My Story: Finding the Right Doctor

My Story: Finding the Right Doctor

I’m a dentist who lives in the suburbs of New York City. I’ve had CRPS for twenty years. It happened when I had surgery to fix Radial Tunnel Syndrome in my right elbow. (Similar to Carpal Tunnel Syndrome of the wrist). I had a lot of scar tissue in my elbow that was compressing my nerves and stopping me from practicing. Since that surgery, I’ve been in constant pain.

Mark Helfand, DDS

In all that time, I’ve had two main doctors that treated my pain.

They couldn’t be more different.

The first was a pain specialist at a major hospital. He was the typical specialist. His waiting room was always crowded and I never waited less than 45 minutes to see him. He heard enough of what I said to increase my pain meds but never really listened enough to help. He prescribed plenty of pain meds, but I was still in agony and too “doped” up to function. It’s a long story, but I had an intrathecal pump inserted in my abdomen that pumped fentanyl into my spine. It wasn’t helping and he kept ignoring me when I asked to have the dosage increased. We had a falling out when he forced me into rehab but then increased the dosage of fentanyl in my pump. I was in rehab for a week but still was getting fentanyl the entire time. It made no sense.

Then my luck changed.

I told my primary care doctor my story. We had known each other since we did our residencies in the same hospital. He offered to take over my pain control. He had always been the Marcus Welby type doctor and continues to be to this day. In all the time I’ve been his patient, I’ve never been rushed and only had to wait twice when he had an emergency. While my first “doctor” was a nightmare, my current doctor is a Godsend. I consider him to be my angel. He listens to me and we discuss what to do next. When the opioid crisis occurred, nothing changed. He never mentioned reducing or stopping my fentanyl. In fact, we just increased it. I’ve even told him that if he feels uncomfortable writing prescriptions for fentanyl for me, I’ll understand. I don’t want to get him in trouble. Every time I tell him, he tells me not to worry because he isn’t concerned. Given everything I’ve read and the state of prescription medications, I consider myself very fortunate to have such a great doctor.

I’m sorry for those that don’t.

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Authored by: Mark Helfand, DDS

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J.D.

I guess the old saying “If you have nothing nice to say about someone then just say nothing” hasn’t been heard by everyone.

GEORGE

Jamie,
RIGHT ON THE MONEY

Kathleen Ganley

To Deb: I don’t know if you will come back and read this, but I will ask you anyway. In your post, you said you only get 2 pills per day, 30 mg in total or 60 mg? In either case, the cut off is 90 mme. Why are you not getting the 90 mme? What state do you live in? I wonder if it differs from state to state.

Sherrie

So, I too have a pain pump with dilaudid. The dose is increased at each appointment but no luck to this day. I’m thinking going back to fentanyl patches might be the answer because I did get relief however I’m worried about the opioid crisis and if they will be able to do this based on my “recommendation”??? Needless to say I’m scared. Thank you for your article. Finding the right dr is key!!

Jamie

You’ve discovered your privilege. Your a white male dr. Of course you’re going to be given what you ask for. You’re a white male dr. Come back to me when you’re not a dr, not a man and/or discriminated against because of your race which is the problem not of us face. Its not that the drs are bad – they’re just more concerned with staying off the DEA’s radar than patient care.

I cant believe this was even published. It reeks of “I got mine sorry not sorry” and just leaves the rest of us in the cold shadow of your celebration.

Theresa L. Negrete

Wow! I wonder how RARE he is! I used to have a wonderful Dr., now not so much. I refuse to be treated abusively by Medical Professionals any longer. I fall into a few discrimatory categories of Patients and am resigned to not seeing one again. I am glad there are some Patients with wonderful Drs.

Sara Nolan

My doctor just told me she’s retiring. I’m panicking. I have EDS and ankylosing spondylitis. She was the first Dr to listen to me and take me seriously. I took 10 years to get a diagnosis. I live in a small town. Finding quality doctors is hard, let alone compassionate ones. I found out in public and couldn’t stop crying. She was a godsend and will be missed.

James McCay

I’m in NYC with (3) Bad Neuromuscular Diseases (two are Autoimmune Diseases too). I’ve been a Chronic Intractable Pain patient since 2009 (everything tried, nothing helps except HIGH DOSE Methadone).

YOU HAD A PAIN DOCTOR WHO TOOK 45-MINUTES TO SEE YOU! I’VE NEVER HAD A PAIN DOCTOR (5-different ones since 2003- due to no fault of my own) WHO SAW ME IN LESS THAN 90-MINUTES (and that was dumb luck- the average waiting time is 2-hours to this day!).

Hold onto that GREAT doctor you have now for DEAR LIFE, because he’s literally 1:1,000 Pain Doctors in NY State!

My current Pain Doctor used to be like yours – but my Pain Doctor ALLOWED the CDC/DEA and other non-pain doctors to get in his head by late 2017 & made him COMPLETELY PARANOID for no logical reason! Mine truly NEEDS psychological help, because he’s been using ME AS HIS PSYCH since late 2017 & I’ve only been an Advanced EKG Interpretation Technologist & Educator (and taught myself far more) for 16-yrs.

SO THIS IS INSANITY FOR 99.9% OF OTHER PATIENTS BESIDES YOU!

Plus you’re being outside of NYC helps a great deal. All doctors in NYC follow the leader like SHEEP & none will even take NEW Pain Patients for ANY REASON if opioids are needed, period!

I really hope you know HOW LUCKY YOU ARE! I talked to my doctor like you said you talk to your doctor. He had me on 180mg of Methadone b.i.d (twice a day), the additional 30mg he added per dose didn’t help me more, so I MADE HIM lower it back down to 150 mg b.i.d. again.

Less than 6-months later he LIED to all his patients & lowered everyone’s opioids by 10%-50% OVERNIGHT! He planned on weaning everyone OFF ALL opioids, but I wrote a letter that anonymously got to him & scared him MORE than the CDC/DEA. If it weren’t for my letter- one third of his patients would have COMMITED SUICIDE as he was their LAST CHANCE doctor for all these Chronic Intractable Pain patients with illnesses far worse than yours (no offense).

I’m happy for you!

Kat Koe

There are some people who still have doctors that understand the opioid crisis is a bunch of [edit] and continue to prescribe opioids. It appears that doctors who work for hospitals, large practices or a group of physicians are the ones forced to stop writing opioid medication. The independent doctors have morel leeway in writing opioids prescription. Thank for telling your story

Lynne Pendleton

Wow!!! He sounds amazing!!! I know many of us wish we could find a doctor with 1/2 the compassion of your “Dr. Welby”!

Deb

I am so glad to hear that you have a caring Doctor. I read all the stories on here hoping I see one someday that says this mess is over but I don’t think that is going to happen.
I had an awesome pain management Dr. I went to for 20 years. Out of no where he just one day moved out of state. He did leave us to a new pain clinic.
I go to my appointment a few months ago and a big sign is on the window , Dr. Is retiring next week. Glad to have been your Dr.
No referrals to another Dr or nothing.
My primary care Dr. Is writing my pain meds now.
To the cdc guidelines. I get 2 pills a day.
I can barely walk again.
I am back where I can’t move my head.
I have Chiari. It took over 20 years to find this so all the neurological damage had been done. I had decompression surgery for the chiari with no relief from symptoms.I have C5/C6 vertabraes removed and a harms cage with a plate and screws , I lost 65% mobility from that surgery. I have multiple neuropathies from all the neck trouble. The pain is unreal. The strong pain meds didn’t completely take all the pain away but it made it bearable. 2 a day is not good, 30 mg at that.
I know there is people worse than I am. I will just continue to pray for all of us.
May God Bless
Deb

Rosalind Rivera

Sir,
You are indeed exceptionally fortunate to have such a caring and sympathetic doctor and I for one am very, very happy for your good fortune. Hang on to that man for dear life as he is a rare breed indeed. I think that probably many family my and older doctors may have the same attitude where their patients nets needs were truly a priority. Today’s doctors are not only uncaring but essentially violating their oath to do no harm. I also believe as I have been a victim to one particular doctor that wielded his power and control over his patients and needlessly and knowingly caused them more harm than good. In my case, I was never listened to, dismissed, had my meds changed, reduced, others unneeded ones added and failed miserable at filling refills even when they were well overdo.
I finally had enough and one day just never went back. I’ve given up on filling grievances as they do no good and each and every time have found that the doctor did no wrong. What a joke and pain is no laughing matter.
I’m now losing confidence in my pain management do tow that I’ve been seeing for 8 years. I now feel unlike I did just a few months ago, that he really doesn’t care and is in it for the heaps more f money that these specialists get or is it steal. 2 minutes to write a script if and only then if I have the $ 150.00 required for him to do it.
Whatever happened to doctors that went I to their profession because they really cared about people and sincerely wanted to help people in pain????

Alan Edwards

This is one of the most hopeful and rare stories on NPR. The patient and doctor are victors in a century of defeat for chronically ill patients.

I am 56 and my working and social life was ended by ignorance, sheer hatred, incompetence and the uncaring FDA. Agencies like the FDA and deadly overreach of so-called peace officers, are harming the intractable pain community while reaping a bounty and killing innocent citizens at 3 in the morning because they may be treated for pain. Mass insanity is absolutely being fueled by the unhindered pockets of the CDC and FDA on every media outlet.

Hopefully, Richard Lawhern,his voice, and the few remaining on NPR will break the ice surrounding the cold hearts of the FDA and CDC.

We all deserve to live and work like healthy American citizens- even it takes an intrathecal pump for life.

And THAT’S why primary care Drs make BETTER pain management Drs than so-called “pain management specialists.” We know our patients’ backgrounds and most of us have the temperament of listening to our patients regarding WHATEVER their condition is. We take into account their global state of health and all conditions, NOT just that single issue. We know their life goals because we’ve KNOWN them. Not all primary care Drs are able to treat pain well just as not all are good at treating every type of condition. We all have our areas we know we can do well and those we find others to help us with our patients because we’re not as well trained, if we’re smart.

Mary Renda

I have scoliosis, major DJD with spondylosis and pain controlled by Oxycodone/ acetaminophen. It took great pains to find this nice country doctor. However, he is retiring this summer and informed me that ill need to find someone or something else. They told me they could refer me to the pain center which is a joke because they have signs in their office that state “We don’t prescribe narcotics”. A not very welcoming sign. I’ve found that if I want pain relief that invasive procedures will need to be done., such as spinal injections, implants of narcotics. It doesn’t make sense that invasive procedures are the answer to taking a non-invasive pill. How do I find a doctor in my area that could prescribe pain medicine?

Jo Anne W

I’m sorry your dental career is over. You worked hard to get that degree. Can you teach or anything else? So many could benefit from your knowledge and experience. I’m very happy you have a friend and dr who treats you with the respect you deserve…as we all do. I’m surprised the PMD didn’t at least give you professional courtesy. Oftentimes, patients are treated according to their socioeconomic standing…imo and experience. To the extent you can, get out there dr and teach the new folks what doctoring is all about 😉

LMC

Then you are blessed. I don’t go to my primary doctors office any longer. They keep wanting me to sign their opioid contracts and do urine tests. I informed them that I have a contract with my specialist who tests my urine. And unless they plan to start prescribing my meds then the subject is closed. I love when they say they don’t prescribe pain medications. My response is: no one asked you to. Therefore the contract and urine tests are if no use to you!

Would be nice to have your doctor educate all the others.

Heather Ford

I am sorry for your suffering, I understand the pain as CRPS is one of my many diagnoses. You are very lucky, I wish more of us were. Unfortunately your “pain specialist” experience is the norm. I, like millions, am not so lucky, and it’s worsened at an office where they all call themselves “CRPS specialists” when only 1 of them is (it’s not my doctor & I’m not allowed to switch to his partner.) When you get a wonderful, caring doctor, hold on to them, they’re a rare breed these days. I had an amazing pain specialist in NY, and my primary was phenomenal. Unfortunately I moved, and now suffer more in NC. Despite submitting to every (failed) painful procedure, following all instructions & rules, trying alternative therapies, and NEVER experiencing a high from opioids, failing a drug test, having an inconsistent med count or any issue with my opioids, I’m a casualty of the opioid war & no longer have any quality of life. My dr lied to my husband & I when he cut my meds the last time, and now all I’m told is “sorry, we’re doing everything possible, not our fault it’s the opioid war, you can look for another doctor“ (they know it’s not possible in my area, or good idea in this climate). I am happy to hear about your experience, but it makes me miss my NY home & medical team so much more.

Deborah Boyd

Thank goodness you have a GP that listens to you and that can help you.