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briarrose
03-04-2013, 08:13 PM
Hi everyone,

It's been a long time since I've started a thread. I saw my spine surgeon today for my almost 5-year check-up. I was hoping this would be my last visit to him, but this is not the case. He told me I have a degenerated disc between L2 and L3 (I'm fused to L2). I guess this shouldn't surprise me, especially since I've been having pain off and on in that spot for the past few months. It's been particularly bad the past 4 days. My surgeon also told me that I'm tilting forward slightly. He said this is from me adjusting my posture to accommodate the pain I'm having. He suggested physical therapy first, then injections if the therapy didn't help, and of course surgery if the pain gets too bad.

I'm hoping this disc problem doesn't become a big deal. I've been trying to ignore the new diagnosis from this morning, but my pain is suggesting otherwise. I'm so frustrated because I'll be starting a new job in 4 weeks and I'd hate to start out with back problems. What can I do for this pain? I'm interested in others' stories/suggestions/remedies who've had degeneration below their fusion.

Thanks in advance,

Shell

hasteffen
03-05-2013, 07:14 PM
this is the exact reason why I chose to be fused to the sacrum. I was told that there is a high probability of needing an additional surgery at SOME POINT if I fused to just L4 or 5. I am assuming it would be the same for L2 and L3. I was told that the weight of your spine would eventually take its toll on the lower vertebras and discs and degeneration would occur (more fast then had you not been fused at all). Some people think it is better to keep as much flexibility for as long as possible while others chose a "one and done" surgery. There really is not a good alternative or one right choice. We all make the best decisions we can. I wish you the best and pray that you will not have to endure another surgery. Maybe exercising and physical therapy will ward off any more surgeries? What about trying massage therapy as well?
Best,
Heidi

Susie*Bee
03-06-2013, 08:07 AM
Shell-- I don't have any answers for you but want you to know that I'm thinking of you and hope you can get some relief and find a solution. I'll be praying for you. Hugs.

Heidi-- there are many of us who ended our surgeries before the sacrum in order to retain a little bit of flexibility. My surgeon had said I had an 80% chance of not needing further surgery and I thought I'd play the odds. I don't consider that a high probability, as you put it. I guess time will tell, but I'm almost at the 6 year post-op mark and all is looking well with me.

loves to skate
03-06-2013, 03:40 PM
Hi Shell,
I am so sorry to hear that you have a degenerating disc. I have already tried PT and cortisone shots with no luck either in my SI joints or my hip. Do you know if you have a stenosis from the degeneration? Are you taking anything for the pain?
My degenerating disc is above my fusion at L1-L2 since i am fused from L2 to the sacrum. I will be seeing Dr. Hey in a few weeks. I have pain, but I believe my pain comes from the screws in my sacrum and pelvis so I want to discuss with him about removing them. I am also 5 years out. It really sucks. I have been very active for and old gal so I don't know if that has contributed to it. I also have a hip that has significant arthritic changes, so that will have to be dealt with sometime down the road. I can't take nsaids anymore since they were causing kidney function loss which I hope will improve as time goes by. That leaves me with either tylenol or Tramadol for pain.
I hope you won't have to have more surgery, but I guess neither of us knows what the future holds for us.
You will be in my thoughts and I wish you the best.
Sally

Confusedmom
03-06-2013, 07:50 PM
Sally, Will you please post what you find out about getting your pelvic anchors removed? I'm interested.

Heidi & others, I think the high risk of degeneration comes when you end a long fusion at L5. Or so I was told. Since mine would have ended at L5, we went ahead and fused to S1. Dr. Lenke said I would almost definitely be back for more surgery within a few years if we didn't.

Seems like Shell might have been okay stopping at L2. Sorry you're having so much pain!! Hope PT, etc. helps.

Evelyn

yacpatty
03-06-2013, 08:11 PM
This is such a sore subject for me. I talked to my surgeon three months ago before my surgery about fusing to the sacrum instead of only to L5. I am 61 years old....fused at age 13 T4-L2 and three months ago L4-L5. For some reason, he would not fuse to sacrum. Now I am sure I am looking at more surgery in the future. In addition, all my MRI reports showed my S1 being very stenotic and with nerve root compression. Can anyone give me any light on this? I feel all his reasons for not fusing to sacrum were just not justified. I just don't get it.

Confusedmom
03-06-2013, 09:26 PM
Yacpatty,

You're still unfused L2 to L3 and L3 to L4. Right? Maybe that's why he didn't go to S1. Still thought he could preserve flexibility? Also, is something different about your case because it was congenital, not adolescent idiopathic? Any structural deformities of the lower vertebrae that would have interfered with fusion? I just have to think Dr. Bridwell had his reasons. Have you asked him? I'd be curious to know his reasoning.

Also, I know you must be frustrated, but it's still early to judge your pain outcome. I hope it continues to improve!!

Evelyn

loves to skate
03-10-2013, 01:42 PM
Sally, Will you please post what you find out about getting your pelvic anchors removed? I'm interested.


Evelyn

Yes Evelyn, I will start a new threat after I hear what Dr. Hey has to say.

briarrose
03-17-2013, 08:58 PM
Thanks so much for the responses! Iím sorry it took me so long to write back.

Heidi Ė I know my surgeon wanted to keep me more flexible. I thought I would eventually have disc problems (maybe ~10-15 years later?), but I didnít think it would be so soon. Iíll look into PT when I start my new job. Thank you for the massage suggestion. I will look into it.


Susie Ė Thanks for your prayers and encouragement!


Sally Ė Iím so sorry to hear about your situation. Youíll have to let us know how your appointment with Dr. Hey goes. Did your surgeon or a pain management doctor do your cortisone shots? Did PT make the pain worse for you? Iím reluctant to start because I feel like it could logically increase the degeneration since we canít move the one portion of our spine. Iím just guessing on that. What type of exercises did you do?
I havenít been taking anything for the pain. I had a really bad day last week. I could barely walk up the steps to my house after work. I laid down the rest of the evening and that seemed to help things. Bending and crouching seem to irritate the disc.
I donít think I have stenosis. Can this be seen on an x-ray? Do you have stenosis from the degeneration? I have been wondering what stenosis feels like. For the past 6 months or so Iíve been getting this pain in my lower back that stops me in my tracks and takes my breath away. It only lasts about 2 seconds and then Iím fine. This happens about 2-3 times a month. Iíve been calling it ďlightning bolt pain.Ē I donít know how else to describe it.
I really hope you can find some answers from Dr. Hey. Iím sorry you canít take NSAIDs. Is the Tramadol helping? Thanks for your response.


Evelyn Ė It sounds like it was wise for you to be fused to sacrum. I wonder if thereís a way to prevent disc degeneration above or below fusions. Thanks!


Yacpatty Ė I noticed youíre in Harrisburg. Weíre not too far from each other. I really hope you do not need more surgery down the road. Like Evelyn said, Iím guessing your surgeon wanted to leave you with some flexibility. I hope your recovery is going well.


Thanks!

Shell

loves to skate
03-19-2013, 12:19 PM
"Sally Ė Iím so sorry to hear about your situation. Youíll have to let us know how your appointment with Dr. Hey goes. Did your surgeon or a pain management doctor do your cortisone shots? Did PT make the pain worse for you? Iím reluctant to start because I feel like it could logically increase the degeneration since we canít move the one portion of our spine. Iím just guessing on that. What type of exercises did you do?
I havenít been taking anything for the pain. I had a really bad day last week. I could barely walk up the steps to my house after work. I laid down the rest of the evening and that seemed to help things. Bending and crouching seem to irritate the disc.
I donít think I have stenosis. Can this be seen on an x-ray? Do you have stenosis from the degeneration? I have been wondering what stenosis feels like. For the past 6 months or so Iíve been getting this pain in my lower back that stops me in my tracks and takes my breath away. It only lasts about 2 seconds and then Iím fine. This happens about 2-3 times a month. Iíve been calling it ďlightning bolt pain.Ē I donít know how else to describe it.
I really hope you can find some answers from Dr. Hey. Iím sorry you canít take NSAIDs. Is the Tramadol helping? Thanks for your response."

Hi Shell,
I went to a PT that Dr. Hey recommended and he had me doing core strengthening exercises. It helped my core but not my pain. I went to a pain management clinic that Dr. Hey also recommended. Unfortunately that didn't help either. I probably should try water exercises, but I hate doing that. Yes, stenos comes from the degeneration and it sounds like to me that you have stenosis. I don't think stenosis shows up too well in an xray, but does show in an MRI or a CAT scan. Yes, Tramadol helps somewhat. It probably would work better if I took it on a regular basis, but I only take it when the pain gets to me. Right now, I line dance and zumba once a week each and try to walk a mile or so each week. I can't do much more because I have an arthritic hip that is giving me grief so I will probably need to have that taken care of before I can do anything more for my back at present. Cortisone didn't help the hip either. I see Dr. Hey next week. Thanks so much for your concern. I wish us both luck with finding solutions for our pain.
Sally

Jinseeker
07-05-2015, 09:30 AM
This is exactly why I am hesitant to undergo surgery despite my already 47 degree thoracic curve. As the years go by, it is a natural, inevitable event that we start losing our lumbar lordosis(arc) and start to get more bent over. I am seeing this happening with me as early as right now at only 31 yrs of age. It feels as if my back feels more at ease and the twisting of the ribs settles better when I round my lowerback, it is slowly becoming more structural since I feel my standing and walking posture has changed. My neck has started to crow too. Does this mean I am starting to lose lumbar disk health?

Correct me if I am wrong or just exaggerating and would like to be clarified by anyone here in the forums, but my assumption is if you fuse your spine like brianrose did, the free lumbar disks below will begin to conflict with the fusion above as it slowly and structurally loses its lordosis which is a normal part of aging, as a result that is what is causing all his pain that is unfixable except through an extension of fusion. I'd like to know how often and common this is, and if it is something that will happen to anyone who had surgery at some point? Do the patient just live with the pain, or is an extension of fusion a "guarantee" for everyone who had at least 2 lumbar levels fused, in which case this should've been carefully presented by your surgeon in the official disclaimer prior to signing up for surgery.

LindaRacine
07-05-2015, 11:21 AM
This is exactly why I am hesitant to undergo surgery despite my already 47 degree thoracic curve. As the years go by, it is a natural, inevitable event that we start losing our lumbar lordosis(arc) and start to get more bent over. I am seeing this happening with me as early as right now at only 31 yrs of age. It feels as if my back feels more at ease and the twisting of the ribs settles better when I round my lowerback, it is slowly becoming more structural since I feel my standing and walking posture has changed. My neck has started to crow too. Does this mean I am starting to lose lumbar disk health?

Correct me if I am wrong or just exaggerating and would like to be clarified by anyone here in the forums, but my assumption is if you fuse your spine like brianrose did, the free lumbar disks below will begin to conflict with the fusion above as it slowly and structurally loses its lordosis which is a normal part of aging, as a result that is what is causing all his pain that is unfixable except through an extension of fusion. I'd like to know how often and common this is, and if it is something that will happen to anyone who had surgery at some point? Do the patient just live with the pain, or is an extension of fusion a "guarantee" for everyone who had at least 2 lumbar levels fused, in which case this should've been carefully presented by your surgeon in the official disclaimer prior to signing up for surgery.

I don't think anyone really knows what happens to patients who have scoliosis fusions as adults. I had my original surgery about 22 years ago, in my early 40's. I became friends with several fellow patients who had surgery around the same time. Some of them have avoided additional surgery and some haven't.

Although not based on any published research, I'm guessing that somewhere between 50-70% of people who have scoliosis surgery as an adult will go on to require additional surgery at some point. Many of those would be because of degeneration below the fusion, but not all. (Unfortunately, most scoliosis research that includes outcomes is based on 2 years of follow-up. That's what publishers want, but I think what most patients want to know is their lifetime risk. In the US, it's very difficult to keep track of patients for 20+ years.)

If it were my choice, I would avoid surgery if I felt that was a reasonable possibility. (Some of us have far too much pain to have a reasonable quality of life without surgery.) Keeping strong core muscles is probably the most beneficial thing you can do to try to avoid surgery.

--Linda

titaniumed
07-06-2015, 01:55 AM
Hard to comment on the bending over or the lordosis shape changing without an x-ray......I have noticed a slight forward lean at times, but my sagittal x-rays looking from the side are in very good shape balance and plumb wise. Side view x-rays are probably more important than the coronals...they decide the trickier surgical procedures, like osteotomy.

There is no doubt that I have had problems with my disc health.....I donít have the issues that Shelly has since Iím fused to the pelvis (not my choice) but I do have herniated or protruding discs in my non-scoliotic neck. I had my whole spine fused only to find out my neck is also compromised. I donít think weight was a main factor. My neck issues were mentioned in my hospital reports upon my scoliosis surgeries. This leads me to believe that I, or we, have ďdisc issuesĒ to varying degrees.....in my case, on many levels. The lumbar levels go 1st, then itís the neck in 2nd place.

I wish I was 31 again so I can rock and roll. (smiley face) Yes, I had pain, and yes, scoliosis surgery was on my mind, but not all the time.....I didnít let it make me too crazy, and I learned to deal with the pain. Linda is right about keeping your core strong. Skiing throughout my life kept me in good shape, and I had more pain issues pre-surgery when I wasnít exercising. Its amazing how that works.

I would also wait on surgery. I waited 34 years till I was 49, and my decision was based on extreme pain. My surgeon wanted to know why I waited so long, and well, I didnít give him a verbal answer, he could see in my eyes. But in my case, if I had to do it again, I would do it a few years sooner, like in my early 40ís. Again, based on pain and quality of life.

It seems that our discs are a problem with or without surgery. Unless you are fused the whole way, and no-one wants this, there is a high probability that resulting disc pain (nerve or cord) will happen. Degeneration is part of life.....

Scoliosis surgery is serious surgery. Patients need to have all their questions answered even if they donít know the questions. They need to learn the questions. Surgeons donít volunteer many questions, because of the extent of the material. If you had millions of dollars to fly into space, would you fork over the money without knowing the risks of space travel?

Its amazing what we know, and what we donít know, but 10,000 pc puzzles do get solved in time.

I hope Shelly is doing ok now....discs do heal themselves to some extent. We Do actually heal! ...........what a concept! Keep this in your belief system, it works.

Ed

Jinseeker
07-06-2015, 08:19 AM
Thanks for the responses.
I understand it is just an educated estimate but that probability rate of 50-70% is just astounding, especially since there is no 20+ year follow up, the need for an extension of fusion is just within 2 decades and shorter after the original operation was done.
Keep us posted updated Linda with the report/study you are doing on fusion levels and quality of life, Im curious to know that
the most of the other 50% you are referring to that didn't need an extension later on in life, were patients who were only originally fused above L1. I for one would never agree to have surgery
if I was going to need an extension in the future and end up with a fusion to the sacrum, i'd probably rather live with my pain if that were the case.

cathydrew
07-06-2015, 09:49 AM
if I was going to need an extension in the future and end up with a fusion to the sacrum, i'd probably rather live with my pain if that were the case.

I'm three months post op T3-S1, and glad I went all the way down...and I didn't undergo this surgery just because of pain, it was to halt a progression that would eventually kill me. I knew what I was getting into thanks to this forum, but honestly I really have had it much easier then some. I'm not bending lifting or twisting of course, but I do not feel limited especially in self-care and independent tasks. Don't be quick to assume that fusion all the way to the bottom is going to change a life drastically especially at your young age. Also, I'm glad I waited till I was 53 years old and really needed it, I have remained healthy and fit all these years and my core muscles have always been strong but sometimes you just cannot prevent scoliosis progression. Thanks to this forum I know that I am only going to get better and actually regain some flexibility and even if I don't I would be happy to be just the way I am for the rest of my life, even though I still have postsurgical pain and stiffness I know that my spine is stable. I too have a couple bulging cervical discs but hopefully with physical therapy that is starting soon I can achieve some relief from that discomfort which isn't even that bad yet. Every single scoliosis patient is different and obviously I wish I didn't have had to have the surgery at all...some scoliosis patients will never have to have it, but when your spine curves progressively in the course of a few years it's really the only option. My advice is do your research find the best doctor and then another opinion before you make this major life changing decision and wait as long as you can comfortably wait stay in shape and stay healthy eat right exercise yada yada yada.

Pooka1
07-06-2015, 11:25 AM
Thanks for the responses.
I understand it is just an educated estimate but that probability rate of 50-70% is just astounding, especially since there is no 20+ year follow up, the need for an extension of fusion is just within 2 decades and shorter after the original operation was done.
Keep us posted updated Linda with the report/study you are doing on fusion levels and quality of life, Im curious to know that
the most of the other 50% you are referring to that didn't need an extension later on in life, were patients who were only originally fused above L1. I for one would never agree to have surgery
if I was going to need an extension in the future and end up with a fusion to the sacrum, i'd probably rather live with my pain if that were the case.

Apologies if I asked you this... do you have one structural curve or three?

If just the one middle one, you might be able to level L1 or L2. Maybe if you can avoid further progression you can have a fusion stop at L1 now and hopefully only need one surgery (if your lumbar straightens enough).

Have you asked a surgeon if you are in a time window about staying above L1 if you move fast enough? Would you want to know if you still have the option? You are non-progressive now and hopefully it will stay that way and this is a mute point.

Also you might want to ask if your disks are expected to fare better within a straightened spine or within your present spine even if it doesn't progress much more. Dr. Hey harps on this disk loading issue in curved versus straighter spines. It is possible they might know if your disks will or will not hold out over a lifetime in that configuration since you are relatively young. Only a surgeon will know.

Jinseeker
07-06-2015, 10:48 PM
Thanks for asking.
I have 3 curves, but the middle big thoracic one is the main one. I'm really not sure if the top and bottom curve is structural or not, correct me if I am wrong but I always had the understanding if the secondary and 3rd curve counteracting the main one are small they automatically count as compensatory?

From the side bending tests it looks as if both top and bottom curves don't really straighten, they still have a slight curve in the opposite direction, but that could be because you are also using your lumbar to side bend so it makes sense if it is not straight so it is really hard to tell. Also the lumbar hump and higher shoulder is always there no matter my posture is and how I bend.

I did ask that to my surgeon how a straight spine that is fused will fair with the current loading of my lumbar disks. His answer was, probably just the same and he admits he doesn't know at all and can't tell. The other surgeon though told me I may eventually blow multiple lumbar disks along the way, but he sounded more like a salesman. Also if my fusion ended at L1, I'm afraid I might not have as good of a correction at all, most curve patterns like mine seem to end at L2 or L3. so I'm afraid my correction may be so minimal that it probably is not worth getting it done if It ended at T12 or L1. This is added to the fact that In my side bending to the right x-ray, my curve goes down from only 47 to 34 degrees. Side bending to the left increases it the other way around. I also can't touch my toes when I bend forward, the farthest I can go without bending my knees is my tip of the fingers reach about my calves mid length. My chiropractors tell me I have a very stiff spine, maybe that's the reason why my curves haven't progressed despite already being over 45.

I also don't know if I really believe what you say about one stop shopping if the fusion ends L1 or above, since I have scouted this forum and multiple patients have still had degenerative disks 5 +10 years after even If they were fused at L1 or L2 like the person who started this thread did.

Cheers.

Pooka1
07-07-2015, 05:39 AM
Thanks for asking.
I have 3 curves, but the middle big thoracic one is the main one. I'm really not sure if the top and bottom curve is structural or not, correct me if I am wrong but I always had the understanding if the secondary and 3rd curve counteracting the main one are small they automatically count as compensatory?

I don't know about that but I bet you are correct. What have the surgeons told you in terms of how many curves you have. Both my daughters had three curves because if you have a structural thoracic, it has to curve the other way above and below unless you have a total "C" curve involving your entire spine. It doesn't mean they are structural.


From the side bending tests it looks as if both top and bottom curves don't really straighten, they still have a slight curve in the opposite direction, but that could be because you are also using your lumbar to side bend so it makes sense if it is not straight so it is really hard to tell. Also the lumbar hump and higher shoulder is always there no matter my posture is and how I bend.

Neither of my daughters could straighten their compensatory lumbar curves on side bending. Yet both lumbars came to match the straightened thoracic on their own. Because one kid was hyper-corrected to <10* in the thorax, she now has no curve in her lumbar. It is straight and loading evenly presumably. This is why I think Boachie says a fusion to T12 or L1 can stabilize the lumbar for as long as we know. Also the other kid still has a residual ~25* curve because you can't hyper-correct that without leaving a high left shoulder and I found a paper showing that residual curve in that type of thoracic curve is stable to at least 20 years out with no fusion extension necessary. Small sample size, though.


I did ask that to my surgeon how a straight spine that is fused will fair with the current loading of my lumbar disks. His answer was, probably just the same and he admits he doesn't know at all and can't tell. The other surgeon though told me I may eventually blow multiple lumbar disks along the way, but he sounded more like a salesman. Also if my fusion ended at L1, I'm afraid I might not have as good of a correction at all, most curve patterns like mine seem to end at L2 or L3. so I'm afraid my correction may be so minimal that it probably is not worth getting it done if It ended at T12 or L1. This is added to the fact that In my side bending to the right x-ray, my curve goes down from only 47 to 34 degrees. Side bending to the left increases it the other way around. I also can't touch my toes when I bend forward, the farthest I can go without bending my knees is my tip of the fingers reach about my calves mid length. My chiropractors tell me I have a very stiff spine, maybe that's the reason why my curves haven't progressed despite already being over 45.

You might be right about that being the reason you are non-progressive. Sounds reasonable! Does that give you pause about doing PT which might loosen it up? It might be a double-edged sword. I think you may have mentioned this in the past?

You have to ask each of these guys where the fusion would start and end in order to make a rational decision about surgery. It's a huge part of the picture given Boachie's statement on the matter of one-stop shopping or not with thoracic curves. People don't know to ask and surgeons don't talk about this or how it might create a time window for progressive curves and I don't know why they don't. Maybe they don't agree with Boachie but I can tell you our surgeon told my kid with the now perfectly straight lumbar and me that this was one-stop shopping.


I also don't know if I really believe what you say about one stop shopping if the fusion ends L1 or above, since I have scouted this forum and multiple patients have still had degenerative disks 5 +10 years after even If they were fused at L1 or L2 like the person who started this thread did.

Cheers.

The Boachie quote is about ending above T12 or L1, not L2. Our surgeon said every vertebra into the lumbar you go, the risk of needing an extension goes up although he seemed to indication L2 was okay in his opinion in terms of likely not needing an extension. All this is predicated on the lumbar straightening enough on its own. That said, the OP looks to have a pretty straight lumbar after surgery so I am wondering if straightness doesn't matter if you go to L2 or below per se. Who knows. Maybe they will all need extensions after 50 years. What is apparently known is even the Harrington rod thoracic fusions seem stable years out. The people having flatback and issues are the ones with lumbar curves also it seems. Clearly lumbar and thoracolumbar curves have not been solved to the extent that thoracic curves have been solved. That's why people with only thoracic curves should avoiding snatching defeat from the jaws of potential victory. I feel like my daughters may not be victorious in the long run but they are avoiding defeat for most of their life because of their fusions. They leading completely normal lives with no pain. Scoliosis is off their radar.

Good luck, Jinseeker.

briarrose
07-16-2015, 07:52 PM
Hi everyone,

I haven't been on the forum in quite some time so it was nice to see an old thread revived.

I'm 7 years post-op now and deal with daily pain, mainly in my low back and left leg. The disc problem seems to be under control at the moment. I injured myself pretty badly when my husband and I moved back in November of 2013. I could barely walk due to low back pain. It was a bad time since I couldn't help empty boxes. I definitely still have low back pain and have to be careful not to reinjure myself. I do very little bending at the waist. Getting out of bed in the morning is always painful as is standing up and walking after sitting, though the low back pain generally subsides in a few minutes.

I still get the "lightning bolt pain" that takes my breath away. It used to be only up and down my spine but now it seems to occur anywhere in my back.

My latest issue is left leg pain that generates from my lower back (near iliac crest). I had been assuming this was sciatica, but my surgeon thinks it's a sacroiliac joint issue. He recommended pain management with injections, but I have not gone yet. This pain gets really bad sitting in certain chairs and even when walking. At times I have not been able to put weight on my left leg due to the pain. I've been having problems with my left foot as well. I saw a foot orthopedist a few weeks ago because my foot was swollen and I was having nerve pain in my middle toe (also couldn't bend my toes or spread them apart). He looked at my history and decided that my problem was due to my back. I'm not completely convinced of this as I think it may be a Morton's neuroma.

My quality of life has definitely decreased since my surgery. My feet and legs always hurt even though I where expensive Dankso shoes. I am generally in some sort of pain. I work 8-9 hours a day as a chemist and find I have to rest in the evenings and weekends to prepare for my next work shift. I don't regret my surgery, but it may have been better to wait a few more years. I do not have children yet and at 33 I'm running out of time, though I fear what a pregnancy will do to me.

Shell