis but other things like meniscal tears and lesions. I was astonished and kind of mad no one suggested it a year ago.

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Celebrex and Vioxx (Merck's drug in the same class--COX-2 inhibitor) were one of the first products I ever worked on in market research. It was considered a great, groundbreaking drug. My mother-in-law went on it for her arthritic knees and loved it. But then Pfizer and Merck ran into trouble... both Celebrex and Vioxx launched at about the same time, but Vioxx was pulled soon afterwards because of the risk of heart attack and strokes. So, by association, a lot of doctors stopped prescribing Celebrex also out of fear of class effect (the FDA did not pull Celebrex off the market but gave it a black box warning.) So both drugs lost doctors' faith and top-of-mind prescribing.

But, I'm glad it's working for you! Did your doctor describe the potential side effects and risks with you?

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Originally Posted by catherine

Celebrex and Vioxx (Merck's drug in the same class--COX-2 inhibitor) were one of the first products I ever worked on in market research. It was considered a great, groundbreaking drug. My mother-in-law went on it for her arthritic knees and loved it. But then Pfizer and Merck ran into trouble... both Celebrex and Vioxx launched at about the same time, but Vioxx was pulled soon afterwards because of the risk of heart attack and strokes. So, by association, a lot of doctors stopped prescribing Celebrex also out of fear of class effect (the FDA did not pull Celebrex off the market but gave it a black box warning.) So both drugs lost doctors' faith and top-of-mind prescribing.

But, I'm glad it's working for you! Did your doctor describe the potential side effects and risks with you?

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No, she did not. Hmm.

There are side effects and risks for every drug. Some are more benign than others, of course.

Well, the risk is relatively low. https://www.nejm.org/doi/full/10.1056/NEJMoa050405.

But a black box warning ain't nothin'

Very interesting.

I finally had my referral appointment this past Wednesday with the vascular surgeon at UNM who specializes in Thoracic Outlet Syndrome - he confirmed it was of the neurogenic type where the main nerves that run from your cervical spine (around C-7 I think) gets trapped in that tight little space along with the artery and vein that supplies the arm. With me it is due to a complete extra congenital cervical rib that is attached to the first rib - I was first diagnosed with this way back in the late 1990's when I was working as a department store display person. It was a very physical job where I was often on ladders reaching way over my head to hang things; I remember the excruciating pain in my arms that I ended up in. My arms would go numb and throb.

Back then the surgeon I saw was very eager to cut them out (I have a smaller, incomplete rib on the right side as well). I declined to do the surgery as my dad (who was working as a statistician in the School of Public Health) looked up the studies of the efficacy of that rib removal surgery and saw that the outcomes were not that favorable. Plus, a friend of my MIL who was a potter had that same surgery with that surgeon and she was messed up for life and never could go back to being a potter. As a single parent at the time, I declined the surgery and ended up getting a different job. As long as I didn't do a bunch of activity with my arms over my head I could deal with it.

Now I'm thinking that over all the years of guitar-playing and returning to silversmithing, in addition to the aging process. it has probably created a lot of scar tissue that is the main culprit of my pain and disability. And I am fairly disabled because of it - pretty much can't do anything using my left arm anymore (including typing - I'm getting pretty fast with just my right hand though). Can't knit, haven't played guitar in a few years now, and of course silversmithing is out of the question.

So that all being said, what am I going to do about it? It's a pretty major surgery and involves a stay in the hospital for a minimum of three nights and the healing process can be rough. The age factor could work against me as far as the desired outcome (apparently this surgery is quite successful for much younger people). There could be complications and I'd end up even worse off. I could go on and on here...

Good news is that my appointment at the Mayo Clinic is next week - I am being seen initially in the neurosurgery department because initially this was thought to be a cervical spine issue. Between the vascular surgeon I saw in Albuquerque the other day, and being seen at the Mayo Clinic, I feel like now I will be able to make a much more informed decision. Also having this concrete diagnosis will definitely help with my SSDI case, which is currently in the pending stage as my medical records are being reviewed.

I just want to add that the appointment with the vascular surgeon the other day went so well - I finally felt like I was being heard and VALIDATED, which is worth it's weight in gold! The intake PA was such a good listener and I never felt like he was rushing me as I spun my tale of woe. The doctor was great too - again, just having someone who listens is SO paramount to the doctor/patient relationship.

Wow, SiouzQ, that's definitely a good news/bad news post. Thanks for the update. I am so glad that you were well-treated by the vascular surgeon and team, and I'm really glad you get to have a second/enhanced opinion by the Mayo Clinic! I'd say you're in good hands.

I know that a lot of the media pushes stories about the disabling conditions of office workers who do nothing but sit on their butts all day, but I've also seen my neighbors in Vermont who have had very physical jobs and the toll it has taken on them. "Use it or lose it" is true, but it's also true that our bodies are not much different from car engines. The faster you go and the harder you push, the sooner you need replacements.

I really hope that you find a resolution to this that you can life with.

Glad you had such good doctor appts. Some good news.

Thank you so much for keeping us posted. I think you are on the path to getting better! I am excited you are going to Mayo. I am looking forward to hearing what they tell you. My sil went there for her asthma and they told she doesn't have asthma at all, after 40 years of being on steroid inhalers. She had something else. I find it weird no one did spirometry on her before the mayo, over the years--it's pretty easy to pick it up on the spirometry. So good for you for persevering and getting better doctors.

My celebrex experience has pointed me towards the value of more intervention, not less. I hear what Catherine said but think the warnings about cardiovascular implications work both ways, because being unable to move and being a painful lump lying in bed isn't good for my cardiovascular system, either. Thus I would be opting for more intervention, not less, and you are younger than I with lots of years to heal. I had a hernia operation about 17 months ago and am just now starting to feel normal in that part of my body, so healing goes on a lot longer than I would have thought. We should not give up on things just because we are 60 or 70, that's too young to live with some of these things. That's my opinion, anyway.

Wow, that is a lot for you to process! Sending prayers and positive energies for a good outcome! Thanks so much for sharing and updating.

SiouzQ, What a relief to have been listened to and validated. I certainly hope the correct diagnosis and second opinion at Mayo will help you make the decision. Sending good, healing thoughts.

Back from my whirland trip to Phoenix last week - something like 1200 miles in four days; I'm feeling every mile of it yesterday and today!

Good news is that I received the confirmation that I was looking for - I got an hour long consultation with a neurosurgery specialist (who acts as the gatekeeper for the actual nuerosurgeons). Prior to my appoinment, the medical records that I sent to them initially (plus all the new records I brought with me) were looked over, my medical history was verbally gone over and then the physical exam was performed. The examining rooms are very well-appointed, and have very large-screened monitors on the wall so you can see your x-rays and MRI's projected quite large - it was very easy to see my skeletal structure and those damn extra ribs!

She then ruled out that my issues do not seem to correlate with any cervical spine issues (even though I have severe arthritis at C-5 and C-6, there really isn't anything structurally impinging my spinal cord) and that she positively suggested that I do indeed have neurogenic Thoracic Outlet Syndrome. She also noticed that I have the partially torn rotator cuff and severe arthritis at the AC joint (which my shoulder guy in Santa Fe said wasn't a big deal and that it wasn't something he would do surgery for). This nurse was surprised he told me that, suggesting she thinks it is a bigger deal than I was initially led to believe.

So her reccomendation was to route me to their TOS surgeon at the Mayo for further investigation and a treatment plan. But upon a lot of thought, the logistics of being treated there in Phoenix are just too much. It is too far, and will cost us too much money in travel and lodging, plus all the missed work for my husband. Riding in the car for that long is just too much for me; I can't imagine what it would be like if I had to do that post-surgery.

So what happens next? I have a lot of follow-up appointments here in NM coming up in the next few weeks where hopefully I will be given a list of treatment options and the costs/hazards/potential benefits going forward. It's going to be quite the process to mentally weigh all of it.

It feels like I've climbed the summit of the first peak (by finally seeing the actual specialists and getting a diagnosis) only to find a huge moutain range with many difficult routes hiding behind it.

SiouzQ, Thanks for the update. What a journey! You've climbed the initial mountain to relief...hoping the others are navigable.

I am glad you got some answers. It is a shame Phoenix is so far, but you have made great progress and I think things will go in a better direction now because of this work you are doing.

Thanks for the update! Glad to hear you got some answers and here's hoping that you will be able to get things properly addressed!!