Nerve damage imaging-going crazy waiting!

CTLMom

I am so sick of waiting for doctors to communicate with each other and with me!! I have been dealing with pain from radiation fibrosis and lat flap reconstruction for over 4 years now! I have been shuffled from one doc/department to another looking for answers, Last winter I was scheduled for an intercostal nerve block which turned out to be a huge cluster of an experience. I brought pictures that my PT had marked so that they would know where to do the injection. They didn't use them and went in to T10 which was not correct! When I was discharged they sent me home with instructions to care for the site of a bone biopsy! The paperwork had my name on it with and entirely different procedure. When I went back to the doc that ordered it he suggested doing a nerve resection. However, despite knowing he is highly qualified in peripheral nerve surgeries, we still have not identified which nerve(s) are involved. Since I already have issues with scar tissue and adhesions I am not comfortable having a surgery without knowing exactly where the problem is located. I requested having a MR Neurography which he agreed to. Covid hit a week later and everything has been delayed. I finally got him to answer my email (4th time) and he told his scheduler that he talked to the radiologist and to schedule me for an MRI that was nerve specific. To my understanding this is NOT the same as a Neurography! This is a big teaching hospital and yet this surgeon told me previously that it does not have this particular technology as of last March. I don't see anything of their website to indicate that has changed. Of course no one has called yet to schedule anything. I know he is a great surgeon with fantastic bedside manner but I just don't want to take a chance going in blind without having as full a picture as possible. I'm going to ask specifically what type of resolution that this nerve specificentails. If it is not high enough and or the radiologist doesn't have the special training to read neurographies, I will be right back to the beginning!

Has anyone else had this type of experience? It is so exhausting dealing with pain every day. Sorry for the long rant, I'm just feeling very frustrated today!!

Thanks for listening!

flashlight

CTLMom, Is there anywhere you can go for a second opinion? I can understand why you don't want to start over, but it doesn't sound like they are helping. A nerve resection sounds extreme. Have you been on gabapentin or another nerve med?

CTLMom

Flashlight,

This doctor is actually the 4th doctor I've seen! I have been told, and have read, that the areas where my nerve and muscles pains are located are very difficult to diagnose. So, I am trying to be patient. I have tried Gabapentin and Nortriptyline. I had to stop both because of horrible side effects. They didn't help me anyway unfortunately. At this point I have told these doctors that before I agree to take any other of these types of medications I want to know what is causing the problem! If they can find and repair the issue I would prefer that to continually taking meds. It's so frustrating to have to take so much time to do your own research to try to get to the right type of doctor. I absolutely feel that when things get very complicated doctors tend to try to mask with medication because they just don't have much time to devote to one patient when they have and overabundance of other ones to deal with. I do feel bad for them. It is a tremendous responsibility. However, we keep pushing forward.

I appreciate your suggestions. I'm interested in anything people can offer that could possibly help!

flashlight

I am sorry this is happening to you. I'm interested in what you are going through because I think I might have the same thing. It started with a frozen shoulder, then diagnosed as breast lymphedema. Therapy did help to get the swelling down in my shoulder, neck, and upper chest. I was reading about soft tissue fibrosis caused by lymphedema. They used a low level laser treatment. a-new-treatment-for-soft-tissue-fibrosis-in-the-breast.pdf wounds international. I think there is a forum for radiation fibrosis syndrome something like patients like me? Good luck to you and I hope you get some answers soon.

MelissaDallas

CTLMom, is it in an area where they can’t do an EMG (electromyogram)?

CTLMom

MelissaDallas,

Multiple doctors have told me that an EMG and would not be helpful in this case since they don't know exactly where to test and the neuromuscular pain is over multiple areas. That is why I think the MR Neurography would show the most information.

Flashlight,

Some close friends of mine do the low level laser treatment. I was going to try it until the physiatrist said she didn't feel the risk was worth it. The laser info says its not recommended in previous cancer patients however I've read mixed things about that. I think it is probably safe for me but I still want to find out what is causing these problems. I have been doing PT for 4 years now and I feel that is why I am able to be as functional as I am at this point. I'm sorry that you are experiencing similar symptoms. I hope it is not on your dominant side like it is if for me. It's very limiting physically!

Thanks everyone your all your input!

CTLMom

Just an update after my last post. I had the "nerve specific MRI" a week ago yesterday. As of today I still have no results!! I left a message on Friday with no response so I called the office yesterday and spoke with the secretary. He said he saw only partial results on his computer but that maybe my doctor had the full report. He said that he would talk to the doc and find out if I needed to come in for an appointment (1.5+ hours away) or if the doc was going to call me. I still have not heard anything and there are no results on the patient portal either. I'm irritated but of course am getting fears that something serious was found! Even if so, why would they make me wait so long? It's so frustrating!

CTLMom

OMG! the wrong test was done! I've been waiting for numerous months to have my "nerve specific MRI" and finally got to read the report. It was a standard MRI report. Never mentioned one thing about any nerves at all! I'm SO frustrated!!! I've left two voice mail messages and an email and have not received one response. My husband and I wasted half a day to go have this done and all for nothing. I'd like to send them a bill for our time!

MinusTwo

Oh no... So sorry. And maybe back bill the MRI charges.

ShetlandPony

Grrr! They need to get you in for the right one within a week. No waiting for weeks again. Have you talked with the doctor who ordered the special MRI? Let them go to bat for you.

CTLMom

I have left multiple voice mails and sent an email which had a read receipt so I know it was received! I have still not heard anything from the doctors office! I am going to try to call again today. This is beyond aggravating! He is a very good doctor so I am at a loss as to why I'm not getting any explanation. Pain isn't on hold while I'm waiting unfortunately...

ShetlandPony

Once I did a sit-in. I went to the office and informed the receptionist that I would wait until someone could talk to me. No, the promise of a phone call would not do. Then I sat down. A nurse came out and answered my question. (It was a serious issue.) If a sit-in is possible during covid depends on how things are being done where you are, of course.

Is there anyone above the doctor? Is there a patient advocate? An advocate with your insurance company?

CTLMom

I finally got through to the secretary and was told that the doc has been super busy in the OR so has not responded to me. He said the MRI instructions were very specific so the correct one should have been done. He made a virtual appointment next week (first available). I said the report doesn't mention anything about nerves. He obviously can't say anything either way.

This morning I got a response from my doc that said no abnormalities were seen on any of the nerves within the scan and that is why there is no reference to any nerves on the report. Does that even make any sense? I find it bizarre. He asked me to make an in person appointment to discuss where to go from here. I don't even know what to say at this point...

ShetlandPony

That sounds vague. Did the doctor confirm that the correct scan was done? It does seem strange that no mention of nerves was made, not even, “Such and such nerve blah blah unremarkable blah blah normal...” Can you get a copy of the report and see how the test is labeled and read it all?

CTLMom

Sorry ShetlandPony! I hadn't noticed your response. The doc was very vague about the results when I had a Zoom appointment with him on the 7th. I tried a few different ways to ask him and get and answer but got nothing. I am ordering the CD of the pictures from the hospital. I have researched this enough to know if it is wrong when I see the pictures. Honestly, this has been such a busy month work-wise I haven't had time to finish filling out the 3 order forms they require!! My PC read the report results when I was in his office last week and he agreed with me that is looks like a standard MRI to him as well. It is very frustrating because I don't know if it was the radiology department that screwed up or the whole thing (their ability to do a neurography) was a hoax in the first place. I did decide with my nerve doctor to try another intercostal nerve block. I sent him current pictures of my back and flank that my physical therapist marked and made notes as to where to do the block. Unlike the last time, he is including the pictures with his order so that they don't mess it up again and do it on the wrong level. I don't even know if these nerves are the only problems but it's worth one more try. Of course I had to contact the doctor's office yesterday because nothing has been scheduled yet. It's ridiculous all the waiting patients have to do to try and find some answers and relief!

CTLMom

So I finally have an appointment for the second diagnostic nerve block on Wednesday. I'm not getting my hopes up but even if it gave a little bit of relief it would be worth it. I was wondering if anyone has ever ordered a second opinion MRI reading online. I've looked at several websites and have read that numerous people have had changes in diagnosis or at least not such and ambiguous report. I would like to do it before I go on Wednesday. I found one site that will do it for $199.00 which I don't mind paying. The doctor that is doing the nerve block is the one that was in charge of my "nerve" MRI. If I get a separate reading I would like to question him about it when I go in there, after he is done sticking the needles in my back of course.

CTLMom

New update: So-I haven't felt any better after my T6 intercostal nerve block on the 2nd and yet I did initially while on the table and for a little while afterwards. Now I know why...they didn't inject the steroid only the anesthetic. This was apparently just diagnostic. Something my doctor asked me (and after I answered) made me stop and think. Then, on the website I looked at the medications used. At least the way I'm feeling makes sense now. I see him on 1/21 to discuss what to do next. This is SOOO frustrating! They indicated to me that there was steroid as well the day I was there. Pain is awful today and I keep getting muscle spasms so it is making me especially aggravated at how long this whole process is taking!

flashlight

CTLMom, What a mess! I wonder why he didn't tell you that. Very frustrating. I had a nerve block before my lumpectomy and it didn't work at all. My SNL shattered his collar bone for the second time, he had a nerve block that lasted 72 hours and was pain free. I wonder what was the difference. I hope you get some relief soon.

JayC10

I literally feel your pain. I'm a RN of 37 yrs and it's been interesting being "on the other side." I had Mastectomy and lymph nodes resected in May 2020. Then 2 more surgeries in June and eventually removal of the dam tissue expander. I have adhesions/scar tissue galore. Feels like rocks in my chest. I've had what I call nerve pain since the summer. Recently completed 25 radiation tx and now developing fibrosis in L lung..joy. I've been to 2 pain management Dr's. The first ignored the surgeons suggestion for a nerve block and did trigger point injections for 4 weeks. No relief. Second Dr told me he would order something for pain Ordered the wrong thing which made me sick. I don't tolerate opioids so it has pretty much been a nightmare. I have not been able to perform my job since FEB 2020 and am just about broke. Tired of complaining. Tired of being in pain and so tired. Sorry you are having similar difficulties. I have a coleage that went through this as well.

Moderators

JayC10, we send you many ((((hugs))))). Glad you found us.

CTLMom

JayC10,

I'm so sorry this pain has impacted you so much! Radiation does such a tremendous amount of damage!! Did they put you on pentoxifylline and vitamin E after you were finished with the radiation treatments? My cancer rehab doc put me on that a while ago and it is supposed to help with the radiation fibrosis. For me, it had already developed so the impact isn't probably what it could have been if it was the protocol back in 2013 when I had my radiation done. You are not too far out from the treatment so it could very well help to avoid further fibrosis developing. I'm sorry you are already experiencing issues in your lung. I was fortunate that the radiation oncologist that I had developed the protocols to avoid the heart and most of the lung on the left side. Although it meant that I had to travel 1.5+ hours to get to the hospital for treatments for 6 weeks, I am grateful. I can't imagine how awful it must feel having that to deal with in addition to the pain you have. Have you found that many of the doctors don's seem to be familiar with the extent of the pain that all the surgeries & other treatments can cause? I have been to 4 different doctors already to try and figure out what is causing all the pain and discomfort! Most of them have only offered medications i.e. gabapentin, Nortriptyline, Cymbalta (I never took this one because I take Adderall XR which they had in their records.) The other two had horrible side effects and I had to stop them. Neither helped with the pain anyway... It is so unfair that no one seems to be able to think outside the box! I actually am going to see the nerve doc that ordered the intercostal nerve block on the 20th. I don't know if you had read the stuff I posted about the "nerve MRI" I was supposed to have had done. This is the doc that said that it was the correct test which I now know for sure was not! I don't even know how to address the issue. He is super nice and enormously talented so I have no idea why I'm being lied to. Plus I want to know why they did a chest MRI if my pain is coming from my thoracic back!!

Sorry for the long rant. Like you I am incredibly tired of this whole thing and being in constant pain. It is just wrong that women like us can't seem to get answers and relief!!

JayC10

Thank you XO

JayC10

CTLMom,

I have read your posts. Never even heard of a 'nerve MRI'. Rant away baby, this is the perfect platform. Plus we are here to support and help if not just to commiserate with others with similar experiences. . My pain started after the 3 surgeries and the 'numb' areas that 'woke up' during radiation were and continue to be causing horrific pain. PT helps, but I've been going to a lymphedema breast special therapist that's wonderful since Sept 2020. I feel like I'm not making significant progress. I really want to be able to go back to work. I feel like I've lost my identity - such a big part of my life as a RN since age 20. I'm on Gabapentin and it helps a little bit. unable to tolerate opioids or other pain meds other than tylenol.

I have found that the breast and plastic surgeon did ignore my pain issues until I was unable to get into the position for my radiation mold due to not having full range of motion in my L shoulder after surgeries. Then I saw a pain guy who did trigger point injections for 4 weeks. He was unable to inject anything into chest area due to rock adhesions. They were painful and unfortunately did nothing for the pain. I'm currently fighting insurance - again - they cancelled my thoracic MRI Wed. due to insurance refusal. Pain guy finally agrees to do a nerve block and he wanted the MRI. The other pain MD I saw who gave me the incorrect RX..died soo I won't be seeing him again. Soo very very frustrating. Fighting for care. I'm sorry to hear of your on going issues with the medications. Side effects can surely be nightmare from hell. Best of luck with your procedure on the 20th. I go for a CAT with contrast next Thurs. for the lung fibrosis. I've been on strong inhaled steroids since Dec and just had it renewed.

Let us know how it goes. Will be thinking of you and in your support corner.

Hugs, JayC10

finallyoverit

CTLMom ~ I’m just seeing your posts, but a wanted to grrrr along with everyone. What a frustrating experience for you! And as you said, the pain doesn’t stop while all of that was happening. I just was introduced to scrambler therapy. Have you looked into it? I’ve struggled with nerve pain for 4 years and just found out about it. I’m making an appointment to meet with the doc at Johns Hopkins who spearheaded its use for neuropathy. Apparently they use a machine to send “new” signals to your brain to not interpret the signals coming from the damaged nerves as pain. Lots of people have found relief.. and insurance is starting to pay. I checked with mine and they will pay with a pre auth. I figured it was worth a shot. I’m tired of dealing with this 24x7 nerve pain. I hope you find some answers and relief!

CTLMom

Sorry to just be responding now. Tax season has been keeping me spinning! However, I've done my part now so I have time to answer.

My appointment on the 20th went ok. He is a super nice guy which helps. He seemed to really enjoy the fact that I asked for a more detailed description of the surgical repairs he proposed. He actually got up all excited and drew a picture of the intercostal nerves (in black) and the muscles (in blue) and showed how the nerves are cut and repaired. The basic idea is to stop the brain from firing pain signals and rewire the nerves for the job they should be doing. It's a lot to digest. He said he would send me some literature on this type of procedure to help me learn more about it. (Almost 4 weeks later I still haven't received anything...) He definitely seemed happy that I have a great deal of medical curiosity! Also, he felt that doing nerve imaging of the L thoracic back would require too wide of an area to get the detail necessary. I totally disagree!

However, I recently noticed while reading the notes from my visit that there were a lot of things that were incorrect! The person that was recording the info was in the room with us typing on her computer while the doc and I spoke so I don't understand how some things could be so wrong! Among other errors the notes describe a physical exam including a description of the chest wall skin. He never put one finger on me and I had my shirt on the whole time!! It also describes me as having "neuropathic pain of her left chest wall following second surgery for breast cancer". That is NOT when my problems started or an accurate description of the pain locations! Why do doctors/hospitals have us fill out so much paperwork on the background of our symptoms if they are not going to read it! I am going to email him again to ask for this surgery info and also include a detailed description of the timeline and locations of my pain issues. I think these docs are focusing too much on the chest wall pain and spasms rather than the fact that the pain is originating in the thoracic back and referring around to the front. Before I even think of letting anyone cut into me again I want to make sure that they completely understand what is going on!

JayC10- Several of the doctors that I have spoken to have never heard of the MR Neurography. I'm dumbfounded at how doctors that specifically work with nerves and pain are not familiar with this technology. I'm so sorry that you are having to fight with insurance on top of dealing with the pain and frustration from all this crap. How did your lung CT go?

finallyoverit- I have heard of the scrambler therapy but have not really looked into it. Kind of a similar idea to the surgery my doc described to me. I will be very interested to hear what your experience is with this treatment! If pain could be stopped with something that doesn't require surgery or medications it would be awesome!

Btw the docs notes also said that I have no discomfort in my arm. Again, not what I said!

Hugs,

CTLmom

CTLMom

I haven't been on in a while so I wanted to update my continued nightmare. Due to someone's stupidity I got Covid at the end of February and was really sick for a couple of weeks. My son got it and unfortunately was with my dad before any of us knew we had been exposed. My dad got really sick as well and went into the hospital on 3/6. It was touch and go for a while but he was eventually move to a long term acute care hospital for intensive pulmonary and physical rehab. He was having some improvements for a while and then suddenly went downhill quickly due to pulmonary scarring from having had Covid pneumonia. Long story short-he passed away on 5/15. I feel like I have been punched in the gut over and over again. I am still trying to get everything done and settled while grieving at the same time. We were very close, which makes it all that more difficult. My dad was super neat upstairs in his house but a pack rat in the basement. It is going to be a long time before I can sort through everything to say the least. My mom passed away a few years ago and I am an only child so it is all on me.

Needless to say I have not been able to focus on my own pain issues over the last few weeks with my dad's situation. I have not been in for PT and I am really feeling it. She is so booked that my next appointment isn't for another couple of weeks! I had to cancel my appointment with the surgeon and I'm going to reschedule my next one because I am not ready for it. The funeral is next week and it is just too much for me to have that and such serious discussion with my doc while my brain is so scattered!

Also, I wanted to ask if anyone has noticed that the shoulder on the same side as the lat flap surgery is higher that the other side? I have noticed that it is more pronounced lately as well as my spine/paraspinal muscles feeling like they are pulling more to one side. It feels like things are getting tighter for me. I know the massive stress is not helping either...

Sorry to be such a downer today but sadly this is my reality right now.

CTLmom